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Dh Experts Please Help

mindyandy420

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mindyandy420 Apprentice
mindyandy420
Posted

Reading more into this Celiac thing....I am now putting 2 and 2 together. About 10 years ago I had clear blisters (very itchy) on my feet. They were so painful after itching and just terrible. I thought maybe athletes foot? I dont really have that problem anymore....but I do get it on my hands sometimes.

My question is Celiac rash is typically on elbows, knees, buttocks...etc....can it happen anywhere?

I get itchy rashes on my legs both lower and upper. I get the itchy clear blister things on my hands. They are like deep. The more I itch the more it seems to show....I try not to pop them but the itching is unbarable sometimes. Then they scar up and look iky....

Your experiences please.

Are they like clear blisters....and very itchy? Where do you get them? Do they leave reddish purplish scars?

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OptimisticMom42 Apprentice
OptimisticMom42
Posted

yep anywhere! My co-worker had them IN his eyes. My son's hands peel. I get the blisters on the backs of my knees, mostly the left one.

Tigertail Newbie
Tigertail
Posted

Yes you can have them any where. I get them on my knee's, elbow's, feet, hands, torso, inside my ears, my eye's, my private area, around my mouth, my arms & legs, in other words all over, lol. But as long as I stay TOTALLY gluten free I am totally clear of any rash. If I so much as get a crumb of bread, or kiss my grandchildren after they have eaten, or any type of contamination, I break out within 10 minutes. So of course I stay gluten free because it is so miserable. Not to mention the gut problems. Good luck, and I wish you the best. Lacey

ang1e0251 Contributor
ang1e0251
Posted

I mostly get the blistery ones on my forearms and hands, mostly my right. I get a different looking rash in the groin area but both are triggered by gluten.

tiredofbeingsickandtired Apprentice
tiredofbeingsickandtired
Posted

This has got me thinking. Whenever I ate sunflower anything I got blisters on my eyeballs, lips, face, hands, chest, etc..... hmmmmmmm

mindyandy420 Apprentice
mindyandy420
Posted
  • Author

Looking at DH pics....makes me wonder if this is what I had experienced before. I remember for awhile I had what looks to be DH all over my shins. Very very itchy...I thought I had bugs.

K-Dawg Explorer
K-Dawg
Posted
Looking at DH pics....makes me wonder if this is what I had experienced before. I remember for awhile I had what looks to be DH all over my shins. Very very itchy...I thought I had bugs.

I was recently diagnosed with celiac disease (April 2009). FOr teh past 8 years I"ve had a terrible itchy rash on my shins....derm's thought it was psoriasis. It just wouldn't go away.

Since going totally gluten free it is almost completely gone! This leads me to believe it is DH. I did not expect that going gluten free would solve the problem as I assumed it was just treatment resistant psoriasis

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angieInCA Apprentice
angieInCA
Posted

It sounds like DH to me. I have had blisters everywhere. Watery blisters that have come up in clusters or singlely. THey are very deep, very itchy, and sore to the touch. I have had them on my face, neck, scalp, ears, torso, arms, shins, lips, toes. fingers and vaginally. I've had them on the palms of my hands and the soles of my feet. Fortunately not all at once but anywhere they appear they are miserable. Since going gluten free I seldom have breakouts except for when I have an accidental glutening. Now they are pretty much confined to my forearms or hairline of my scalp.

mindyandy420 Apprentice
mindyandy420
Posted
  • Author

Yes...this soooo sounds like me. I can get them in clusters and individually. They can pop up anywhere...very deep and itchy and sore like you say. Ugh....I need my insurance to kick and then find a doctor whom is willing to listen and give me the correct blood testing.

angieInCA Apprentice
angieInCA
Posted

You can go to a dermatologist that is familiar with DH and DH testing (not all are) for a skin biopsy. THey test the skin surounding the blister area not the blister itself. If you have DH you are Gluten Sensitive or Intollerent or Allergic and you may or may not have Celiac Disease.

As with Celiac Disease they only way to really treat DH is to live a Gluten free lifestyle. There are some drugs but to me they are not worth the risk.

jkr Apprentice
jkr
Posted
You can go to a dermatologist that is familiar with DH and DH testing (not all are) for a skin biopsy. THey test the skin surounding the blister area not the blister itself. If you have DH you are Gluten Sensitive or Intollerent or Allergic and you may or may not have Celiac Disease.

As with Celiac Disease they only way to really treat DH is to live a Gluten free lifestyle. There are some drugs but to me they are not worth the risk.

Doesn't the diagnosis of DH mean you do have celiac disease?

angieInCA Apprentice
angieInCA
Posted
Doesn't the diagnosis of DH mean you do have celiac disease?

I by no means claim to be an expert on DH but I think the jury is out on this as much as they are on how "rare" Celiac Disease is. I should have stated may or may not have celiac disease of the gut. DH is considered celiac disease of the skin and not all people who have DH have gluten-sensitive enteropathy.

If you go to the AOCD site Open Original Shared Link

it will tell you what I stated and that is what my Dr. told me.

IF you go to Celiac Spru Association Open Original Shared Link

they will tell you it is a complication associated with Celiac Disease.

But does it really matter, you still need to live Gluten Free.

hippo33 Apprentice
hippo33
Posted
Yes you can have them any where. I get them on my knee's, elbow's, feet, hands, torso, inside my ears, my eye's, my private area, around my mouth, my arms & legs, in other words all over, lol. But as long as I stay TOTALLY gluten free I am totally clear of any rash. If I so much as get a crumb of bread, or kiss my grandchildren after they have eaten, or any type of contamination, I break out within 10 minutes. So of course I stay gluten free because it is so miserable. Not to mention the gut problems. Good luck, and I wish you the best. Lacey

i didnt know it could be that crasy ive been on the diet 7 days now and yesterday i got a couple spots so it coul have been when i kissed my girlfriend after she had toast wow ill have to tell her to go brush her teeth next time

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      Thank you for the article Scott. It was very informative.  I didn’t realize I should have been eating a certain amount of gluten prior to the test.  I only eat bread maybe 1x a week, don’t eat cereal.  Pasta occasionally.  I’m sure there is gluten in nearly everything, so I’ve had gluten but no idea how much, but definitely not slices of bread. Not sure how much or how little that could affect my results.  My doctor didn’t mention anything about eating more gluten or eating bread. 
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