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Dermatitis Herpetiformis ( And Other Rashes)
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I have had a horrible rash around my eyes for almost 2 years down my arms all over my neck. I have been to 5 different dr's in the last month or two I developed a new rash horribly itchy and painful. Went to a new Dermatologist yesterday as soon as he saw the new rash he was pretty sure it's dermatitis herpetiformis did a biopsy and I guess in about 10 days will find out for sure. I have suffered from migraines/headaches most my life and recently have had some pretty uncomfortable heart palpatations.

If the biopsy is positive does that mean I have Celiacs? He did tell me to take gluten out of my diet. I am 39 years old is it common to be diagnosed this late in life?

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Hi, welcome to the forum. Yes, if you have DH then you have celiac disease. I think it's wonderful that you found a dermatologist that suspected DH and did a biopsy -- apparently that's a rarity. I hope he did the biopsy from skin right next to the blister and not directly on it?

As to your question about being dx later in life, it's not uncommon; especially if you didn't or don't have the 'classic' symptoms. Even those with the classic symptoms sometimes have a hard time being diagnosed. Those of us with DH usually have fewer of the GI symptoms, though looking back I did have my moments, they were uncommon. Keep us posted on the results of the biopsy. Also be sure to look for the thread about itch relief for some helpful suggestions.

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Hi and welcome again. Sorry that you're in the 'waiting' phase - I never cope well with that! And yes, having a dermatologist who would suggest this is a good start - even if it's not DH, at least he's not stuck in the habit of fobbing patients off with the scabies or eczema thing and can think outside the box.

I am recently diagnosed at 31. All the literature says it's actually most common to be diagnosed in your 30s and 40s. I hope that it turns out to be something a litte less permanent for you. But if not, there's lots of helpful people around here. Be in touch with your questions and let us know the results when you get them.

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What other symptoms if any did you have besides the dh rash? I have had horrible joint pain that comes and goes since my early 30 dr's thought I had RA or psoriatic arthritis this drem does not think my other rash is psoriasis. While doing some reading about Celiacs joint pain is a symptom I have also started having awful heart palpatations.

The waiting is awful, but the thought that I may finally have some answers is such a relief.

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Please be sure to read up & make sure the derm did the biopsy correctly BEFORE you go gluten free. The biopsy will become neg. pretty quickly after having gone gluten free so you don't want to have to go back on gluten to re-do a biopsy.

Yes, a dx of dh is a dx of celiac.

I had heart palpitations, horrid, at times completely debilitating joint & bone pain, neuro symptoms, anger (rage), depression, "out there" feelings --- sort of dizzy but not quite classically dizzy, gas, bloat - bad bloat, BELCHING like a sailor, indigestion, anxiety, memory problems such as not being able to remember the name for a fork, unable to concentrate, when typing I would get "dyslexic" & type words with the letters transposed - IE: typing - tpying, major fatigue, "Needles" in my hands & feet. These did not all come on hard & heavy at one time; it was a progression & docs always chalked it up to menopause. I'm 55 now but these symptoms MOL began coming on about 10 years ago. In hindsight, I now see where I had symptoms as a child/teen but they went into remission until my 40's.

Limiting iodine temporarily can help --- many of us with dh have to limit our iodine intake for a while. For a low iodine guideline see:

http://www.thyca.org/rai.htm#diet

Welcome to the club & the board.

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Well my biopsy was neg after learning how it should be done I realize that it was done wrong. Now I am not sure what to do this rash is unbearable it comes and goes and has left scars is this typical for dh? Would really love a diagnoses but if I don't get one soon I think I may go crazy! I am planning on going on the gaps diet to see if it helps

What other test should I ask my dr for

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Well my biopsy was neg after learning how it should be done I realize that it was done wrong. Now I am not sure what to do this rash is unbearable it comes and goes and has left scars is this typical for dh? Would really love a diagnoses but if I don't get one soon I think I may go crazy! I am planning on going on the gaps diet to see if it helps

What other test should I ask my dr for

 

 

Slaps palm to forehead!!  Can't believe yet another derm. screwed up a DH biopsy!!!  Two minutes with Dr. Google would tell them how to do it.....  I am so sorry.

 

And let me guess, you took his advice and stopped eating gluten, so now testing is not available to you without going back on gluten for six weeks.  And I am afraid that is the very sad truth of it.  For any of these tests you do have to be eating gluten for the results to be valid and accurate.  Skin biopsy, celiac blood panel, endoscopy with biopsy.  These are the three ways of medically/scientifically diagnosing celiac.  The only other way is adherence to the gluten free diet (complete adherence) and a resolution of symptoms while gluten free.

 

Yes, the DH can come and go and it does leave scars, often angry purple ones to start with but then they fade to white.  And the DH can linger long after you stop eating gluten, unfortunately.  It is the slowest of the gluten symptoms to resolve, it seems (apart from some of the neurological signs).  It can also be made worse by iodine and you may be one of the iodine sensitive folks.  Trying to keep iodine out of your diet as much as possible can help to clear up your symptoms.  Have you been on the DH thread here on the forum?  There is a lot of useful information there.

 

I hope you are able to get things under control soon and start feeling better.  Best wishes! :)

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Thankfully I am still eating gluten I knew that If more tests were run I would have to keep eating it. Just not sure what tests to ask for

to be run so tired of the dr's just looking at me and saying sorry have no clue what is wrong, but here are some steroids to help for a minute. I have been on and off steroids for almost 2 years it is the only thing that helps. I have the typical rash that looks like dh and then I also have a rash around my eyes that itches really had and hurts my eyes crack and bleed and the skin flakes and peals it is awful it is also around my mouth some mornings i wake and my lips are swollen. I have been to an allergist and the IGA blood test was high I also am allergic to black pepper, oregano, cinammon, almonds, apples, bananas, oysters, plums. I have taken these out of my diet and I still have no change in my rashes.

The tests the dr ordered are

CBC

Celiac disease panel

If I am on oral steriods will it effect the test?

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http://www.cureceliacdisease.org/archives/faq/would-taking-steroids-cause-the-blood-tests-to-be-inaccurate

"Would taking steroids cause the blood tests to be inaccurate?

Yes, but only if you have been taking steroids for a prolonged period of time."

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On and off steroids for 2 years definitely can contribute to a false negative result.

Every doctor I've seen, when I've described my steroid rx's around the time I could have been tested have shook their heads...

So, if your blood work comes up positive that's fabulous. If its negative do not discount it may be Celiac.

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The lady at the lab said steriods have no effect in the celiac panel not so sure I believe that, but we will see. My mother has crohns and all my brothers and sister have some sort of stomache problem. The more I think about the symptoms I would not be surprised if my mother had Celiacs

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The lady at the lab said steriods have no effect in the celiac panel not so sure I believe that, but we will see. My mother has crohns and all my brothers and sister have some sort of stomache problem. The more I think about the symptoms I would not be surprised if my mother had Celiacs

The lady at the lab is misinformed. It is commonly mentioned in studies and medical literature that steroids can influence celiac testing.

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The lady at the lab is misinformed. It is commonly mentioned in studies and medical literature that steroids can influence celiac testing.

That's what I thought I hate that there is such conflicting info out there. Hoping the steroids don't effect the test. Having some sort if answer would be great

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Well, if you get a neg. result them you can't be sure it's truly neg. Also, I will mention that topical steroids will make the dh biopsy false neg.

 

You said the doc ordered a celiac disease panel. Maybe & maybe not. Here is the current, FULL blood panel:

 

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 
 
The DGP test was added recently to the full panel.
 
 
Also can be termed this way:
 
Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG
 
Anything less & you aren't getting the true celiac panel. Sorry, but it happens all too often. I saw a GI & he only ordered 3 of the 6. Not worth bothering with. ALSO, only 40% of cleiacs with dh test positive on the celiac panel so there is that to consider too.
 
It's unfortunate that the majority of docs out there both derms & GI's do not truly know what they're doing.
Furthermore, a lot of derms are unwilling to dx celiac based on a positive skin biopsy. Several reasons --- they feel they are overstepping their bounds b/c celiac is a GI disease & they don't quite "get it" that dh IS celiac. They do not realize that having dh most often means you have neg. blood & endoscopy so sending you to the GI for a dx probably won't work.
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Well the test the dr ordered are neg. I am going ask for them to be redone since I was on prednisone during the test. I am so frustrated so tired of not feeling good and constantly itching

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Chefwife8

 

In all reality . . . I'm not sure it matters to have a definite diagnosis of DH.  It is just marked on your medical charts and who is that helping?   I guess it does matter to be sure it isn't another skin disease.

 

I think the doctor and/or test being positive about DH is for peace of mind.  It sure doesn't help the itch, sting or burn.  I have been to 5 dermatologist with 6 biopsies before the head of the university of dermatology took 2 biopsies correctly.  Has to be next to a lesion with direct immunofluorescence to see IgA . I had been gluten-free and on Dapsone for 5 months but he still took the biopsies.  He didn't think they would show DH but still took them.  Now my record with my PCP and this Dermatologist has charted Celiac DH.  

 

I still have the rash, burning, stinging and itch.  The healed lesions do turn a purple color and fade to white.  They also leave white circles like the pigmentation is gone.  I told this last Dermatologist, "It doesn't matter if the biopsy is positive, I know how the gluten-free diet and Dapsone has helped.  I came to you because my PCP wanted to be sure it wasn't T-cell Lymphoma as I am a NH Lymphoma (remission) patient."  BTW, only 1% of people with Celiac/DH develop NH Lymphoma, a serious complication of gluten enteropathy.  I've been sick a long time when a simple change of diet would have healed me.

 

You could ask for the biopsy to be done correctly but I'm pretty sure the steroids can affect the results.  I know I was told by one of the Derms that the topical steroids affected results.  If they can't get it right, go gluten free.  If you see positive results. . . that is all that matters, at least to me.  Good luck!

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And remember that dh can & all too often does still present for 2 yrs. or more after going gluten-free. When I first went gluten-free, my dh laid down almost completely & at times was gone for short periods but it can & does come back. So going gluten-free is no instant magic bullet.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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