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Does This Look Like Dermatitis Herpetiformis To You?


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29 replies to this topic

#16 pricklypear1971

 
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Posted 21 September 2011 - 01:09 PM

Question -- I went gluten-free 10 days before my skin biopsy and blood work...Gluten-free Sept. 12, testing and biopsy done today Sept. 21. But I *did* eat gluten once or twice during that time (some cake a couple nights ago, a submarine sandwich over this weekend, and maybe one or two bites of other things previus to that). Is this a long enough stretch of gluten-free/gluten-light to affect the blood test or biopsy results in that they might show a false negative? Or should I still have enough gluten/antibodies in my system today for the tests to be accurate?


I really have no idea about Tge bloodwork. Most people would say it shouldn't but who knows.

The skin biopsy definitely not. The iga is stored in the skin and you had an active rash, which means it was there. There is a high false negative rate for DH dx, it's unknown why - incorrect biopsy technique, reading the sample, or if it is that rare. I'd say if your rash responds to iodine withdrawal when it didn't respond immediately to gluten withdrawal there's a really good chance it's DH even if the biopsy is negative.
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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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#17 mushroom

 
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Posted 21 September 2011 - 01:18 PM

Question -- I went gluten-free 10 days before my skin biopsy and blood work...Gluten-free Sept. 12, testing and biopsy done today Sept. 21. But I *did* eat gluten once or twice during that time (some cake a couple nights ago, a submarine sandwich over this weekend, and maybe one or two bites of other things previus to that). Is this a long enough stretch of gluten-free/gluten-light to affect the blood test or biopsy results in that they might show a false negative? Or should I still have enough gluten/antibodies in my system today for the tests to be accurate?

As long as she biopsied an active lesion you should be good. :)
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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

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

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

#18 MerrillC1977

 
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Posted 26 September 2011 - 11:26 AM

Well, it's not DH. Nor is it scabies like a past doctor thought. Also, my IgA and IgG blood work also showed normal levels. We are thinking it's my nickel allergy, specifically what's called an "id" reaction. That seems to be the only other thing that fits timeline-wise. We can find out for sure with an allergy testing panel, but for personal scheduling reasons, I can't do that (*if* I choose to at all) until at least November (maybe not even until January). So, for now, I will be getting a nickel content testing kit and going through my jewelry box and removing all culprits....since I knew already I had a nickel allergy, I just never though it could be so severe and it seems to be getting worse each time, so no more nickel for me.
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#19 eatmeat4good

 
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Posted 26 September 2011 - 11:41 AM

Wow. Maybe we can understand now why it is so hard to diagnose!
I'm allergic to nickel too. It is terrible. Only real silver and gold for me and you!
Hope your rash is healing. Are you going back to gluten or staying gluten free for other reasons? Just curious.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#20 MerrillC1977

 
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Posted 26 September 2011 - 11:53 AM

Wow. Maybe we can understand now why it is so hard to diagnose!
I'm allergic to nickel too. It is terrible. Only real silver and gold for me and you!
Hope your rash is healing. Are you going back to gluten or staying gluten free for other reasons? Just curious.

Yes, the rash is healing, and I am trying like all heck to put a good timeline together in my head. I know I wore a necklace charm two days before the rash started (and that charm must've contained nickel because it makes my neck itch every time I wear it). It made my neck itch a little, but that was it....then 2 days later, the rash popped up on my sides (this is the "id" reaction where a rash can occur anywhere on your body hours-days, even months after exposure). About two days after that, we decided to go gluten-free, for Hubby's sake (he has Ulcerative Colitis). I *think* that the rash continued to get worse (or at least not start getting better) after that. But I can't remember when it dawned on me that it might be nickel and I removed all my jewelry. I know I wasn't wearing jewelry anymore by the time I went to the dermatologist (less than a week ago) and on that same day I noticed that the rash had definitely started improving. So, looking back, it probably wasn't the removal of gluten that made it turn around, but rather the removal of nickel.

I will be getting a nickel content testing kit and getting rid of all my nickel-containing jewelry right away. I am not taking this chance again, since each time I get this rash, it seems to be getting worse and worse.

We are still waiting for Hubby's celiac panel test results, but have decided to remain gluten-free (or at least 98% so - we will splurge for "real" desserts, pasta or bread once in a great while) because we both feel a lot better eating this way. I think it's truly helping his colitis issues, and so does he. :)
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#21 sa1937

 
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Posted 26 September 2011 - 01:23 PM

I also have a nickel allergy and had problems ever since I started wearing earrings. The *real deal* is fine and I can also buy earrings from Simply Whispers, which are guaranteed to not bother nickel-sensitive people.

But I do not have DH.
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Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#22 padma

 
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Posted 02 October 2011 - 09:35 PM

Another thing to eliminate in testing ourselves is skin care products that have chemicals in them. I have DH AND I am very sensitive to most company products. There is a great website to check the safety of skin care products: ewg.org/skindeep . You simply put your product name in the box and click and it gives you the rating for the product.
I get a consistent rash on my legs first. Then if it get worse, it starts spreading. I get the little "pimples" full of liquid, too. Interestingly, I can get this with gluten and skin care products. Maybe the skin care products have wheat byproducts in them? Don't know.
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#23 mushroom

 
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Posted 03 October 2011 - 01:27 AM

Count me as another nickel sensitive. I wore off the back of a watch and, even though I switched to only silver or gold, had to let my ear piercing close up. No nickel (and very careful for other metals, especially in dentistry, including gold crowns) for this gal.
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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

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

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

#24 ravenwoodglass

 
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Posted 03 October 2011 - 04:10 AM

We are still waiting for Hubby's celiac panel test results, but have decided to remain gluten-free (or at least 98% so - we will splurge for "real" desserts, pasta or bread once in a great while) because we both feel a lot better eating this way. I think it's truly helping his colitis issues, and so does he. :)


False negatives on biopsies are really common. Your rash does look an awful lot like DH. Since you plan on 'spurging' with gluten now and then that should tell you if it is DH. It may take a couple days after injestion for the rash to occur or it could happen very quickly. So keep a record of when you cheat on the diet and watch for a recurrance of the rash after gluten injestion.
Also with hubby watch for a sharp increase in his colitis issues when you have your splurges. You may find his colitis becomes markedly worse. Again the gluten reactions can be delayed by as much as a week so keep notes.
  • 1
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)

#25 MerrillC1977

 
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Posted 03 October 2011 - 05:42 AM

False negatives on biopsies are really common. Your rash does look an awful lot like DH. Since you plan on 'spurging' with gluten now and then that should tell you if it is DH. It may take a couple days after injestion for the rash to occur or it could happen very quickly. So keep a record of when you cheat on the diet and watch for a recurrance of the rash after gluten injestion.
Also with hubby watch for a sharp increase in his colitis issues when you have your splurges. You may find his colitis becomes markedly worse. Again the gluten reactions can be delayed by as much as a week so keep notes.

I will keep an eye out, but I am pretty convinced at this point, based on several factors, that it was nickel all along. And we are always checking on his colitis. :)

However, a question -- if it was DH....would the rash resolve itself even though I never stopped eating gluten (I am referring to the first few times I got the rash, lat year and prior, not this time when eliminating gluten was an additional factor)? In other words, if it was DH the first few times, but I never limited my gluten intake back then, would it have made sense for the rash to go away like it did, multiple times, or should I have had it all along, non-stop, until gluten was removed?

Thank you.
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#26 pricklypear1971

 
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Posted 03 October 2011 - 07:06 AM

I will keep an eye out, but I am pretty convinced at this point, based on several factors, that it was nickel all along. And we are always checking on his colitis. :)

However, a question -- if it was DH....would the rash resolve itself even though I never stopped eating gluten (I am referring to the first few times I got the rash, lat year
and prior, not this time when eliminating gluten was an additional factor)? In other words, if it was DH the first few times, but I never limited my gluten intake back then, would it have made sense for the rash to go away like it did, multiple times, or should I have had it all along, non-stop, until gluten was removed?

Thank you.


DH can spontaneously appear, disappear while ingesting gluten. Don't know if it happens like that if you are off gluten. I hope not for my sake.
  • 0
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!

#27 ravenwoodglass

 
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Posted 03 October 2011 - 11:26 AM

DH can spontaneously appear, disappear while ingesting gluten. Don't know if it happens like that if you are off gluten. I hope not for my sake.

I had DH for most of my life and it would at times go away and than come back. Late in the disease process it was there all the time.
After the initial healing when you go gluten free usually it only appears when glutened or, especially early on, when injesting iodine.
  • 1
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)

#28 lovegrov

 
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Posted 03 October 2011 - 12:13 PM

I know DH can look somewhat different in different people, but that looks nothing like mine did. I don't have photos, though.

richard
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#29 discovery mission

 
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Posted 24 October 2011 - 06:32 PM

I am not yet diagnosed with celiac. Waiting to do the anti-body blood test and currently adding gluten back in after 6-1/2 weeks away from it. I am hoping to avoid a false negative on the blood work for anti-bodies. Not sure how long I need to stay on it before getting the labs done. ANYWAY....I have been allergic to nickel since I was 8 years old and can only wear nickel free jewelry. In my 20's I had a strange deep itchy rash on my hands (front and back), went to the dermatologist and he was suspicious of a systemic nickel allergy. He had me go on an Elimination Diet for nickel. What a surprise that it was in food too! He gave me a list of foods with their varying nickel contents. He gave me a cream to use to clear up my hands and asked me to go on the nickel free diet for 2 months. It worked. At the time everything I was eating in an effort to eat healthfully also seemed to be loaded with nickel. I now know what I can get away with eating based on the skin reaction I have. BTW the less refined the grains were that I ate, the worse the rash seemed to be. Best of luck to you!
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#30 wheeleezdryver

 
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Posted 26 October 2011 - 06:05 PM

your rash looks like the one I used to get (except mine was never itchy)every spring-April-May (I thought it was from sudden increased sun exposure) before I went gluten free a year ago. The only time I got that rash this summer.... late June, after weeks of plenty of sun exposure.... yep, I glutened myself!!

The rash I had on my hands pretty much year round... in the last couple weeks I have been paying attention to my iodine intake, and that rash has cleared up!
  • 1
Becky (me)-35yo; hypothyroid 8yrs (symptoms at least 1 yr prior); Plantar Fasciitis (PF) (tendonitis in foot) 4 yrs; ovary & softball size cyst removed Feb 2008; Sleep Apnea 3yrs; Dec 2008- realized wheat affects hormones-- went semi- gluten-free (aka, gluten lite!). Interstitial Cystitis (IC, aka painful bladder syndrome) (self dx. controlled by diet- can't have acidic foods/ drinks). July 2010-- realized there was more going on, was going to do the sensitivity/ Celiac testing, decided it wasn't worth it! Am now truely learning to live the gluten- free lifestyle!
My DH-38 yo; born w/ Spastic cerebral palsy. legally blind, uses wheelchair. back surgery Aug 2007, has continued back troubles.




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