Jump to content

  • 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):

Dh Just On Fingers?

DanieGurl

By DanieGurl
in Dermatitis Herpetiformis

Recommended Posts

DanieGurl Rookie
DanieGurl
Posted

I have been tested for celiac disease but they came back negative, however reading this site i think a rash i have sounds like dh

I have had this rash on my fingers for a few years now, it started on one finger then spread to another and now has spread to a finger on the other hand and a knuckle.

its red and itchy and will crack easily and it never goes away, at its worst it'l have little fluid filled bumps, creams and moisturizer only stop the itching briefly but doesn't actually clear it up.

I have been to the dr about it and was tested for fungus but it wasnt so just got given cream for dermatitis, are the little fluid bumps only characteristic of DH or is it similar to other dermatitis?

does this sound like DH?

I thought it was usually on legs, backs, arms? i don't have it anywhere else

I have also had eczema forever but its not as bad as it used to be but it will occasionally flair up on my writs and inner elbows

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

Celiac.com Sponsor (A8-M):


itchy Rookie
itchy
Posted

Daniegirl, the symptoms you've described don't seem like quite enough for me to hazard a guess, one way or another.

You could ask to be rebiopsied, making sure the test was properly done ie sampled beside the lesion, not on it.

Have you tried going strictly gluten free for a few weeks, also avoiding high iodine foods. (I got enough relief after a couple of weeks to convince me that I was right about my self diagnosis. But then I also had several very typical symtoms as well).

Have you checked the photos of DH online?

kdprouty Newbie
kdprouty
Posted

I have been tested for celiac disease but they came back negative, however reading this site i think a rash i have sounds like dh

I have had this rash on my fingers for a few years now, it started on one finger then spread to another and now has spread to a finger on the other hand and a knuckle.

its red and itchy and will crack easily and it never goes away, at its worst it'l have little fluid filled bumps, creams and moisturizer only stop the itching briefly but doesn't actually clear it up.

I have been to the dr about it and was tested for fungus but it wasnt so just got given cream for dermatitis, are the little fluid bumps only characteristic of DH or is it similar to other dermatitis?

does this sound like DH?

I thought it was usually on legs, backs, arms? i don't have it anywhere else

I have also had eczema forever but its not as bad as it used to be but it will occasionally flair up on my writs and inner elbows

Mine started out on my fingers just like you. My scalp also breaks out and I have had a couple on my arm right above my elbow. I have never had it on my legs. It appears that some have DH a lot worse than others. Originally I was told I had various skin problems and also given creams and ointmentslike you.

I finally went to Mayo's and had several biopsies.

I had a biopsy on a spot close to where I had a blister but not on the blister. It came back positive for DH. My blood test was negative for Celiac. A specialist at Mayo's said that I would need to be on a gluten free diet the rest of my life.

I think your blisters sound just like what I had. You should have a biopsy of an area close to a blister but not taken from the blister. If that isn't how your biopsy was done, I would see the doctor again or find another one.

Good Luck!!

  • 4 weeks later...
JMac Newbie
JMac
Posted

I have celiac and DH. The rash you described sounds like what I had on my fingers when the DH was in the early stages for me. For a period of time the DH was primarily on my fingers. One of the features of the rash on my fingers was that I could feel the bumps/cysts coming before they were visible. Oftentimes they looked like blood blisters and were pretty painful. My fingers eventually cleared up, but the DH moved on to other areas and is now focusing on my back and scalp. It took about 18 months to figure it out (a few doctors were less than helpful) but I was finally diagnosed with celiac and DH 6 months ago and have been strictly gluten-free since. Frustratingly, the DH is not gone, but it has gotten meaningfully better - it was overwhelming for a while. I am just learning about a potential connection to iodine so I am just starting to give that a try. I will miss my seafood and sea salt.

  • 2 weeks later...
yorkieluv Newbie
yorkieluv
Posted

I don't know the answer to your question but I have something that sounds exactly like that. I have a patchy area on one knuckle that gets really itchy, red and I can feel little bumps. The area gets dry and cracks which really hurts. Everytime this appears on my knuckle I have some sort of area on the opposite hand on my pinky finger on the outer side. It looks blistery and really itches. I am going see a dermatologist soon but I am worried I want have this when I go. Mine comes and goes, so I have wondered if it is DH or not. Would be interested in hearing what you find out.

rosie k Newbie
rosie k
Posted

so i couldnt help but wonder what and if this newly acquired patch on my thumb is what you all are talking about. bout two weeks ago now this area on my right thumb knuckle swelled up with little bumps with little heads on them. not really discolored, not really painful, only if pressed on. has gotten slightly more swollen in time but not by much. i was diagnosed with celiacs 5 years ago and recently cut out dairy and peanut butter as an attempt to alleviate new gastric distress thats occured within the last few months. i think it may have helped but more restrictions may need to be inacted, including unfortunately soy. never heard of dh before but am wondering if its related.

itchy Rookie
itchy
Posted

Before I went strictly gluten free, I had mild GI symptoms but I also had a variety of mild skin symptoms on my hands that came and went. When full blown DH developed it was at only some of these sites. When I went extremely gluten free, all of the mild skin spots disappeared and only the DH spots remained, slowly getting better.

What I am trying to say is that if one is pre DH, one could have many mild (but probably irritating) skin problems that are related to consumption of gluten. Mine included bumps, rough itchy skin patches, and occasional small blister.

I don't know how you would know for sure these were DH related, except by eliminating every last bit of gluten from your diet. I think it's unlikely that it would show up on tests, (didn't for me) as, if the levels of antibodies were high enough to be detected, they'd likely be causing a major rash.

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

That is a very good description of how my DH started several years before it became the full blown blistery rash.

mamadinosaur Newbie
mamadinosaur
Posted

I had a rash on m fingers around my nails too. It was painful and made it difficult to type at times. The dermatologist I saw said it was contact dermatitis - from irritants. At the time I was on mat leave (cleaning and living with baby wipes in my hand..) Anyway, fast forward a couple of years and I have full blown DH. It's all over my body now when I flare. My experience is this starts off revealing itself in small ways - then all of sudden it hits hard and there seems to be no turning back. Push your dr's to investigate further. Don't be satisfied with a prescription for cortisone. I was and now I regret it. It's potentially more -and if you are lucky, you just have contact dermatitis or something in that vein.

Good luck.

Skylark Collaborator
Skylark
Posted

I have one spot on my hand that blisters occasionally and itches like the devil. I used to think it was herpes whitlow but I had no reason to get that. It's mostly a dentists' disease. Now I'm betting on DH, especially with all the intense itching.

  • 2 months later...
schelbo Newbie
schelbo
Posted

Every time I peel shrimp I get the same thing. Shrimp = iodine

Archived

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

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

  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442
    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
×
×
  • Create New...