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!