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celiac-cindy75

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celiac-cindy75 Newbie

Hi! I am new to this forum I just registered today! Here is my story I was diagnosed with Celiac as a baby back in the 70's. Dr's did a biopsy to diagnose me back then i am told. I was on strict diet then gradually introduced to gluten - PASTA and Bread- and was not getting as sick so my parents felt i had 'outgrown' it. So for 30 something yrs now I have been eating gluten regularly. Well I have had so many issues with my stomach, arthritis, strange rashes, constipation, weight gain, fatigue for years and doctors always told me it was anxiety and it was all in my head. I did always mention that i had celiac as a baby, so you think this would have been a red flag to them? ANyway back in 2007 I go to hospital thinking i had a stroke b/c i could not move my left leg - I had foot drop and they FOUND that i had Multiple DVT's in BOTH my legs ( I did not have symptoms of blood clots they found them 'accidently'. turns out it was not a STroke (MRI's showed no Stroke) and they were stumped for 2 yrs as to why I got these clots! trust me they did genetic testing, lupus, tons of tests and nothing came up. They did eventually give me Celiac blood test but it came back negative so they don't believe I was diagnosed with celiac back in the day. Well after reading a book on Celiac, I really think its possible DVT is related to Celiac. I am going to a GI dr on Wed for the first time in my adult yrs and i am hoping that does an Endoscopy to see for sure that I have Celiac and to see what damage I done to my body. I have been feeling AWFUL lately and i know it has to be because of Gluten. Has anyone else ever had blood clot issues that has Celiac? Thank you.


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Kelly777 Newbie

Yes, I was misdiagnosed by a lab test 39 years ago after having a DVT with a RARE blood disease called Anti Thrombin III. I went to a hematologist on March 9th. She repeated the newer tests for all coagulating diseases and I was negative. I stopped my "blood thinner" after 39 years and I just don't feel right. Something is going on. I see the hematologist on Wednesday next week and hopefully she will tell me if my coagulation problems could be related to this disease. Who knows?

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    • trents
      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?
    • ainsleydale1700
    • Scott Adams
      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.
    • Aretaeus Cappadocia
      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.
    • ainsleydale1700
      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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