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Dq2 Positive/dq8 Negative

ftmomma

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ftmomma Rookie
ftmomma
Posted

I'm new here, first post....please bear with me as I learn the ropes in the forum. Not sure if I'm posting this question in the right place, but hope someone checks it out :-)

Reader's Digest Version: I have not been feeling "right" since about 8 weeks after the birth of my baby (uncomplicated pregnancy and childbirth). GI issues, severe abdom. issues (2 ER visits), joint pain, peripheral neuropathy (hands/feet) and weight loss (25lbs in about 5 months).

Celiac panel was done twice. Both showed normal results. GI dr still wanted to do endoscopy. 1 in Dec and another in May. Both show white blood cell infiltration (patches in various parts) and inflammation. Then sent me for Genetic bloodwork. Tested positive for HLA - DQ2 and negative for HLA -DQ8. Have been gluten free since July 1 (while waiting for results) my waistline has decreased by 3 inches (and I haven't lost weight). Feel so much better already! (which I know should be more of an indication on what I should do even more so than test results)

Still waiting to get a call from my GI dr re: the genetic testing. He usually calls with reports after hours. I actually got the report from my primary care dr at an appointment this afternoon. She stated that since I only have 1 of the genes "I probably don't have Celiac because my initial antibody tests were negative". She didn't think it was necessary for my immediate family or my children to be tested, because I only have "1 of the genes".

Is this true??? How often or common is it that people with celiac would carry both the DQ2 and the DQ8? I realize that just beacuse someone may have the genes, it may not be a clear cut case that they also have Celiac. But if they have a gene, inflammation in small intestine and symptoms, why would she still be thinking it might be something else?

ok---so much for the short version- thanks for any info!

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happygirl Collaborator
happygirl
Posted

You don't need both genes to have Celiac. If you had neither gene, and negative tests, then Celiac could essentially be ruled out.

I think its a small percentage of Celiacs who have both genes.

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Skylark Collaborator
Skylark
Posted

One copy of DQ2 or DQ8 confers some risk for celiac disease. No current genetic test gives a clear-cut result. There is a dosage effect, meaning the risk is higher with to copies of DQ2 or DQ8. Having no "celiac" genes doesn't even rule out celiac, as some folks on this board can tell you. We don't actually know all the genes involved. HLA-DQ is just the tip of the iceberg.

Your doctors need to rule out inflammatory bowel diseases if you don't have celiac antibodies. Those can cause inflammation and abnormal biopsies too, although I think the neuropathy and your response to a gluten-free diet is more suggestive of celiac (or gluten intolerance). Going gluten-free is actually helpful for a lot of GI problems, so they're taking a cautious approach since you got so sick. Keep right on eating gluten-free and let them make sure there are no other problems that need to be treated. :)

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    • Zuma888
      Hypothetical question about antibodies

      By Zuma888 · Posted

      Thank you so much.
    • knitty kitty
      Hypothetical question about antibodies

      By knitty kitty · Posted

      You have one gene for Celiac.  You have a second autoimmune disease, Hashimoto's thyroiditis, which is frequently found at a higher rate with Celiac.  HLA genes carry autoimmune disease genes like Celiac and Hashimoto's and diabetes and others.   You have Celiac symptoms of reacting after gluten.  You said "I am however still suffering from the effects of the gluten challenge (food sensitivities, slight brain fog, weird stool, fatigue, swollen thyroid, bodyaches)."  And your anti-thyroid antibodies increase after gluten exposure.  While tTg IgA does not directly attack the thyroid, gluten exposure does trigger the  immune system to produce antibodies against the thyroid in genetically predisposed individuals.  You did not eat sufficient gluten (10 grams of gluten per day for two weeks minimum) to raise the autoimmune antibodies to the point they can be measured in the blood, so your blood tests may well be inaccurate.  You could choose to continue the gluten challenge of 10 grams a day for at least two weeks and get retested.   At the very least, you know that gluten is harmful to your thyroid, and because you are genetically predisposed to Celiac disease, a strict gluten free diet would be beneficial for your overall health.  
    • Zuma888
      Hypothetical question about antibodies

      By Zuma888 · Posted

      Thanks @Scott Adams! I guess my question now is: do the celiacs who can get away with regular contamination without villi damage as you mentioned have to be strict about cross-contamination ? 
    • Zuma888
      Hypothetical question about antibodies

      By Zuma888 · Posted

      Thank you very much @knitty kitty! I'm glad you brought up the point about histamine. I have been taking an antihistamine after meals where I don't feel so good and never knew why it helped so much. At first I thought I might have a food allergy, but I recently did a food allergy test and I actually have ZERO food allergies. Regarding your last point about the stages of grief, are you saying it's likely that I have celiac? I have Hashimoto's BTW and I know for sure that gluten causes an autoimmune response to my thyroid as my anti-TPO and anti-Tg go up and my throat feels swollen. Could the symptoms be due to that autoimmune response?
    • knitty kitty
      Hypothetical question about antibodies

      By knitty kitty · Posted

      @Zuma888, The antibodies produced in response to gluten are made in the intestines.  When the body is provoked sufficiently, the antibodies overflow out of the intestines and into the blood stream.  Once in the blood stream, the antibodies can be measured with tTg IgA tests.  Three grams of gluten per day for two weeks minimum is enough gluten to make you feel the symptoms of having been glutened, but the antibodies are not in sufficient quantity to be measured in the blood. Ten grams of gluten per day for a minimum of two weeks is required to get the anti gluten antibodies at a high enough level in the blood stream to be measured by tTg IgA tests. So, no, occasional cross contamination or (heaven forbid) intentional cheat days will not be sufficient for tTg IgA testing.  You will still be making antibodies which will still be causing inflammation and damage to the intestines and body.  Histamine is released as part of the immune response to gluten.  High histamine levels lead to food sensitivities, brain fog, and body aches.   The damage done to the gastrointestinal tract affects the absorption of essential vitamins and minerals.  Malabsorption of fats can cause changes in stools.  Insufficient absorption of vitamins and minerals can cause damage to other organs like the thyroid if it can't get enough Selenium, iodine, iron, zinc, and Thiamine.  Brain fog and fatigue can be caused by low Thiamine and other B Complex vitamins.  Vitamin D is needed to regulate the immune system.  One gene is all that's needed to develop Celiac disease.  I know a Celiac diagnosis is a change that can be difficult to get your head around.  Many people go through the five stages of grief.  One stage is "bargaining".  Sounds like you're stuck there.  Every little cheat counts to your detriment.  But sticking to a gluten free diet, makes every meal a success.   Read the comments below the article... Best wishes!  Keep us posted on your progress!
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