Seeing A Dietician Vs. A Doctor

[pigeonsailor]

I'm an American living in Amsterdam and I believe I have celiac. My tests came back negative, but I didn't know I had to gluten myself first. The doctor never told me. When I found out that I had to gluten myself (through crowdsourcing), I told the doctor, but she said it's not true. She's very nice and supportive, but at this point, I'm asked her to refer me to a dietician, with the hope that I would get someone who's more knowledgeable about this.

My question is: What kinds of questions should I ask a dietician? I had tons of symptoms, which have gone away since I stopped eating gluten, but I apparently tested negative. I don't know if I should re-test after glutenizing myself (noooooooo!) or what.

I've never seen a dietician before and would love some advice about how to figure out if I've got a good one.

Thanks!

[LDJofDenver]

Yes, unfortunately, your physician is incorrect. You DO have to have gluten in your system for your body to create the antibodies - the blood test is looking for these antibodies. People wishing a formal diagnosis do have to go back to eating gluten - usually several pieces of bread per day for a month, something like that (a search of this forum will turn up many replies on that subject). And sometimes, even if you are eating gluten you can get a false negative blood test, even if you do have celiac disease.

A dietician will help you with what you can and cannot eat if you have celiac disease or gluten intolerance. They are usually who you go to AFTER you find out you have celiac disease. They should have on hand many local resources for both support and gluten free foods and should have the CSA 3-ring binders of gluten free foods and will be able to also give you great suggestions on substitutions when cooking.

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While I have a medical diagnosis of celiac disease, from both positive blood results and small bowel biopsy, my adult son never got a formal diagnosis. After a decade of doctors and agony and endless problems, he was finally diagnosed (about 12 yrs. ago) by diet, by a new doctor whose mother had celiac disease. After reviewing his case history she suspected celiac disease and put him on the Atkins Diet -- all his problems went away. He was so happy and grateful to end his suffering and find the cure to his ailments that he never desired to go back on gluten to get a formal diagnosis.

Lots of folks are self diagnosed for this very reason. And some went gluten free out of frustration/desperation when their test results came back negative.