Wednesday, August 02, 2006

Prevalence of Celiac Disease

Every day it seems I read yet another article telling of how the prevalence, or certainly the awareness of the prevalence, of Celiac disease is on the rise here in the United States. Other countries like Italy have long recognized this issue as a widespread problem affecting their population. But, the USA has lagged in awareness for a variety of reasons, primarily due to ignorance on the part of the general Physician community. Too many doctors have been educated in a system that told of Gluten Intolerance (Celiac Disease) as a disease that affects one in 5000 (quite rare), and as such they are not looking for it being the root cause of symptoms their patients exhibit.

But, this is (perhaps, and hopefully) changing. I hope that doctors in general are reading some of the same publications I do, and getting in touch with how widespread this disorder really is. This recent article about how widespread Celiac Disease is provides yet another example of the type of information I am talking about. And, some interesting quick-facts from the article include these quotes:
  • Researchers now have data showing that celiac actually affects one person out of 100. That makes it the most common inherited autoimmune disease in the United States.
  • Millions of adults have celiac and don't even know it.
  • Bones can become brittle, blood has a harder time carrying oxygen, and brain function may be compromised. Nerves that detect pain may go haywire, resulting in tingling, burning or numbness in the hands or feet and legs.
  • ...often called the "Great Imposter" because it frequently mimics chronic fatigue, osteoporosis, irritable bowel syndrome (IBS), dermatitis or dementia.
  • (Read the article to get more detail)
I was one of those who fit the bill for the situation described in the opening paragraph of that article: "...imagine that your doctor keeps telling you that there's nothing really wrong with you and that it's all in your head...". Yep, doctors just kept telling me there was nothing wrong, as I kept deteriorating further and further.

Luckily, I had a hunch it was what I was eating that was causing my issues, so I started keeping a detailed log-book of everything I ate. I was not even aware of what Celiac disease was at the time, having absolutely no exposure to information on it. Only after my log book kept correlating my apparent "hives", various pain, and problems with my equilibrium (loss of balance) closely with consumption of Wheat-Containing products, did I start to get a clue. And, it was rough, since EVERYTHING (basically) has Wheat and/or Gluten in it it seems. After reducing my diet to just fresh fruits and vegetables for a couple weeks, and slowly introducing other foods back in to my diet, did I catch on to the trend.

The thing that threw me off course in my own "self diagnosis" was that once I thought for sure the common-thread causing problems was wheat, I'd have symptoms after eating something that did not contain wheat. Only later after learning about what Celiac disease was did I learn of that the component in wheat that was likely causing the issue was gluten (a protein), which appears in a variety of other grains -- some of them being favorites of mine like Barley, Rye, and even Oats to some extent (there's a bit of debate there, mostly due to cross-contamination issues). But, after learning about Celiac and Gluten Intolerance, amazingly those foods that were still triggering hives and such happened to contain gluten sources in them.

With this information in hand, I met with my doctors, and they still overwhelmingly felt (feel?) that it is in my head, though my hives are now gone, and other symptoms are gone as well. The only doctor that listened to me and really took the Celiac thing seriously was my Allergist, who had experience with others afflicted as such. Thank God -- someone that finally listened and was educated on this disease. It has been a few years now, and since leading as close to Gluten-Free as possible, my life has made a dramatic turn for the better. All because I became aware of the prevalence of Celiac Disease, and pushed to find a professional that was as well (I also tried to get my general-practitioners to get a clue, but I still am unsure if they "get it").

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