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 Herpetaformis


onthemend

Recommended Posts

onthemend Newbie

dh I am brand new to this....never done a blog before. I am 61 years young and was dxs with dh ten years ago. I maintained on a glutin free diet with rare breakthru until last January. I am now using only certified glutin free products and on dapasone and STILL expeeriencing blisters. Have anyone heard of this complication before?

Thanks Much


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



Celiac.com Sponsor (A8-M):



nasalady Contributor
dh I am brand new to this....never done a blog before. I am 61 years young and was dxs with dh ten years ago. I maintained on a glutin free diet with rare breakthru until last January. I am now using only certified glutin free products and on dapasone and STILL expeeriencing blisters. Have anyone heard of this complication before?

Thanks Much

My husband has recently been diagnosed with DH, and was put on Dapsone. Even with the medication he broke out with new blisters, although they were much smaller and healed quickly. We know he was probably glutened a couple of times but other breakouts have no good explanation.

I think maybe he's detoxing, but I don't really know.

This would not be the answer to your problem, however, because you've been gluten free for 10 years. Is it possible that you are using something in your kitchen (cutting board, toaster, etc) that may have some gluten contamination?

Good luck!

JoAnn

  • 3 weeks later...
Barbie gf Newbie

:rolleyes::rolleyes:

dh I am brand new to this....never done a blog before. I am 61 years young and was dxs with dh ten years ago. I maintained on a glutin free diet with rare breakthru until last January. I am now using only certified glutin free products and on dapasone and STILL expeeriencing blisters. Have anyone heard of this complication before?

Thanks Much

I experienced this and found that I had to eliminate all external products containing wheat or HWP. I started with soaps, shampoos and rinses, cosmetics, toothpaste. Incidently I have read that people with DH are sensitive to floride. I still have flair ups when I get glutenated unknowingly, but am much better...good luck

Barbie gluten-free

KathiSharpe Apprentice

Silly question but is there gluten in things like laundry soap or fabric softener or dryer sheets? Or in the finish put on fabrics?

I always see people mention bath & beauty products but never laundry supplies. (Perhaps because it's a non-issue???)

Barbie gf Newbie
Silly question but is there gluten in things like laundry soap or fabric softener or dryer sheets? Or in the finish put on fabrics?

I always see people mention bath & beauty products but never laundry supplies. (Perhaps because it's a non-issue???)

Clan thompson has a list to start with. this website has a list of health and beauty products,www.cpsmeticdatabase is a good resource to search by producr. www.celiacsyndrome has a not ssafe list which is good. Delphi forums is another place to look for lists of safe stuff...Hope this helps

Barbie gluten-free

Barbie gf Newbie
Silly question but is there gluten in things like laundry soap or fabric softener or dryer sheets? Or in the finish put on fabrics?

I always see people mention bath & beauty products but never laundry supplies. (Perhaps because it's a non-issue???)

One more thing, alot of professionals say that external gluten cannot affect DH, my experience is that is does, and for me it did. Once I eliminated things like lotion wit HWP for exemple, I saw immediate improvement. I did also take Dapsone, but that seemed to make things worse...

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    PattyPagnanelli
    Newest Member
    PattyPagnanelli
    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
      I agree with @trents, but thank you for bringing this up here!
    • Jane02
      Hi @trents, yes I've had my levels checked in Dec 2025 which revealed vit D deficiency. I considered eggs although they only contain about 45 IU vitamin D/egg. I need 2000 IU vitamin D for maintenance as per my doctor. Although now, I likely need way more than that to treat the deficiency. My doctor has yet to advise me on dosing for deficiency. I've also considered cod liver oil, although again, if it's processed in a facility that has gluten, especially on flour form, I worried to test it, even if they have protocols in place to mitigate cross-contamination with gluten.
    • trents
      Welcome to celiac.com, @Jane02! Have you had your serum D levels checked for deficiency/sufficiency? What about cod liver oil? Egg yolks can also be a good source of vitamin D.
    • Jane02
      Hello, I'm very discouraged. I've been trying to find a safe vitamin mineral supplement brand for months and am tired of testing one after the other and experiencing my typical 'glutening' reactions. I'm really feeling the nutritional deficiencies set in. I'm doing the best I can to get these nutrients from my food, although it's impossible for me to intake enough vitamin D as I can't have dairy and have insufficient sun exposure in the northern hemisphere. I've tried B Complex from Country Life (certified gluten-free) - horrible reaction. I've tried Metagenics vitamin D tab (certified glute-free) - bad reaction. I've tried liquid vitamin D Thorne and D Drops - reactions were mild since I tried a drop of a drop. I understand there could be other things I'm reacting to in my diet, although my diet/intake is pretty consistent with minimal variables so I do think it's something in these supplements. I understand I could be reacting to the active ingredient vitamin/mineral itself or even the filler ingredients. I tried the vitamin D drops since the only filler ingredient is coconut oil, in some brands, which I know I can tolerate really well on its own - I cook with coconut oil frequently and have no 'glutening' reactions at all. Perhaps I'm reacting to the vitamin D itself, although I eat fatty fish every few days, an entire fillet with no 'glutening' reactions, which contains anywhere between 400-600 IU per fillet so I shouldn't be sensitive to vitamin D. All this to say, I'm desperately looking for at least a safe vitamin D supplement. Does anyone know of a safe vitamin D supplement brand? I'd love to know if there are any supplement brands that have absolutely no gluten (especially in flour form) in their facilities. I've heard of Kirkman having no grains in their facility - I may try this brand. Has anyone reacted to this brand?   
    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
×
×
  • 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.