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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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    • 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.
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