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Dermititis herpetiformis

Linny H

By Linny H
in Dermatitis Herpetiformis

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Linny H Rookie
Linny H
Posted

Have been on a Gluten free diet since my diagnosis in June 2021. Was diagnosed with DH last fall and started taking dapsone. This medication is affecting my red blood cells and I am experiencing fatigue and minor dizziness from time to time. I plan to discuss stopping the dapsone with my dermatologist at the end of the month. Anyone else taking dapsone? How long? Side effects? Why isn't my diet preventing this condition?

Thanks for any advice!

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Rogol72 Community Regular
Rogol72
Posted
13 hours ago, Linny H said:

Have been on a Gluten free diet since my diagnosis in June 2021. Was diagnosed with DH last fall and started taking dapsone. This medication is affecting my red blood cells and I am experiencing fatigue and minor dizziness from time to time. I plan to discuss stopping the dapsone with my dermatologist at the end of the month. Anyone else taking dapsone? How long? Side effects? Why isn't my diet preventing this condition?

Thanks for any advice!

Are you eating oats and dairy? If so, cutting them out should help. I found that eating a mostly AIP diet is the only thing that works keeping my DH in check. Coeliacs with DH are a lot more sensitive to trace amounts of gluten. Dapsone is a broad spectrum antibiotic, so taking a probiotic to counter the antibiotic side effects should help.

I use Dapsone sparingly as needed. It artificially lowers HA1C. I make sure that I get all the vitamins and minerals needed for healthy red blood cell production, B Vitamins, B12, Folate, Iron etc.. Is your medical team monitoring your Reticulocyte count? It might be worth getting a full iron study to see what it happening with your red blood cells.

Nick Cheruka Contributor
Nick Cheruka
Posted
19 hours ago, Linny H said:

Have been on a Gluten free diet since my diagnosis in June 2021. Was diagnosed with DH last fall and started taking dapsone. This medication is affecting my red blood cells and I am experiencing fatigue and minor dizziness from time to time. I plan to discuss stopping the dapsone with my dermatologist at the end of the month. Anyone else taking dapsone? How long? Side effects? Why isn't my diet preventing this condition?

Thanks for any advice!

Are you sure your not ingesting gluten in some way you may not be aware of? Did you get diagnosed with Celiacs per intestinal biopsy? DH is the skin form of Celiacs so maybe your ingesting hidden gluten! Good Luck! I have the flare ups periodically with DH and Celiacs even on a strict gluten-free diet for over 20yrs! It’s unfortunately hidden in many ingredients, which can make it challenging to stay gluten free 24/7! Your not alone in the life of a Celiac! Stay Strong!😎

Linny H Rookie
Linny H
Posted
  • Author

Thanks so much for your reply. I was diagnosed via endoscopy. Definitely could be getting some hidden gluten as I'm still working thru careful label reading. Dapsone scares me. I don't like what it's doing to my blood work. 

Linny H Rookie
Linny H
Posted
  • Author
11 hours ago, Rogol72 said:

Are you eating oats and dairy? If so, cutting them out should help. I found that eating a mostly AIP diet is the only thing that works keeping my DH in check. Coeliacs with DH are a lot more sensitive to trace amounts of gluten. Dapsone is a broad spectrum antibiotic, so taking a probiotic to counter the antibiotic side effects should help.

I use Dapsone sparingly as needed. It artificially lowers HA1C. I make sure that I get all the vitamins and minerals needed for healthy red blood cell production, B Vitamins, B12, Folate, Iron etc.. Is your medical team monitoring your Reticulocyte count? It might be worth getting a full iron study to see what it happening with your red blood cells.

Thanks for the response. Lots of great info. I stopped oats about a year ago. I didn't notice a problem with dairy but I will look into the auto immune diet you referenced.

KyleL Newbie
KyleL
Posted
On 8/1/2023 at 4:44 PM, Linny H said:

Have been on a Gluten free diet since my diagnosis in June 2021. Was diagnosed with DH last fall and started taking dapsone. This medication is affecting my red blood cells and I am experiencing fatigue and minor dizziness from time to time. I plan to discuss stopping the dapsone with my dermatologist at the end of the month. Anyone else taking dapsone? How long? Side effects? Why isn't my diet preventing this condition?

Thanks for any advice!

Good morning, I also was diagnosed with DH. I have been on Dapsone for two years. My RBC, Hemoglobin and Hematocrit have been low for some time now. My Doctors don’t seem to concerned about it. I have tried to get off the Dapsone but when I do, I have a bad flare up. I am also on a strict gluten-free diet.

knitty kitty Grand Master
knitty kitty
Posted

Dermatitis Herpetiformis outbreaks can be triggered by iodine. High levels of Iodine are found in dairy products and shellfish and iodized table salt.

I've cut out dairy, avoid shellfish and switched to Pink Himalayan salt, and my DH flares cleared up. 

Niacin (flushing form of Vitamin B3) or Niacinamide (nonflushing form of B3) helps tremendously in clearing DH skin bumps.  

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Rogol72 Community Regular
Rogol72
Posted

Excess iodine from eggs has been reported to flare DH also. Here's a case report ... https://www.sciencedirect.com/science/article/pii/S2352512622004350

@KyleL, Have you noticed any other side effects of taking Dapsone (beyond it's effect on RBCs)? I'm curious since there's so few people on it here.

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    • CC90
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      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
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      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
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      By cristiana · Posted

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    • trents
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