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pikkulintu

Skin Biopsy Results

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Well I had my appointment with my dermatologist this morning to get the results of my biopsies which came back as...an insect bite reaction - which I am not buying but she didn't want to hear it. Even though I said I found it hard to believe an insect bite would produce hundreds of ongoing lesions (3 months and counting) which ALWAYS flare up after I eat gluten.

While checking my lesions she did note how many had appeared since she saw me about 10 days ago and also noted my severe keratosis pilaris. Her comment? 'Gee, you must have sensitive skin.'

 

I asked her if the biopsies were taken from the skin next to the lesion (as requested) or from the actual lesion and she said from the actual lesion! I asked her to redo the biopsy from the clear skin next next to a fresh batch of blisters that had erupted this morning to test for IgA deposits and she refused saying I'd be wasting my time and it wouldn't show anything.

She recommended a strong steroid cream to help with the rash but I refused the treatment saying that I wanted further testing and I knew that steroids would interfere with the results. She told me I was wrong and that the steroid cream would be harmless.

She then proceeded to give me handouts on insect bites that she printed off google (!!!).

She could tell I wasn't happy about the diagnosis and about her refusal to do further biopsies and at that point I just wanted to get out of there.

As I was about to leave she told me that the rash I had wouldn't kill me and compared to other people it was quite mild so I shouldn't worry. It's ok for her to say that. She's not dealing with the constant itching that makes me want to tear my skin off and is not letting me get a good night sleep.Or when I have to excuse myself whenever I'm out to run to a bathroom to relieve the itching.

 

I'm unsure of what my next step should be. This was the 4th doctor I'd seen about this rash and while I'm really, really tempted to quit eating gluten now maybe I should continue with testing? I'm thinking about seeing a naturopath or a dietition but unsure if this would be helpful?

 

Argh! Back to square one.

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Have you had a full celiac panel? If not request one from your GP or Interist. There are false negatives but it would still be a good idea. If you should decide to get a second opinion from a different derm do go to the NIH website and print out their instructions for testing for DH. It would be a good idea to also send a copy to the clueless derm you just saw. Don't know if it will even get read but might help someone else. If your derm is part of a group also find out who the head of the organization is and perhaps send a letter detailing your issues with this doctor along with a copy of that NIH printout. This suggestion might seem a bit extreme but I have DH and went through years of useless misdiagnosis while I got sicker and sicker. Kind of left me a bit PO'd about their ignorance. 


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I agree completely with what Raven said.

Here's a link to pathology instructions for a dh biopsy as well as other skin biopsies for different things. 

https://www.pathology.med.umich.edu/handbook/details.php?testID=849

You can print it out & highlight the pertinent parts & send or take to derms past & future. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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My GP suggested I get the blood test done before I saw the derm and the results came back negative. However when I was going through the results myself I saw they only tested me for 2 markers instead of the full blood panel which really annoyed me.

I've made an appointment to see an integrative dietician next week who I'm hoping will be able to help me. I can't believe the resistance from conventional doctors who openly admit they can't give me any answers yet are unwilling to further explore the possibility of dh and celiac even when I go through my loooong list of symptoms.

Thanks so much for that document of pathology instructions. I'll be sure to have a read and print them off. I can't wait until I finally get to the bottom of this and I can ring all the doctors who pulled random diagnoses out of there you know what and say 'in your face!'

I really feel for all those who struggle for years to get anywhere with doctors before they get a diagnosis I'm only 3 months into this journey and i'm already over it.

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You're welcome! I hope you can get a resolution but you may just have to go gluten free without an official dx. So many of us do because we can't take the destruction to our bodies any longer.

The riot is that I got a dh dx AFTER I had been gluten-free for a long time. What a riot eh? I didn't even go to the doc for that; I was there for something else but had been to the same one twice for the rash prior to going gluten-free so he knew my story & had seen the rash & how long it had been going on. Based on what he had seen before & treated me for before & the results after I went gluten-free - he gave me a dx. I didn't even ask for one -- by that point i just didn't care about an official dx -- knew it was dh & I had celiac and there was no doubt about it. So go figure. But me getting that dh dx after the fact is a one in a million, maybe one in 2 million, thing. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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