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What Kind Of Doc?

Anianna

By Anianna
in Doctors

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Anianna Newbie
Anianna
Posted

I have been to my primary care physician, the emergency clinic, and an immunologist/allergist. I have had lots of diagnoses over the years, but have had terrible blistering rashes for the last two years that were initially diagnosed as MRSA (came back negative) and then as contact dermatitis. My doctors have given up on me and simply settled for "extremely sensitive skin", which is not a satisfactory answer. I scheduled an appointment with a dermapathologist, but she cannot see me until December and I am so miserable now that I cannot even walk without extreme pain.

A friend who has celiac recommended I look into it and I believe this is my answer. I left a message for my doctor requesting a scrip for dapsone to see if that will provide me any relief. I have had a negative blood test for celiac, but I have IgA deficiency, which increases my risk and the symptoms I have been suffering for years that have been diagnosed as one thing or another fit to a T.

So what now? These doctors have failed me. What kind of doctor do I go to to determine whether I have celiac? Is dapsone for the DH and a change of diet our only options or is there a type of doctor who would have other treatment options for this disease?

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virginiabeach Rookie
virginiabeach
Posted

What does it matter what the diagnosis is? I know if I am hit on the head with a hammer it's going to cause physical pain and possibly neurological damage. If I ingest wheat it will do the same thing. It no longer takes a doctor to confirm this.

Yes, we get a tax break if we have a "legitimate" diagnosis... What else? I got my diagnosis from a naturopathic physician back when the orthodoxy of western medicine believed we were one in 100,000 and they'd never see one of us in their practice. The ordeal of getting the diagnosis would have done me too much damage by the time western medicine realized it was wrong.

But, in the end, it's not what the diagnosis is, it's about how we survive. Take it and run.

tom Contributor
tom
Posted

Wow Anianna that sucks & no appt until December?!

I don't have DH but I thought a regular dermatologist could Dx it - not sure if I've seen the word Dermapathologist before.

Re your last question: If it *is* DH, and therefore celiac disease, there's no other type of (reputable) Dr w/ a treatment that doesn't include 100% gluten-free.

Even though this is about Drs, you might get more replies asking in the DH section https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

There's gotta be a way to not wait until December, isn't there?

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    • Aretaeus Cappadocia
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      By Aretaeus Cappadocia · Posted

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Celiac flare years after diagnosis

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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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      Celiac flare years after diagnosis

      By trents · Posted

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
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      Celiac flare years after diagnosis

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