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Dq1,1 Subtype Associated With Gluten Intolerance?


bendano

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bendano Rookie

My DD (now 2) has had chronic diarrhea and failure to thrive for one year. She has had many tests for celiac and other GI disorders. Her blood test was neg and her biopsy was inconclusive. She had slight villous blunting and many lymphoid cells but not intraepithelial lymphocytes. We had her tested through Enterolab and she had an elevated fecal antigladin IgA of 63 and fecal transglutaminase IgA of 58. SHe has the HLA-DQB1 Allele 1 0501 and HLA-DQB1 Allele 2 06xx. She seems to be doing better on the gluten free diet now that we have also removed soy and she had been dairy free due to a milk allergy. Two pedi-GI's have recommended a gluten-free diet for her. We are searching for information about gluten intolerance without DQ 2 or DQ 8 subtypes and are finding little to no proof that such condition has been defined in medical literature. Any information would be greatly appreciated.


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Those genes have not been officially recognized as causing gluten intolerance by the medical community at large. But many here have them, and have terrible reactions to gluten, my own youngest daughter included (and since she is my kid, I probably have those same genes, or at least one of them, as well).

Those 'official' celiac disease genes are NOT the only genes causing celiac disease. In other countries they have recognized other genes for causing celiac disease, and they are still finding more.

If your daughter at her young age had some blunting of the villi already, they likely would have been flat in a couple of years. I am glad she has sensible GIs who want her on a gluten-free diet. There are too many ignorant doctors out there who would just tell you that there is no way she has celiac disease, and to keep her eating gluten.

nora-n Rookie

I collected some non-DQ2 or 8 links here on this slow-moving forum:

Open Original Shared Link

Note that some researchers did a larger study in europe to see what DQ types they found, and they found celiacs without DQ2 or DQ8, and somehad half a gene.

I do not know how enterolab reports those with half a celiac gene.

It does look like some fficial celiacs are DQ1.

also, Hadjivassiliou found that about 20% og gluten ataxia patients have DQ1. Just type hadjivassiliou in www.pubmed.com or google.

nora

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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