Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dh Experts Please Help

mindyandy420

Recommended Posts

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,817
    • Most Online (within 30 mins)
      7,748
    Charisse25
    Newest Member
    Charisse25
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.2k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Iris Kraft
      Inhaler problem

      By Iris Kraft · Posted

      I do not use menthol lozenge, but I have found a brand of oral probiotics that has same ingredients as Prodentim but without spending $50  bottle. I bought Naturewise Oral probiotics from Amazon at $29 a bottle for 50 chewables instead of the 30 qty. The Simbicort upset the bacteria is my mouth, had white tongue and created a dental problem with a tooth, plus the inflammation in throat, vocal cords. Used the chewable and rested it along the gum where tooth hurts 4 x on Monday. Tuesday, went to dentist and she looked at what I thought was my problem tooth and she said all looked pink and happy. No problem.  Also, I spoke with my Allergist and he said instead of two puffs am and pm, try one puff only in am.Can always add one puff in PM if needed. Rinse mouth twice and gargle twice, and brush tongue. Use the Rescue inhaler Albuterol if needed (which I didn't need to). Know that Flucasolone, Simbicort, Advair are interchangeable.
    • Ann13
      Inhaler problem

      By Ann13 · Posted

      I have the exact same symptoms for a couple of wks now but I've been taking Symbicort for quite awhile at this point. I read you can get yeast infection in the vocal cords so I may ask my Dr. for antifungal meds cos I cant wait for an ENT exam. Also read on this site the connection between Vit D and K2 deficiency and asthma...doesn't apply to me cos mine is from mold in a house years ago but still might try and see if my asthma improves. I am Celiac and gluten causes the same symptoms but it says this inhaler is gluten free and it only started acting up so that option is out. I use Ventolin on occasion but using that for many many years. For me I will see if can switch inhalers to a brand that doesn't affect vocal cords as much, Advair is NOT one of them, plus will try the supplements. Do not suck on menthol lozenges cos menthol dries out cords more...sleeping elevated and sucking on ice chips gets the swelling down...at night this can really help especially. I can't continue like this so will get on everything this coming week.  
    • Rhenriksen
      Just diagnosed with Celiac! Scared and feel alone.

      By Rhenriksen · Posted

      Did a little more research just now and found out that even though the max methane should not exceed 10. It is normal to be around 3 and not rise. Again, I was at 13 so this does make me a bit suspicious. This was done back in May of 2024. I do recall being put on 14 day Antibiotic called Rifaximin but I'm really not sure if it made a difference, but if it did, then the problems still came back:( 
    • Rhenriksen
      Just diagnosed with Celiac! Scared and feel alone.

      By Rhenriksen · Posted

      I did a SIBO Test about a year ago, and I barely elevated on the Methane portion (max was 10 and I hit 13). Dr wasn't too concerned.    
    • trents
      Just diagnosed with Celiac! Scared and feel alone.

      By trents · Posted

      Have you looked into SIBO (Small Intestine Bacterial Overgrowth)?  Also, MCAS (Mast Cell Activation Syndrome)/histamine intolerance (they go together like a hand and glove).  Both of the above are common in the celiac community.
×
×
  • Create New...