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What Kind Of Doc?

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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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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.


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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

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


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    • I have the same symptoms.  These symptoms have overlapped other issues that I have and have been left untreated for far too long. Now the pain has gotten worst. My GP believes it's my hiatal hernia.  I have pain below my breastbone, pressure pushing up my chest/throat, dizziness and nausea. 
    • Usually I'm using apps to tell me what celiacs have thought about the restaurants in the area and repeatedly eating at a few different places I haven't gotten sick. Now that I think about it, gluten was a definite possibility. I ,however, just got all negative results from all the following tests so I'm guessing I'm doing ok on that front. -Basic metabolic panel -Liver enzyme panel -CBC -Serum IgA -Tissue transglutaminase(tTG), IgA -Tissue transglutaminase(tTG), IgG -Thyroxine(T4), free direct serum -Thyroid stimulating hormone I thought the same thing about positive antibodies and non-celiac sensitivity reading this; l'm seeing his nurse practioner in two weeks so I'm going to take this and basically argue with what he said and see how that goes haha. I'm gonna guess not real well. I'm going to push being tested for other autoimmune diseases in addition.  
    • I was dx with duoedenitis end of August. No mention of a stomach, esophagus or duoendal ulcer. Just a small hernia. Less then 2cm. But I have a LOT of pain right below the breast bone and I jumped when it was recently touched on exam. I can even feel a small bump in the area. I feel so dizzy and unwell, like some kind of bacteria is invading my brain and am very queasy still.  My heart still feels weird too.  Bloodwork normal, a bit low on protein which is unreal because I get a ton of it but it is always is low if I have not eaten. Mildly elevated myeloycytes and basophils. My GI will probably not see me for a week or two, my primary care put me on sucralfate.  As soon as the food hits my digestive system I feel really weird all over, stomach, chest, throat, head. Just feel like I have this horrible thing infecting my body.  Did anyone feel ulcer pain and have it NOT be an ulcer? I suppose one could have developed since August. 
    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
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