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Dvt

celiac-cindy75

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celiac-cindy75 Newbie
celiac-cindy75
Posted

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
Kelly777
Posted

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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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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