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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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    • ainsleydale1700
      Confused about HLA-DQ Celiac gene test result

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      Thanks for the insight!  It has been a whirlwind...very overwhelming and frustrating at times.  But what you are saying makes sense to me. I have been on a Gluten Free diet for 4 years now Its been suggested to me to get a second opinion  
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      Why now?

      By heart390 · Posted

      THANKS again!!!
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      Why now?

      By trents · Posted

      Sorry for rambling on so much. It was not clear to me from you first post that, although you have known for several years that gluten had been causing you distress, that you had already eliminated it from your diet.
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      Confused about HLA-DQ Celiac gene test result

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      @ainsleydale1700, the additional test information you provided is very significant! Here is the important part: "This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG." It looks to me that you may be a "seronegative" celiac. The frontline diagnostic tests for celiac disease are IGA tests, especially the tTG-IGA. However, another IGA test ("total IGA") was done to check you for IGA deficiency and you were found to be deficient. That means that the usual IGA tests done to diagnose celiac disease, such as the tTG-IGA, would not be reliable. That is why the IGG testing was done "reflexively" (which means in response to the results of a previous test, i.e., the total IGA test.). The IGG tests are not quite as reliable as the IGA tests for diagnosing celiac disease, meaning, there are more "other" possible causes for elevated IGG test scores. The IGG test did give a borderline positive result, however, so the physician ordered the endoscopy with biopsy to check for damage to the small bowel lining that would be caused by untreated (continuing to consume gluten) celiac disease. The biopsy showed no damage so the doc concluded you do not have celiac disease. However, the monkey wrench in the gears of the doc's conclusion is that he gave you permission to proceed with the gluten free diet which would have allowed for healing of the small bowel lining to commence. How long were you gluten free before the biopsy was taken? And how much damage to the small bowel lining was there to begin with? If the damage was minimal, it might have been fully healed by the time the biopsy was done. And the symptoms you describe involving vitamin and mineral deficiencies, tooth enamel loss, cessation of menses, neuropathy, constipation alternating with diarrhea . . . IMO all scream of celiac disease as opposed to NCGS.
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