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

Dh Positive 1 Month Now

crab

By crab
in Dermatitis Herpetiformis

Recommended Posts

crab Newbie
crab
Posted

I am 53 and been suffering from an unknown issue now for 6 months or so, finally got a confirmed diagnosis from a derm about a month ago for DH. It explains alot for me, possibly going back to when I was about 10 years old. My test results were "IgA, Serum 85 " with the range of anything over 8 being positive, and Tissue Transglutaminase Antibody 68. Fairly convincing I think, as I have been suffering horribly for the last 3 months with the blisters. After starting the gluten free diet 3 weeks ago, its better but not gone away and still getting some new ones on my arms and legs. Just read about the Iodine triggers, sure enough I am getting 100% rda in my Costco multivitamins....oops.

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

Celiac.com Sponsor (A8-M):


crab Newbie
crab
Posted
  • Author

Btw, anyone know if Kerns nectar is safe?

squirmingitch Veteran
squirmingitch
Posted

I drink Kern's Apricot nectar & it's fine for me. I think all the Kern's stuff is probably okay but all you have to do is read the ingredients. But don't go for anything with strawberry as I remember strawberries are high in iodine content. Of course I remembered that AFTER I got some strawberry/banana yogurt.

I'm back doing low iodine myself as a result of accidental glutening by cc. I have found the probiotics in the yogurt to help but I only eat about a tablespoon full each day. Trying to keep the iodine as low as possible while juggling indigestion issues.blink.gif

At least you got a confirmed diagnosis crab. That's more than most of us get. Course we consider our self diagnosis to be as good as.....

For low iodine diet & list of foods high in iodine Google thyca.com. Quit the iodized salt, no egg yolks, no organ meats, no potato skins, no seafood, no milk, cheese, butter.

Let us know how it goes.

squirmingitch Veteran
squirmingitch
Posted

Also, it will take a while for things to start clearing up. We are all different in the time it takes.

I wish you rapid healing. And be careful. Gluten lurks in many places out there.

crab Newbie
crab
Posted
  • Author

Kerns told me via email there stuff has no gluten, but I don't trust anything made in mexico...what does cc mean, and whats the deal with dairy?

weaselfish Rookie
weaselfish
Posted

Kerns told me via email there stuff has no gluten, but I don't trust anything made in mexico...what does cc mean, and whats the deal with dairy?

Hi crab,

CC is Cross Contamination, meaning a product can become contaminated with gluten due to wheat also being processed in the same facility. For example, oats contain no gluten yet can be contaminated going through the same machines as wheat, barley, and rye. As far as the dairy, cows udders as well as the milking machines are sterilized with iodine as has been made known by another member.

Hope that clarifies your questions.

Best of healing and exercise patience with the process of healing as well as be extremely careful of what you ingest !!!

WF

eatmeat4good Enthusiast
eatmeat4good
Posted

It can take a long time to heal if you don't restrict the iodine very seriously. I'm one year and 4 months gluten free. This is the first time I am free of DH lesions. I kept finding out iodine was in things I didn't know were high in iodine. Get plain uniodized salt. Don't eat salty processed foods as they may or may not have iodized salt on them. It was hard enough to give up gluten...I kept taking handfuls of salty chips or gluten free pretzels and wondered why I still had reactions. Wow. This is my first week without a single DH sore. No shellfish, no fish, no sea salt, no iodized salt, no eggs, no dairy, no asparagus, no canned goods, (they are canned with salt), nothing with carageenan in the ingredients because it is a seaweed which is full of iodine. Thyca.com is a good recommendation. Good luck and watch for gluten carefully. Even a trace will cause weeks of reactions for me. I had a hard time giving up dairy and eggs, but I had to do it. Now I can use butter but only unsalted and in small amounts.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

eatmeat4good ~~~~ CONGRATULATIONS!!!!!!!!!!! 1 year & 4 mos. is a looooong time but you DID it. How good does it feel not to have a single sore?

GOOD FOR YOU!biggrin.gif

crab Newbie
crab
Posted
  • Author

Hi crab,

CC is Cross Contamination, meaning a product can become contaminated with gluten due to wheat also being processed in the same facility. For example, oats contain no gluten yet can be contaminated going through the same machines as wheat, barley, and rye. As far as the dairy, cows udders as well as the milking machines are sterilized with iodine as has been made known by another member.

Hope that clarifies your questions.

Best of healing and exercise patience with the process of healing as well as be extremely careful of what you ingest !!!

WF

Yea, I have that stuff here also for beer sanatizing. I switched to brewing with sorgum on my last batch, but still used the idophor sanatizer. I will now be using the other stuff I have that is not Iodine based....the more you know.

  • 2 weeks later...
crab Newbie
crab
Posted
  • Author

Update, I have been 100% faithfull on the gluten-free diet but no help, so I am going on Dapnasone as of last night as I can't take it anymore. Hopefully it works fast and I can get off it in a month or two, interestingly my Derm discounted the link between DH and iodine stating that I would need to ingest large doses of Iodine for it to be any concern to him.

squirmingitch Veteran
squirmingitch
Posted

I beg to differ with your derm re: the iodine connection. Experience speaks louder than words.

I hope you do well on the Dapsone. Are you sure you haven't been getting cc'd somewhere?

Back to the iodine issue ~~~ I got accidentally cc'd & was making me crazy with the itchies ~~~ went back to low iodine & in 2-3 days had remarkable improvement. 5-6-7 days & not an itch in sight, lesions are healing.

squirmingitch Veteran
squirmingitch
Posted

Just to verify the iodine/dh connection:

Quote below from the Gluten Intolerance Group of No. America:

When my husband was diagnosed with dermatitis herpetiformis last November, he went to visit a expert in dermatitis herpetiformis, Dr. John J. Zone, at the University of Utah (USA). The written instructions Dr. Zone gave him included the following statement:

  • The mineral iodine is known to make the disease (dermatitis herpetiformis) worse. For this reason, foods and supplementshigh in iodine should be avoided. Table salt which is not iodized should be used. This can be found in most grocery stores with the other salts. Avoid kelp and other seaweed products, and do not use sea salt. If you take any nutritional supplements, examine them carefully to avoid any iodine containing ingredients.

It is not necessary for dermatitis herpetiformis patients to eliminate iodine completely from their diet, merely to avoid foods high in iodine as described above. Dr. Zone also explained that dermatitis herpetiformis patients need not avoid iodine indefinitely. Iodine is an important mineral for our bodies. dermatitis herpetiformis patients can stop avoiding iodine when their rash symptoms clear up which can take anywhere from a few months to a couple of years on a gluten-free diet.

Dermatitis Herpetiformis, John J. Zone MD, Curr Probl Dermatol, Jan/Feb 1991, p36

Then also see the 2 links below:

Open Original Shared Link

Open Original Shared Link Read the 4th paragraph.

  • 2 weeks later...
crab Newbie
crab
Posted
  • Author

Been on Dapsone now for 2 weeks and almost all cleared up, no side effects and my bloodwork is normal. NO ITCH!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,917
    • Most Online (within 30 mins)
      7,748
    tiffanygosci
    Newest Member
    tiffanygosci
    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

    • tiffanygosci
      Does anyone here also have Afib

      By tiffanygosci · Posted

      Hi! I had my first episode of AFib last May when I was 30 (I have had some heart stuff my whole life but nothing this extreme). I was not diagnosed with celiac until the beginning of this month in October of 2025. I was in the early stages of celiac, so I'm not sure if they were related (maybe!) All of my heart tests came back normal except for my electrolytes (potassium and magnesium) that were low when the AFib occurred. I also became pregnant with our third and last baby a couple weeks after I came back from that hospital stay. I had no heart complications after that whole thing. And I still haven't over a year later. It was definitely scary and I hope it doesn't happen again. I drink an electrolyte drink mix about every day, and I'm sure being on a gluten-free diet will help my body even more! I will pray for you in this. Taking care of our bodies is so challenging but Jesus is with us every step of the way. He cares and He sees you!
    • knitty kitty
      Help I’m cross contaminating myself,

      By knitty kitty · Posted

      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thank you, a little expensive but glad to have this source. 
×
×
  • 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.