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I'm Not Sure

Kylie

By Kylie
in Dermatitis Herpetiformis

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Kylie Explorer
Kylie
Posted

I was diagnosed with Celiac 4 years ago and had a horrible time pre and post diagnosis. I had horrible GI symptoms, not any true DH symptoms per say. I have had sensitive skin my entire life; I can only put two things on my skin- petroleum jelly and hemps lotion made from Hemp. Other than that, I will break out in a horrible rash that just burns all over my body. I have changed all my soaps and clothes detergents to hypo-allergenic, stopped using scented dryer sheets, and all sorts of other things that are supposed to help. About 8 months ago I was diagnosed with tinea versicolor, which is a yeast infection on the skin. I have tried three different medications that have not worked. The infections started on my body (chest, arms, and upper thighs) and have now spread onto my face. I have huge, red, scaly blotches all over my body that eventually turn white. They are not responding to the tinea versicolor medication which makes me think it may not be tinea versicolor. To add to this, about 4 months ago I went to a dermatologist because my skins and feet had started to scale and rash. I now have a prescription lotion to try and help with the scaling, but I still look like a lizard. Do any of you think that this could be DH? Also, should I go to a GI or a dermatologist to really find out what this is and try and get it treated. The rashes hurt and are causing horrible scars on my body, and I am really worried about the ones on my face. If you have any suggestions, I would really appreciate it!

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ravenwoodglass Mentor
ravenwoodglass
Posted
I was diagnosed with Celiac 4 years ago and had a horrible time pre and post diagnosis. I had horrible GI symptoms, not any true DH symptoms per say. I have had sensitive skin my entire life; I can only put two things on my skin- petroleum jelly and hemps lotion made from Hemp. Other than that, I will break out in a horrible rash that just burns all over my body. I have changed all my soaps and clothes detergents to hypo-allergenic, stopped using scented dryer sheets, and all sorts of other things that are supposed to help. About 8 months ago I was diagnosed with tinea versicolor, which is a yeast infection on the skin. I have tried three different medications that have not worked. The infections started on my body (chest, arms, and upper thighs) and have now spread onto my face. I have huge, red, scaly blotches all over my body that eventually turn white. They are not responding to the tinea versicolor medication which makes me think it may not be tinea versicolor. To add to this, about 4 months ago I went to a dermatologist because my skins and feet had started to scale and rash. I now have a prescription lotion to try and help with the scaling, but I still look like a lizard. Do any of you think that this could be DH? Also, should I go to a GI or a dermatologist to really find out what this is and try and get it treated. The rashes hurt and are causing horrible scars on my body, and I am really worried about the ones on my face. If you have any suggestions, I would really appreciate it!

You should go back to the dermatologist. They can do a skin biopsy to the area next to the lesions and look for the antibodies. If they biopsy the lesion they are doing it wrong. It doesn't sound like DH to me but that doesn't mean it isn't gluten related as gluten can cause a number of skin issues. DH creates tiny blisters that can spead into clusters. Also DH has distinctive purpleish scars that last a really long time. Here is a link to the NIH site on DH.

Open Original Shared Link

I hope you get some relief soon.

ang1e0251 Contributor
ang1e0251
Posted

Don't know if this will help, my assistant's grandson has suffered with a variety of rashes over his body all of his young life. They've had him everywhere including Riley's Childrens Hospital and no relief. Recently they took his little brother off all red dye for behaviour issues and found out this child's skin cleared up also. No red dye any more!! Don't know if that affects adults too.

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      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.
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    • rei.b
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      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 😅
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      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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      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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