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

Iodine Attack!

ndw3363

By ndw3363
in Dermatitis Herpetiformis

Recommended Posts

ndw3363 Contributor
ndw3363
Posted

I've been gluten-free almost 4 weeks - active lesions were still itchy, but slowly healing and no more new ones. WELL then yesterday happened. I couldn't get out of the office for lunch, so I ate my emergency frozen gluten-free clam chowder that I had in the freezer. Not even thinking that the whole thing was probably full of iodine. Within hours I was itching like crazy. It's everywhere - all my old spots that were healing nicely came back like crazy. Didn't occur to me what it was that I ate that caused the whole mess until late last night. I'm swearing off all seafood for at least 3 months. I'm really just venting, but does anyone have any experience with this? Will these new ones stay around for weeks like the old ones, or might they heal a little faster if I'm more careful?

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

Celiac.com Sponsor (A8-M):


hnybny91 Rookie
hnybny91
Posted

I have been gluten free for over two months and still break out. Mine seem to last just as long too. It takes YEARS for the antibodies under the skin to go away.

ndw3363 Contributor
ndw3363
Posted
  • Author

I was afraid of that. Just so frustrating!!! My outbreaks were mild and merely a little annoying while I was still eating gluten. Now that I'm gluten free, they are driving me insane!! I itch ALL DAY!! Used to only be on my elbows - now it's in and around my ears, back of my neck, on my back, back of legs, etc. Anybody have any suggestions to take the edge off while they heal? I had to take an antihistamine last night just to get to sleep!

hnybny91 Rookie
hnybny91
Posted

I take benedryl when the itching gets bad too. Mine has always been spread out and not in clusters like many have. If you eat eggs you might notice you break out too because I think there is iodine in eggs. I stopped eating them so much and do not itch as much anymore.

eatmeat4good Enthusiast
eatmeat4good
Posted

I'm so sorry to hear that you had a reaction. I am recovering from my last episode. But, yes, it seems any mistake will be paid for- for weeks.

I can't do dairy or eggs and I don't know why (iodine?). They both bother my sores.

Healing is slow. Cass recommended a Ionized Silver ointment from Whole Foods and says it cleared hers up. I haven't tried it yet. I use Pain Relieving Ointment-Walgreens brand of Benzocaine. Takes the sting away for a while.

But yeah, fish and shellfish is awful for DH. Took me a long time to wrap my head around how serious the reactions will be.

I ate Funyuns absentmindedly while watching a movie with my son. Salty. I ate 3 before I realized the familiar sting. It is a neverending adventure.

itchy Rookie
itchy
Posted

Yes, NDW, perhaps I've been experiencing it too.

I've been on holidays and got a lot of sun and ate a bit of seafood. Everything is stinging and itching, including spots not exposed to the sun. So either it is stress from travel, or iodine from the seafood. We ate nothing but fruit, vegetables, meat and fish that we cooked ourselves, so it is unlikely to be from gluten.

The difference is, the only effect has been the itching and stinging. So far, no worsening of the lesions, which have been healing more or less steadily for several weeks.

itchy Rookie
itchy
Posted

I was curious about iodine in dairy as discussed on a couple of threads so I did a little surfing and came up with these general sites.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

The source below suggests that dairy might be a lower source of iodine than in past years, due to changing practices in the dairy industry.

Open Original Shared Link

While iodine seems to be a factor in DF, it seems to me that the priority has to be reducing gluten, and it is very difficult to monitor ones success if one is suppressing the lesions by avoiding gluten. And going iodine free is dangerous in itself over the long run.

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

Celiac.com Sponsor (A8-M):


  • 3 weeks later...
ChemistMama Contributor
ChemistMama
Posted

Antihistamines do nothing for DH (except if you take enough of them to make you fall asleep). DH isn't a histamine response, it's another part of the immune system. I've found that Sarna lotion (the one without the menthol) works great. It contains the painkiller that's in Neosporin Pain and it works great to dull the itching.

As for iodine, you don't need to go iodine free, just don't use iodized salt and avoid shellfish and seaweed for a few months. There's enough iodine in the rest of your food to make sure you get enough (you don't need much). NSAIDS also can aggravate DH, use Tylenol instead of Advil or Aleve for awhile too. Good luck!

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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    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

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.