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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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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