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

Can You Still Break Out In Dh For A While After Going gluten-free?


GravStars

Recommended Posts

GravStars Contributor

Hi everyone.

After several years of wondering about celiac and brief periods of being gluten-free, I've finally made it about 3 months with no gluten (I could never make it longer than a few weeks at a time in the past, for various reasons). I'm not feeling that much better but I could be getting CC'd here as other people are pretty messy and leave crumbs and food residue on the counters all the time. But anyway... I have these itchy red bumps on my arms that I've suspected are DH. I'm still getting them. They started on my legs 2 years ago, then moved to my arms, and recently I've even had some on my abdomen and back of neck. They are very much like bug bites except I know they are not, and they are always on both arms (though usually only one to three major bumps at a time on each arm, and they itch but not ALL the time and not painfully like I've read DH can be). Actually about a week after going gluten-free this time I had my first (and largest single) outbreak on my forearms (before that it was always the outer sides of my upper arms), which seemed strange. Also, on a few occasions I've had tiny water blisters appear on the backs of my hands and even tiny, waterless, clear (almost invisible) bumps on the hands and elbows (but these don't itch).

So assuming this is DH, can it take a while to completely clear up, or is it more likely that I'm still getting glutened?

mike


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

Welcome to the forum Mike, and yes, you are probably getting gluten from CC. Once you are gluten free, the DH should clear up. It will also probably be the first sign of being glutened from now on. You may have to designate and area in the kitchen just for you, and always clean the area before using it...sometimes it takes others a long time to realize the importance of your being totally gluten-free.

lovegrov Collaborator

It's my understanding that DH an take months and months to clear even if you are gluten-free because you still have Iga deposits under the skin. Iodine can also trigger attacks until you clear up completely.

richard

GravStars Contributor

thanks to both of you for the responses. i will be more aware of avoiding CC as well as giving the DH more time to clear up.

ravenwoodglass Mentor
It's my understanding that DH an take months and months to clear even if you are gluten-free because you still have Iga deposits under the skin. Iodine can also trigger attacks until you clear up completely.

richard

As Richard says it can take a long time. It can take up to 2 years for some. But the outbreaks should be less severe after a while. The iodine means you should get some uniodized salt to use on your food. That will make a difference. Be careful too with topicals and shampoos and stuff. It is easy to get tiny amounts in your system which is enough to keep those deposits active and forming new ones.

flourgirl Apprentice

Just wanted to add a note. I've found that anti-inflammatories also cause outbreaks; like Ibuprofen and Aleve. I'm not sure about other types as I've avoided all pain relievers. For me they all cause more pain throughout my system than the pain I was trying to relieve. When I first started the gluten-free diet I had DH everywhere. I had several outbreaks until there was no place left on my body that had not had it. The blisters and the areas did get smaller with each outbreak (iodized salt was the main culprit, I think), until I had a gluten accident (from Outbackand their supposed gluten-free menu :angry: ). I then had another huge outbreak that took almost 3 months before it even started to get better. I also have digestive problems, severe pain and inflammation of joints, bone pain, anemia and briuses, headaches....on and on. All of it came back with a vengence thanks to someones carelessness at Outback.

Anyway.....good luck getting better...and here's to good health!

GravStars Contributor

thank you.

i do take ibuprofen pretty much on a daily basis because i get stress headaches. i dislike taking medicine of any kind, but ibuprofen has become a habit. i will try cutting it out and see. i've found some natural methods that help with the stress anyway.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
thank you.

i do take ibuprofen pretty much on a daily basis because i get stress headaches. i dislike taking medicine of any kind, but ibuprofen has become a habit. i will try cutting it out and see. i've found some natural methods that help with the stress anyway.

If you have been taking this daily be aware that you may need to taper off. If your headaches get worse when you suddenly stop it, a rebound headache, then don't give up taper your dosing.

In addition if you are getting daily headaches and DH outbreaks you may be getting CC'd somewhere. I have pets and just feeding them gluten food and having contact with them was enough to keep my DH reactive. It took me forever to figure that one out.

I hope things improve soon.

Archived

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

  • 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. - trents replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    2. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    3. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

    4. - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    5. - Scott Adams replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      My journey is it gluten or fiber?

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

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
    • Scott Adams
      Some members here take GliadinX (a sponsor here) if they eat out in restaurants or outside their homes. It has been shown in numerous studies to break down small amounts of gluten in the stomach, before it reaches your intestines. This would be for small amounts of cross-contamination, and it would not allow any celiac to eat gluten again.
×
×
  • 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.