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. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.