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  • Recent Activity

    1. - knitty kitty replied to CDW's topic in Dermatitis Herpetiformis
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      dermatitis herpetiformis outbreaks while on strict gluten-free diet

    2. - trents replied to AmandaA's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      New and Frustrated

    3. - Tracey Thomas replied to AmandaA's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      New and Frustrated

    4. - MomofGF replied to MomofGF's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Not sure if this is Celiac or just a gluten-free intolerance

    5. - Richardo replied to CDW's topic in Dermatitis Herpetiformis
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      dermatitis herpetiformis outbreaks while on strict gluten-free diet


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  • Posts

    • knitty kitty
      Hi, @Richardo,  Welcome to the forum!   Good suggestions, although we are aware here that oats, corn and rice can cause problems for some because their proteins have segments that resemble segments of the gluten protein.   What I find most helpful for my dermatitis herpetiformis flares is to increase Niacin Vitamin B 3 and Thiamine Vitamin B 1.  Niacin and Thiamine are needed to turn those carbohydrates into energy to fuel metabolic reactions that keep us healthy.  An influx of carbohydrates demands more of these vitamins.  Since malabsorption of Celiac can cause us to be low in the eight essential water soluble B vitamins, consuming a high carbohydrate diet can deplete thiamine and niacin stores rapidly. There's evidence that Niacin insufficiency plays a big part in dermatitis herpetiformis.   The flushing form of Niacin is known to dilate small blood vessels in the skin which allows the antibodies to be easily cleared from the blisters and induce healing.   Niacin intake should be kept under 500 mg a day otherwise it will lower bad cholesterol and raise good cholesterol, but this should only be done under doctor supervision.   Thiamine is nontoxic and safe Eve in high doses.  Every cell in the body needs thiamine to fuel the mitochondrial functions.  A high carbohydrate diet requires 500 - 1000 mg more for every 1000 calories from carbs.  
    • trents
      @Tracey Thomas, Is that the only celiac test that was run? From the magnitude of the reference range, that looks like it was the "total IGA" test to check for IGA deficiency. It is not checking for celiac disease per se. If you are IGA deficient, it can cause false negatives in the individual IGA celiac antibody tests. Were there any other celiac antibody tests run?
    • Tracey Thomas
      So yes I am aware that celiac is not an allergy. This is just the steps the doctors put me through. The Dermatologist results came back as a form of hives. A type I’ve never had so I didn’t think they were but test came back as a form of hives. So my celiac test iga was 229 the range was 70-400 so mine fell in normal range. 
    • MomofGF
      Where I live - Celiac is covered on our taxes and is considered a disability as well. So that’s one reason (not just for me because she is almost 18 but when she is out in the world and starts out, I would hate for her to be broke all the time and barely able to feed herself) but she also has many health issues that could be related to Celiac or maybe something else!! But that has to be taken off the table first. She has been so sick since she was 13/14 - dropping 20lbs because of this issue. Had her doctor thought about it then maybe we would have known but this was never tested. Her family doctor never told us what we needed to do aside from eat gluten. It wasn’t explained to us and maybe I should have came here first but I didn’t realize what it meant. Once I see the results online I will come back here with them. I took a pic of the req but it disappeared completely from my phone. I have a bad memory so I don’t remember what they tested for. thanks again for all advice. it is greatly appreciated  Nadia 😀👋    
    • Richardo
      Hi CDW. Some here may disagree with me on this site but, nothing ventured nothing gained. As long as my suggestion does no harm and is a possible help for your struggles I'll throw it out there. I have broached this in another forum.but I know this worked amazingly well for me as I too had return of dermatitis herpetiformis every 3 to 4 months for 4 years. with a month break then it would return. 1.I am 100% gluten free (I thought) 2.There is no problems with cross contamination with my diet. 3.My skin rash was confirmed as dermatitis herpetiformis by skin biopsy.  What I did last spring was go 100% grain free. No oats, corn or even rice. My rash was gone in 2 weeks and never came back intil I tested it 6 months later and ate rice 1 time and corn flour 1 time over a 3 day period. My rash started to come back. I quit again and it has been gone since. A huge relief for me. No more pain itching or unsightly rash ANYWHERE. A study was done in the UK showing that practically all grains contain some type of gluten but the rice corn and oats possibilities IS ALMOST NEVER mentioned in celiac related sites. Perhaps going grain free will help you, perhaps not, but I swear it did wonders for me and hopefully will help ypu too. Worth a try!
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