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I Hope The Derm Has Answers For Me!
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Here are some pictures of the rash I have. It starts out just itchy skin but then little fluid filled spots pop up. They are incredibly itchy. I cant stop myself from itching and most creams or remedies make it worse. The way it looks now is after I scratch it all open on my sleep, I wish i had a picture of the fluid filled bumps. Then it will heal all up (leaves discoloration for awhile and scarring) and slowly disappear or flare on and of for awhile. I have been having it happen since I was a pre-teen but the doctors all would either say they didn't know what it was or that they think its eczema or atopic dermatitis. It happens on elbows, fingers, feet and occasionally on legs. I never made the connection to gluten until this recent outbreak was triggered by eating gluten for a week. (other symptoms are stomach upset, brain fog, mouth sores, bloating, nausea, fatigue, hair loss, easy bruising and vitamin d deficiency)  Currently it is on my elbow, where it is most often but otherwise I will get the little fluid filled blisters randomly on my hands or other areas individually. I scheduled an derm appointment for Tuesday in hopes that they will do a punch biopsy and see if its DH. I have already gone gluten free because I noticed the correlation to my symptoms, so I cant do any other testing. I hope it doesn't go away again before I get to the derm. I tried looking up pictures of DH and other rashes to compare it, and I just end up confused. It seems like there are multiple types of DH or that it morphs different ways?? 

20130307_225347.jpg
20130308_084951.jpg

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I hope you get some answers. I currently have the same exact rash and other symptoms you are having. I'm waiting on my insurance paperwork to get here. I hope you get answers and relief soon. 

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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. 

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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.

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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.
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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.

Not all folks with DH have GI symptoms so that may be why some say that you can have DH with gluten intolerance. Your regular doctor should be able to run tests for nutritional defciencies. That may account for the easy bruising and hair loss. IMHO you are wise not to go back on gluten if it makes you severely ill. That is also indicative that what you are dealing with is celiac.

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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. :)

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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.

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

http://www.cureceliacdisease.org/archives/faq/what-is-dermatitis-herpetiformis-dh

http://www.cureceliacdisease.org/archives/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-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.celiacdiseasecenter.org/A_Patients/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."

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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. :(

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

http://www.cureceliacdisease.org/archives/faq/what-is-dermatitis-herpetiformis-dh

http://www.cureceliacdisease.org/archives/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-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.celiacdiseasecenter.org/A_Patients/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.  

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It is rare to find a dermatologist who is so familiar with DH that he is willing to diagnose without doing a biopsy; you may be one of the lucky (or unlucky :P ) ones.  Certainly, from your pictures I would think it is DH too, from all the other pictures I have seen from diagnosed posters.  The fact that you have the other symptoms also, and an official MD-stamped diagnosis, should put you at rest that this is what you have.

 

Yes, all first degree relatives should be tested for celiac disease every 3 years.

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Honestly, if you have a derm that listened to your symptoms and put the rash together with your reaction to gluten then I'd assume its correct. Count yourself lucky it was even considered.

I do agree you need other basic tests like vitamin levels. nutritional deficiencies from celiac can be quite destructive. Also basic blood panels, including thyroid/Hashimotos testing (hair falling out).

Bottom line-if you already know by your reaction to gluten that you must be gluten-free then quite frankly, the lack of biopsy doesn't change things. Yes, you need to treat yourself as celiac and monitor those things Celiacs need to monitor. See where it takes you - hopefully to better health.

As far as your family goes - it seems there's enough crossover between ncgs and celiac in families (totally anecdotal observation) to push for celiac testing.

I hope your health improves soon. I know this is all a bit shocking. But it gets easier.

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
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    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
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