From Leander, Texas, USA:
My son was diagnosed with celiac disease and type 1 diabetes about 16 months ago, has been having symptoms of irritable bowel syndrome for almost a year now, and his sugars are out of control (way up one minute and way down the next). We thought he was getting some source of gluten, but his blood work and endoscopy were completely clean. The GI doc thought it was a misdiagnosis, but when we put him back on wheat and re-tested, he was positive. We put him back on the gluten-free diet, and his tests are good again. His insulin levels, C-peptide, A1c, and antibodies have always been completely normal. If you just looked at these tests, you wouldn't know he had diabetes. I'm told he is still in the honeymoon phase, but I was also told it just doesn't last this long.
I've been very happy with his endocrinologist, but he can't seem to help me figure out what's going on. My son seems to be sick all the time, and his symptoms are classic for celiac disease and/or high blood sugars. He does have highs, but they are pretty few and far between, unless he is specifically sick. He has a a lot of lows. He sometimes has five or more a day, and sometimes I have to stay up all night and keep checking his sugars because he will be 200 mg/dl [11.1mmol/L] at 2:00 am, but by 3:00 am, he's 34 mg/dl [1.9 mmol/L].
Every time I take him in to find out what's going on, they run the same celiac and diabetes tests, but don't find anything. What else might be going on? What should I ask them to do? I'm very worried about him because his symptoms are getting worse. They include joint and muscle pain, headaches, back pain, pain when urinating or having a bowel movement, stomach pain, general "bad" feeling, insomnia (very bad sometimes), occasional cough. In addition, sometimes he just doesn't come back up from a low, and we usually have to give him twice the amount of sugar as usual along a "stomach pill" (Levsin). Even then, he usually drops again within and hour or so. Other days, I can't get him below 400 mg/dl [22.2 mmol/L] to save my life. Please help!
From this rather complicated story, I would assume that your son has the Autoimmune Polyglandular Syndrome Type II, which is a condition in which a number of autoimmune conditions can occur together. I understood that your son did have a positive antitransglutaminase test at diagnosis, but it is well recognised that this test as well as the biopsy appearance can become negative after a time on a gluten free diet. So, I am sure that the celiac disease diagnosis is unchallenged. I am puzzled however by the negative antibody tests for type 1A (autoimmune) diabetes, and I think you should discuss this with the doctor. It might be that as an economy measure he was only tested for islet cell antibodies using just the immunofluorescent screening test and did not have the now routine anti-insulin, ICA512 and GAD tests. Certainly though, it would make sense now to test for other components of this syndrome including hypothyroidism with a TSH and for adrenal insufficiency with an anti-21hydoxylase level. This latter component might explain his problem with hypoglycemia. Loss of bone density can also occur in celiac disease and this might explain his back and joint pain.
Two final suggestions would to go over his diet with the dietitian on his the team and his problems as a whole with the Medical Social Worker. I hope this will offer some new suggestions for your son's care.
Additional comments from Dr. Stuart Brink:You need to go back to your son's pediatric diabetes team and work some of the problems out once again. Make sure they have checked for adrenal insufficiency and also thyroid problems as well as what you have already mentioned. Some stomach and intestinal motility studies may also be warranted. Lastly, testing for celiac disease is not 100%. If someone does better clinically with the difficult gluten-free diet approach, then it may be reasonable to continue this approach even if the testing is negative. I have experience with one such patient.
Original posting 15 Jan 2003
Posted to Other Illnesses
Last Updated: Tuesday April 06, 2010 15:09:42
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