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JaneWhoLovesRain

What Kind Of Doctor . . . .

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does one see for DH?

I'm guessing one starts with the dermo? and if one is positive for DH do you continue to see a dermo or do you go to a gastro? Or no doctor? And are either of these specialities up on gluten ataxia, which I think I may also have, or do they tend to dismiss it?

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Good luck on both scores. It is rare to find a dermatologist who knows how to correctly biopsy for DH (the clear skin next to a lesion and not directly on it), but if you're lucky enough to find one and then test positive for DH, there's no reason to see a gastro. If you have DH, you have celiac....so all you have to do is follow a gluten-free diet from now on.

Since it's an ever rarer gastro who knows that a diagnosis of DH is a diagnosis of celiac, I think you'd be wasting your time consulting with one. Just IMHO.

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Not too many docs, period, know about gluten ataxia. Finding a knowledgeable doctor is the hardest thing about celiac disease :unsure:

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First step, like you thought is seeing a dermo. If the first one isn't good, grab your records and go to another one. I've had more favorable results with doctors just setting up their practices. They're fresh out of school and willing to research if they don't know something. For ataxia, I'd see a neurologist before a gastro.

Better advice, imho, would be to go gluten-free for 6-8 months before seeing a neurologist. They tend to want to subject you to more tests (like EMG and ENG) and nerve biopsies and prescribe medications that may or may not be helpful. And they won't be happy if you don't have a diagnosis, so do see a good derm and get a good biopsy. Good luck to you.

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The first GP I went to told me he could tell by looking at me that I wasn't coeliac. (Thanks doc, if I'd got on the right track at that point I might not have got DH).

My last GP (understand that I live in an isolated area and don't have many choices) said the first time I saw him that there really wasn't anything you could do about coeliac because it is next to impossible to stay on the diet. Fooled him.

The last time (and believe me it was the last) when I asked him about possible vitamin deficiencies said that now I had mastered the gluten free diet I didn't have celiac disease and was there anything else he could do for me?

In a way he was right. If stopping eating gluten brings relief, one doesn't need the medical system to validate the self evident.

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