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DH - How Long To Go Away?

lub2bmom

By lub2bmom
in Dermatitis Herpetiformis

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lub2bmom Apprentice
lub2bmom
Posted

Good Morning,

I have had chornic hives for 6 years now -- after tons of testing for everything under the sun -- A friend suggested that it looks just like HD celiac... and she's right-- exactly like it -- and i have it on my arms, legs, itchy scalp, and face. I have been gluten free for about 3 weeks now and it's only left on my right arm --any one else have the HD version -- how long did it take to fully go into remission? I am so thankful for website like this-- i've found TONS of info on here! Thanks!

Diane

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gluten free overseas Apprentice
gluten free overseas
Posted

Corn (esp high fructose corn syrup) gives me DH as well as gluten. You might want to consider eliminating corn for a while (and it's hard because it's in so much!!). Also, avoid iodine--for some reason, if you eat foods with iodine, DH will not go away. Get a salt that does not have iodine, don't eat salmon for a while etc. I hope you feel better soon!

lub2bmom Apprentice
lub2bmom
Posted
  • Author

That is really good to know! I learn new things on here every day!! My mom actually has a corn allergy ... so i could see myself having that as well! thanks for the tip!!

Hungrylady Rookie
Hungrylady
Posted

I can still see mine if I look in a 10x mirror but it's gone with the naked eye! I have been gluten-free (with the exception of getting glutened more often than I should) about 2.5 months. I am thrilled since it was smack dab on the middle of my face. The peeling is what took forever, especially on the hair line :(

Flasaltwater Apprentice
Flasaltwater
Posted

I can still see mine if I look in a 10x mirror but it's gone with the naked eye! I have been gluten-free (with the exception of getting glutened more often than I should) about 2.5 months. I am thrilled since it was smack dab on the middle of my face. The peeling is what took forever, especially on the hair line :(

When you say peeling is it like when a sunburn peels or is it like a dried up flaky what was once a scab. Just looknig for clerification becasue mine does not peel like a sunburn.

pricklypear1971 Community Regular
pricklypear1971
Posted

When you say peeling is it like when a sunburn peels or is it like a dried up flaky what was once a scab. Just looknig for clerification becasue mine does not peel like a sunburn.

Mine does both.

Hungrylady Rookie
Hungrylady
Posted

ughhh.....it makes me crazy. When I first get glutened it turns bright and I mean bright red (I look like I have a red mustache and beard, lol). Then it get raised and itches and stays like that for about oh it varies but I'd say about a week then it begins to peel. Dry flakes that keep peeling like a sunburn but no matter what you do, it keeps right on peeling-ironically exfoliating doesn't help at all. This goes on for about a dang month. Then it goes away (away to the naked eye). This same thing happens on my hair line but I swear from a different reaction (I also can't have eggs, nuts, milk, shellfish (although this one is confusing me right now).

Go figure. That's how I found out I have celiacs...the dermatologists!!!!!!!!

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Flasaltwater Apprentice
Flasaltwater
Posted

ughhh.....it makes me crazy. When I first get glutened it turns bright and I mean bright red (I look like I have a red mustache and beard, lol). Then it get raised and itches and stays like that for about oh it varies but I'd say about a week then it begins to peel. Dry flakes that keep peeling like a sunburn but no matter what you do, it keeps right on peeling-ironically exfoliating doesn't help at all. This goes on for about a dang month. Then it goes away (away to the naked eye). This same thing happens on my hair line but I swear from a different reaction (I also can't have eggs, nuts, milk, shellfish (although this one is confusing me right now).

Go figure. That's how I found out I have celiacs...the dermatologists!!!!!!!!

Oh my goodness no I don't think I have anything like that. Maybe I don't have the DH that everyone talks about, this sounds different. I get actual blisters under my skin that end up breaking and scabbing over and hurt and itch really bad. No rash like your describing. I guess Ill find out Monday when I go to the Derm.

ravenwoodglass Mentor
ravenwoodglass
Posted

Oh my goodness no I don't think I have anything like that. Maybe I don't have the DH that everyone talks about, this sounds different. I get actual blisters under my skin that end up breaking and scabbing over and hurt and itch really bad. No rash like your describing. I guess Ill find out Monday when I go to the Derm.

Your description sounds very much like DH. If you are getting a skin biopsy make sure the derm is familiar with how to do the biopsy. They need to biopsy intact skin next to an active lesion and they also need to tell the lab that they are looking for DH.

Hungrylady Rookie
Hungrylady
Posted

Oh it sounds painful :( I hope you get some much needed answers. I really know nothing about DH only as it relates to my own situation. I will say it is one of the symptoms I didn't educate myself on. I am so busy with the ones that really hurt, like my hands. Which is why I like this section, I'm learning.

I wish you all the best, look forward to hearing how it goes...

pricklypear1971 Community Regular
pricklypear1971
Posted

DH can look very different person to person. The same person can have two types of lesions, and they can change over time.

I have tiny pinpricks, and if I get into something nasty - big swollen bumps filled with fluid.

Don't diagnose it based on look. Diagnose it based on how it acts, biopsy, and if it recedes with iodine and gluten withdrawal.

eatmeat4good Enthusiast
eatmeat4good
Posted

One year gluten free and DH sores still healing. The last 4 leasions are very minimal. I kept interfering with the healing by eating salty foods like chips and iodine containing foods like eggs and dairy...causing them to welt and the healing process had to start all over again. So much better at healing without those Gluten AND Iodine. Trace gluten is awful and will cause a huge reaction. I wanted to be one of those who healed in a matter of weeks, but alas, I was not that lucky. or perhaps it was me and I was not vigilant enough. However, it appears I will be free of all lesions in a couple of weeks which will actually be my one year anniversary of being gluten free. DH is really miserable, but I've gotten better about avoiding what causes me to react. If only I would stop testing dairy, and grabbing a handful of chips...Jeez!!

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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
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      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.
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      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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