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MandeeTheGreat

Member Since 06 Mar 2013
Offline Last Active Mar 26 2013 03:28 PM
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Posts I've Made

In Topic: I Hope The Derm Has Answers For Me!

13 March 2013 - 12:17 PM

A DH diagnosis means a Celiac diagnosis. Here are some " reputable medical" sources you can show your doctor.

http://www.curecelia...erpetiformis-dh


http://www.curecelia...py-still-needed

"Can a skin biopsy for dermatitis herpetiformis (DH) confirm celiac disease or is an endoscopy still needed?
A skin biopsy should be done on a non-affected portion of the skin near the rash when there is an outbreak. It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive."


http://www.celiacdis...A03-WhatAre.htm

"What is dermatitis herpetiformis?

Dermatitis herpetiformis (DH) is the skin manifestation of celiac disease. All patients with DH have celiac disease. It is an intensely itchy rash that usually occurs in the same place for each patient. This may be on the hands or fingers, forearms, buttocks or scalp or anywhere on the body. The rash typically consists of very itchy, small red dots that may develop into blisters or pimples. They are intensely itchy."


He refused to do the biopsy. He said it would be a waste to do one because he was 100% sure that it was DH based on my symptoms and from how it looks. Should I not trust his diagnosis since he didnt do a biopsy? Dangit, now I am even more confused.  


In Topic: I Hope The Derm Has Answers For Me!

13 March 2013 - 12:07 PM

You do not need a GI doctor to test for nutritional deficiencies, so they must be considering doing additional celiac testing, like a scope to check for intestinal damage.  Do tell the GI you are already gluten free; however, some of them don't know this affects the test results or will tell you to eat it for a couple of weeks which really isn't enough.  At any rate, you say you will not eat it, so.... Does it really make any difference if experts disagree about whether DH is celiac or not?  You know you cannot eat gluten and DH is usually very gluten sensitive.  You can honestly tell people you are diagnosed celiac and can't eat gluten.  Is it an intolerance to gluten?  Yes.  Is it celiac?  Generally accepted as yes.  Many consider celiac disease to be just a different step on the gluten intolerance ladder.  So there is really no such thing as "just" an intolerance.  We still do not know what harm a non-celiac gluten intolerance does.   It should be treated with as much respect as celiac disease, aspecially if associated with (celiac?) DH.  I would think just the pure hell of this rash would be enough to take the "just" out of your diagnosis. :)


Its not if it matter or not that they disagree  Its that I want to know for various reasons if I have celiacs. I need to know if I need to get my kids tested and alert other family of it. I want to know so that I can be best treated for the issues I have going on and monitored regularly for.other issues. So basically i just want to make sure I have any testing that I can have done so I can get healthy again. The reason why I think it would be better to see the GI is because I assume they have more knowledge on the disease than my NP. I have had symptoms and have been deteriorating health wise for many years. I want to make sure nothing major is going on along with the possible Celiacs. How long do you have to be gluten free for testing to be inaccurate? It was a few months that I had been gluten free before my exposure (for one week I ate tons of gluten because I had to) but I was still being exposed in small doses that I didn't think about. Like they used soy sauce to cook the Chinese food we got frequently. Does the damage heal super quickly? I am having a hard time accepting this. :(


In Topic: I Hope The Derm Has Answers For Me!

13 March 2013 - 10:55 AM

Glad you now know what the rash is. Do be aware that a diagnosis of DH is a diagnosis of celiac no matter what the results of other tests that may be done. If you are going to have more celiac related testing do stay on gluten until that is done. After testing is finished you can start the diet. You don't need to wait for the results.

Unfortunately I already have been gluten free for a little while. I am hoping that the dh diagnosis is enough for them to test for nutriitional defciencies and related conditions. I know I need to stay.gluten free forever but I wan.to make sure it didnt cause other issues. Like I bruise when I even itch my leg and my hair is falling out. I cant handle going back on gluten for weeks just to have other tests come back positive, i get way too sick. After a week I would be in the hospital. Is there anyway I could have DH and just a intolerance? Sone sites said only 80% of people with DH have celiacs but then others say DH for sure means Celiacs.

In Topic: I Hope The Derm Has Answers For Me!

13 March 2013 - 08:45 AM

Just an update in case someone comes across this and wants to know what the outcome was. It was diagnosed as DH and I was referred to a GI doc for more testing. 


In Topic: Benefit To Getting Diagnosed?

06 March 2013 - 08:44 AM

Thank you for that information. Is there any way to be tested without consuming gluten? I dont think I could handle being that sick just to test for it. I recently had a breakout of the DH but now its healing up. I am not sure if it can still be tested if its not new?? I guess I am off to do more research. I have a hard time accepting that I could have celiac :(