Skin Biopsy For Dh

[answerseeker]

I had my derm appointment yesterday for this rash that I get and it comes and goes. I had one sore on the tail bone and he biopsied it. He said the rash didn't have to be active (the sore has already scabbed over and is healing)

My question is though, I was diagnosed celiac in July and have been gluten free since then. With a few accidental glutenings. So the biopsy may not be correct right? The derm does think its early DH but of course can't say for sure without a positive biopsy

[mamaw]

I'm not  sure how  true  this  is  but  I  read  that  the  biopsy should  not  be  done  on  the lesion  but  beside  it  on  clear  skin. I  don't  quite  understand  that  but  it  was  printed  somewhere in my  reading....

[squirmingitch]

Lordy, lordy, lordy when will the derms learn?????? The biopsy has to be done on CLEAR skin ADJACENT to an ACTIVE lesion. ANNNNNDDDDD you have already been dx'd with celiac disease so why a dh biopsy? AND you have been gluten free since July (accidents aside & they would not be enough to consider you actively eating gluten) SO ANY DH BIOPSY WILL TURN UP NEGATIVE. You MUST be actively eating a normal gluten diet when the dh biopsy is performed. 

 

Sorry hon, your derm just wasted your time & money but he made money.

[answerseeker]

Lordy, lordy, lordy when will the derms learn?????? The biopsy has to be done on CLEAR skin ADJACENT to an ACTIVE lesion. ANNNNNDDDDD you have already been dx'd with celiac disease so why a dh biopsy? AND you have been gluten free since July (accidents aside & they would not be enough to consider you actively eating gluten) SO ANY DH BIOPSY WILL TURN UP NEGATIVE. You MUST be actively eating a normal gluten diet when the dh biopsy is performed. 

 

Sorry hon, your derm just wasted your time & money but he made money.

 

he did take it from the skin adjacent to the active lesion. I have an active one. He is familiar with DH he said. And he said by looking at it he thought it was DH. I wanted to make sure it wasn't something else, even though I pretty much knew what it was.

 

Why would I get new lesions if I'm not eating gluten? Am I still getting cc'd or can DH still show up after being gluten free?

 

great now I have a very sore bum for nothing! I have 2 stiches right on my tailbone, not fun wish it would have shown up in a more conveinent spot

[squirmingitch]

With dh, the antibodies are deposited under the skin & that's what causes the rash. If you get glutened now, you most likely won't get the GI issues or not to the same extent. When 1 has the rash, we tend not to have the big GI issues. The rash will present until ALL the antibodies are out of the skin. Time? It can be 2 or more years & the rash is sensitive to the tiniest amount of gluten. You get cc'd, you add to the time until the rash goes away b/c you deposit more antibodies under the skin.

So here's the bottom line~~~ you may not know if you got cc'd b/c if you don't get GI symptoms, you won't know until the rash makes you crazy. So you have to be rabid about not getting cc'd & I mean rabid!

The dh can come & go at will (or stay) even though you are strict gluten-free & it can do that for years until the antibodies are gone.

Try limiting iodine intake for a couple weeks. Iodine makes the dh worse. See thyca.org for low iodine diet.

[answerseeker]

Aw ok that makes sense. I get some GI symptoms but not like before diagnosis. But the rash is the very first sign that I got glutened. It usually shoes up within a couple hours. I still get stomach issues but not like debilitating.

It's weird because it started showing up just within the last couple months. I was on prednisone for my asthma so I'm thinking that suppressed it and now its showing up

[squirmingitch]

Ohhhhhhhhhhhhh, okay. Now, let me tell you a little something about steroids & the rash. Steroids will handle the rash BUT & that's a very big BUT..... the minute you go off them, the rash will rebound with a flaming vengeance!!!!! So many of us have been there, done that when we were prescribed steroids for the rash b/c the docs did not know what it was nor how it reacts to steroids. 

 

So I understand you were taking it for your asthma & that's going to be a sticky wicket for you now. Every time you have to go on it, the rash is going to clear up or nearly so but then every time you go off it, the rash will punish you severely. My heart goes out to you. I realize you're going to have to take steroids for the asthma from time to time & you're going to suffer worse from the rash b/c of it.

 

Great big huge ((((((HUGS)))))))

[answerseeker]

Ohhhhhhhhhhhhh, okay. Now, let me tell you a little something about steroids & the rash. Steroids will handle the rash BUT & that's a very big BUT..... the minute you go off them, the rash will rebound with a flaming vengeance!!!!! So many of us have been there, done that when we were prescribed steroids for the rash b/c the docs did not know what it was nor how it reacts to steroids. 

 

So I understand you were taking it for your asthma & that's going to be a sticky wicket for you now. Every time you have to go on it, the rash is going to clear up or nearly so but then every time you go off it, the rash will punish you severely. My heart goes out to you. I realize you're going to have to take steroids for the asthma from time to time & you're going to suffer worse from the rash b/c of it.

 

Great big huge ((((((HUGS)))))))

I hate the steroids and really try to avoid them, now this gives me another reason to! But in June I was hospitalized for the asthma and pumped full of steroids in my IV and by mouth so it makes sense why this is rearing it's ugly head now. My asthma dr. believes gluten was the major trigger in the asthma so I'm hoping it won't be much of a problem now. I actually only had to take my inhaler a couple times since going gluten-free and that was only because I cought the kids cold.

 

What is the concensus on using gluten free skin products with DH? I'm reading conflicting information but my neck breaks out and I'm wondering if it is because of hair products with gluten. It gets very itchy and stings

[squirmingitch]

First let me tell you about NSAID's. They are known to make the rash flare. Some of us can use Tylenol but personally, i have to really monitor my use of even that. I used to couldn't take it at all w/o a flare & now almost 2 years gluten-free, I can take it in strict moderation. There is a product called Arnica gel (OTC) that 1 can use for muscle aches etc.... as it's not an NSAID.

 

I'm really glad to hear your doc thinks gluten was triggering the asthma ~~~ I was just thinking about that & wondering so maybe (let's hope) that's the case & you won't have to deal with being caught between a rock & a hard spot.

 

Well, "officially" the med professionals say that topical gluten will not hurt you. But those of us with dh have a different story to tell. We get lesions, & that's an opening in the skin & where there is an opening in the skin, gluten can get. That's the way I look at it. And I will say that I am not a reactionist. I really try to look at things logically & not just freak out. Shampoo ~~ it can get in your mouth as can conditioner you use or anything else you put on your hair. Lotions ~~ you touch your leg & then later maybe put your hand on your lips or whatever. I don't use any topical products w/ gluten. Sorry, don't care what anyone else says about it. I can't afford to have this rash punish me anymore than it already has/does. I'll challenge anyone who says different b/c until you've experienced this rash, you will never fully know the hell it is. My dog is also gluten free. Why? I kiss my dog. Yep, I do. My dog licks herself & I kiss places she may have licked. So she's not eating anything with gluten in it. Grain free dog food. Also her shampoo is gluten-free. The rash is unbelievably sensitive to the tiniest amount of gluten. i can not stress that enough! You need to get absolutely vigilant not to get cc'd now. Do yourself a favor. It's not fun but I guarantee the alternative is far worse.

And, I haven't seen any medical studies that tested celiacs with dh using topical products with gluten in them so they are just talking out of their hats on that score & until they can prove it with valid studies then I will continue the course of gluten-free topical products.

I may or may not have a topical wheat allergy?????? Sort of????? but long before (years) I knew I had celiac & dh, I quit wearing makeup. When I wore it even for an hour, i would get itchy, puffy flesh. I now use gluten-free makeup & have no problems. Nuff said?

[answerseeker]

yep nuff said! I always thought I had ezcema and would react to body wash and lotion with a vengence. I could never figure out why I had little water filled blisters on my feet when I looked up ezcema it didn't mention anything about blisters. Now I know what they are. I've now switched to Dove body wash (I was using a body wash with oats in it for years)

 

you've been super helpful! thank you so much.

 

I'm still researching gluten free skin care. I'm using Matrix line for shampoo/condiitoner which I belive to be gluten free

[squirmingitch]

YVW answerseeker!

 

I use Suave Naturals Shampoo & Conditioner & they work great for me. You can't hardly find anything cheaper & it's gluten-free. I use Vaseline Intensive Rescue Repairing Moisture for body/hand lotion - it's gluten-free but don't trust the other Vaseline lotions. I use Afterglow cosmetics (online) but there are a # of gluten-free cosmetic companies out there now.

 

Yep, I was using Aveeno washes & lotions for a long time there BC (before celiac discovery) & wondered why I was still getting irritated skin. 

[ItchyAbby]

Hi there answerseeker,

I would not be surprised at all if your asthma is caused by gluten. My sister has had terrible allergies and asthma all her life, had to take steroids, keep an inhaler close by, etc. She went gluten free accidentally two years ago (trying to lose baby weight - stopped eating toast in the mornings and bread at dinner, noticed BIG changes in her mood, brain fog lifted, etc etc) and has not had asthma problems since...unless she gets cc'd. She was at a potluck recently (the bain of anyone who is gluten intolerant) and ate a cookie she believed to be gluten-free only to find out it was not. Within the hour she was weezing. I also have a friend who has terrible asthma and has gotten it somewhat under control by being gluten-free (he needs to be a bit more strict, IMO). AND my boyfriend has been asthmatic throughout his adult life until he gave up gluten four years ago - now he is completely weeze free and doesn't get tight in the chest when he exercises.

 

Our dear Squirmy has given you very good advice. I also changed out any bath products that had gluten ingredients and have gotten my dog gluten free - it just seems to be better to eliminate all the variables, you know? I will add this as one newbie to another: healing will take time. People told me this in the beginning, too, and I was "Oh, of course." but I now have a new understanding of what it means: It's a two steps forward, one step back kind of process. The first few months the learning curve is especially high (or at least it was for me - maybe I am just slow? ) Just stay vigilant and patient and research like mad. And come here when you need some comfort and/or brainstorming. It's a great resource and so helpful to have people that know what you are going through!

[jiggles]

Hi I am so glad I saw this , since IrishHeart Squirmy and ItchyAbby mentioned Dog food

I noticed the treats I was feeding him were full of gluten , I stopped that and the Iodised salt too ,

and we are now gluten free in our house after hubs read the posts ,

I have been using a muscle rub with ibuprofen and asprin in , I think that may be NSAIDs too ,

I notice my rash is spreading now , so I will stop using that ,

thank you for posting about this Squirmingitch

[answerseeker]

I already avoid NSAIDs because of my asthma so its Tylenol for me too!

[squirmingitch]

Hi I am so glad I saw this , since IrishHeart Squirmy and ItchyAbby mentioned Dog food

I noticed the treats I was feeding him were full of gluten , I stopped that and the Iodised salt too ,

and we are now gluten free in our house after hubs read the posts ,

I have been using a muscle rub with ibuprofen and asprin in , I think that may be NSAIDs too ,

I notice my rash is spreading now , so I will stop using that ,

thank you for posting about this Squirmingitch

YVW jiggles!

I do wash my mouth & my hands after touching my dog but you know, there's always going to be those times when something distracts you before you wash up & it only takes once!

 

I will say to all of you too b/c this bears repeating over & over & over again:

EATING OUT IS LIKE PLAYING RUSSIAN ROULETTE! Unless you eat at at completely gluten-free restaurant; YOU ARE PLAYING WITH FIRE!!!! And that applies if you are celiac & do NOT have dh. for those with dh it's just insane IMHO. 

[GF Lover]

 

 

I will say to all of you too b/c this bears repeating over & over & over again:

EATING OUT IS LIKE PLAYING RUSSIAN ROULETTE! Unless you eat at at completely gluten-free restaurant; YOU ARE PLAYING WITH FIRE!!!! And that applies if you are celiac & do NOT have dh. for those with dh it's just insane IMHO. 

 

Squirmy,

 

I am glad you said this again.  I have noticed a trend in posts of "newer" celiacs or gluten intolerants lately.  If a restaurant has a gluten free menu then It must be ok to eat there and people are flocking to eat out all the time.  I think its crazy!  You can choose a gluten free option at any restaurant, that's not the issue.  The issue is in the PREPARATION of that food in a GLUTEN KITCHEN.   Some people are not seeing this part of the equation.  Ok.  Rant over.  And what am I even doing on a DH thread?

 

Colleen

[squirmingitch]

Squirmy,

 

I am glad you said this again.  I have noticed a trend in posts of "newer" celiacs or gluten intolerants lately.  If a restaurant has a gluten free menu then It must be ok to eat there and people are flocking to eat out all the time.  I think its crazy!  You can choose a gluten free option at any restaurant, that's not the issue.  The issue is in the PREPARATION of that food in a GLUTEN KITCHEN.   Some people are not seeing this part of the equation.  Ok.  Rant over.  And what am I even doing on a DH thread?

 

Colleen

You're welcome on the dh thread anytime Colleen! Why shouldn't you be here????? It's ALL celiac.

On the subject of restaurants.... SNORT! Back when hubs & I were unaware we had celiac; we would get SOOOOOOOOOO frustrated eating out! A bare minimum of 75% of the time they got something wrong with our order anyway. They couldn't do it right then!!!! There's no way we think they're going to get it right for us NOW!    

[ItchyAbby]

Squirmy,

 

I am glad you said this again.  I have noticed a trend in posts of "newer" celiacs or gluten intolerants lately.  If a restaurant has a gluten free menu then It must be ok to eat there and people are flocking to eat out all the time.  I think its crazy!  You can choose a gluten free option at any restaurant, that's not the issue.  The issue is in the PREPARATION of that food in a GLUTEN KITCHEN.   Some people are not seeing this part of the equation.  Ok.  Rant over.  And what am I even doing on a DH thread?

 

Colleen

Maybe we need to have something in the Newbie thread(s) about this? (i.e. - do not trust the gluten free "options" in restaurants) The learning curve is SO steep in the beginning and the idea that you can still go out to eat like a "normal" person is all too alluring. I cried so much when I realized that I wouldn't be able to go to some of my favorite restaurants again. I'm over it now, but it was a hard pill to swallow.

 

I have a friend who has worked in restaurants for 20+ years. She said that she would not feel okay having me eat in any restaurant that was not 100% gluten free. It is exactly as Squirmy says: Roulette. (I am so very thankful that 4 - OMG! FOUR! - totally, dedicated, 100% gluten free restaurants have opened up in my town just since my dx! Did I pick the right year to get Celiac or what? Once I get through the #$%ing low iodine phase, I'll be checking them out more.)

[LuannS]

Hello Everyone! Had the "rash" for a few weeks and have always suspected a gluten intolerance and have always tried to cut back on wheat - I know now it is all or nothing. My question is I stopped eating any gluten after Thanksgiving as the rash went/is crazy - and had the biopsy done six days later so I was only GlutenFree for six days... Is that too long to be without gluten before the biopsy? I hope I didn't mess up the results of the biopsy? I also have many thyroid problems, and was recently diagnosed with asthma! Somehow I think this these are all related. Thanks so much in advance I can't wait to get the results..

[squirmingitch]

Who knows? You shouldn't have gone gluten-free at all before the biopsy. So if it's neg. then you won't know if it's neg. for real or false negative.

[IrishHeart]

Hello Everyone! Had the "rash" for a few weeks and have always suspected a gluten intolerance and have always tried to cut back on wheat - I know now it is all or nothing. My question is I stopped eating any gluten after Thanksgiving as the rash went/is crazy - and had the biopsy done six days later so I was only GlutenFree for six days... Is that too long to be without gluten before the biopsy? I hope I didn't mess up the results of the biopsy? I also have many thyroid problems, and was recently diagnosed with asthma! Somehow I think this these are all related. Thanks so much in advance I can't wait to get the results..

 

Some researchers say that the gluten antibodies will still be elevated enough for valid testing. And the DH rash is the

last thing to resolve off gluten --if it is, in fact, true DH.  I had rashes, but they were not typical DH blistering lesions. There are all kinds of rashes

associated with celiac and gluten intolerance.

See what happens.

 

If you suspect the test results are compromised, tell the doctor who did the biopsy to run it again.

After all, the doctor should have been the one to tell you to continue consuming gluten for a biopsy to be done correctly.

Best wishes, Let us know what happens.

[squirmingitch]

Hello Everyone! Had the "rash" for a few weeks and have always suspected a gluten intolerance and have always tried to cut back on wheat - I know now it is all or nothing. My question is I stopped eating any gluten after Thanksgiving as the rash went/is crazy - and had the biopsy done six days later so I was only GlutenFree for six days... Is that too long to be without gluten before the biopsy? I hope I didn't mess up the results of the biopsy? I also have many thyroid problems, and was recently diagnosed with asthma! Somehow I think this these are all related. Thanks so much in advance I can't wait to get the results..

Luann, I want to apologize for my snarky "Who knows?" to you. I failed to notice that this was the first time you were posting. My bad & I'm sorry for that. Far too often we tell people not to go gluten-free before they get all testing done but so very many do go gluten-free anyway & then come back crying when they test negative & it's probably b/c they went gluten-free before the fact.

It still stands though that if your biopsy comes back negative then you just won't know if it's a false neg. or really negative.

If your doc didn't tell you to keep eating gluten until the biopsy then odds are the doc also doesn't know the correct way/place to take a dh biopsy. It's not like most biopsies. And he has to give the lab certain instructions. 

Well, let us know what happens.

[msmath]

Okay, I have a 9 year old daughter and the dermatologist told us last Thursday he suspects DH.  She was diagnosed with OCD at 6 and was thought to be an obsessive compulsive skin picker UNTIL we saw the dermatologist for plantar warts and I asked him to look at her "picking spots".

 

He said gluten free diet immediately, come back in a month, and if her spots were improved due to diet, he would biopsy two and do bloodwork for gluten allergy.  He said he was SURE this was DH.

 

Does this sound like good advice?

 

I'm trying desperately to keep her away from ALL gluten, but she's had a slip almost every day.  Yesterday was first 100% gluten-free day.  How long before the dh will improve?

 

HELP ME PLEASE!!! )

[kareng]

Okay, I have a 9 year old daughter and the dermatologist told us last Thursday he suspects DH. She was diagnosed with OCD at 6 and was thought to be an obsessive compulsive skin picker UNTIL we saw the dermatologist for plantar warts and I asked him to look at her "picking spots".

He said gluten free diet immediately, come back in a month, and if her spots were improved due to diet, he would biopsy two and do bloodwork for gluten allergy. He said he was SURE this was DH.

Does this sound like good advice?

I'm trying desperately to keep her away from ALL gluten, but she's had a slip almost every day. Yesterday was first 100% gluten-free day. How long before the dh will improve?

HELP ME PLEASE!!! )

No. That is terrible advice. I would find another derm who knows how to biopsy for DH properly. They need to take the skin next to a fresh spot.

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[pricklypear1971]

Okay, I have a 9 year old daughter and the dermatologist told us last Thursday he suspects DH. She was diagnosed with OCD at 6 and was thought to be an obsessive compulsive skin picker UNTIL we saw the dermatologist for plantar warts and I asked him to look at her "picking spots".

He said gluten free diet immediately, come back in a month, and if her spots were improved due to diet, he would biopsy two and do bloodwork for gluten allergy. He said he was SURE this was DH.

Does this sound like good advice?

I'm trying desperately to keep her away from ALL gluten, but she's had a slip almost every day. Yesterday was first 100% gluten-free day. How long before the dh will improve?

HELP ME PLEASE!!! )

NO!!! The biopsy needs to done while she's eating gluten (now), and when she isn't on steroid creams/oral med (if she is...). The biopsy is a punch biopsy taken next to a lesion. It is dyed and the lab tech looks for an iga pattern - iga is the antibody celiacs produce in response to gluten. So gluten is necessary for an accurate biopsy and accurate bloodwork.

That said, you can try testing now and if + you have your answer. If -, consider a gluten challenge and retest (misery for dh sufferers).

There are meds that can be used to reduce dh eruptions, but I don't know if a young child can safely use them.

Most dh sufferers are quite sensitive to gluten - so the smallest bit could keep it active. Others have dh that is reactive to iodine - like water on a grease fire (gluten being the grease). So, some of us need to follow a low iodine diet for a while.

I think there's a basics thread on dh in the dh forum? There's definitely a newbie forum for celiac on here.