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So it looks like I have celiac disease. This is an autoimmune disease. My brother has RA, my son has CVID and celiac disease. My Mom had her thyroid removed when I was 6 weeks old (no idea why and she is iong dead). 

 

Who should I see? a GI Dr, Immunologist, or a Rhumatologist? Or all three? I read somewhere, don't change your diet until you've been tested / screened for everything that can be related. My regular Dr has just sent me to see a GI Dr in the future at some point but is just telling me to go gluten free now. Im just wondering what screening I might need, and who to really see. Any advice warmly welcomed. 

 

Felix

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Do not stop eating gluten until all testing is complete. Your GI might want to do an endoscopy (biopsies) of the small intestine to check for villi damage. If you are satisfied with just the blood test and the doctor is willing to diagnose you on just that one test, then why bother going to a GI?

Based on your earlier posts, in order to maintain the gluten-free diet, you would be better off knowing without a doubt that you have celiac disease.

But the decision is yours.....

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I posted my labs earlier, my understanding is that this is pretty definitive already. The only purpose of the endoscopy is to confirm the diagnosis and see what damage has been done. I just know that due to my work schedule, and about to travel to China for 3 weeks I won't be able to get an endoscopy for a while anyway. I really don't want to bother seeing ANY more Drs. I've truly had my fill these last few years, if there's really nothing to do but go gluten-free & recheck labs in 2-3 years I don't need to see a GI or any other Dr every 3-6months, It all takes time, money & co-pays! I go regularly for my diabetes anyway, if this is  something that can just be managed by regular Dr without any further testing that would be fine by me!

 

Felix

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Okay, you do not need further testing.

My husband went gluten free at the advice of his GP and my allergist 13 years ago. He faithfully adheres to the diet. I was diagnosed over a year ago. My blood test was barely positive. I knew what going gluten-free was going to be like. So I went with the endoscopy in order for me to really stick to the diet. I have been allergic (like my siblings) to milk, nuts and eggs since I was young. I was not going to cut out any more foods from my diet without definitive proof (little did I know I would later have to give up most carbs for diabetes, Ha!). I was just shocked that both of us would have gluten issues. And later I was shocked about my diabetes diagnosis.

I think that if you have been questioning your blood test results, further testing might be worth it in your case. But you know yourself best and it is up to you to decide. In any case, there is no " falling off the wagon".

I wish you well!

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