Jump to content

  • 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 After Going Gluten Free?

sclarkey2003

By sclarkey2003
in Dermatitis Herpetiformis

Recommended Posts

sclarkey2003 Newbie
sclarkey2003
Posted

I was diagnosed with celiac about a year ago by accident (I have always been symptom free). Even though I had trouble sticking with the diet at first, I finally went totally gluten-free this past summer. Recently, I've had this rash on my neck. At first I thought it was from my necklace but it only seemed to get worse after I stopped wearing it. I checked it out and it looks a lot like the pictures I've seen of dh ...

Is it possible that I could get dh now that I'm totally gluten free, after never having symptoms before going gluten-free?? Any thoughts would help ... thanks!

Sarah

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

Celiac.com Sponsor (A8-M):


LauraZ Rookie
LauraZ
Posted

Hi Sarah,

My only thought is that since you are now totally gluten-free, if any gluten sneaks by at all, it might create more symptoms than you originally had. I say this because, before her diagnosis, my daughter used to have gas pains every few days. They lasted only about 15 minutes and could be helped with Gas-X. After the gluten-intolerance diagnosis and being gluten-free for almost a month, any tiny bit of gluten will wipe her out for two full days with stomach pains/diarrhea.

Have you had the rash for a while or is it more recent?

sclarkey2003 Newbie
sclarkey2003
Posted
  • Author

I started getting a rash/blister on one side of my neck at the beginning of september and then got another two on the other side only a few weeks ago. The first one is mostly gone but the two newer ones are definitely still there. This is the first time I've noticed anything liek this but I have only been completely gluten free for about two months...so what you said about getting more symptoms after going gluten-free could definitely be true.

sarah

LauraZ Rookie
LauraZ
Posted

The one thing that had gluten that I didn't even think about eliminating until my scalp/neck still got sores was my shampoos. Almost everything I had either had wheat or oats in it. You have probably already checked this, but just in case...

Laura

VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

Check with your GI or dermatologist.

They could prescribe Dapsone for you -- that should help if it is DH...

  • 2 weeks later...
sclarkey2003 Newbie
sclarkey2003
Posted
  • Author

Since I'm originally from MA but go to school in New York City, I haven't been able to see my regular doctor. I went my school's Health Services, but couldn't find anyone helpful. The doctor I saw had never heard of DH before so he did a little "research" while I was in his office. He googled it, read an article about it and told me that "since it normally occurs on the elbows, knees, buttocks, etc and since mine is on my neck, i DEFINITELY don't have it". Wow he had no idea what he was talking about. Anyway, he gave me a prescription for a topical steroid cream and I'm not sure if I should use it. Any ideas? (I left a message with my doctor at home and she's on vacation so I can't get in touch with her)

Claire Collaborator
Claire
Posted
Since I'm originally from MA but go to school in New York City, I haven't been able to see my regular doctor.  I went my school's Health Services, but couldn't find anyone helpful.  The doctor I saw had never heard of DH before so he did a little "research" while I was in his office.  He googled it, read an article about it and told me that "since it normally occurs on the elbows, knees, buttocks, etc and since mine is on my neck, i DEFINITELY don't have it".  Wow he had no idea what he was talking about.  Anyway, he gave me a prescription for a topical steroid cream and I'm not sure if I should use it.  Any ideas?  (I left a message with my doctor at home and she's on vacation so I can't get in touch with her)

<{POST_SNAPBACK}>

I have to butt in on this one. DH does usually appear on elbows and knees - however, my friend's husband has this skin problem and his has appeared on the scalp, on the neck - and a very few times on his face. So much for doctor's who learn from the internet while the patient waits. If he had gone further he would have found more. But what can you expect in one office visit. :lol::lol::lol: Claire

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.