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Parents, Friends and Loved Ones of Celiacs
Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.
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My daughter is celiac, she had the Moderna vaccines dose and now, she has Chronic Pericarditis. She is almost twenty five year old. 1 2
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Recent Activity
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- trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Confused about HLA-DQ Celiac gene test result
Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people... -
- ainsleydale1700 replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Confused about HLA-DQ Celiac gene test result
Thank you, that is helpful! -
- Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Confused about HLA-DQ Celiac gene test result
HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its...- 1
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- Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications4Dried Chickpeas
I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.- 1
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- ainsleydale1700 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3
Confused about HLA-DQ Celiac gene test result
Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer. The doctor said I don't have Celiac genes. I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated...
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Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks. Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
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By ainsleydale1700 · Posted
Thank you, that is helpful! -
By Scott Adams · Posted
HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed. -
By Aretaeus Cappadocia · Posted
I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes. -
By ainsleydale1700 · Posted
Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer. The doctor said I don't have Celiac genes. I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac. I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years. He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy. Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.
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