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About cdiaz0517

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  1. Thanks! I'm just trying to know if maybe not getting it would make it harder for me to get any treatments or just be taken seriously by doctors. Thanks so much for the Natural Vitality Calm. I will def follow up on that
  2. Hi everyone! Brand new here !! Still trying to figure out how this all works So, a few months ago I started feeling absolutely terrible. Muscle Pains, palpitations and tingling sensations, as well skin sensitivity and rosacea. I did not notice at the time that it was related to food until I had a few "poisonings" that I thought came from shellfish. I have always suffered from severe C but never D. Anyways.. I was incredibly sick for about 3 months and I got tested for everything under the sun: even lyme disease, toxoplasmosis etc. Then I got a brain scan that showed I had T2 non specific white matter lesions that could be consistent with MS ( which of course scared me A LOT) These were seen by 3 neurologists who thankfully ruled out MS, but also did not give me a reason for them. Interestingly enough, I got a 23 and me test kit as a gift for Christmas, and when it came back, it showed I had a variant in the HLA-DQA1 which increased my chances of developing celiac. When I saw that it was like a light bulb came on immediately !! . I just knew that it had to be related to gluten at that point. So, I went to at least 3 doctors who completely dismissed me ( one said those tests were not accurate at all , another said my symptoms were psycosomatic and refered me to a psychiatrist.. ) until finally I had one doctor send me for testing. Upon finding my ttg A elevated and the EMA positive, she refered me to a gastroenterologist to get more tests. This gastroenterologist sees my husband for his Chron's Disease and he is very good for that, but when I showed him my ttgA result and the EMA, he said he did not believe I had Celiac because I did not have D, only C, which put his celiac's expertise in question IMHO. ANyways, he repeated all the tests, and added more including genetic testing. Below are the results. He now says he is sure I have celiac but won't give me the diagnosis unless I get a biopsy to confirm. I asked, "so what else could the tests mean?" and he said, " I'm sure you have celiac, but I need the bipsy before I impose this lifelong diet on you " My insurance is not very good and it will cost me over $1000 to have this done, which is steep for me at the moment. I know that it is a personal choice and I am not looking for any medical advice, but I want to know people's opinions on wether you guys think it is really necessary. All my tests seem to point to Celiac's direction and makes me wonder if maybe I should look for another doctor, or just start on the gluten-free diet, ( I've tried to lower my gluten consumption but still kept eating it to prepare for the endoscopy" ) Or wether I should get it done to establish a baseline. I worry that the exam will be a false positve, seeing how unacurate they can be, and also lowering gluten could maybe alter it ? Finally, if anyone knows a Dr in the Miami / Fort Lauderdale area that specializes in Celiac I would reallly appreciate it Sooo sorry this got soo long, but i appreciate any advice TEST RESULTS: TISSUE TRANSGLUTAMINASE IgA - 9 Ref: <4 TISSUE TRANSGLUTAMINASE IgG - 15 Ref: <6 GLIADIN (DEAMIDATED) IgA - 21 Ref: <20 GLIADIN (DEAMIDATED) IgG - 38 Ref: <20 ENDOMYSIAL ANTIBODY SCR AMD (IGA) W/REFL TO TITER Positive ENDOMYSIAL ANTIBODY AMD TITER - 1:5 Ref: <1:5 IMMUNOGLOBULIN A: 135 Ref: 81-463 HLA TYPING FOR CELAIC DISEASE: •HLA DQ2: POSITIVE •HLA DQ8: NEGATIVE •HLA VARIANTS DETECTED: HLA DQA1 : 02 HLA DQA1 : 05 HLA DQB1 : 0202 HLA DQB1 : 0301