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January 31, 2006

Celiac

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Question from Duluth, Minnesota, USA:

I have had type 1 diabetes for 31 years. I am currently on an insulin pump. My A1cs are generally 6.8 since pump use two years ago. In the last two years, I have had stomach pain on two occasions, lasting three to seven days, with diarrhea and vomiting on the first occasion. I have had a general ill and tired feeling for the last two years. After the first episode, I went to the hospital. They ran an MRI finding nothing. The second time, almost a year later to the date, I had the same problem, but didn’t see a doctor this time. I had an extensive MRI with no result. My wife and I have had two children in the last two years so I attributed my fatigue and illness to catching things from them from daycare and lack of sleep getting up with kids, etc. I also thought the pain could be from the insulin pump. Someone told me his friend went off the pump due to stomach pain. Is there any news on this?

This year, the fatigue and weakness got worse. I vomited after eating pizza on two occasions. My bowel movements were consistent with celiac depending on the web site I checked. I went in for an A1c and explained my symptoms to my doctor. He suspected celiac disease and tested for it. I was also tested for routine liver due to 5 mg a day Lipitor use. I also drink a beer or drink a day to try and increase good cholesterol levels (never worked, though I tried for two years). Anyway, my liver test showed an inflamed liver. I stopped the Lipitor on the doctor’s advice and beer on my advice. I had an ultrasound two weeks later and the liver looked fine. The liver test was redone and was improving. I heard liver function tests can be thrown by celiac. Is this true? I felt somewhat better.

My celiac test was sky high according to my doctor. He had me do a biopsy. The surgeon there said it looked like celiac disease, but we would have to wait for the test results (I think I was groggy). The results came back consistent with celiac disease. The nurse at the biopsy showed me a picture from the biopsy, at my request, that looked like a bunch of stacked pink doughnuts of different sizes. I couldn’t see any villi or hair like things sticking out, not that I knew what I was looking at. The nurse and medical assistant didn’t appear to know either. The surgeon was back in surgery. Are there distinct levels of villi, shortened, almost gone and gone, for example? Do all villi come back? Anyway, I’m curious if the biopsy is supposed to be 100% that you have celiac disease. Why does the surgeon say “consistent with celiac” with rather than “you have celiac disease?” Also, I saw a nutritionist at the Diabetic Center who gave me a handout for a diet that has a lot of reference dates from 20 years ago. Should I be concerned about this or haven’t things changed that much with celiac information? I am on the Net a lot on this, but I am not comfortable believing everything on the Internet. The surgeon wants me back for another biopsy in six months. Is this normal? If so, why not just take a blood test? I feel tons better energy wise on this celiac diet and need less sleep to feel rested. Why is this? Are my villi coming back already? Am I absorbing more nutrition?

My blood sugars are slightly higher then usual lately. Could this be related to better absorption of food? Lastly, I’m 5 feet, 8 inches and 210 pounds. I run a half marathon yearly and try to stay active, but am overweight. How can I be fat and malnourished (celiac) at the same time? I read somewhere on the Net that some people with celiac disease have huge appetites to compensate for absorption problems due to damaged villi. Is this true? I know I have been eating better on this celiac diet. I feel better some days then others. I do have a slight discomfort in the left side of my stomach, just below the ribs. Is this consistent with celiac disease? The pain goes from a one out of ten to a three out of ten for discomfort, but is consistently there.

Answer:

From: DTeam Staff

I will try and answer most of your questions in a general way. People with type 1 diabetes are at increased risk for celiac disease. There are different frequencies of involvement, depending on ethnic group and country of origin. Most patients are diagnosed in the U.S. using the following paradigm: there are symptoms of diarrhea, abdominal pain, and sometimes weight loss. This is followed by serologies that look for antibody levels that are high with celiac disease. To confirm the diagnosis, a small bowel biopsy is obtained. I would suggest you review your biopsy with your surgeon or gastroenterologist that is following you. The reason this is important is that your ability to comply with a gluten-free diet goes a long way towards improving the small bowel pathology. If you cannot follow the diet, the pathology does not improve as much. The fact that you weigh over 200 pounds and have not had weight loss with your symptoms does not rule out celiac disease. Abdominal pain may be part of the symptoms you feel with this condition. You will have to see if this improves with the diet. The gut does not sense pain like the skin. For instance, bloating and distention may be perceived as pain. You may still have to heal a portion of your gut with the diet and time. The repeat biopsy is to make sure the gut is responding to the intervention (which is the diet). It makes sense that the beer would make your pain worse.

I do not think that pump therapy is generally associated with abdominal wall pain, unless you are having a big breakdown in your technique and having infections in the area. I would not be alarmed that the references for the gluten-free diet are twenty years old. The same principals guiding dietary therapy today were in practice 20 years ago. Not a lot has changed, other than you might have a better chance of having some of the items that allow menu selection to be broader on the diet.

JTL