I left off my personal story of being diagnosed with Celiac disease (Why the gluten free diet?) telling you I'd get into the details of the disease. Here's the scoop.
Celieac Disease is...
- genetic (although no one in my family wanted to get tested, so I'm it)
- chronic (for life!)
- an autoimmune disease (like Type 1 Diabetes, some Thyroid Disease, Multiple Sclerosis, Rheumatoid Arthritis, Crohn's disease, and many others, our bodies fight themselves) If you have one autoimmune disease, you have a good chance of having or developing another.
- a disease with one treatment: a gluten free diet
So, if you THINK you have Celiac disease, that does NOT mean you should try a gluten free diet. It DOES mean that you should have a blood test done. Have your doc do a Celiac panel. This will test for antibodies in your blood that indicates that your body is currently treating gluten as a toxic substance. Folks, admit it, you wouldn't stick to this diet unless you knew for sure that it was 100% necessary. You must get the test! Don't self-diagnose! You have to be actively eating gluten in order for these tests to give you proper results. If your blood test comes back positive, then you have to get the endoscopy and small intestine biopsy to confirm the diagnosis.
Two last bad doctor stories
After several years of a gluten free diet, I went to a gastroenterologist and told him, listen, this diet is not fixing the problem! I still feel like crap ALL the time! He said, "Well they should have told you to go lactose free as well!" Turns out, if my digestive tract was in recovery mode, it was in no position to be digesting lactose. An easy switch to lactaid milk for my cereal and vanilla soymilk for my lattes made a huge difference! Lactaid pills don't work for me, but I ingest lactose in small doses anyway and just deal with minor upper-digestive tract pains. (Hey, I'm not giving up pizza AND ice cream, plus, WI girls need their cheese!) Yes, distinguishing between lactose stomach aches and gluten stomach aches is just one of my many talents.
Finally, maybe two years ago I went to get an endoscopy to check out how things were going and to see if yet another new doctor (change of health insurance) could figure out why I STILL didn't feel good. I got the results via voicemail where some nurse told me, "We tested you for this disease called Celiac, which is a blah blah blah, and you DO NOT have Celiac disease." Of course, if I were an idiot, I would have rejoiced and gone out and ate an entire Pizza Hut stuffed crust pizza for dinner. However, because I'm educated about my health, I knew that the nurse didn't see on my chart that I DO have celiac disease, had been on a gluten free diet for 5 years, and THAT is why the test came back negative. I called them back and confirmed this with the doctor, who didn't seemed the slightest bit concerned that his his nurse was spreading false hope by not looking at people's charts before delivering lab results to patients. The good news was that my villi had recovered enough to test negative. So, my current stomach aches must just be unavoidable, unless I want to search for other intolerances (soy? corn? more strict on the lactose?). We'll see.