dermatitis herpetiformis outbreaks while on strict gluten-free diet

[CDW]

I was diagnosed with dermatitis herpetiformis over 20 years ago at age 40 and then diagnosed with celiac disease. Both diagnosis were done with biopsies and lab work. Over the years I’ve had a few run ins with gluten when I wasn’t careful and within an hour of ingestion I would start feeling the burning and itching of a couple of dermatitis herpetiformis blisters. I would take 25mg of Dapsone and be fine within an hour or so and have no other issues. I never had enough exposure to cause any gastrointestinal problems. I am on a strict gluten free diet and when I eat anything packaged it’s certified gluten-free. The last several weeks I’ve been having outbreaks of dermatitis herpetiformis blisters without a change in my diet. No changes to medications or personal care products. I haven’t eaten at a restaurants and haven’t eaten anything different than in the past. I haven’t had any gastrointestinal issues only the dermatitis herpetiformis rash on elbows, arms, and knuckles. My prescription is for 25mg-100mg of Dapsone if needed. Since my dermatitis herpetiformis was controlled by a strict diet I have taken very little Dapsone in the last 15 years. With the current outbreaks I am taking up to 100mgs of Dapsone to get relief. I went to my dermatologist and he had no answers to my dermatitis herpetiformis outbreaks. He knows I’m very careful with my diet and just told me if I continued to take the Dapsone regularly I would need to start getting monthly lab work. I don’t have an increased iodine intake and I do take a daily multivitamin, vitamin B12, vitamin B6, and vitamin D daily. I have autoimmune thyroiditis treated with levothyroxine and recent thyroid lab tests were all normal. 
 

Is it possible I’ve become more sensitive to gluten and even certified gluten-free products have too many PPM? Or, is there some other reason the dermatitis herpetiformis rash has decided to pop up as I’ve turned 60?  Oral and topical steroids do not help the rash. I have clobetasol ointment at the highest strength for puritis nodularis (it’s under control) and it doesn’t help the dermatitis herpetiformis. I’ve tried antihistamines and every other anti itch, ant inflammatory OTC product to no avail. Dapsone is the only thing that stops the intense burning and itching but I don’t want to be on such a high dose and take it too often. I know the side effects. Has this happened to anyone else or does anyone have a suggestion? Thank you. 

[trents]

Perhaps something you are eating or some supplement or med you have been taking that was gluten free no longer is. Companies can and do change their product formulations. This has been my own experience. Perhaps, also you have developed a cross reaction to some food whose protein structure is similar to gluten such as dairy, oats or eggs.

Yes, it is the total amount of gluten ingested over a period of time, say 24 hr., that really counts, not how many ppm in a given food item. The FDA ppm standard for "gluten free" was designed to ensure that a person consuming a normal amount of calories in a 24 hr. period, say 2800 calories, and eating only foods designated as gluten free would not consume more than (I believe) 10mg of gluten, which was considered to be the triggering threshold for a reaction. Now, my numbers may not be exactly right but that is the concept. Of course, in more recent times there is considerable doubt as to whether the 20ppm is indeed strict enough and there is the suspicion that the choice of that number may have been driven as much by the limits of detection technology at the time as by it being an actual reaction threshold for most people. In reality, however, there are lots of celiacs who are way more sensitive than the 20ppm standard can safely encompass. 

[Scott Adams]

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful:

 

[CDW]

1 hour ago, trents said:

Perhaps something you are eating or some supplement or med you have been taking that was gluten free no longer is. Companies can and do change their product formulations. This has been my own experience. Perhaps, also you have developed a cross reaction to some food whose protein structure is similar to gluten such as dairy, oats or eggs.

Yes, it is the total amount of gluten ingested over a period of time, say 24 hr., that really counts, not how many ppm in a given food item. The FDA ppm standard for "gluten free" was designed to ensure that a person consuming a normal amount of calories in a 24 hr. period, say 2800 calories, and eating only foods designated as gluten free would not consume more than (I believe) 10mg of gluten, which was considered to be the triggering threshold for a reaction. Now, my numbers may not be exactly right but that is the concept. Of course, in more recent times there is considerable doubt as to whether the 20ppm is indeed strict enough and there is the suspicion that the choice of that number may have been driven as much by the limits of detection technology at the time as by it being an actual reaction threshold for most people. In reality, however, there are lots of celiacs who are way more sensitive than the 20ppm standard can safely encompass. 

I think you are probably correct about the PPM and I just shouldn’t eat prepackaged certified gluten-free items. Sticking to whole food like meat, fruits, vegetables. I will miss gluten-free pasta and bread but I can’t handle the dermatitis herpetiformis rash. Thanks for your input. 

[trents]

Maybe just cut back on the prepackaged stuff.

[knitty kitty]

@CDW,

You're in good company.  I have to avoid gluten free processed foods because Sulfites are used as whitening agents.  I've a hypersensitivity to Sulfites, which can develop in Celiac Disease.  Sulfites make my dermatitis herpetiformis flare up badly.

I've found some studies that you may find interesting and helpful.

Serological marker of dermatitis herpetiformis in hypothyroidism due to Hashimoto's thyroiditis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4673822/

Celiac Disease and Autoimmune Thyroid Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2111403/

The Role of Nutrition in Immune-Mediated, Inflammatory Skin Disease: A Narrative Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8840467/

Hypothyroidism Complicated by Vitamin C and Thiamin Deficiency in Surgical Patients

https://pubmed.ncbi.nlm.nih.gov/37278003/

Hope this helps!

[BoiseNic]

I've had this same issue. The conclusion my Dr. and I have come to is that I have become sensitive to other foods also. It is theorized that people with celiac disease and dermatitis herpetiformis have compromised microbiomes from prolonged antibiotic use and other factors. I am 46 and there are lots of other foods now that cause me to have reactions. The thing that seems to help the most is to eat mostly alkaline foods like vegetables. I am also a vegetarian who can't do any kind of dairy because of dermatitis herpetiformis. So you can imagine my diet is pretty limited. Keeps me lean and healthry though. I would look into this, especially since you have been taking the dapsone for so long.

[Richardo]

On 6/21/2024 at 4:36 PM, CDW said:

I was diagnosed with dermatitis herpetiformis over 20 years ago at age 40 and then diagnosed with celiac disease. Both diagnosis were done with biopsies and lab work. Over the years I’ve had a few run ins with gluten when I wasn’t careful and within an hour of ingestion I would start feeling the burning and itching of a couple of dermatitis herpetiformis blisters. I would take 25mg of Dapsone and be fine within an hour or so and have no other issues. I never had enough exposure to cause any gastrointestinal problems. I am on a strict gluten free diet and when I eat anything packaged it’s certified gluten-free. The last several weeks I’ve been having outbreaks of dermatitis herpetiformis blisters without a change in my diet. No changes to medications or personal care products. I haven’t eaten at a restaurants and haven’t eaten anything different than in the past. I haven’t had any gastrointestinal issues only the dermatitis herpetiformis rash on elbows, arms, and knuckles. My prescription is for 25mg-100mg of Dapsone if needed. Since my dermatitis herpetiformis was controlled by a strict diet I have taken very little Dapsone in the last 15 years. With the current outbreaks I am taking up to 100mgs of Dapsone to get relief. I went to my dermatologist and he had no answers to my dermatitis herpetiformis outbreaks. He knows I’m very careful with my diet and just told me if I continued to take the Dapsone regularly I would need to start getting monthly lab work. I don’t have an increased iodine intake and I do take a daily multivitamin, vitamin B12, vitamin B6, and vitamin D daily. I have autoimmune thyroiditis treated with levothyroxine and recent thyroid lab tests were all normal. 
 

Is it possible I’ve become more sensitive to gluten and even certified gluten-free products have too many PPM? Or, is there some other reason the dermatitis herpetiformis rash has decided to pop up as I’ve turned 60?  Oral and topical steroids do not help the rash. I have clobetasol ointment at the highest strength for puritis nodularis (it’s under control) and it doesn’t help the dermatitis herpetiformis. I’ve tried antihistamines and every other anti itch, ant inflammatory OTC product to no avail. Dapsone is the only thing that stops the intense burning and itching but I don’t want to be on such a high dose and take it too often. I know the side effects. Has this happened to anyone else or does anyone have a suggestion? Thank you. 

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!

[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.  

Edited February 3 by knitty kitty
Typo correction

[Scott Adams]

20 hours ago, knitty kitty said:

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.  

Oats can be problematic for some people with celiac disease due to cross-contamination or sensitivity to avenin.

Corn and rice are typically safe but should be checked for cross-contamination if processed in facilities that also handle gluten-containing grains.

[Richardo]

1 hour ago, Scott Adams said:

Oats can be problematic for some people with celiac disease due to cross-contamination or sensitivity to avenin.

Corn and rice are typically safe but should be checked for cross-contamination if processed in facilities that also handle gluten-containing grains.

I never eat oats, haven't for years because of the possible cross contamination. I know the difference in my.body's reaction to the big 3 vs corn or rice. Vomiting was always  an issue if I wasn't careful.with wheat, rye or barley but rhe only issue I had with corn was the dermatitis herpetiformis.  I'm not a dermatologist but I know how certain foods affect me and I just hope my story can offer others an alternative hope to try that isn't dangerous to their health.

As for me... I'm grain free LOL and loving the freedom from dermatitis herpetiformis.

[knitty kitty]

While not all Celiac react to Zein, the protein in corn, some Celiac do react to maize similarly as they react to gluten.  And I'm one of them.  

 

Maize Prolamins Could Induce a Gluten-Like Cellular Immune Response in Some Celiac Disease Patients

https://pmc.ncbi.nlm.nih.gov/articles/PMC3820067/

Edited February 5 by knitty kitty
Typo correction

[BoiseNic]

On 2/3/2025 at 12:37 PM, Richardo said:

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!

I have the same problem. No matter what I eat, I seem to get a break out every 1 to 2 months. I do not do oats, citrus fruits, apples, onions and other foods also, as those cause reactions. The only time I have zero problems is when I fast. The only staple grain I have is quinoa, as that doesn't seem to cause me issues. I have linked mine to a microbiome imbalance. I am currently on month 3 of Skinesa. It's supposed to take 3 months before seeing results. I guess we'll see.