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

Rash Disappeared When Diet Tweaked


dws

Recommended Posts

dws Contributor

I have recently had to go to a whole foods/non-processed diet due to my increased gluten sensitivity. I am one of those people who doctors do not think has celiac disease. The only blood work that I scored above normal was an IGG blood test(a pretty high positive). Negative on IGA's including TTG. Negative on genetic testing. No biopsy done while eating gluten because my doctor was sure my blood work pointed to non-celiac gluten intolerance rather than celiac. I accepted this diagnosis and was very happy with the disappearance of my intestinal symptoms when I stopped eating gluten. After abour 2 years, I began to struggle again and have been kind of on the run trying to stay ahead of the sensitivity curve, leading me after a lot of trial and error to a whole food diet which has helped a lot. I can't remember when I started having an angry, itchy, and sometimes painful red rash on either side of my nose where my nose meets my cheeks. I think it may have been about 15 years ago. Long before I eliminated gluten which was about 5 years ago. My doctor decided it was not Rosacea and gave me a strong antifungal cream which kept it somewhat at bay if I used it every day but never got rid of it. Well, with this final tweaking of my diet, the rash has gone away. Now I have gone back to wondering if I have Celiac after all and that they just don't know enough about it to exclude it with the current testing standards. I also have always had discolored tooth enamel with white bands. Lactose intolerance has also become a problem in the last couple of years. I know the location of the rash isn't typical for DH, but what do you folks think? Anybody had a similar rash?


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

I too, had rashes that did not occur in the typical places for Celiac DH. I was on anti-fungals, aniti-virals, anti-bacterials, and finally they said it was neurotic excoriation. It went away but only after 14 months totally gluten free. I went Paleo and it all went away...including depression and anxiety, migraines and muscle weakness. I say if the rash goes away when you get off of wheat and gluten...then it probably is DH...

They certainly do not know enough about it to be diagnosing it consistently with any accuracy. Your research is as good as it gets. I would assume DH and live accordingly. Congratulations on healing yourself!

This is just my humble opinion after 7 miserable years with this rash moving around my body and landing on my face. Mine is on the forehead and chin...or should I say WAS!!! Because I too, healed myself. Turns out I am extremely sensitive to gluten...as you are....and I do way better on whole foods, no preservatives and no grains.

Took a long time...but the rash is gone...never could get a dermatologist to agree to biopsy...so we will never know....except that...we already know!!!! Thank you for sharing your story because other's will read it and heal from it too.

itchy Rookie

You are right about the testing. Most of the active posters here have had the experience of not being diagnosed by the tests used.

When your doctor says you may have 'non=coeliac gluten intolerance", he is probably refusing to acknowledge that his tests don't detect your illness. From your general symptoms you certainly sound coeliac to me, which means that you have to eat gluten free for the rest of your life. If indeed you are coeliac and have DH, I think that you can expect to see the rash return (perhaps with a vengeance) whenever you return to a gluten diet.

Perhaps not a typical location for a DH rash, but otherwise sounds like it. Most coeliacs are intolerant of milk, I'm not sure it is lactose intolerance, because Lactaid never made any difference for me. I am still intolerant of raw milk products but don't have a problem with cultured milk products like cheese or yougurt. Generally milk intolerance improves with a gluten free diet.

dilettantesteph Collaborator

There are many skin conditions linked with celiac disease. Open Original Shared Link

It could be something besides DH.

dws Contributor

You are right about the testing. Most of the active posters here have had the experience of not being diagnosed by the tests used.

When your doctor says you may have 'non=coeliac gluten intolerance", he is probably refusing to acknowledge that his tests don't detect your illness. From your general symptoms you certainly sound coeliac to me, which means that you have to eat gluten free for the rest of your life. If indeed you are coeliac and have DH, I think that you can expect to see the rash return (perhaps with a vengeance) whenever you return to a gluten diet.

Perhaps not a typical location for a DH rash, but otherwise sounds like it. Most coeliacs are intolerant of milk, I'm not sure it is lactose intolerance, because Lactaid never made any difference for me. I am still intolerant of raw milk products but don't have a problem with cultured milk products like cheese or yougurt. Generally milk intolerance improves with a gluten free diet.

I am not sure it is lactose intolerance either. I have been somewhat confounded by my experiments with dairy. I seem to do best with aged cheese like cheddar which is low in lactose, but then I too have trouble with Lactaid which is supposed to be just as low in lactose. Yogurt does kind of so-so for me. I drank milk with no problem up to a few years ago, so I would question a casien problem- seems like it would have bothered me since childhood.
Metoo Enthusiast

I have recently had to go to a whole foods/non-processed diet due to my increased gluten sensitivity. I am one of those people who doctors do not think has celiac disease. The only blood work that I scored above normal was an IGG blood test(a pretty high positive). Negative on IGA's including TTG. Negative on genetic testing. No biopsy done while eating gluten because my doctor was sure my blood work pointed to non-celiac gluten intolerance rather than celiac. I accepted this diagnosis and was very happy with the disappearance of my intestinal symptoms when I stopped eating gluten. After abour 2 years, I began to struggle again and have been kind of on the run trying to stay ahead of the sensitivity curve, leading me after a lot of trial and error to a whole food diet which has helped a lot. I can't remember when I started having an angry, itchy, and sometimes painful red rash on either side of my nose where my nose meets my cheeks. I think it may have been about 15 years ago. Long before I eliminated gluten which was about 5 years ago. My doctor decided it was not Rosacea and gave me a strong antifungal cream which kept it somewhat at bay if I used it every day but never got rid of it. Well, with this final tweaking of my diet, the rash has gone away. Now I have gone back to wondering if I have Celiac after all and that they just don't know enough about it to exclude it with the current testing standards. I also have always had discolored tooth enamel with white bands. Lactose intolerance has also become a problem in the last couple of years. I know the location of the rash isn't typical for DH, but what do you folks think? Anybody had a similar rash?

I 'had' a small 1" diamter spot on my hand, that would blister, peel off, be all puffy and inflammed looking...then repeat that cycle over and over. It hurt too! Hurt like a burn would. My doctor passed it off as stress induced excema, said he had never seem an excema patch that concentrated though.

6 Months later I went gluten free and it dissapeared! Now it returns only when I eat gluten...and its spread it now covers more and more of my pink/side of hand when I eat gluten. (I am only on my 4th or 5th glutening) Now I seem to more sensative though too, bread crumbs were all over my kitchen from the kids...I broke out somehow from that.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.