Dermatitis Herpetiformis Help Please

[Caroline S]

I’m new to this forum. Hello… I have been dealing with extremely itchy skin rash bumps since March 2024. Skin biopsy indicated Dermatitis Herpetiformis, linked to Celiac.  I have been gluten-free for 8 years because of sluggishness from gluten , but doubled down on cross-contamination. House is gluten-free. Hoping to get advice on my diet snd skin/hair/oral hygiene to see if I’m missing something. A typical day is as follows: coffee with CGF oat milk, Vans blueberry waffle (CGF), fresh fruit, IQ Almond butter protein bar (CGF), leafy green salad w/veges and turkey or chicken breast or tuna on Udi’s bread, raisins, steamed veges, chicken or fish, jasmine rice(CGF), or baked potato ,avocado, juice or jelly beans to treat insulin reactions (I’m also T1D 35 years) chewing gum. I’m looking for diet advice (with specific brand suggestions)regarding eliminating risk of gluten exposure. 

I’ve been using Dr. Bronners peppermint soap for decades, but looking for other maybe safer(?) suggestions for skincare, oral hygiene, hair care. 
 

looking to connect with anyone with Dermatitis Herpetiformis. I’m pretty miserable with all the itchiness and my skin looks and feels awful.

Thank you!

 

[trents]

Many or most chewing gums have gluten in them. Also, check the jelly beans. The tuna is high in iodine. Iodine exacerbates dermatitis herpetiformis. 

[Bev in Milw]

IgA deposits under the skin are responsible for dermatitis herpetiformis.  Trace exposure to gluten triggers outbreaks & perpetuates deposites.  Iodine only causes reaction in existing ones.  
   If you’re gluten-free long enough, body may break down deposits. Gluten is topical products/ shampoos -VitE from wheat germ, hydrolyzed wheat protein,, etc, can cause reactions. 

Avoiding iodine is probably trickier since it needed for thyroid function.  Iodized salt is major source, started in pre-50’s to prevent goiters in areas where soil lacked adequate iodine. 
   Anything from ocean has iodine as well. Sea salt, seafood  & fish from ocean are  obvious sources.  Seaweed (nori, kelp, etc) also falls into that category but are tricker when  processed into emulsifiers, agar, ‘whatever’-alginates, & carrageenan.  Those end up in dairy products like ice cream, cream cheese, dips, also dry mixes.   In FDA-labeled products, it  usually  listed in ‘Contains less than 2% of…“ which is still 20,000 ppm.  
    As far as gluten, when discuion on oats stated 20-ish years ago, I did an informal poll of our group members and found that major of those who had problems with oats had Type 0 blood.  Maybe a cross reaction to something  that seem similar to gluten.  
  In book, Eat Right for your Type (P D’Adamo)), oats are  on’ Avoid list’ only for Type O’s. As an I myself, I’ve sampled a few gluten-free oats. While probably not enough to cause major problem, something subtle was just off for me. Decided it wasn’t worth cost since it gave me NO additional joy…

   

[Caroline S]

Thanks. I use “real salt” from salt mines (not iodized) but good to know about fish. That’s so sad because I eat fish at least once per week (usually wild salmon or cod) 

I have eliminated all dairy for past 2 weeks. Trying to find a dermatologist who specializes in autoimmune skin issues like this. 

my follow up skin biopsy to test for Iga immunoglobulins was oddly negative even though punch tests were from 2 pustulates in same area as the 2 that tested positive for Dermatitis Herpetiformis! So it’s frustratingly I conclusive. I may ask for repeat skin biopsy to look for IgA

my blood type is B+ so hopefully CGF oats are ok. 
 

I read on this forum that Udis brand and glutinous brand may actually have cross contamination? Is this anecdotal?

I'm aware of the need for gluten-free skin/hair care products which is why I asked for recommendations. 

I’m looking for recommendations of specific brands of rice, bread, protein bars, skincare, hair care, toothpaste
 

 

[Caroline S]

Typos: “frustratingly Inconclusive”

and “Udis snd Glutino brands”

 

[Scott Adams]

Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure.

This article may also be helpful:

 

 

[trents]

My understanding is that the biopsies should not be take from the pustules themselves but from the skin adjacent to them. It can be difficult to find a dermatologist who knows how to biopsy for dermatitis herpetiformis correctly. 

Do you have any GI involvement in your celiac disease? Have you had blood antibody testing done or small bowel biopsy performed?

[Caroline S]

Thanks Scott. I did not realize it was a specific protein in oats; I thought it was the risk of x-contamination in processing. Sigh. Do you know if coconut milk/cream has and gluten threat? I’ve been using oat milk in my coffee and occasional certified gluten-free oatmeal. But I will try cutting out oats. 

Thanks for the article, I will take a look. 
 

Do you feel CGF rice is safe? If so is there a specific brand? 
 

Also looking for a brand of CGF bread. 
 

 

[Caroline S]

Thanks Trent. 
I am currently looking for a new dermatologist with experience around this at a larger medical campus in a nearby city. (I’m in MA) I’m waiting for a call. My understanding is the med to help dermatitis herpetiformis requires a genetic test as well. My Derma sent me to my GI. My GI sent me to allergist and allergist is sending me back to Derma who is not willing to treat me. It’s quite frustrating. I can’t believe he did the biopsy incorrectly. Sigh. 
 I’m off antihistamines because I’m having skin testing next week to check for other food allergies. so I’m relying on a topical steroid cream for itch and rash which only helps about 50% (triamcinolone)

I do not have GI involvement in my Celiac. My blood does not show celiac because I took myself off gluten about 8 years ago because 1/2 my friends with T1D have celiac and I was getting fatigue from gluten. I do test positive for the genetic celiac blood test. I have not been biopsied internally because neither they (nor I) want to put me on gluten to set up for a positive biopsy. All signs point to Celiac. 
 

any advice on bread and rice brands or products is appreciated . Baked potato gets old after a while! 

[Caroline S]

* my last upper and lower GI looked good. I also take 20 mg omeprazole daily. 

[trents]

7 minutes ago, Caroline S said:

* my last upper and lower GI looked good. I also take 20 mg omeprazole daily. 

Have you given thought to the health risks associated with long term PPI therapy? They raise stomach PH and inhibit digestion of nutrients and also put you at increased risk for GI infections. I was on a PPI for years but managed to wean myself off it over about a year and now, after some other dietary and lifestyle changes, hardly have any problem with GERD. PPI's are among the most misused/abused medications in the pharmaceutical world. They were meant for short-term use but docs put people on them and never do follow-up.

[Caroline S]

Yes I have. I tried an alkaline diet for a year after suffering GERD pain and being dx with Barrets Esophogus. But it did not help and my endoscopy showed dried blood . People with T1D have higher acidity in general. I’ve felt so much better and my overall digestion has  improved with PPI use in the last year. It’s often on my mind though (daily PPI use), but right now I’m just trying to navigate gluten and Dermatitis Herpetiformis because it is really making my quality of life difficult . It feels like chronic poison ivy. Thanks for the concern though. I’m managing multiple chronic illnesses (including T1D for 35 years on insulin life support for 20 years, restrictive airway disease, chronic migraine with visual sensitivity for the last 4 years. I’ve always lived healthfully, never smoked, never drank, eaten with nutrients and health in mind, etc. I’ve inherited some unfortunate genes! I’m swamped!

[Margaret O'Connor]

Caroline, I have found for myself the iodine in fish triggers dermatitis herpetiformis. As well eating food which has been cross 

contaminated, brings out resumption of dermatitis herpetiformis again.

[Scott Adams]

2 hours ago, Caroline S said:

Thanks Scott. I did not realize it was a specific protein in oats; I thought it was the risk of x-contamination in processing. Sigh. Do you know if coconut milk/cream has and gluten threat? I’ve been using oat milk in my coffee and occasional certified gluten-free oatmeal. But I will try cutting out oats. 

Thanks for the article, I will take a look. 
 

Do you feel CGF rice is safe? If so is there a specific brand? 
 

Also looking for a brand of CGF bread. 
 

 

Coconut milk is unlikely to contain gluten, especially brands from Thailand and Vietnam, as they don't grow any wheat there and use very little of it in their foods. I'm not sure if you are referring to a specific brand here, but in general coconut products have a very low risk of contamination. Most rice is safe, whether certified or not, and I don't have a specific brand to recommend, but I use California rice as it's lower in arsenic compared to rice grown in other areas, for example Texas.

[BoiseNic]

Somebody mentioned oats previously. I have celiac disease and dermatitis herpetiformis. Oats mess me up just as bad as anything else, even the "gluten free" ones. I would stay away from iodized salt also, as someone mentioned. People with celiac disease and dermatitis herpetiformis have tend to have lots of other triggers or intolerances besides gluten. Citric or watery fruits trigger mine. Also, if I drink any fluids within a couple hours before or after I eat, that seems to cause a reaction. This may have something to do with leaky gut or motility issues. I've also noticed candida overgrowth that I am starting to address. The one absolute cure-all for me besides high doses of Dapsone is fasting. I would do a prolonged fast and then slowly introduce vegetables and protein sources. Apples absolutely terrorize me also for some reason. Most fruits are triggers for me actually. I seem to do alright with blueberries though. There are supplements that help also like 3 grams of MSM a day, but you will have a breakout phase. High dose B5 helps, but also has a breakout phase. I've been dealing with this as far as I can remember. I am now 46. If my diet is in check, I only have to take 50mg of Dapsone a day.

[BoiseNic]

I'd stay away from coffee also.

[BoiseNic]

Oh sorry, fasting might me tricky with T1D. I would read up on it. There are some sources that claim fasting help diabetes also. 

[trents]

@BoiseNic, if most fruits give you problems, I would think you might be fructose intolerant. 

[BoiseNic]

Maybe, but I have been diagnosed with celiac disease and dermatitis herpetiformis. I think the constant use of antibiotics has messed up my microbiome and made intolerant to a lot of foods. Cannot do dairy either. This is not uncommon for people with celiac disease. 

[patty-maguire]

I have celiac disease and suffered with dermatitis herpetiformis for years.  The itchy rash is one of the first symptoms if I accidentally consume gluten.  I'm a big fan of Dr. Alessio Fasano, he is the Director the the Celiac Disease Research and Treatment Center at Massachusetts General Hospital and wrote a great book called Gluten Freedom.  His recommendation for anyone with residual symptoms is to avoid gluten free processed foods and stick to a whole food Mediterranean style diet.  I find this works best for me too.  It's hard to avoid processed foods completely but maybe consider doing it for a month or so to see it things clear up, then add some of your favorites back in one at a time and see what happens.  It might help you pinpoint the culprit.

All the best.

[Beverage]

I cannot eat oats, gluten free or even certified gluten free, unless they are Purity Protocol.  

https://www.glutenfreewatchdog.org/news/oats-produced-under-a-gluten-free-purity-protocol-listing-of-suppliers-and-manufacturers/

Try cutting out the oat milk and anything else that contains oats for awhile and see how you do.