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1993wel

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About 1993wel

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  1. I was diagnosed with Graves Disease after the birth of my second child 10 years ago. There is a strong history on both sides of my family of thyroid disorders and rosacea. I have seen 4 different endocrinologists in the intervening 10 years, and all have been puzzled as to why I have to take such a high dose of Synthroid to manage my underactive thyroid and why my TSH levels fluctuate wildly (underwent thyroid ablation after TSH fell to 0.03 so now technically with chronic underactive thyroid but still considered Graves since that was original diagnosis). I have also struggled with anxiety and panic attacks at various times. My TSH has been as low as 0.03 and as high as 40 -- all in the same year. I can go from a TSH of 4 to a TSH of 20 in the span of 3 months. Generally my endos have made the assumption that I am not being a compliant patient and not taking my medication properly. I always assure them that I have more at stake than they do and that my first priority is my health. Since none of the specialists have been much help, I have been doing research on the internet in the past few years and come up with my own theories as to why I might be having malabsorption of my thyroid medication and what some of the underlying causes might be. I talked to my PCP in July about the possibility that I might be gluten intolerant or have celiac, and he said he doubted it because I have no gastrointestinal symptoms, but there would be no harm in trying a gluten free diet if I wanted. I went ahead and started gluten free on August 1st, even though I know one should be consuming gluten to get accurate test results, because I figured no one would agree to test me. On August 19th I had an appointment with my endocrinogist, at which time it became apparent that my TSH levels were continuing to fluctuate. Since my endo had no answers and basically told me that all she can do is make adjustments to my medication as necessary (based on blood tests every 8 weeks), I went ahead and told her my celiac theory. She was highly sceptical, but said if I really wanted the tests done she would order them for me. I received the test results last week via email, and all the endo wrote on them was a note to discuss them with my PCP because the result was a bit elevated. I am waiting for a consultation with my PCP, but remember that he was initially not supportive of the gluten connection theory. In the meantime, I need some advice! These are the results (and they were after eating gluten free for 19 days). As it turns out, she only ordered two tests: transglutaminase (tTG) IgG Ab 2 U/ml transglutaminase IgA Ab (H) 52 U/ml <4 is normal It looks to me, after doing research, that celiac is a real possibility, but I would like to find out what others think. I am both pleased that I may have done my own detective work and perhaps this is the key to finally feeling better after all of these years,and also deeply annoyed and saddened that the so-called experts never tested for this years ago, solely based on my strong family history of autoimmune disease. I am continuing to eat gluten free while waiting to talk to my PCP, because I do feel better (skin slowly clearing up, losing weight, hair and fingernails healthier and growing more quickly) but I know that it's possible I will have to reintroduce gluten if anyone takes me seriously enough to recommend going the endoscopy route to "gold standard' diagnosis. Thanks for your thoughts.