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Jean in Newcastle

Celiac Folk: Dermatitis Herpetiformis

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DD has been on a strict gluten free diet since August but she continues to have this rash and oozing blisters.  She is not cheating.  What should we do?  Could simply buying gluten free things not be enough?  Ie. I know that gluten free can still mean some trace amounts of gluten in there, right? 

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Yes, you might have to go more strict on trusted companies, whole foods, no restaurants. But it's more likely that there is a gap in knowledge somewhere and she is taking in gluten unawares, something hidden in labels of toiletries, maybe.

 

I am so sorry. I've suffered from this, I know how painful it can be.

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How strict is strict?  Is she eating like a celiac when she eats out?  Is she avoiding soy sauce, shared fry equipment, etc?  Trace gluten can show up in crazy places.  Eating out is hard.

Edited by Attolia
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How strict is strict?  Is she eating like a celiac when she eats out?  Is she avoiding soy sauce, shared fry equipment, etc?

We have a totally gluten free kitchen with new toaster and cutting boards and some cookware.  No gluten allowed in our kitchen.

 

She eats out maybe once a week.  We tend to go to a totally gluten free restaurant or to a regular restaurant whose manager has celiac and so is super cautious about cross contamination and has trained all her employees.  But there is some risk still of course when we're out esp. if we eat somewhere else. 

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Has she been seen by a dermatologist? Is it a constant rash or does it wax and wane?

 

My guess is that she is either consuming an unknown source of gluten or it's not all Derm. Herp. I get funky, painful bumps when I eat dairy. 

 

Has she tried a highly restrictive diet where she only eats fruits, vegetables, some proteins? I mean really bare bones. If so, does the rash get better on a restrictive diet? 

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Has she been seen by a dermatologist? Is it a constant rash or does it wax and wane?

 

My guess is that she is either consuming an unknown source of gluten or it's not all Derm. Herp. I get funky, painful bumps when I eat dairy. 

 

Has she tried a highly restrictive diet where she only eats fruits, vegetables, some proteins? I mean really bare bones. If so, does the rash get better on a restrictive diet? 

 

She's been seen by the celiac specialist (who is a G-I doc of course) who diagnosed it.  But he did mention sending her to a dermatologist if it doesn't resolve.  We haven't done that yet but I'm thinking that maybe that should be next.

 

She has not gone that restrictive. 

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Oh and it waxes and wanes.  She will get a large hive on an area of her body (like one big raised area that could be three inches across in diameter).  That is followed by very itchy blisters.  Then the skin is gone on that area and sometimes becomes bruised.  Then she can lose skin pigmentation in that area for months (she is Eurasian). That area will get better and she might be fine for a month and then she will have another place break out.  It is mostly on her shoulders, upper back and arms.  This week she has had three outbreaks which is much more than usual. 

Edited by Jean in Newcastle

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Is she experiencing any other symptoms of being glutened?

 

If you don't want to see the dermatologist yet, I would suggest going on an elimination type diet for two to three weeks. Eliminate all GF processed foods (pastas, bread), sauces, etc and dairy and only eat fruits, vegetables, and other such foods. See if the rash clears up any. If there is a noticeable difference begin adding back her favorite GF or dairy based foods. If there is a reaction, you'll be able to determine which food is the culprit. If there are no changes, then a trip to the dermatologist is next in line.

 

Edited: I moved the "and dairy" because that should have been included in the elimination diet.

Edited by Scoutermom
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Oh and it waxes and wanes.  She will get a large hive on an area of her body (like one big raised area that could be three inches across in diameter).  That is followed by very itchy blisters.  Then the skin is gone on that area and sometimes becomes bruised.  Then she can lose skin pigmentation in that area for months (she is Eurasian). That area will get better and she might be fine for a month and then she will have another place break out.  It is mostly on her shoulders, upper back and arms.  This week she has had three outbreaks which is much more than usual. 

Has anything changed in her diet? New bread? New cereal? 

 

Could it be a stress reaction? Is she overly stressed or anxious about something?

 

Has she been exposed to any germs? Since celiac is an autoimmune disease, her system may be stressed and the rash may be the visible sign.

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Has anything changed in her diet? New bread? New cereal? 

 

Could it be a stress reaction? Is she overly stressed or anxious about something?

 

Has she been exposed to any germs? Since celiac is an autoimmune disease, her system may be stressed and the rash may be the visible sign.

 

She's been having this rash since summer and other than going on a strict gf diet in August no new foods per se.  And nothing to indicate why she would have an increase in rashes.

 

I don't think it is stress.  She does have some anxiety but it isn't more around outbreaks or anything.

 

It's flu season so she's probably surrounded by germs.  But she herself is pretty remarkably healthy for someone with autoimmune problems. 

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My dh was diagnosed with this a couple of years ago.  He had suffered for about 4 years prior to this and was continually misdiagnosed (including one dermatologist who kept doubling the amount of allergy meds from 4 to 8 to even 16 pills per day, in which my dh was falling asleep in the middle of conversations...it was bad).  Finally, his mother sent him a Reader's Digest article about Dermatitis Herpetiformis and he knew right away this is what he had...but he had to practically beg a different dermatologist to conduct a punch biopsy next to an active lesion in order to get a confirmed diagnosis.

 

Anyway, my dh is totally gluten-free, but he has to also take low dose Dapsone to be close to symptom-free, and he gets blood work done once a year to make sure his liver enzymes and RBC's do not get out of whack.  So far, so good.  I might mention that he does have to reside in a house where there is still a lot of gluten around, since my dc eat it and my dd loves to bake.  She usually waits, though, until he is away on a business trip before she makes things out of homemade dough.

 

I might add that I am sad for anyone that finds out they have this disease while they are still so young as I imagine your dd is.  However, it is great that you found out a definitive diagnosis so soon!

 

 

Edited by Omma
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I’d just get her to the dermatologist. You’ll drive yourselves crazy trying to figure this out on your own. (Says fellow celiac sufferer)

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Double check any medications that may contain gluten, or lip gloss and lipstick, supplements, dental products, etc. 

Edited by dsmith
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I’d just get her to the dermatologist. You’ll drive yourselves crazy trying to figure this out on your own. (Says fellow celiac sufferer)

 

I have a call into the celiac specialist to see if he can treat it or if he will refer to a pediatric dermatologist.  I already found out this morning that I can search my insurance site for pediatrics or dermatology but not pediatric dermatology. . .     (Stupid!)  We found out that the pediatric dermatologists at our children's hospital clinics are covered but I want to go to one who knows how to deal with this.  When I go to the dermatology site they don't have dermatitis herpetiformis as something they treat.  That could just be because it isn't in the general population though.

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At her age (teen), I think I'd be less concerned about finding a pediatric dermatologist--I'd find someone who sees a lot of celiac and autoimmune patients.  And, frankly, I think I'd want a biopsy and pathology looking at it.  You aren't sure it's dermatitis herpetiformis; I'd want a rule out of discoid lupus and some other things.

 

And I really hate typing those words, but that's what popped to mind....

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I'm not sure if we're allowed to link to another forum, but if you go to celiac dot com they have a forum for DH. 

 

 

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