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Dh Positive 1 Month Now

crab

By crab
in Dermatitis Herpetiformis

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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.

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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.

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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!

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    • Rogol72
      Help I’m cross contaminating myself,

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      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
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      Help I’m cross contaminating myself,

      By klmgarland · Posted

      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
      Help I’m cross contaminating myself,

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      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:  
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