My son was diagnosed 2 months ago with Type 1 diabetes, HOWEVER, he was far more symptomatic of GI issues long before. He tested negative on your basic allergy tests, but he stills has constipation and stomach pains and even sore muscle/ joint complaints. Well, today we went to the GI doctor to get the results for our endoscopy and tissue cultures. They say he is negative on the biopsy reports, but that he is positive for DQ8 allele. I asked what that meant, and the doctor said something to the effect that he is not diagnosed because the negative tissue results, but that with the diabetes AND his symptoms he may very well develop it. i asked if i should start a gluten free diet and she said that wouldn't put him on it because he still isn't a celiac by medical terms (positive tests) but that anything to help would be a good idea. !? i don't understand what that meant. As she was leaving and praising Zach for being healthy and well-behaved, she casually stated "....we are going to eat healthy and feel better. and we know that with diabetes we can celiac, and it's not the worst thing in the world. schedule a follow-up in 6 months unless he starts bloating or getting constipated again, and then call us." HELP! what the crap does 'allele' or 'DQ8' or 'he has the symptoms and the genes, but not the diagnosis' mean!?
I have gone through multiple tests trying to figure out what my GI problems were. I had the blood test for celiac and also the endoscopy done, The blood test came back negative and all the endoscopy showed was irritation in my stomach and intestines. I also had a small bowel follow though done as well as a glucose breath test. Both of those tests came back normal. I tried adding fiber to my diet, didnt help. I tried lactose intolerance pills (which have wheat in them) and that just seemed to make things worse. It finally was recommended to me by my GI that I see a homeopathic doctor. She said to me that if when I eat gluten I feel miserable and when I dont eat gluten I feel 10 times better, that rite there is scientific proof enough that I should not eat it. There is such a thing as non-celiac gluten intolerance,but it is not an actual proven diagnosis, but there has been more research out there saying there is such a thing. I would suggest that if your son feels better, has no more GI problems and has more energy that you have him eat a gluten free diet, just make sure to talk with a doctor so that he is still getting the vitamins and fiber he needs. Hope this helps!
thank you, Hannah! after asking more questions, i have a 'latent celiac' answer. he is essentially just waiting for villi to respond so a biopsy can confirm his issues. in the last 2 months we have pretty much eliminated breads by chance for the diabetes. we were pushing more fruits so he could feel fuller with the carb ratio thingee. so maybe his intestines have been healing, and hence the 'good' biopsy with positive Celiac alleles for blood work. ??? i have no idea...but i have checked out any and every book with the word 'celiac' in it from the library. i expect i'll have my Ph.d in no time at this rate...
The doc probably didn't want to say "go ahead and do the GF diet'" because she didn't want to "prescribe" something as restrictive as GF when there were no tests backing her up. But she probably mentioned "anything to help" to say, if he feels better without gluten, it helps his quality of life. Doctors have to be very careful about what they endorse, as they can be sued for a simple thing. It would have been nice for your doc to make sure you understood her comments about the DQ8 allele and the seeming double talk.