My Celiac Story - Did you know?

Did you know that there is an increased chance of developing celiac disease if you are a type 1 diabetic, particularly in your adult years? No? Me neither, but apparently it's quite common.  I've been a type 1 diabetic since I was 11 yrs old (1989 to be exact) and now that I’m in my 30s (eek!) and I have been officially diagnosed with celiac disease since August 2009.

My celiac story is sort of unique (or maybe not). I spent the past 10+ years fighting unsuccessfully with significantly low iron levels. I always felt sluggish and I couldn't get enough sleep, no matter what I did. I ate red meat even though I really didn't enjoy it and I took daily iron supplements even though they upset my stomach. This went on for years. I had been to my family doctor numerous times and there was no logical explanation to be found. I had had many various blood tests run over the years, including a yearly thyroid test, all tests showed no reason for concern.

It took until I spoke with a Hematologist (blood specialist) whom I work with at the hospital before celiac disease was even a consideration. I simply wanted to get some IV iron supplemented in hopes of maintaining an appropriate iron level in my blood. The hematologist opted to check my blood test records and then she requested a panel of other blood tests, one of which was the test for celiac disease.

After my positive blood test result for celiac a referral was made to see a Gastroenterologist (GI specialist) for a gastrointestinal scope. This scope was completed to determine the level of damage in my small intestine and to rule out anything more major.

When I mentioned to my endocrinologist (diabetes specialist) that I had been newly diagnosed with Celiac disease, to my surprise, he wasn’t at all surprised. He actually said “yes it is very common for type 1 diabetics to become celiac at around age 30.” What? Why didn’t anyone ever tell me this? If this is common, why would none of my doctors think to suggest we run the blood test for celiac disease? Why didn't anyone think of celiac as a reason for my ongoing struggle with low iron levels? How did so many years go by and so many horrible stomach aches continue with no resolve?

I have since learned that the reason that type 1 diabetics have an increased chance of developing celiac disease: because both diseases are auto-immune diseases and “auto-immune diseases travel in packs,” at least this is how it was explained to me.

There is no point in laying blame or pointing fingers at anyone for missing this diagnosis, however I can recommend that other people request their doctor run the blood test if they think they might be celiac. It's a simple blood test and the results can not only make your stomach aches go away, but increase your body's ability to absorb the necessary nutrients (in my case iron) it needs to function at top level.

The following website is a useful tool in understanding the tests and findings that lead to a celiac diagnosis. http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

Contributed by Amanda