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Skin Biopsy For Dh


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29 replies to this topic

#1 answerseeker

 
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Posted 01 November 2013 - 08:00 AM

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
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


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#2 mamaw

 
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Posted 01 November 2013 - 04:57 PM

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....


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#3 squirmingitch

 
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Posted 01 November 2013 - 06:43 PM

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. <_<


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#4 answerseeker

 
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Posted 01 November 2013 - 06:53 PM

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 :blink:


  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#5 squirmingitch

 
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Posted 02 November 2013 - 02:58 AM

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.


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#6 answerseeker

 
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Posted 02 November 2013 - 08:42 AM

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
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#7 squirmingitch

 
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Posted 02 November 2013 - 11:18 AM

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)))))))


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#8 answerseeker

 
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Posted 02 November 2013 - 11:38 AM

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


  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#9 squirmingitch

 
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Posted 02 November 2013 - 12:05 PM

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?


  • 2

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#10 answerseeker

 
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Posted 02 November 2013 - 12:36 PM

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


  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#11 squirmingitch

 
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Posted 02 November 2013 - 01:02 PM

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. 


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#12 ItchyAbby

 
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Posted 02 November 2013 - 02:19 PM

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? :P ) 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!


  • 1

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#13 jiggles

 
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Posted 06 November 2013 - 11:56 AM

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
  • 0

#14 answerseeker

 
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Posted 06 November 2013 - 12:05 PM

I already avoid NSAIDs because of my asthma so its Tylenol for me too!
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#15 squirmingitch

 
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Posted 06 November 2013 - 06:30 PM

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. 


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 





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