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I Hope The Derm Has Answers For Me!


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11 replies to this topic

#1 MandeeTheGreat

 
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Posted 08 March 2013 - 08:08 AM

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?? 

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20130308_084951.jpg


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#2 MissyShelle

 
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Posted 08 March 2013 - 03:07 PM

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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#3 MandeeTheGreat

 
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Posted 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. 


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#4 ravenwoodglass

 
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Posted 13 March 2013 - 10:41 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.


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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#5 MandeeTheGreat

 
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Posted 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.
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#6 ravenwoodglass

 
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Posted 13 March 2013 - 11:37 AM

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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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#7 mushroom

 
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Posted 13 March 2013 - 11:39 AM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#8 kareng

 
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Posted 13 March 2013 - 11:44 AM

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.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."
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#9 MandeeTheGreat

 
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Posted 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. :(


Edited by MandeeTheGreat, 13 March 2013 - 12:48 PM.

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#10 MandeeTheGreat

 
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Posted 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.  


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#11 mushroom

 
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Posted 13 March 2013 - 12:54 PM

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.


  • 1
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#12 pricklypear1971

 
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Posted 14 March 2013 - 08:30 PM

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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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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