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

dermatitis herpetiformis

gluten-free-33

Recommended Posts

gluten-free-33 Newbie
gluten-free-33
Posted

I was originally diagnosed with celiac disease by my neurologist who ran more intensive blood work than anyone had previously. After seeing a GI and having an endoscopy completed I was told that I've had celiac for a long time based on the results. I started the gluten free diet in March. Recently I have begun to see rashes that, based on research, seem to be dermatitis herpetiformis. My dermatologist diagnosed the first appearance as eczema after a biopsy. Over the last few days I've been seeing more of these areas appearing, mainly on my neck and back. I never had any skin condition like this before starting the gluten-free diet, only migraines and daily headaches. Has anyone else experienced things like this AFTER going gluten-free?

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

Celiac.com Sponsor (A8-M):


Diana061 Newbie
Diana061
Posted

Is it possible you have shingles ? 

gluten-free-33 Newbie
gluten-free-33
Posted
  • Author

I suppose it's possible? But I'm not sure it's shingles since it went away (mostly) and has now reappeared in different places? I don't know much about shingles either... I'm sort of at a stop point on which doctor to actually see and trust. It seems most I've seen aren't well-versed in Celiac Disease and I've been doing a lot of my own research. Feeling fairly at a loss about it all with no clear direction where to go next. 

squirmingitch Veteran
squirmingitch
Posted

Do you have a shared household? Do you eat out? Are you eating oats? Are you sure you're not getting cross contaminated?

Have you read our Newbie 101 pinned to the top of the Coping section?

How was the biopsy done? ON a lesion (or rash)? That is not a biopsy for dh. A biopsy for dh is taken adjacent to a fresh lesion & there is an immunofluorescent staining process & it's looked at by pathology for a particular patterning.

If it is eczema, eczema & other skin rashes/problems are common to celiacs. 

gluten-free-33 Newbie
gluten-free-33
Posted
  • Author

We were on a trip out of town for a family wedding (eating out a couple times when necessary) when this second round started so that's what is leading me to think it is DH or something resulting from cross contamination. My initial biopsy was taken from the rash area. Although my dermatologist knew I had been diagnosed Im not sure he thought it was related. I'm confused because I never had these things show until after eliminating gluten. 

Jmg Mentor
Jmg
Posted
9 hours ago, gluten-free@33 said:

 Has anyone else experienced things like this AFTER going gluten-free?

I had what I think was DH about 18 months into being gluten-free. It was an intensely itchy rash on each elbow. I reviewed my diet and stopped eating a breakfast cereal which I'd previously thought was safe, but had barley malt in it. The rash resolved. Note I didn't go to the doctors, so I can't tell you that it was DH, but it's my best guess.

It wasn't like shingles which I've definitely had. That follows a nerve pathway around the body, it's very sore to begin with and progresses into ugly raised sores. Painful and unpleasant! To be honest, you will soon know if you have it. 

I also have seborroic dermatitis and folliculitis, it wasn't like those. My theory is that as I progressed on the diet my body became more sensitive and previously tolerated amounts were no longer suitable for me. So my advice to you would be to review your diet as per squirmingitch above to see if there's any rogue food, sauce etc which may be letting even the smallest bit of gluten into your system. 

Sue7171 Rookie
Sue7171
Posted
On 8/8/2016 at 1:47 PM, gluten-free@33 said:

I was originally diagnosed with celiac disease by my neurologist who ran more intensive blood work than anyone had previously. After seeing a GI and having an endoscopy completed I was told that I've had celiac for a long time based on the results. I started the gluten free diet in March. Recently I have begun to see rashes that, based on research, seem to be dermatitis herpetiformis. My dermatologist diagnosed the first appearance as eczema after a biopsy. Over the last few days I've been seeing more of these areas appearing, mainly on my neck and back. I never had any skin condition like this before starting the gluten-free diet, only migraines and daily headaches. Has anyone else experienced things like this AFTER going gluten-free?

Only if I accidentally ate gluten OR put anything with gluten on my skin. Is it possible that some shampoo/soap/lotion you have and are applying to yourself has gluten in it?

BTW the treatment besides avoidance for DH is Dapsone in a gel form applied to the affected area.

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

Celiac.com Sponsor (A8-M):


gluten-free-33 Newbie
gluten-free-33
Posted
  • Author

Thank you all for your thoughts and assistance. I'm more hopeful knowing there are supportive people out here!

Archived

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

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


  • Member Statistics

    • Total Members
      129,872
    • Most Online (within 30 mins)
      7,748
    terrymouse
    Newest Member
    terrymouse
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Alibu
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By Alibu · Posted

      I just had my endoscopy the other day and the doctor took 12 samples because he said if we're going to find something we're going to find it today LOL. But when he got down there, he said everything looked good. So I have it in my head again that it's going to be negative because everyone I've heard of who had a positive biopsy had their endoscopies where the doctor was like yep, I can see the damage. My tissues all look great apparently. So if they come back negative, I'm not sure where to go from here. Could it still be a non-celiac gluten sensitivity even with my blood work? I thought NCGS didn't show up on blood tests. Is it possible that the biopsy still comes back positive even if everything looked healthy on endoscope? I had it done at a big hospital in the state, so I would think they'd have the kind of equipment where they'd be able to see it well. I even have pictures in my report and they don't seem to have the damage that others have seen.
    • trents
      Virus, celiac disease or both?

      By trents · Posted

      That's just it. When they are doing an EGD, even with biopsy, if they aren't thinking about celiac disease they may miss it. They should take several samples from both the duodenum and the duodenum bulb. Damage can be patchy and easily missed if sampling isn't through. And patch damage may explain lack of dramatic symptoms. Let me assure you that we frequently have posters on this forum who were silent celiacs for years and were diagnosed incidentally with celiac disease when their docs were checking for other things. They developed other medical problems such as anemia or vitamin and mineral deficiencies, neurological deficits, Hashimodo's thyroid, osteoporois, etc. - non GI symptoms - but their docs recognized those problems as often connected to celiac disease and had them checked for celiac disease, both blood antibody testing and biopsy, and found damage. A couple of years ago the Mayo Clinic did a large study involving over 300 people. They started with those officially diagnosed with celiac disease and also tested their first degree relatives. They found that almost 50% of  the first degree relatives tested positive for celiac disease and many or most were totally caught by surprise because they were largely asymptomatic. Their diagnosis was confirmed by biopsy. I really don't have anything more to say. You have some decisions to make.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Blood tests are affected by what you've had to eat in the previous day or two and any vitamin supplements you've taken in the past month or two.   If you have been taking vitamins before the time of the blood test, the vitamins supplements could mask a deficiency.  So get the tests before supplementing, or allow eight to twelve weeks for the supplements to wear off.    The thing with blood tests is that they measure what is in the blood, not what is stored inside organs and tissues where vitamins are actually utilized, and may miss subclinical deficiencies.  In times of shortages, the brain can order cells to release their stored vitamins into the blood stream in order to keep important organs like the brain and heart functioning.   Overall, getting blood tests for deficiencies is a good idea if it's available to you.  If you're deficient in any of the B vitamins, take a B Complex with all the B's in it.  The eight B vitamins work with one another like an orchestra.  Supplementing just one can throw the others off.  
    • Shining My Light
      Virus, celiac disease or both?

      By Shining My Light · Posted

      Thank you @trents! This is all sound advice. In 2022 I did have a biopsy done with the EGD: SPECIMEN: (A) DUODENUM, BIOPSY (B) GASTRIC BIOPSY(C) GASTRIC POLYP, BIOPSY(D) ESOPHAGUS BIOPSY (E) ESOPHAGUS BIOPSY This would have been when the candida was found.  If I understand right it’s the duodenum they take a biopsy of. Nothing was mentioned about Villous atrophy however they were not looking for that particularly.    Something that stumps me is the correlation between symptoms and damage. One seems to equal the other. I have yet to see damage with “silent celiac”. Not saying it doesn’t exist.  Also super curious on other symptoms that would improve based on a gluten free diet. Obviously silent celiac wouldn’t have an improvement in GI symptoms but that is all I have read any data for. No one saying things like my anxiety went away or my headaches and joint pain are gone.    I see why it would be a “gluten challenge” since eating 4-6 slices of bread daily is a challenge to do. 😳 I would replace that with cake 🍰😉 
    • xxnonamexx
      Supplements for those Diagnosed with Celiac Disease

      By xxnonamexx · Posted

      I know I haven't been tested for Celiac yet. But If I took a blood test would they be able to say what I am deficient in as far as vitamins and minerals so I can see what supplements to take or is it not that easy to figure out what is needed to balance out vitamins/minerals. 
×
×
  • Create New...