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Is It Dh?


Darwin

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Darwin Rookie

First, a little bit of backstory. I am a self-diagnosed gluten intolerant. My nurse practitioner did not see the point in testing for Celiac if I was planning on doing a gluten challenge anyway, so when I did it, it was obvious that the gluten was causing a problem. I have been off of gluten for a little over a year, with some oopsies along the way. I have accidentally been eating tiny bits of gluten for a while, but discovered the source last week. I had been having very mild digestive problems and when I accidentally glutened myself a few weeks ago, I did not have the usual large reaction that I usually have, but I had a lot of abdominal pains that came and went. Anyway, it ended up being my cereal. I eat generic rice chex and the company must have changed suppliers....it took a while to figure it out. I thought it was stress as I felt great after going home for the holidays, but I have found that I felt better because I was not eating the cereal. Since I have discovered that, my digestive system has slowly gotten better, but my face, neck and body are still a little puffy due to inflammation.

Anyway, last week, I got a red mark on my wrist that looked like a red-colored bruise. Since then, it has started to get tiny bumps like a rash, has continued to be red, and at times, it has looked kind of like really dry skin. Today it has started ITCHING, though I put a little bit of hydrocortizone on it and it feels a bit better. I have never gotten any blisters and the tiny bumps are not white, they are red, no drainage or anything. Both areas are close to each other and about the size of a black bean. It does not look like the normal red, dry patches I get and since it has been around for a few days, it is definitely not contact dermatitis. Any ideas? Is it DH?


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eatmeat4good Enthusiast

DH can look a lot of different ways. The significant thing is what you wrote ITCHING! Like maddeningly so. Some people have flesh colored blisters, some have teensy eensy pinpoint dot blisters, some have red blisters...the common thing is that it is activated by gluten. And they itch painfully and tend to be worse at night. The little bumps can come first, or you can have a burning itching sensation on the skin before any rash at all appears. I would not have described mine as blisters either. They were just sores with tiny dots inside. Later I learned that those blisters can be so fragile as to break almost as immediately as they form. If it is DH and a mild reaction, it may not weep. Some reactions don't. However, it it is DH and you keep eating gluten it WILL eventually weep. It sounds like it could be DH, but you won't know until you totally eliminate gluten...and you should know that iodine also causes the antibodies to stay active. You could ask for a biopsy of it, but many with DH test negative. I would consider myself a Celiac if I were you. That is...IF your rash responds to gluten free and low iodine.

My Dr. finally gave me the Celiac diagnosis after going and showing my rash many times and reporting that it did better on gluten-free diet. Eventually I had the rash in the classic places like elbows, hairline, lower back...but normally my rash was on my face. Be aware that DH can occur anywhere...and the fact that it is on your wrist may not be a common site for DH, but that doesn't mean it isn't DH.

The intense itching and pain associated with the rash are very telling. It is like no other beast on earth.

itchy Rookie

From your description it sounds like it could be DH, but hard to say for certain. Your description is not the classic description of DH, but there are many variations.

My DH occurred primarily on my arms, from my wrists to my shoulders, but especially on my elbows.

Darwin Rookie

Well, it is starting to go away......and so is my bodily inflammation. I am starting to be able to see my collar bone and my clothes are starting to fit a little better......I am assuming it actually is Celiac as opposed to just an intolerance (though I personally think that since the symptoms are very similar between the two and because Celiac can be so difficult to diagnose, someone will eventually figure out that it is all the same thing). We think my grandmother had it and I am going to assume that my brother has it. My mom claims that bread makes her bloat and that she felt better on the atkins diet, so I am assuming that there is some intolerance going on there. Thanks for the advice!!!

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    • knitty kitty
      @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
      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
      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
      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
      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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