Day Thirty-Seven:
Drum roll, please... the verdict is in. NEGATIVE. I do not have the DQ2 or DQ8 gene. Shocked? No. Confused? Yes. Happy? Well, I think so. Sounds weird, I know. Who wouldn't be happy, right? I just got saved from a horrible disease that would affect the rest of my life. Of course I'm happy about all of the obvious. But now what? Is it something worse? Or just something different? The big question is the WHAT... we are back to square one. Why do I have positive antibodies? Now I'm being referred to a new specialist, a G.I. who deals with bacterial overgrowth. Possibly something there? I am frustrated that another month has gone by, and we seem to be no closer to an answer. Interestingly enough, I read that 97% of Celiac patients have one of the two genes I DON'T have. Could I be in the other 3 percent? I guess we'll find out soon enough, as I now begin the process of reintroducing gluten into my diet. This will enable me to manage my symptoms (will the severe fatigue set back in?). My joint pain hasn't changed much, and my headaches, well, although I've lowered the dose of meds., I haven't seen too much improvement there either. Where do I go from here... and why do I feel like my name is getting closer and closer to the pages of a medical journal????? Shouldn't I be celebrating? I am staring at a loaf of bread and thinking, "what's next?"
Friday, March 2, 2012
Thursday, March 1, 2012
Day Thirty-Six:
Still waiting. I haven't posted lately because my computer died and I'm waiting for a new battery and power cord. Regardless, there is not much to report because it's been two weeks since the genetic test and I still have no answers! I am feeling good... Definitely better, but not great. When can I expect to feel great? Ever? Is this even the right diagnosis? Am I raising the bar too high hoping to feel fantastic? Such a drastic life change warrants an expectation of a drastic change in how I am feeling, right? So many questions... I just need my results so I know this path is the right one...
Thursday, February 23, 2012
Day Twenty-Nine:
As I type I'm eating Trader Joe's Gluten-Free Rice Pasta and Cheddar. AKA- Mac'n Cheese! YUM. A bit of a different texture (chewier) than typical Kraft, but the flavor is fantastic. I can't get enough of it. In case you're wondering why I'm eating this at my computer during dinner, I'll tell you that it's because Stop and Shop failed me, yet again. I decided on a rotisserie chicken for dinner tonight, so off we went to the store. There are different flavors, which I knew I couldn't have because of the marinades. However, there is a chicken labeled "All Natural." Ha! Turns out there is nothing natural about it. Since when does an "All Natural" chicken contain wheat and gluten? I'd better call up Jim Perdue because this might be a serious problem! So while my family enjoyed their "Non-natural" chicken, I decided to treat myself to a box of Mac'n Cheese. And a treat it was.
On another note, I was tired today. Interesting, really, because it made me remember what "normal" used to feel like. I think my normal has changed now, and dare I say that I'm no long dreadfully tired all the time. I can't say that I'm never tired, but I guess that wouldn't have to do with a treatment for Celiac, because no mom is ever NOT tired. It's difficult to sort it all out, but at the end of the day I do feel somewhat better. I still question whether I'm lactose intolerant... unfortunately I believe I am still having problems with this. And I still wonder what other allergies/intolerances I may have developed. But for now, I'm feeling better. Hooray. I waited by the mailbox again today, chewing at my nails to no avail. Maybe tomorrow...
As I type I'm eating Trader Joe's Gluten-Free Rice Pasta and Cheddar. AKA- Mac'n Cheese! YUM. A bit of a different texture (chewier) than typical Kraft, but the flavor is fantastic. I can't get enough of it. In case you're wondering why I'm eating this at my computer during dinner, I'll tell you that it's because Stop and Shop failed me, yet again. I decided on a rotisserie chicken for dinner tonight, so off we went to the store. There are different flavors, which I knew I couldn't have because of the marinades. However, there is a chicken labeled "All Natural." Ha! Turns out there is nothing natural about it. Since when does an "All Natural" chicken contain wheat and gluten? I'd better call up Jim Perdue because this might be a serious problem! So while my family enjoyed their "Non-natural" chicken, I decided to treat myself to a box of Mac'n Cheese. And a treat it was.
On another note, I was tired today. Interesting, really, because it made me remember what "normal" used to feel like. I think my normal has changed now, and dare I say that I'm no long dreadfully tired all the time. I can't say that I'm never tired, but I guess that wouldn't have to do with a treatment for Celiac, because no mom is ever NOT tired. It's difficult to sort it all out, but at the end of the day I do feel somewhat better. I still question whether I'm lactose intolerant... unfortunately I believe I am still having problems with this. And I still wonder what other allergies/intolerances I may have developed. But for now, I'm feeling better. Hooray. I waited by the mailbox again today, chewing at my nails to no avail. Maybe tomorrow...
Wednesday, February 22, 2012
Day Twenty-Eight:
Pizza. I have gone more than thirty days without it, and I survived. I finally acquired a gluten-free pie... one of my favorite places now carries the dough. The only catch? A now twenty minute drive. Worth it? You bet. When you want a pizza, it's good. Expensive, yes. As tasty as the original, heck to the no. But it's pizza and it's decent. I can't complain too much. Ben called it a "good Celeste," and I had to thank him for that. An $11 version of the 88 cent crap you buy at Stop and Shop. Yippee! But you'd have to be in my shoes to appreciate the little things... like the bacon and onion and the real, honest to goodness pizza box. I am normal today. Hooray!
And I still stand by the mailbox like a sixteen year old waiting for college admission letters... when will my results come and what will they say? The jury is still out....
Pizza. I have gone more than thirty days without it, and I survived. I finally acquired a gluten-free pie... one of my favorite places now carries the dough. The only catch? A now twenty minute drive. Worth it? You bet. When you want a pizza, it's good. Expensive, yes. As tasty as the original, heck to the no. But it's pizza and it's decent. I can't complain too much. Ben called it a "good Celeste," and I had to thank him for that. An $11 version of the 88 cent crap you buy at Stop and Shop. Yippee! But you'd have to be in my shoes to appreciate the little things... like the bacon and onion and the real, honest to goodness pizza box. I am normal today. Hooray!
And I still stand by the mailbox like a sixteen year old waiting for college admission letters... when will my results come and what will they say? The jury is still out....
Tuesday, February 21, 2012
Day Twenty-Seven:
"Mommy, when is your ear going to feel better so you can eat our food again?" Since I burst my ear drum the same week I found out about Celiac, my now five year old has linked the two together. If only it were that simple!
I've lost three pounds in just about three weeks, and ironically enough I am starting to get hungry again... you know, the kind I complained about in days one through at least ten?! The wake-up-in-the-night kind of hungry. Hmph. I can't figure this all out and am frustrated trying.
No news as of yet from the lab... but it hasn't even been a week so I need to be patient.
"Mommy, when is your ear going to feel better so you can eat our food again?" Since I burst my ear drum the same week I found out about Celiac, my now five year old has linked the two together. If only it were that simple!
I've lost three pounds in just about three weeks, and ironically enough I am starting to get hungry again... you know, the kind I complained about in days one through at least ten?! The wake-up-in-the-night kind of hungry. Hmph. I can't figure this all out and am frustrated trying.
No news as of yet from the lab... but it hasn't even been a week so I need to be patient.
Monday, February 20, 2012
Day Twenty-Six:
P.F. Changs, I love you. You too, Plaza Azteca! Another two restaurant debacles avoided. Let me start by saying that just because a restaurant HAS a gluten-free menu doesn't mean that one might enjoy eating there. Exhibit A. Bertuccis. Here's a great salad... but you can't have any bread (the best part about their restaurant!) Number 2. Chili's. Go ahead, have a burger! Just don't get a bun or fries with it. Well, that's ingenious, feed me like a dog and that'll encourage me to come back! And Exhibit C. Wood'n Tap. A gluten-free bun? Really? That's great! But oh, wait, you have to eat string beans with your burger, because the fries are mixed in with other gluten-containing foods. UGH! Seriously? Luckily for me, the Spanish and Asian cultures either don't like gluten or really appreciate the predicament I'm in, so most of their cooking includes or can be adjusted to use corn or soy-based products. Whoopee! So dinner last night was somewhat successful. I only say somewhat because I couldn't REALLY order what I wanted, which was flour tortilla fajitas... but I can't complain because I had a great meal. And then today, when I went to P.F. Changs, I was so excited to discover that my lettuce wraps can be made in a gluten-free version, as can many of their dishes. I didn't have to miss out on anything... except maybe the fried chicken, but I didn't need that anyway. Even the girls' birthday dessert was gluten-free. Hooray! They've got SUCH a clue that they have different colored plates for GF customers... another way to not only make me feel comfortable that they haven't confused my dish with another, but also to make me feel somewhat normal at a table full of non-Celiacs.
The lesson of the day... I've come to the realization that restaurant eating is exhausting!
P.F. Changs, I love you. You too, Plaza Azteca! Another two restaurant debacles avoided. Let me start by saying that just because a restaurant HAS a gluten-free menu doesn't mean that one might enjoy eating there. Exhibit A. Bertuccis. Here's a great salad... but you can't have any bread (the best part about their restaurant!) Number 2. Chili's. Go ahead, have a burger! Just don't get a bun or fries with it. Well, that's ingenious, feed me like a dog and that'll encourage me to come back! And Exhibit C. Wood'n Tap. A gluten-free bun? Really? That's great! But oh, wait, you have to eat string beans with your burger, because the fries are mixed in with other gluten-containing foods. UGH! Seriously? Luckily for me, the Spanish and Asian cultures either don't like gluten or really appreciate the predicament I'm in, so most of their cooking includes or can be adjusted to use corn or soy-based products. Whoopee! So dinner last night was somewhat successful. I only say somewhat because I couldn't REALLY order what I wanted, which was flour tortilla fajitas... but I can't complain because I had a great meal. And then today, when I went to P.F. Changs, I was so excited to discover that my lettuce wraps can be made in a gluten-free version, as can many of their dishes. I didn't have to miss out on anything... except maybe the fried chicken, but I didn't need that anyway. Even the girls' birthday dessert was gluten-free. Hooray! They've got SUCH a clue that they have different colored plates for GF customers... another way to not only make me feel comfortable that they haven't confused my dish with another, but also to make me feel somewhat normal at a table full of non-Celiacs.
The lesson of the day... I've come to the realization that restaurant eating is exhausting!
Thursday, February 16, 2012
Day Twenty-Two:
Genetic testing, check! Wow! What a day. Turns out the insurance didn't make me jump through too many hoops... they reviewed my case and decided to pay for the tests! Woohoo! I went today and got it done, so now I just have to.... you guessed it... wait. But it's okay, because I'll have a definitive answer. Imagine if it's negative? What will happen to my blog? Haha. So if it's positive, it's pretty much a given that I have Celiac. If it's negative, there is some other factor affecting my positive blood test.... why do I have this odd feeling that it may come back negative? That would definitely be reason to celebrate, but as Ben said, then what? I still have so many questions. One day at a time. I guess we'll just see what the test says and go from there.
I ate McDonald's french fries today. Man, they were good. I ate nothing else for lunch, because I obviously can't have anything else there (even salad... the chicken and dressings have gluten!). But the fries were good. Yum. Then I find out that, hey, the oil they fry them in has a wheat derivative in it. Nice! So apparently I need to do a LOT more research before I just eat out on a whim again. Frustration! Do they not realize how much I LOVE their food?
On a happier note... check out this article.... http://www.glutenfreeliving.com/Upload/plate-vol9-1. I called the movie theater today and verified that its popcorn is, in fact, GLUTEN FREE! YIPPPEEEE!!! I am going to the movies with my sis tomorrow night and am planning on eating as much as I can possibly consume. This makes me giddy at the thought. Seriously. I know, it's pathetic. As for where and what for dinner... that's a whole different problem that I can't even deal with right now!
Genetic testing, check! Wow! What a day. Turns out the insurance didn't make me jump through too many hoops... they reviewed my case and decided to pay for the tests! Woohoo! I went today and got it done, so now I just have to.... you guessed it... wait. But it's okay, because I'll have a definitive answer. Imagine if it's negative? What will happen to my blog? Haha. So if it's positive, it's pretty much a given that I have Celiac. If it's negative, there is some other factor affecting my positive blood test.... why do I have this odd feeling that it may come back negative? That would definitely be reason to celebrate, but as Ben said, then what? I still have so many questions. One day at a time. I guess we'll just see what the test says and go from there.
I ate McDonald's french fries today. Man, they were good. I ate nothing else for lunch, because I obviously can't have anything else there (even salad... the chicken and dressings have gluten!). But the fries were good. Yum. Then I find out that, hey, the oil they fry them in has a wheat derivative in it. Nice! So apparently I need to do a LOT more research before I just eat out on a whim again. Frustration! Do they not realize how much I LOVE their food?
On a happier note... check out this article.... http://www.glutenfreeliving.com/Upload/plate-vol9-1. I called the movie theater today and verified that its popcorn is, in fact, GLUTEN FREE! YIPPPEEEE!!! I am going to the movies with my sis tomorrow night and am planning on eating as much as I can possibly consume. This makes me giddy at the thought. Seriously. I know, it's pathetic. As for where and what for dinner... that's a whole different problem that I can't even deal with right now!
Tuesday, February 14, 2012
Day Twenty:
Valentine's Day. Here's what I want. TAKE OUT FOOD! I am frustrated and cranky because all of my standard choices are a no-go for me. That makes me miserable. What used to be great for ordering on a whim or for a special treat has now lost all excitement. I want to scream. Seems ridiculous, I'm sure, but it's yet another moment that sends me right back to day one. And here I am again, cranky, hungry and really just plain ticked. This day wasn't all bad, it just went downhill around dinner time, which seems to happen a lot lately. If I had to analyze myself, I'd say that I wasn't tearing up about the food (even though good sesame chicken is something to cry about), it's just been a long day of trying hard to master this very difficult new life. I know, it shouldn't be THAT difficult, but it's kinda like if someone put a button in front of you and tells you you're not allowed to push it. All you want to do is push it and see what happens, and it takes all of your energy to think of ways to avoid pushing that button.
I'm off to drool about a nice (imaginary) french baguette drenched in olive oil and my yummy (imaginary) lo mein and sesame chicken..... Thank God Ben was here to take over dinner after my meltdown! I guess I'll have to eat his dinner and pretend it's eggplant pizza and an egg roll. ;)
Oh, and on a side note... thank GOD for Ellen, and her Udi's bread. (I LOVE YOU, ELLEN!) I am serious when I say I do NOT know what I would do if I had not been introduced to it. It is THE only bread that actually tastes decent. Life without bread... well, it's my blog title, so obviously it's made a big impact.
Valentine's Day. Here's what I want. TAKE OUT FOOD! I am frustrated and cranky because all of my standard choices are a no-go for me. That makes me miserable. What used to be great for ordering on a whim or for a special treat has now lost all excitement. I want to scream. Seems ridiculous, I'm sure, but it's yet another moment that sends me right back to day one. And here I am again, cranky, hungry and really just plain ticked. This day wasn't all bad, it just went downhill around dinner time, which seems to happen a lot lately. If I had to analyze myself, I'd say that I wasn't tearing up about the food (even though good sesame chicken is something to cry about), it's just been a long day of trying hard to master this very difficult new life. I know, it shouldn't be THAT difficult, but it's kinda like if someone put a button in front of you and tells you you're not allowed to push it. All you want to do is push it and see what happens, and it takes all of your energy to think of ways to avoid pushing that button.
I'm off to drool about a nice (imaginary) french baguette drenched in olive oil and my yummy (imaginary) lo mein and sesame chicken..... Thank God Ben was here to take over dinner after my meltdown! I guess I'll have to eat his dinner and pretend it's eggplant pizza and an egg roll. ;)
Oh, and on a side note... thank GOD for Ellen, and her Udi's bread. (I LOVE YOU, ELLEN!) I am serious when I say I do NOT know what I would do if I had not been introduced to it. It is THE only bread that actually tastes decent. Life without bread... well, it's my blog title, so obviously it's made a big impact.
Sunday, February 12, 2012
Day Eighteen:
I am almost ready to say that I've adopted a new lifestyle. BUT. Just when I let my guard down, I get nervous that I'm going to slip. Like last night, when I made a batch of brownies. I stuck the toothpick in to check if they were done, and what do you know, I put the toothpick in my mouth. It's things like that, subconscious behaviors that I've done my whole life, that worry me. So now I'm back to being worried all the time, checking and double checking to make sure I'm doing everything right. When will this be second nature? I guess two weeks in is just too soon.
My bestie brought me William Sonoma, Cup 4 Cup Chocolate Chunk cookies. It was my first attempt at baking a dessert. I can only imagine what this creation costs, but nevermind that for now, because they were phenomenal. Everyone agreed. The only mishap was the fact that A. the wax paper almost started on fire, and B. the cookies all melded into one giant creation. But whatever... they were fantastic and I ate way too many. I am pretty sure that no one would ever be able to tell the difference between a "real" cookie and these. Yippee! Can't wait to try the pancakes!
I'm not feeling nearly as frustrated all the time, which is great, nor do I feel starving all the time. Yay! If I had to guess, I'd say I feel pretty much back to normal. Whatever normal is. I do feel less tired, but can't say that much else has changed as of yet. What does all of this mean, and when will I get a clear sign? My joint pain is still an issue some days, but I can't really tell if it has improved because it's always been a problem that fluctuates. My headaches seem better, although I'm an idiot and decided to try to get myself off of the migraine medication all at the same time as starting this diet. So I'm holding steady on a much smaller dose, which is good, but I'm still getting the occasional headache. Is this normal of one who weans off of the medication? Probably... I'm not a doctor and I need to stop acting like one! I'll have to wait this one out and see what happens. Another waiting game. But as long as I don't suffer like before, I've got the time!
The girls are getting used to my diet, too. They stop asking me if I want bites of their food, and they are asking a lot of questions about "momma's food." They also like to try it and tell me their opinion. I guess we're all adjusting, it's just taking time.
I am almost ready to say that I've adopted a new lifestyle. BUT. Just when I let my guard down, I get nervous that I'm going to slip. Like last night, when I made a batch of brownies. I stuck the toothpick in to check if they were done, and what do you know, I put the toothpick in my mouth. It's things like that, subconscious behaviors that I've done my whole life, that worry me. So now I'm back to being worried all the time, checking and double checking to make sure I'm doing everything right. When will this be second nature? I guess two weeks in is just too soon.
My bestie brought me William Sonoma, Cup 4 Cup Chocolate Chunk cookies. It was my first attempt at baking a dessert. I can only imagine what this creation costs, but nevermind that for now, because they were phenomenal. Everyone agreed. The only mishap was the fact that A. the wax paper almost started on fire, and B. the cookies all melded into one giant creation. But whatever... they were fantastic and I ate way too many. I am pretty sure that no one would ever be able to tell the difference between a "real" cookie and these. Yippee! Can't wait to try the pancakes!
I'm not feeling nearly as frustrated all the time, which is great, nor do I feel starving all the time. Yay! If I had to guess, I'd say I feel pretty much back to normal. Whatever normal is. I do feel less tired, but can't say that much else has changed as of yet. What does all of this mean, and when will I get a clear sign? My joint pain is still an issue some days, but I can't really tell if it has improved because it's always been a problem that fluctuates. My headaches seem better, although I'm an idiot and decided to try to get myself off of the migraine medication all at the same time as starting this diet. So I'm holding steady on a much smaller dose, which is good, but I'm still getting the occasional headache. Is this normal of one who weans off of the medication? Probably... I'm not a doctor and I need to stop acting like one! I'll have to wait this one out and see what happens. Another waiting game. But as long as I don't suffer like before, I've got the time!
The girls are getting used to my diet, too. They stop asking me if I want bites of their food, and they are asking a lot of questions about "momma's food." They also like to try it and tell me their opinion. I guess we're all adjusting, it's just taking time.
Wednesday, February 8, 2012
Day Fourteen:
Two pounds lighter, still grouchy. I have to say, I'm enjoying eating a little more... the salads and fruit are actually tasting good and making me feel full (finally). But at the same time, I am still encountering many, many circumstances where I want a food that I cannot have. A bite of this, and a taste of that. Ugh! In spite of that, I've managed to find something new that tastes, yes, GOOD! Betty Crocker GF Chocolate Chip Cookies have made it to the top of my list, I'm happy to report. It's about time I tasted a normal dessert that doesn't taste like GF white bread. Woohoo! The texture is still very different... picture a normal cookie, 3 days old (crumbly and dry) and you've got yourself a fresh baked GF cookie!! But I'm going to take this recipe under my wing and learn how to do it right. Unfortunately, unlike my secret to normal Betty Crocker brownies/cookies (under cook them by at least 8 minutes), GF doesn't work the same way- it will make you sick if it's undercooked. So it'll be a learning curve. But I'm up for the challenge here, because everyone knows how badly I need a warm chocolate cookie once in a while. The mood thing, though, I'm not sure what that's all about. Even I know that the last balloons have all deflated at my pity party, and I need to move on. But even though I can rationalize this, I can't seem to get out of the funk that drowns me day to day. I keep having (literal) dreams about eating things I'm not supposed to eat, which makes me feel anxious that I need to pay more careful attention and make sure I don't "forget" that I have this disease. Ha! That's hysterical. I am way too high strung! I guess that wasn't a Celiac symptom!
Yesterday was a sleepy day, which really surprised me, in that I now realize that I am feeling better. I took a nap and went to bed at 8:00, which was very, very normal for my day to day life pre-diagnosis. Yet this morning I realized that, wow, that was the first day in almost two weeks that I needed a nap midday! Everything is a puzzle, but the only thing that matters is that I continue to feel better.
Tonight is Vaca Frita night... my all time favorite Cuban meal that I cannot live without. Thank God it's gluten free. I plan to make it a lot. And by the way, is anyone else disturbed by the fact that Moe's tortilla chips have gluten in them? I am so angry about that! It's a CORN chip. Get a clue, Moe. "The queso is gluten-free, though." Hahaha... yeah, okay, should I just drink it with a straw, then? Ugh... I understand that I was one of them two weeks ago, but I just can't deal with clueless people right now....
Two pounds lighter, still grouchy. I have to say, I'm enjoying eating a little more... the salads and fruit are actually tasting good and making me feel full (finally). But at the same time, I am still encountering many, many circumstances where I want a food that I cannot have. A bite of this, and a taste of that. Ugh! In spite of that, I've managed to find something new that tastes, yes, GOOD! Betty Crocker GF Chocolate Chip Cookies have made it to the top of my list, I'm happy to report. It's about time I tasted a normal dessert that doesn't taste like GF white bread. Woohoo! The texture is still very different... picture a normal cookie, 3 days old (crumbly and dry) and you've got yourself a fresh baked GF cookie!! But I'm going to take this recipe under my wing and learn how to do it right. Unfortunately, unlike my secret to normal Betty Crocker brownies/cookies (under cook them by at least 8 minutes), GF doesn't work the same way- it will make you sick if it's undercooked. So it'll be a learning curve. But I'm up for the challenge here, because everyone knows how badly I need a warm chocolate cookie once in a while. The mood thing, though, I'm not sure what that's all about. Even I know that the last balloons have all deflated at my pity party, and I need to move on. But even though I can rationalize this, I can't seem to get out of the funk that drowns me day to day. I keep having (literal) dreams about eating things I'm not supposed to eat, which makes me feel anxious that I need to pay more careful attention and make sure I don't "forget" that I have this disease. Ha! That's hysterical. I am way too high strung! I guess that wasn't a Celiac symptom!
Yesterday was a sleepy day, which really surprised me, in that I now realize that I am feeling better. I took a nap and went to bed at 8:00, which was very, very normal for my day to day life pre-diagnosis. Yet this morning I realized that, wow, that was the first day in almost two weeks that I needed a nap midday! Everything is a puzzle, but the only thing that matters is that I continue to feel better.
Tonight is Vaca Frita night... my all time favorite Cuban meal that I cannot live without. Thank God it's gluten free. I plan to make it a lot. And by the way, is anyone else disturbed by the fact that Moe's tortilla chips have gluten in them? I am so angry about that! It's a CORN chip. Get a clue, Moe. "The queso is gluten-free, though." Hahaha... yeah, okay, should I just drink it with a straw, then? Ugh... I understand that I was one of them two weeks ago, but I just can't deal with clueless people right now....
Sunday, February 5, 2012
Day Eleven:
Fritos. Ben's homemade wings. Stubb's BBQ sauce. Cheese. Pepperoni. Tostitos. Lays. And Smirnoff. Yay! I can't have everything, but we've managed to make my Superbowl cheerful. I feel normal. I feel happy. It's a good day!
Today I went to the grocery store for the first time.... I mean, the real grocery store for my regulary weekly shop. It was interesting, to say the least. What I thought would be a "quick" shop was more than an hour and a half. What's most frustrating about label checking is that every single one is different. Some products have a special GF emblem, some have Gluten Free written somewhere on the package, and some say nothing at all. After spending two minutes on a package, the last thing I want to do is have to put it back because I don't have a clear cut answer. I can imagine this frustration must be widespread among other Celiacs. The other question is when a product says, "Produced in a factory with wheat and soy products." So is that just the legal mumbo jumbo in case I need an Epipen? Or does it mean the people that pack the item are wearing gloves covered in wheat flour? This is so puzzling and frustrating, and I can imagine that if you called all of these companies, they would each say something different. I only ended up encountering one Homer Simpson "Doh!" moment, which was the Lipton Onion Soup mix... my favorite onion dip of all time. It is produced in one of these questionable facilities. I have to admit, I ate it anyway. I'm not blatantly eating gluten, and for now I just need to let it go. You bet I'm going to call on Monday and find out. The other thing is that I'm just not sure how crazy I have to be just yet. Maybe these kinds of products are okay for me. Who knows. I'm not going to feel bad about it, today at least.
So in my quest to find some lunch products that don't include bread, I landed on Progresso French Onion soup. It's gluten free. The funniest part of this snippet is that I ended up putting bread in it, so what was the point?! I made croutons with my failed bread of yesterday, and then melted cheese on top. It wasn't horrible, but it wasn't good either, because the bread soaked up the soup and still managed to taste like gluten free bread. I ended up scooping the bread out and eating the broth by itself. Hmph. Back to square one.
I have to say here, thank you to all of you who have been so super supportive of everything I've been going through. Especially those of you who have been dealing with my moods (Ben, Mom, Donna). I am lucky I can vent, but realize this does come at a cost! I'm trying, that's all I can say, and I know it will get better. I am figuring that's why you're all putting up with me in the first place. And I love having my very own personal Googlio (it's my new word for Cheerio... does anyone watch Glee?).... that's you, Nicky!!! Thank you, thank you.
Fritos. Ben's homemade wings. Stubb's BBQ sauce. Cheese. Pepperoni. Tostitos. Lays. And Smirnoff. Yay! I can't have everything, but we've managed to make my Superbowl cheerful. I feel normal. I feel happy. It's a good day!
Today I went to the grocery store for the first time.... I mean, the real grocery store for my regulary weekly shop. It was interesting, to say the least. What I thought would be a "quick" shop was more than an hour and a half. What's most frustrating about label checking is that every single one is different. Some products have a special GF emblem, some have Gluten Free written somewhere on the package, and some say nothing at all. After spending two minutes on a package, the last thing I want to do is have to put it back because I don't have a clear cut answer. I can imagine this frustration must be widespread among other Celiacs. The other question is when a product says, "Produced in a factory with wheat and soy products." So is that just the legal mumbo jumbo in case I need an Epipen? Or does it mean the people that pack the item are wearing gloves covered in wheat flour? This is so puzzling and frustrating, and I can imagine that if you called all of these companies, they would each say something different. I only ended up encountering one Homer Simpson "Doh!" moment, which was the Lipton Onion Soup mix... my favorite onion dip of all time. It is produced in one of these questionable facilities. I have to admit, I ate it anyway. I'm not blatantly eating gluten, and for now I just need to let it go. You bet I'm going to call on Monday and find out. The other thing is that I'm just not sure how crazy I have to be just yet. Maybe these kinds of products are okay for me. Who knows. I'm not going to feel bad about it, today at least.
So in my quest to find some lunch products that don't include bread, I landed on Progresso French Onion soup. It's gluten free. The funniest part of this snippet is that I ended up putting bread in it, so what was the point?! I made croutons with my failed bread of yesterday, and then melted cheese on top. It wasn't horrible, but it wasn't good either, because the bread soaked up the soup and still managed to taste like gluten free bread. I ended up scooping the bread out and eating the broth by itself. Hmph. Back to square one.
I have to say here, thank you to all of you who have been so super supportive of everything I've been going through. Especially those of you who have been dealing with my moods (Ben, Mom, Donna). I am lucky I can vent, but realize this does come at a cost! I'm trying, that's all I can say, and I know it will get better. I am figuring that's why you're all putting up with me in the first place. And I love having my very own personal Googlio (it's my new word for Cheerio... does anyone watch Glee?).... that's you, Nicky!!! Thank you, thank you.
Saturday, February 4, 2012
Day Ten:
The Breadmaker. Ha! Let's just say my experiment didn't go well. Luckily, after the overflowing incident, I was able to salvage the dough, let it rise again, and put it in the oven. It wasn't half bad. Not half good, either. I figured out that if you doused it in butter, then in oil, it doesn't have the aftertaste of other gluten free products. Yum! I've decided to can the idea of the breadmaker, and if I decide to make bread again, I'll just go back to the trusty ol' oven.
Nothing much to report today... other than the fact that I'm still starving, and despite the fact that I have added protein shakes to my diet, they don't seem to cut it. I'm hoping as more time passes this feeling will go away, because I just can't imagine continuing to battle with this. I guess it's good that I don't have a real desire to eat, because I probably would have gained ten pounds by now, but I can't say it's helped my mood any. I've discovered that my husband has rated my mood as being "foul" since the Celiac news broke. I don't think he blames me, but I'm sure he's tired of listening to me. Heck, I'm tired of listening to me. But at the same time, he doesn't have to cut out all of the things he loves... so I'm not really feeling sorry for him. I'm still experiencing the occasional pity party, and I've decided that it's okay for now.
So, the good news is that I've made it to day ten and I think, unscientifically, that I feel slightly better. The bad news is that I haven't really changed my attitude, haven't lost any weight (even though I was convinced I didn't care), and don't even understand how I'm going to do this for the rest of my life! One day at a time.
In the car tonight I listened to my daughters singing and realized that so much, if not all, of my happiness revolves around them. I need to stay focused on that, and let them give me the strength to get to tomorrow. I can do it.
The Breadmaker. Ha! Let's just say my experiment didn't go well. Luckily, after the overflowing incident, I was able to salvage the dough, let it rise again, and put it in the oven. It wasn't half bad. Not half good, either. I figured out that if you doused it in butter, then in oil, it doesn't have the aftertaste of other gluten free products. Yum! I've decided to can the idea of the breadmaker, and if I decide to make bread again, I'll just go back to the trusty ol' oven.
Nothing much to report today... other than the fact that I'm still starving, and despite the fact that I have added protein shakes to my diet, they don't seem to cut it. I'm hoping as more time passes this feeling will go away, because I just can't imagine continuing to battle with this. I guess it's good that I don't have a real desire to eat, because I probably would have gained ten pounds by now, but I can't say it's helped my mood any. I've discovered that my husband has rated my mood as being "foul" since the Celiac news broke. I don't think he blames me, but I'm sure he's tired of listening to me. Heck, I'm tired of listening to me. But at the same time, he doesn't have to cut out all of the things he loves... so I'm not really feeling sorry for him. I'm still experiencing the occasional pity party, and I've decided that it's okay for now.
So, the good news is that I've made it to day ten and I think, unscientifically, that I feel slightly better. The bad news is that I haven't really changed my attitude, haven't lost any weight (even though I was convinced I didn't care), and don't even understand how I'm going to do this for the rest of my life! One day at a time.
In the car tonight I listened to my daughters singing and realized that so much, if not all, of my happiness revolves around them. I need to stay focused on that, and let them give me the strength to get to tomorrow. I can do it.
Friday, February 3, 2012
Day Nine:
Pizza. Oh, pizza. Pizza Fridays with the Grubkas just got a little more complicated. A local restaurant that supposedly carried gluten-free dough no longer does. The bakery that makes it on Fridays was closed. And that left Whole Foods' frozen pizza, which I decided should NOT be my first pizza on the GF diet. No thanks. So Pizza Friday went on without me. I tried not to look, but the smell did catch me a few times and make me want to knock someone out for a piece. I ate my healthy salad instead, yeah me. At least Rob had a salad, too, which he seemed to enjoy.... in some weird way this makes me feel like less of an outsider. And there was wine. Thank God for wine. We'll have to venture out a little further for some pizza on our next Pizza Friday, but it will be worth it to be one of the pack.
Do I feel better today? I feel somewhat less tired. Could it be? I've slept a significant amount less this week, going to bed at 11:00 instead of my usual 8 or 9, and getting up at the normal time. I'm not testing the water, I'm just not tired at night like before. A coincidence? I'm not sure yet. Maybe it's just because there has been good t.v. on. Maybe it's because I'm hungry. Who knows. As the doctor says, I'm too scientific to let anything sway me, so I will need more proof... like a solid few weeks of this pattern (and crappy t.v.) before I'm convinced.
I've discovered my newest favorite, besides peanut butter... M&M's. Yum. Gluten-free and so darn good. I am thankful for Mars today.
Pizza. Oh, pizza. Pizza Fridays with the Grubkas just got a little more complicated. A local restaurant that supposedly carried gluten-free dough no longer does. The bakery that makes it on Fridays was closed. And that left Whole Foods' frozen pizza, which I decided should NOT be my first pizza on the GF diet. No thanks. So Pizza Friday went on without me. I tried not to look, but the smell did catch me a few times and make me want to knock someone out for a piece. I ate my healthy salad instead, yeah me. At least Rob had a salad, too, which he seemed to enjoy.... in some weird way this makes me feel like less of an outsider. And there was wine. Thank God for wine. We'll have to venture out a little further for some pizza on our next Pizza Friday, but it will be worth it to be one of the pack.
Do I feel better today? I feel somewhat less tired. Could it be? I've slept a significant amount less this week, going to bed at 11:00 instead of my usual 8 or 9, and getting up at the normal time. I'm not testing the water, I'm just not tired at night like before. A coincidence? I'm not sure yet. Maybe it's just because there has been good t.v. on. Maybe it's because I'm hungry. Who knows. As the doctor says, I'm too scientific to let anything sway me, so I will need more proof... like a solid few weeks of this pattern (and crappy t.v.) before I'm convinced.
I've discovered my newest favorite, besides peanut butter... M&M's. Yum. Gluten-free and so darn good. I am thankful for Mars today.
Thursday, February 2, 2012
Day Eight:
Is it possible to get sick of Google? (Sorry, Nicky!) I've had it. Every minute I think of something I'm wondering about, and here I am again on the trusty (or not so) internet. Ugh. Just when I try to tell myself I'm not going to Google anything else, the urge overcomes me and there I go again. You get a million hits and half of it is pure crap. So I spend about twenty minutes wishing I get back the time I just wasted, and the brain cells I burned trying to decode all of this stuff I'm reading. I tried to buy some books, but everytime I read the reviews, I'm totally perplexed as to which one I should pick. Gluten-Free for Dummies? The Idiots Guide to Celiac? The Gluten-Free Bible? There are hundreds, if not more, books on this topic, and I just don't know where to go for advice.
I got a call from the Rheumatologist today. Just as I got my hopes up.... the insurance company has requested my endoscopy results. I think it's just prolonging the inevitable. It's a 50/50. Either they want it to prove that the genetic test is necessary, or they want it to prove the test is unnecessary. My guess is that it's the latter, but I'll try to stay positive. All I've got is time, right?
I'm learning that everything healthy is tasting better. It's not because I'm learning to accept that I have to eat it, it's because everything else tastes like dirt. I am constantly putting things in my mouth and wondering why I should even bother. It's a real eye-opener. Like this morning, on the way to the girls' dance class, when I grabbed a gluten-free version of a Nutrigrain Bar. Why on earth I thought that was a good purchase, I don't know, because I hate the non-gluten-free version! But at any rate, we jumped in the car and headed on our way as I excitedly broke open the package. Well, let's just say it's a good thing I had coffee in my cup, because I might have gone off the road otherwise. I almost choked. The flavor wasn't half bad, ironically, but the texture was all wrong. Chunky and crumbly "oats" that literally coagulated as they hit the saliva in my throat. Yum! I suddenly wished I had had time for that good ol' reliable bowl of Chex and Almond milk. It's all about discovery I suppose.
My family ate our homemade perogies tonight, as I tried not to watch. I'm not really angry anymore, or even upset, it's more numbing than anything else. I stood, instead, working hard on my salad. I know it will taste good, but I still miss my unified family meal some nights. The girls still don't understand, and tell me constantly that they are willing to share... it makes me think of the mother who doesn't eat so her children can have more.
Oh, and if you're wondering... yes, I'm still starving most of the time. And, no, I haven't gained an ounce or even lost an ounce for that matter. I'm holding ground in limbo.
Is it possible to get sick of Google? (Sorry, Nicky!) I've had it. Every minute I think of something I'm wondering about, and here I am again on the trusty (or not so) internet. Ugh. Just when I try to tell myself I'm not going to Google anything else, the urge overcomes me and there I go again. You get a million hits and half of it is pure crap. So I spend about twenty minutes wishing I get back the time I just wasted, and the brain cells I burned trying to decode all of this stuff I'm reading. I tried to buy some books, but everytime I read the reviews, I'm totally perplexed as to which one I should pick. Gluten-Free for Dummies? The Idiots Guide to Celiac? The Gluten-Free Bible? There are hundreds, if not more, books on this topic, and I just don't know where to go for advice.
I got a call from the Rheumatologist today. Just as I got my hopes up.... the insurance company has requested my endoscopy results. I think it's just prolonging the inevitable. It's a 50/50. Either they want it to prove that the genetic test is necessary, or they want it to prove the test is unnecessary. My guess is that it's the latter, but I'll try to stay positive. All I've got is time, right?
I'm learning that everything healthy is tasting better. It's not because I'm learning to accept that I have to eat it, it's because everything else tastes like dirt. I am constantly putting things in my mouth and wondering why I should even bother. It's a real eye-opener. Like this morning, on the way to the girls' dance class, when I grabbed a gluten-free version of a Nutrigrain Bar. Why on earth I thought that was a good purchase, I don't know, because I hate the non-gluten-free version! But at any rate, we jumped in the car and headed on our way as I excitedly broke open the package. Well, let's just say it's a good thing I had coffee in my cup, because I might have gone off the road otherwise. I almost choked. The flavor wasn't half bad, ironically, but the texture was all wrong. Chunky and crumbly "oats" that literally coagulated as they hit the saliva in my throat. Yum! I suddenly wished I had had time for that good ol' reliable bowl of Chex and Almond milk. It's all about discovery I suppose.
My family ate our homemade perogies tonight, as I tried not to watch. I'm not really angry anymore, or even upset, it's more numbing than anything else. I stood, instead, working hard on my salad. I know it will taste good, but I still miss my unified family meal some nights. The girls still don't understand, and tell me constantly that they are willing to share... it makes me think of the mother who doesn't eat so her children can have more.
Oh, and if you're wondering... yes, I'm still starving most of the time. And, no, I haven't gained an ounce or even lost an ounce for that matter. I'm holding ground in limbo.
Wednesday, February 1, 2012
Day Seven:
IGG. IGA. TTG. DQR8. DQR6. Endoscopy. Colonoscopy. Genetic testing. False positive. False negative. Huh? I'm a week in and I feel like I've gotten no where. The Rheumatologist has given me so much (too much) information, and I can't seem to find my way. I have choices now. I hate choices. I don't want choices. I'm back to being that tantruming toddler I was a week ago... I need to be told what to do. Doesn't anyone get that? My doctor called me complex and scientific. Ha! The bottom line is this.... I want the answer... the one that is 100% accurate. And guess what she said? In my case, it might not happen.
So here's what I do know.... my blood tests for Celiac were positive, as well as a test showing a Vitamin D deficiency (which, funny enough, goes along with Celiac- hellloooo!!!). In my doctor's eyes, it is most likely that I have Celiac. Everything else was normal (phew). However, in order to confirm that I have Celiac I need to have one of two things done: a genetic test for the Celiac marker or an endoscopy/colonoscopy (the top half of which I've already had a year ago). Turns out that choice number one is often not covered by insurance, and if it comes back negative, it means I can't have Celiac but still might have varying degrees of gluten sensitivity/intolerance since my initial Celiac test was positive. Choice number two involves ANOTHER biopsy, which was very expensive and leaves room for question since my doctor said I might get a false negative. Which then begs the question... was it negative last time because I didn't have the disease (yet)? Or was it negative because I was biopsied in an unaffected area of my small intestine? And why am I, one week into this, the one who has to make the decision about where to go from here?
So where DO I go from here? Well, my plan is fluid at this point, but I've come up with this so far, by taking my Rheumatologist's advice and going by all of the research I've done. 1. Wait for insurance approval/denial of genetic testing. I've decided to try this route first because it's the least invasive and seemingly most conclusive test I can get. If it comes out positive, it's pretty clear that the answer is Celiac. I think. I guess we'll have to cross that bridge when we come to it. If the insurance company denies it, I will head back to the G.I. doctor and see what they recommend next, even though I know what it will be. 2. Stay on the diet. It might make me feel better, and if it does (or even if it doesn't), the doctor can run my blood test again in a few weeks and see how my blood levels have reacted to the elimination of gluten. Well, I'm already on the diet, so what now? More waiting? Ugh. And more questions.
In the beginning I wasn't clear why it took so long for people to get diagnosed. Now I get it. Even when things seem so clear cut, they really aren't. All that's left is more waiting... and the diet.... the lovely, delicious diet. And hope... that someone or something can give me the answer.
IGG. IGA. TTG. DQR8. DQR6. Endoscopy. Colonoscopy. Genetic testing. False positive. False negative. Huh? I'm a week in and I feel like I've gotten no where. The Rheumatologist has given me so much (too much) information, and I can't seem to find my way. I have choices now. I hate choices. I don't want choices. I'm back to being that tantruming toddler I was a week ago... I need to be told what to do. Doesn't anyone get that? My doctor called me complex and scientific. Ha! The bottom line is this.... I want the answer... the one that is 100% accurate. And guess what she said? In my case, it might not happen.
So here's what I do know.... my blood tests for Celiac were positive, as well as a test showing a Vitamin D deficiency (which, funny enough, goes along with Celiac- hellloooo!!!). In my doctor's eyes, it is most likely that I have Celiac. Everything else was normal (phew). However, in order to confirm that I have Celiac I need to have one of two things done: a genetic test for the Celiac marker or an endoscopy/colonoscopy (the top half of which I've already had a year ago). Turns out that choice number one is often not covered by insurance, and if it comes back negative, it means I can't have Celiac but still might have varying degrees of gluten sensitivity/intolerance since my initial Celiac test was positive. Choice number two involves ANOTHER biopsy, which was very expensive and leaves room for question since my doctor said I might get a false negative. Which then begs the question... was it negative last time because I didn't have the disease (yet)? Or was it negative because I was biopsied in an unaffected area of my small intestine? And why am I, one week into this, the one who has to make the decision about where to go from here?
So where DO I go from here? Well, my plan is fluid at this point, but I've come up with this so far, by taking my Rheumatologist's advice and going by all of the research I've done. 1. Wait for insurance approval/denial of genetic testing. I've decided to try this route first because it's the least invasive and seemingly most conclusive test I can get. If it comes out positive, it's pretty clear that the answer is Celiac. I think. I guess we'll have to cross that bridge when we come to it. If the insurance company denies it, I will head back to the G.I. doctor and see what they recommend next, even though I know what it will be. 2. Stay on the diet. It might make me feel better, and if it does (or even if it doesn't), the doctor can run my blood test again in a few weeks and see how my blood levels have reacted to the elimination of gluten. Well, I'm already on the diet, so what now? More waiting? Ugh. And more questions.
In the beginning I wasn't clear why it took so long for people to get diagnosed. Now I get it. Even when things seem so clear cut, they really aren't. All that's left is more waiting... and the diet.... the lovely, delicious diet. And hope... that someone or something can give me the answer.
Tuesday, January 31, 2012
Day Six:
I don't know where the day went today, but my head is still spinning and I'm too tired to write. I went for my Rheumatologist visit and have no idea where I am or where I'm headed. Everything makes me a "complex" case (of course), so nothing is clear cut. The only great news I got was that nothing "else" is wrong... right now. Woohoo. But where does that leave me? I need the genetic test for Celiac but don't know if insurance will pay for it. Super! A biopsy, like the one I already went for a year and a half ago, may not be definitive in my case. Wonderful! So now I just wait. For what, I don't exactly know.
Today I'm more frustrated than I have been in a few days, so I feel like I've taken two steps back. I feel like I'm getting somewhat used to eating this diet now, but even still I can't help but wonder how I'm going to manage for the REST of my life. My mom brought over a gluten-free cake (one of the mixes) and I took one bite and wanted to gag. What a disappointment. It tasted like the bread I eat for my sandwich. Seriously.... the aftertaste is like your morning breath after a night of drinking. My mom thinks I exaggerate (me???!!!) but if you don't believe me, try it. My wonderful, supportive husband ate two huge bites of the cake (ha!) and said it wasn't too bad, until the aftertaste set in. Then he changed his tune and said he might eat it if he was starving and there wasn't anything left to eat. I mean, hellllloooo! Can you understand why I'm mourning here? Maybe I'll just stick with fruit after all. But can I really give up the real genuine brownie? Me? That will be a sight to be seen. In my frustration, I punched the leftover cake (hahaha)... a normal cake would crumble. No, not this cake! This mighty cake bounced back, like my Tempurpedic mattress. Ugh. I just might gag again.
I don't know where the day went today, but my head is still spinning and I'm too tired to write. I went for my Rheumatologist visit and have no idea where I am or where I'm headed. Everything makes me a "complex" case (of course), so nothing is clear cut. The only great news I got was that nothing "else" is wrong... right now. Woohoo. But where does that leave me? I need the genetic test for Celiac but don't know if insurance will pay for it. Super! A biopsy, like the one I already went for a year and a half ago, may not be definitive in my case. Wonderful! So now I just wait. For what, I don't exactly know.
Today I'm more frustrated than I have been in a few days, so I feel like I've taken two steps back. I feel like I'm getting somewhat used to eating this diet now, but even still I can't help but wonder how I'm going to manage for the REST of my life. My mom brought over a gluten-free cake (one of the mixes) and I took one bite and wanted to gag. What a disappointment. It tasted like the bread I eat for my sandwich. Seriously.... the aftertaste is like your morning breath after a night of drinking. My mom thinks I exaggerate (me???!!!) but if you don't believe me, try it. My wonderful, supportive husband ate two huge bites of the cake (ha!) and said it wasn't too bad, until the aftertaste set in. Then he changed his tune and said he might eat it if he was starving and there wasn't anything left to eat. I mean, hellllloooo! Can you understand why I'm mourning here? Maybe I'll just stick with fruit after all. But can I really give up the real genuine brownie? Me? That will be a sight to be seen. In my frustration, I punched the leftover cake (hahaha)... a normal cake would crumble. No, not this cake! This mighty cake bounced back, like my Tempurpedic mattress. Ugh. I just might gag again.
Monday, January 30, 2012
Day Five:
Today I am riddled with questions.
What in the hey am I supposed to eat for lunch? Today was my first day eating lunch at work with no sandwich. Gluten-free bread is palatable if you toast it, which isn't possible at school, so I am left with limited options. So I brought a salad the size of Texas and had a good laugh as people looked at me like I was a rabbit loose in the garden. Don't get me wrong, I love salad as much as the next guy. Sometimes, though, it just isn't satisfying... at all. I've tried all of the fixings- nuts, fruit, meats, eggs, cheese.... let's just say it's going to be an adjustment. Especially without the ever-so-delicious garlic butter crouton. I am not a soup person either. I don't mind it, and sometimes really enjoy it, but I will rarely get excited about soup. Not to mention that most soups that aren't homemade have gluten in them. So that's out, too, since I don't have the energy or desire to brew up my own concoction. So here I am... yet again realizing that my life revolves around bread. Hmph. Lunch is my favorite meal of the day. Seriously. But at least I've got my chips! So I'll just eat salad for now and keep on thinking.... what am I going to have tomorrow?
Will I gain or will I lose? That's another question on my mind today. Celiac is such a crazy disease, because people have so many different symptoms that while some gain weight after diagnosis, others lose weight. Which category will I fit into? It's funny, because before diagnosis, all I wanted to do was lose the weight I put on. Not because I cared about my pant size, but because I didn't feel comfortable. But today, after diagnosis, I really don't care what happens with my weight (okay, well maybe that's an overstatement since I obviously don't want to gain 100 pounds).... but my point is, all I want to do is get healthy. If that doesn't mean losing this weight, then so be it. If I do lose it, well, I will consider it a major bonus of course! I think women spend so much time worrying about their weight, when what they should really be focused on is whether or not they take care of themselves and are focused on how they feel. When you think about it, why do we all need scales?
Juice or Smoothie? I bought a juicer, and now I'm thinking twice about it. It seems like a lot of work, and a lot of money. I discovered these super healthy smoothies that seemed expensive until I really started to calculate what I am going to spend on fruit and veggies for the juicer, not to mention the time and energy it will take to make all of these drinks I'm planning to have. So what do I do? Abandon the juicer and stock up on the smoothies? It seems like it can't be the most cost effective this way, but how can I possibly buy 6.5 apples, 3.5 oranges, 1 banana, and 3.75 mangoes for under the cost of the fruit smoothie ($3.15)? Why is this so puzzling to me?
When am I going to stop being hungry? Anyone? Ben says it's in my head because I'm thinking about it constantly. Really, babe? I'm sure perseverating on this fact doesn't help anything, but no matter what I do my stomach is really and truly growling at me. How can I stop thinking about it when I'm interrupted every five minutes by a snoring elephant? It's really pretty aggravating at this point. The worst part is still that I don't want to eat most of the time. I just don't get it. I bought Tilapia for dinner tonight and had to put it in the freezer, because the thought of putting that in my mouth made me want to gag. This is almost like being pregnant again, except without the babies... and without the bread.
Tonight I had my very first "normal" meal. By normal I mean that I didn't do anything different than before before my diagnosis (aside from checking the labels). TACOS!!!! Yum. Another interesting question that I'm pondering... other than bread, why are most of my favorite foods gluten-free? Is this just a lucky coincidence? Well, whatever the answer is, I might as well stop asking questions and just enjoy what I can!
Today I am riddled with questions.
What in the hey am I supposed to eat for lunch? Today was my first day eating lunch at work with no sandwich. Gluten-free bread is palatable if you toast it, which isn't possible at school, so I am left with limited options. So I brought a salad the size of Texas and had a good laugh as people looked at me like I was a rabbit loose in the garden. Don't get me wrong, I love salad as much as the next guy. Sometimes, though, it just isn't satisfying... at all. I've tried all of the fixings- nuts, fruit, meats, eggs, cheese.... let's just say it's going to be an adjustment. Especially without the ever-so-delicious garlic butter crouton. I am not a soup person either. I don't mind it, and sometimes really enjoy it, but I will rarely get excited about soup. Not to mention that most soups that aren't homemade have gluten in them. So that's out, too, since I don't have the energy or desire to brew up my own concoction. So here I am... yet again realizing that my life revolves around bread. Hmph. Lunch is my favorite meal of the day. Seriously. But at least I've got my chips! So I'll just eat salad for now and keep on thinking.... what am I going to have tomorrow?
Will I gain or will I lose? That's another question on my mind today. Celiac is such a crazy disease, because people have so many different symptoms that while some gain weight after diagnosis, others lose weight. Which category will I fit into? It's funny, because before diagnosis, all I wanted to do was lose the weight I put on. Not because I cared about my pant size, but because I didn't feel comfortable. But today, after diagnosis, I really don't care what happens with my weight (okay, well maybe that's an overstatement since I obviously don't want to gain 100 pounds).... but my point is, all I want to do is get healthy. If that doesn't mean losing this weight, then so be it. If I do lose it, well, I will consider it a major bonus of course! I think women spend so much time worrying about their weight, when what they should really be focused on is whether or not they take care of themselves and are focused on how they feel. When you think about it, why do we all need scales?
Juice or Smoothie? I bought a juicer, and now I'm thinking twice about it. It seems like a lot of work, and a lot of money. I discovered these super healthy smoothies that seemed expensive until I really started to calculate what I am going to spend on fruit and veggies for the juicer, not to mention the time and energy it will take to make all of these drinks I'm planning to have. So what do I do? Abandon the juicer and stock up on the smoothies? It seems like it can't be the most cost effective this way, but how can I possibly buy 6.5 apples, 3.5 oranges, 1 banana, and 3.75 mangoes for under the cost of the fruit smoothie ($3.15)? Why is this so puzzling to me?
When am I going to stop being hungry? Anyone? Ben says it's in my head because I'm thinking about it constantly. Really, babe? I'm sure perseverating on this fact doesn't help anything, but no matter what I do my stomach is really and truly growling at me. How can I stop thinking about it when I'm interrupted every five minutes by a snoring elephant? It's really pretty aggravating at this point. The worst part is still that I don't want to eat most of the time. I just don't get it. I bought Tilapia for dinner tonight and had to put it in the freezer, because the thought of putting that in my mouth made me want to gag. This is almost like being pregnant again, except without the babies... and without the bread.
Tonight I had my very first "normal" meal. By normal I mean that I didn't do anything different than before before my diagnosis (aside from checking the labels). TACOS!!!! Yum. Another interesting question that I'm pondering... other than bread, why are most of my favorite foods gluten-free? Is this just a lucky coincidence? Well, whatever the answer is, I might as well stop asking questions and just enjoy what I can!
Sunday, January 29, 2012
Day Four:
Neurologist. Rheumatologist. Endocrinologist. Orthopedist. Dermatologist. Otolaryngologist. Podiatrist. Gastroenterologist. Allergist. Perinatologist.
This is a list of many of the types of specialists I have been to in my life. I always told my mom I would be in a medical journal some day... I'm still wondering. I won't be talking about most of the doctors listed above in today's post, mostly because many of them deal with other issues I've had. We'll leave that for another day... and maybe another blog. ;) I can't help but wonder, though.... how much of it all connects to where I am now and this disease? As you read on, you'll see what I mean....
You may be wondering how I got to this diagnosis.... My medical history is very long and complicated (obviously), so I'll try to leave out the unrelated stuff! I felt compelled to share this part of my story because some of you, or people you know, might be having similar problems and have no idea that it may be due to Celiac Disease, or even just a sensitivity to gluten. 1 out of 133 people is affected by this disease, and 97% of them are undiagnosed. Some of my symptoms include severe fatigue, unexplained weight gain, abdominal bloating, joint pain, and migraine headaches. Here is a link if you want to read about all of the symptoms. The interesting thing is that most of my symptoms are not classic symptoms of Celiac Disease. However, weight gain is a classic symptom, but so is weight loss... so how is a doctor supposed to even guess that this is a possibility?
Believe it or not, my story began in my early teens, when a positive ANA blood test (some kind of antibody level that was very abnormal) led me to my first autoimmune disease diagnosis- Vitiligo. My body began attacking healthy pigment cells, and parts of my body lost all color. This disease has ebbed and flowed throughout the years, and affects nearly every joint on my body. At times it seems to stabilize and even regenerate itself, and at other times it spreads like wildfire leaving me very discolored. For years I was plagued by this disease. I was so upset and embarrassed when I looked at my face, my hands, my arms. But then I realized that I had an autoimmune disease and I wasn't sick. I was lucky. Around the same time, I was having stomach problems and learned I was severely lactose intolerant. I failed the test with flying colors and was sent on my way with a list of foods that I could eat. (This was back when LI wasn't well known. I have a vivid memory of crying to my mom that the only thing on the list was marshmallows and peanut butter. Ha!) This, too, has varied in intensity throughout my life, but still plagues me. However, in reading about Celiac Disease, LI can actually resolve itself after beginning a gluten-free diet. After nearly two decades with a dairy-induced stomachache (among other things!), can you imagine how much hope I have?
In my later teens, I was diagnosed with Hypermobility. I was constantly having pains and overdoing it... one day it would be my hip, then my knee, then my wrist. Hypermobility is diagnosed with a Beighton Scale... you can score a maximum of 9 points, depending on how loose your joints are and how many of the maneuvers you can do (such as bending your thumb down to touch your wrist). Wouldn't you know, I scored a 9. And in case you're wondering, yes, I can do that. Try it- it's bizarre. I recently learned that the bilateral hernias I suffered at age 21 and 24 were probably a result of being hypermobile. Who'd have thunk it. In high school, the migraines started. I've had periods of time when they aren't too bad, and then other times when they have drastically impacted my life. During one of my worst spells, I was instructed to track every migraine for almost a year so that we could find the cause, but the doctor was never able to find a common denominator between them. So I just continued to deal.
Age 30. I began to gain weight. Am I getting old? My weight has always fluctuated by two to three pounds, so the first few pounds didn't raise any red flags. But then came five pounds. And then five more. This may not seem like a lot, but it was the most I had ever gained at once, aside from the 32 pounds during pregnancy. At first I chalked it up to motherhood and not taking good care of myself. But after a few months, no matter what I tried I couldn't get the weight to come off, not even a pound. And then, the fatigue set in. I've always, always, always, been a tired person since as long as I can remember. I'm the first to bed and the last to rise. I love to sleep. But this fatigue was different. I would complain about it to my doctor, but we would both just laugh and then talk about my life with twins. This went on for quite some time, until I began noticing the fatigue was getting worse, yet my girls were getting older and somewhat easier to take care of. I couldn't make it through a day without napping. By 8:00 at night, I would fall asleep and Ben would gently guide me up to bed... unable to get me up before 7:00 the next morning. And I was still impossibly, frustratingly, tired. I couldn't help but complain, and even I got tired (ha! pun intended!) of listening to it.
Nothing seemed to make sense. The joint pains were worse than ever... getting out of bed became a struggle some days. And the headaches were horrible. I was also feeling so anxious that I began grinding my teeth at night. Then my OB/GYN decided to run a test. She said she had been thinking about everything I'd been saying and something wasn't adding up. She was the only person I trusted and I knew she believed me... that something must be wrong. She was right. I was diagnosed with Hashimoto's Disease a short time later, which is another autoimmune disease that affects the thyroid. Hallelujah, I have an answer! Off to a new doctor I went, who assured me that the right medication would fix my symptoms. At first I thought I was getting better. I lost a pound and seemed to get up a little quicker in the morning. The placebo effect? Who knows. About three months into treatment I realized that nothing had changed. Not my weight, my forgetfulness, my anxiety, my pain, nor my fatigue. Wow. You can imagine how deflated I felt. So I went back to my OB/GYN, which seems ridiculous, but really was the only place I could turn to. With now two verified autoimmune disease plaguing me, it was time to call in some help. She encouraged me to see a Rheumatologist, which made my head spin because I knew it just meant more tests. I put it off for almost a month, and then with the encouragement of my friend Val, finally realized I couldn't just wish these symptoms away. And here I am today. You'd think I would feel skeptical, given my lack of success with the Hashimoto's treatment. But I'm not skeptical at all, because wouldn't you know, Celiac is commonly linked to thyroid disorders. I've also been told that most people with autoimmune diseases have more than one. So all I have left is hope that this is the diagnosis. This has to be it. All of the statistics show that it typically takes 4 years to diagnose Celiac Disease, so I know that I'm not alone. Third diagnosis is the charm, right?
P.S. I'm hungry!
Neurologist. Rheumatologist. Endocrinologist. Orthopedist. Dermatologist. Otolaryngologist. Podiatrist. Gastroenterologist. Allergist. Perinatologist.
This is a list of many of the types of specialists I have been to in my life. I always told my mom I would be in a medical journal some day... I'm still wondering. I won't be talking about most of the doctors listed above in today's post, mostly because many of them deal with other issues I've had. We'll leave that for another day... and maybe another blog. ;) I can't help but wonder, though.... how much of it all connects to where I am now and this disease? As you read on, you'll see what I mean....
You may be wondering how I got to this diagnosis.... My medical history is very long and complicated (obviously), so I'll try to leave out the unrelated stuff! I felt compelled to share this part of my story because some of you, or people you know, might be having similar problems and have no idea that it may be due to Celiac Disease, or even just a sensitivity to gluten. 1 out of 133 people is affected by this disease, and 97% of them are undiagnosed. Some of my symptoms include severe fatigue, unexplained weight gain, abdominal bloating, joint pain, and migraine headaches. Here is a link if you want to read about all of the symptoms. The interesting thing is that most of my symptoms are not classic symptoms of Celiac Disease. However, weight gain is a classic symptom, but so is weight loss... so how is a doctor supposed to even guess that this is a possibility?
Believe it or not, my story began in my early teens, when a positive ANA blood test (some kind of antibody level that was very abnormal) led me to my first autoimmune disease diagnosis- Vitiligo. My body began attacking healthy pigment cells, and parts of my body lost all color. This disease has ebbed and flowed throughout the years, and affects nearly every joint on my body. At times it seems to stabilize and even regenerate itself, and at other times it spreads like wildfire leaving me very discolored. For years I was plagued by this disease. I was so upset and embarrassed when I looked at my face, my hands, my arms. But then I realized that I had an autoimmune disease and I wasn't sick. I was lucky. Around the same time, I was having stomach problems and learned I was severely lactose intolerant. I failed the test with flying colors and was sent on my way with a list of foods that I could eat. (This was back when LI wasn't well known. I have a vivid memory of crying to my mom that the only thing on the list was marshmallows and peanut butter. Ha!) This, too, has varied in intensity throughout my life, but still plagues me. However, in reading about Celiac Disease, LI can actually resolve itself after beginning a gluten-free diet. After nearly two decades with a dairy-induced stomachache (among other things!), can you imagine how much hope I have?
In my later teens, I was diagnosed with Hypermobility. I was constantly having pains and overdoing it... one day it would be my hip, then my knee, then my wrist. Hypermobility is diagnosed with a Beighton Scale... you can score a maximum of 9 points, depending on how loose your joints are and how many of the maneuvers you can do (such as bending your thumb down to touch your wrist). Wouldn't you know, I scored a 9. And in case you're wondering, yes, I can do that. Try it- it's bizarre. I recently learned that the bilateral hernias I suffered at age 21 and 24 were probably a result of being hypermobile. Who'd have thunk it. In high school, the migraines started. I've had periods of time when they aren't too bad, and then other times when they have drastically impacted my life. During one of my worst spells, I was instructed to track every migraine for almost a year so that we could find the cause, but the doctor was never able to find a common denominator between them. So I just continued to deal.
Age 30. I began to gain weight. Am I getting old? My weight has always fluctuated by two to three pounds, so the first few pounds didn't raise any red flags. But then came five pounds. And then five more. This may not seem like a lot, but it was the most I had ever gained at once, aside from the 32 pounds during pregnancy. At first I chalked it up to motherhood and not taking good care of myself. But after a few months, no matter what I tried I couldn't get the weight to come off, not even a pound. And then, the fatigue set in. I've always, always, always, been a tired person since as long as I can remember. I'm the first to bed and the last to rise. I love to sleep. But this fatigue was different. I would complain about it to my doctor, but we would both just laugh and then talk about my life with twins. This went on for quite some time, until I began noticing the fatigue was getting worse, yet my girls were getting older and somewhat easier to take care of. I couldn't make it through a day without napping. By 8:00 at night, I would fall asleep and Ben would gently guide me up to bed... unable to get me up before 7:00 the next morning. And I was still impossibly, frustratingly, tired. I couldn't help but complain, and even I got tired (ha! pun intended!) of listening to it.
Nothing seemed to make sense. The joint pains were worse than ever... getting out of bed became a struggle some days. And the headaches were horrible. I was also feeling so anxious that I began grinding my teeth at night. Then my OB/GYN decided to run a test. She said she had been thinking about everything I'd been saying and something wasn't adding up. She was the only person I trusted and I knew she believed me... that something must be wrong. She was right. I was diagnosed with Hashimoto's Disease a short time later, which is another autoimmune disease that affects the thyroid. Hallelujah, I have an answer! Off to a new doctor I went, who assured me that the right medication would fix my symptoms. At first I thought I was getting better. I lost a pound and seemed to get up a little quicker in the morning. The placebo effect? Who knows. About three months into treatment I realized that nothing had changed. Not my weight, my forgetfulness, my anxiety, my pain, nor my fatigue. Wow. You can imagine how deflated I felt. So I went back to my OB/GYN, which seems ridiculous, but really was the only place I could turn to. With now two verified autoimmune disease plaguing me, it was time to call in some help. She encouraged me to see a Rheumatologist, which made my head spin because I knew it just meant more tests. I put it off for almost a month, and then with the encouragement of my friend Val, finally realized I couldn't just wish these symptoms away. And here I am today. You'd think I would feel skeptical, given my lack of success with the Hashimoto's treatment. But I'm not skeptical at all, because wouldn't you know, Celiac is commonly linked to thyroid disorders. I've also been told that most people with autoimmune diseases have more than one. So all I have left is hope that this is the diagnosis. This has to be it. All of the statistics show that it typically takes 4 years to diagnose Celiac Disease, so I know that I'm not alone. Third diagnosis is the charm, right?
P.S. I'm hungry!
Saturday, January 28, 2012
Dr. Oz on Celiac Disease vs. Gluten Intolerance
Check out this video to learn more about Celiac Disease from Dr. Oz. It's very informative and a real eye-opener.
Check out this video to learn more about Celiac Disease from Dr. Oz. It's very informative and a real eye-opener.
Day Three:
Peanut butter. I've decided it's my new favorite thing. It's 4:50 a.m. and I'm eating a spoonful, along with a clementine, because I couldn't stay one more minute in bed. Interestingly enough, I didn't feel like I was hit by a truck when I got up and headed downstairs for a snack. Hmmmm.... could this be? A cure? The glass has to be half full, I know.... I am trying to change my pessimism here. It's quite difficult when all I keep thinking about are new things to mourn. Like when my Ben, my sweet, loving, but sometimes clueless hubby, came out of the blue at 11:00 last night with the word "calamari," which sent me into tears. He's trying to mourn with me, I know, but it only keeps reminding me of the favorite (ohhhh, the favorite!!!!!!!) things I can no longer enjoy in the way I used to. But I have to remember he means well, and we'll get through this as long as I keep on communicating to him, and everybody else, what I need.
This morning, when I woke up HUNGRY, my first thought was my two little girls asleep in their beds. I started to cry because I felt overwhelmingly sad. (There's that term "overwhelmed" again, sorry!) Yes, it's great that this disease can cure me. Absolutely, I know I will be (and am) thankful for that. But what about what's lost? I can't help but think about it. My two beautiful girls and the time that we've had since I've been home with them. How many opportunities were missed because I had to rest, or couldn't wake up in the morning after too many hours of sleep? "Mommy, how are you feeling today?" my Lauren now asks me every morning. It's almost too painful to think about. I am grateful that I haven't had to work full time during this time, as I have had soooo many snuggles with my babies, and too many good times to count. Plus, I don't know if I could have physically handled it. But at the same time, why did my girls have to pay a price, too, for this disease? I want to rewind the clock for them, and give them all of me, not just the pieces they have gotten. In eight months they will be off to school full time, and even though it isn't my fault, I can't keep the thought out of my mind that I've wasted all of the precious time I've had with them. I guess it's going to take some more time... some more acceptance... and definitely some more peanut butter.
Okay.... A juicer. A breadmaker. A new attitude. Those are the three things I've decided I need on day three. I'm still starving all of the time, and I have no desire to eat (except in the middle of the night, apparently). It's almost like my body is protesting against this new diagnosis. Nothing, and I mean nothing, sounds appealing to me. Not even popcorn, which, if you know me is quite shocking, since it's pretty much a staple in my diet. I've done some research, and I'm amazed to learn that being hungry all the time is a normal and quite common reaction for a person with Celiac who has just gone gluten-free. Honestly, I was hoping that when I put the terms "celiac, diet, starving all the time" into Google, I would get a million hits on medical sites that would tell me that it meant my Celiac test was a false positive, and that if I was hungry all the time I must add gluten back into my diet. Too bad I'm not off the hook. Instead, I got a lot of sites that described just exactly what I'm going through. Hmph. This is a little scary for me because it means this disease is real now. Apparently my body is trying to make up for the time it wasn't properly absorbing the nutrients from food. I have so many questions.... Dare I say that I think this means I am on my way (turtle steps) to acceptance?
You are probably wondering about my dinner last night... well, let's just say that it was the best meal I've had since becoming gluten-free. I know that doesn't say much, but it should. It was a fabulous meal. I had my own menu, and despite the little GF in the corner, no one would suspect a thing! There were two whole pages of food choices, and I am happy to report that everything from start to finish was pretty darn tasty. The bread was a little different, but still good, and my salad, pasta, and flourless chocolate cake did the trick. I'm sure the two glasses of wine helped a little, but who cares... the point is, I enjoyed my meal. Hooray! Thanks, Mom....my GirlFriend and GlutenFree date. I feel happier today, knowing that 1. I have leftovers for dinner tonight, and 2. I can go out to dinner once in a while and actually enjoy it. Phew! Nevermind the bill, and the fact that two hours after I got home I was STARVING, AGAIN!!!!!!!
P.S. Spell check. The word Celiac comes up as a misspelled word. Pretty funny because the word becomes highlighted in BRIGHT YELLOW and stays that way until you fix it. Thanks for the GLARING REMINDER! Some of my choices to fix it are: Celia, Celka, Celtic, Celina, Celeriac. Maybe I'll start to refer to it as Celka Disease. Get with the program, Google!!!!
Peanut butter. I've decided it's my new favorite thing. It's 4:50 a.m. and I'm eating a spoonful, along with a clementine, because I couldn't stay one more minute in bed. Interestingly enough, I didn't feel like I was hit by a truck when I got up and headed downstairs for a snack. Hmmmm.... could this be? A cure? The glass has to be half full, I know.... I am trying to change my pessimism here. It's quite difficult when all I keep thinking about are new things to mourn. Like when my Ben, my sweet, loving, but sometimes clueless hubby, came out of the blue at 11:00 last night with the word "calamari," which sent me into tears. He's trying to mourn with me, I know, but it only keeps reminding me of the favorite (ohhhh, the favorite!!!!!!!) things I can no longer enjoy in the way I used to. But I have to remember he means well, and we'll get through this as long as I keep on communicating to him, and everybody else, what I need.
This morning, when I woke up HUNGRY, my first thought was my two little girls asleep in their beds. I started to cry because I felt overwhelmingly sad. (There's that term "overwhelmed" again, sorry!) Yes, it's great that this disease can cure me. Absolutely, I know I will be (and am) thankful for that. But what about what's lost? I can't help but think about it. My two beautiful girls and the time that we've had since I've been home with them. How many opportunities were missed because I had to rest, or couldn't wake up in the morning after too many hours of sleep? "Mommy, how are you feeling today?" my Lauren now asks me every morning. It's almost too painful to think about. I am grateful that I haven't had to work full time during this time, as I have had soooo many snuggles with my babies, and too many good times to count. Plus, I don't know if I could have physically handled it. But at the same time, why did my girls have to pay a price, too, for this disease? I want to rewind the clock for them, and give them all of me, not just the pieces they have gotten. In eight months they will be off to school full time, and even though it isn't my fault, I can't keep the thought out of my mind that I've wasted all of the precious time I've had with them. I guess it's going to take some more time... some more acceptance... and definitely some more peanut butter.
Okay.... A juicer. A breadmaker. A new attitude. Those are the three things I've decided I need on day three. I'm still starving all of the time, and I have no desire to eat (except in the middle of the night, apparently). It's almost like my body is protesting against this new diagnosis. Nothing, and I mean nothing, sounds appealing to me. Not even popcorn, which, if you know me is quite shocking, since it's pretty much a staple in my diet. I've done some research, and I'm amazed to learn that being hungry all the time is a normal and quite common reaction for a person with Celiac who has just gone gluten-free. Honestly, I was hoping that when I put the terms "celiac, diet, starving all the time" into Google, I would get a million hits on medical sites that would tell me that it meant my Celiac test was a false positive, and that if I was hungry all the time I must add gluten back into my diet. Too bad I'm not off the hook. Instead, I got a lot of sites that described just exactly what I'm going through. Hmph. This is a little scary for me because it means this disease is real now. Apparently my body is trying to make up for the time it wasn't properly absorbing the nutrients from food. I have so many questions.... Dare I say that I think this means I am on my way (turtle steps) to acceptance?
You are probably wondering about my dinner last night... well, let's just say that it was the best meal I've had since becoming gluten-free. I know that doesn't say much, but it should. It was a fabulous meal. I had my own menu, and despite the little GF in the corner, no one would suspect a thing! There were two whole pages of food choices, and I am happy to report that everything from start to finish was pretty darn tasty. The bread was a little different, but still good, and my salad, pasta, and flourless chocolate cake did the trick. I'm sure the two glasses of wine helped a little, but who cares... the point is, I enjoyed my meal. Hooray! Thanks, Mom....my GirlFriend and GlutenFree date. I feel happier today, knowing that 1. I have leftovers for dinner tonight, and 2. I can go out to dinner once in a while and actually enjoy it. Phew! Nevermind the bill, and the fact that two hours after I got home I was STARVING, AGAIN!!!!!!!
P.S. Spell check. The word Celiac comes up as a misspelled word. Pretty funny because the word becomes highlighted in BRIGHT YELLOW and stays that way until you fix it. Thanks for the GLARING REMINDER! Some of my choices to fix it are: Celia, Celka, Celtic, Celina, Celeriac. Maybe I'll start to refer to it as Celka Disease. Get with the program, Google!!!!
Friday, January 27, 2012
Day Two:
"Why can't you eat the things I eat, Mama?" says my almost-five year old Lauren. Good question. I'm thinking, "Because life is cruel!" but instead, I say, "Because some of the foods you eat give Mommy a tummy ache," and that seems to satisfy her curiosity... for now. My almost-five year old, Natalie, on the other hand, takes a bite of my gluten-free bread and says "Ewwww... this tastes like yuck." My sentiments exactly. Someone told me that I have to change my way of eating, and I think I've come to the sad realization that this is true. Some things just shouldn't be made in a gluten-free form. I'm a grown woman and I'm just going to have to accept the fact that I'm done eating them. Really?! Ughh... well, I guess the first step is admittance. I'm just not quite ready to accept it yet.
Lipstick. Lotion. Shampoo. Soy sauce. Pickles. Salad dressing. These are things I had no idea might have gluten in them. This is where I feel completely and utterly defeated and overwhelmed. Another thing is contamination. I need my own butter, my own toaster tray, my own pan when we cook.... segregation is key. It seems silly, but it makes me feel sad to have to label all my food like I'm an outsider in this family... like using a different tub of butter somehow makes me less connected to my counterparts. This is hereditary, so I pray everyday that my sister and my children don't suffer my same fate. Only time will tell. In the meantime, I will just try to find the positive here.... I don't have to share my food (who wants it anyway!?) and no one will double dip in my containers. Yay!
On the upside, I'm eating a bagel today. Udi's. It's not half bad. The aftertaste is not my favorite, but I'm figuring it'll be an acquired taste. At least it's a bagel. I silently mourn the loss of Nicky's Jersey bagels, but am trying to stay strong. One step at a time. Tonight I'll take my first journey to the outside world... restaurant eating. It's an upscale restaurant (of course) with it's own gluten-free menu. It gives me hope. If I go to a place like Chili's, their gluten-free menu includes a hamburger, with no bun and no fries- ha! That sounds like a real treat. Hopefully if I spend a chunk of change at an upscale place, they'll at least attempt to make a decent meal and hide from the rest of the table that it's gluten free. I can just imagine the horror of my children watching me eat a plain hamburger on a plate at Chili's. What a sight that would be!
By the way, I have a support group. It's not the kind where you meet every week and sit in a circle with donuts (ha!) and coffee, but it's my lifeline right now. My Mom. She's gluten-sensitive and is at least a month into her new life. She's thriving on this diet, so thank God for her support. She's my personal shopper and cheerleader, pushing me through the lowest of the low points. My Aunt Kath is my celiac buddy, too, so I'm feeling the love. She answers my million questions about different products and lets me vent about how much this sucks. Gotta love her. And Ellen, who's gluten-sensitive and has a never ending knowledge base on this topic. She is incredibly enthusiastic and has been on this diet the longest, so I know there is hope. I'm not happy about joining this stupid club, but at least I'm not the first member.
I will get through this, and things will get better. In fact, things will get greater. Right?!
"Why can't you eat the things I eat, Mama?" says my almost-five year old Lauren. Good question. I'm thinking, "Because life is cruel!" but instead, I say, "Because some of the foods you eat give Mommy a tummy ache," and that seems to satisfy her curiosity... for now. My almost-five year old, Natalie, on the other hand, takes a bite of my gluten-free bread and says "Ewwww... this tastes like yuck." My sentiments exactly. Someone told me that I have to change my way of eating, and I think I've come to the sad realization that this is true. Some things just shouldn't be made in a gluten-free form. I'm a grown woman and I'm just going to have to accept the fact that I'm done eating them. Really?! Ughh... well, I guess the first step is admittance. I'm just not quite ready to accept it yet.
Lipstick. Lotion. Shampoo. Soy sauce. Pickles. Salad dressing. These are things I had no idea might have gluten in them. This is where I feel completely and utterly defeated and overwhelmed. Another thing is contamination. I need my own butter, my own toaster tray, my own pan when we cook.... segregation is key. It seems silly, but it makes me feel sad to have to label all my food like I'm an outsider in this family... like using a different tub of butter somehow makes me less connected to my counterparts. This is hereditary, so I pray everyday that my sister and my children don't suffer my same fate. Only time will tell. In the meantime, I will just try to find the positive here.... I don't have to share my food (who wants it anyway!?) and no one will double dip in my containers. Yay!
On the upside, I'm eating a bagel today. Udi's. It's not half bad. The aftertaste is not my favorite, but I'm figuring it'll be an acquired taste. At least it's a bagel. I silently mourn the loss of Nicky's Jersey bagels, but am trying to stay strong. One step at a time. Tonight I'll take my first journey to the outside world... restaurant eating. It's an upscale restaurant (of course) with it's own gluten-free menu. It gives me hope. If I go to a place like Chili's, their gluten-free menu includes a hamburger, with no bun and no fries- ha! That sounds like a real treat. Hopefully if I spend a chunk of change at an upscale place, they'll at least attempt to make a decent meal and hide from the rest of the table that it's gluten free. I can just imagine the horror of my children watching me eat a plain hamburger on a plate at Chili's. What a sight that would be!
By the way, I have a support group. It's not the kind where you meet every week and sit in a circle with donuts (ha!) and coffee, but it's my lifeline right now. My Mom. She's gluten-sensitive and is at least a month into her new life. She's thriving on this diet, so thank God for her support. She's my personal shopper and cheerleader, pushing me through the lowest of the low points. My Aunt Kath is my celiac buddy, too, so I'm feeling the love. She answers my million questions about different products and lets me vent about how much this sucks. Gotta love her. And Ellen, who's gluten-sensitive and has a never ending knowledge base on this topic. She is incredibly enthusiastic and has been on this diet the longest, so I know there is hope. I'm not happy about joining this stupid club, but at least I'm not the first member.
I will get through this, and things will get better. In fact, things will get greater. Right?!
Thursday, January 26, 2012
Day One:
Two words. Celiac Disease. And My life has been forever changed. I know, I should be jumping for joy, as I am now on my way to feeling better and have a diagnosis that doesn’t include an early demise (I hope), but let’s face the facts, people- plain and simple- this sucks. Anyone who tries to tell me otherwise has never tasted a fresh baguette in Paris. There must be phases of this disease, and I’m calling the first one pure and bitter rage. I’m pissed. It’s been a long road to this diagnosis, I’ll spare the details… the point is, I’m here and it totally sucks! I suppose the fact that I still feel horrible doesn’t help anything, and finding out about my fate on the heels of a ruptured ear drum (seriously!?) really only added icing to my now gluten-free cake (yuck). I’m like a toddler throwing a tantrum at this point and I’ve decided that I’m allowed at least a few days of stomping my feet and banging my fists on the wall. Because really, I’m never again going to have a good piece of bread in my life. Seriously?! I am thankful for all of the supportive people in my life, trying to put a positive spin on this ridiculous punishment, but right now I just need to vent. Unless you’ve been told you will never again have a Fiore’s garlic knot, or a piece of Pepe’s pizza, or Jimmy’s fried shrimp, you cannot possibly understand what I’m going through. I suppose this pity party will have to end at some point, I’m just not ready yet. There must be a bright light somewhere…. the only one I can see is the clock, which is telling me it’s 1:53 a.m., and I’m awake, and STARVING. Ha! My body is calling out in desperation for all of those wonderfully delicious foods that I’ve thoughtlessly shoved in for the last 31 years. Hmph. Well, at least I can still have french fries…..
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