Any Hope of Resolving DH Symptoms?

[dwaage1]

5 years since diagnosed with dermatitis herpetiformis, and have been on Dapsone and various topical ointments without my improvement in the blistering and itching at major joints and my butt. Have been careful about avoiding gluten in all food items. Has anyone had a similar situation where you have found relief. There is so much on the internet that is personal suggestions, but most do not have consensus of those with this miserable condition. Concerned also that the Dapsone is causing problems with my blood, thyroid and related organs. Help.

[Hidden]

Hi there,

Firstly I'd see your Dr about this and make sure that you have full blood tests.

Here's a link to what the NHS say about DH a gluten free diet and Dapsone:

nhsinform.scot/illnesses-an...

As you've been suffering for so long I'd see a nutritionist and go on an elimination diet and find what foods help your skin and those that exacerbate your DH.

Here's a link about foods that affect dermatitis beneficially and triggers:

medicalnewstoday.com/articl...

I'd also try and eat a healthy diet as possible avoiding processed foods sugary foods artificial sugars and it might be worth double checking that you're not letting small amounts of gluten into your diet.

And good luck.

[Hil101]

Hello,

Sorry to hear you have had this for so long. I developed it after going on a gf diet and it itched madly, plus it marked my skin long after it had healed. I refused Dapsone due to the potential side effects. The consultant gave me fucibet cream initially, used twice daily, to counter a suspected bacterial infection and Dermol (sold over the counter) for washing. I also have mometasone furoate ointment (which says in place better than cream). This is a medium strength corticosteroid. This regime gradually got the condition under control. Eggs made me ill for years after starting the gf diet, I actually wonder if they contain gluten residues from the grain the chickens eat.

I hope you get better soon

[Hil101]

In my reply, I forgot to mention other problematic foods:

Oats (just like gluten in my body's response)

Millet (ditto)

Quinoa also a question mark.

Sorghum

I have read that the proteins in these grains are quite close in structure and often cause a reaction in sensitive coeliacs.

Also 'low gluten' products such as those containing caramel colouring E150 which is often made from wheat in Europe.

Buckwheat is king! I make sourdough and pancakes with it

[Ell17]

I suffer from DH.... and have for many years (also, Celiac all my life). In my experience it never completely goes away. There are always flares of varying intensity. It's part and parcel of being extremely sensitive to trace amounts of gluten, as those with DH are. Because it is such a common ingredient derivative in so many different types of products, it is difficult to avoid entirely. Just breathing in particles of gluten (i.e., something cooking or perfumes/air fresheners many of which have gluten in the fragrance base) sets mine off. It's much more involved than just avoiding gluten in your diet. Gluten and other chemicals in cleaning, personal and skincare products can trigger or aggravate it, as well. I have very grudgingly come to accept that it is very difficult to avoid accidental exposures or cross reactions completely, no matter how diligent you are. It can be quite upsetting, to say the least. And of course, gluten free packaged products contain gluten, though it's in low enough amounts that most Celiac's (so they say) don't react. But, those of us who suffer DH and have highly reactive systems (affected by both internal and external manifestations) regularly do.

Noticeable, internal symptoms don't last as long as the skin symptoms do, at least for me. Up to a couple of weeks generally, barring another exposure, for the internal ones to fade (though the immune system is still activated). But, on average it takes three months for the itching, scaling, burning rash to calm down and subside (if you can manage to avoid another exposure). [One exposure to gluten excites the immune system for three months -- (pubmed) -- (which for me, I find to be true). Just four accidental micro exposures could potentially affect your skin for an entire year. (For some reason the skin is more violently attacked, and for a longer period of time, in those with the tendency towards developing DH or that already have it.)

If you can afford it, you are better off to eat only fresh, unpackaged foods when possible. You may possibly need to avoid most grains, oats too, and dairy, as well. (I do okay with small amounts of corn and sorghum, but I have to avoid all dairy, even ghee and GF oats. My system recognizes them as gluten and it triggers the DH.) Some people even have problems with coffee as a trigger. As was previously stated, there are many foods that have a protein structure similar to gluten. As for having to rely on gluten free canned/packaged foods, the tricky part is knowing how much of the gluten free packaged foods you can tolerate on a daily basis, before tipping the scale (i.e., your personal tolerance level). I swear it's enough to cause PTSD. It's like Russian Roulette every time you put a fork to your mouth.

DH can wear you down as all chronic conditions tend to do (and many of us have multiples)....it being a very visible condition, doesn't help. The stress is real. Also, I personally feel that processing standards for gluten free and food allergies in general are getting worse, not better, in the US at least. When our lives and health depend on food that has a convoluted journey before it reaches us, we have a valid reason for concern. There are still far too many unknowns that can and do have a negative impact on us.

Dapsone, et al., don't really do very much, in my opinion. Honestly, I feel Dapsone is just too dangerous for the little benefit it offers. I have better luck using 2% salicylic acid cream (anti-inflammatory/keratolytic) mixed with aloe vera gel. I mix in 1% Hydrocortisone cream when really inflamed. Benadryl can help (pill or cream) with itching and calming your system. Olive, jojoba or fractionated coconut oil mixed with the aloe gel is good as a moisturizer. I also find that using more natural personal care products that are gluten and fragrance free with fewer, cleaner ingredients is easier on my skin. Overall, I have fewer reactions. I also switched to natural cleaning products and essential oils for fragrance in homemade air freshener and personal care products.

Nutrient levels, liver, gut health, thyroid and adrenal health also affect skin. I take the following supplements:

[Plant based probiotics**Methylated B Complex daily (Thorne is a good brand)**Selenium Methionine 200 mcg daily (thyroid/autoimmunity in general)**Zinc (50 mg daily)**Vit C (1000-2000 mg daily)**D3/K2 spray or drops**Natural Vit E (mixed tocopherols) 400-800 IUs daily**Milk Thistle 1000-2000 mg daily (liver health) -- Make sure supplements are gluten free.]

It's a misery and a depressing condition to deal with, as if Celiac's alone isn't enough:/

For the sake of my own sanity, I have come to a point where I realize I can only do my best. It will either be enough or it won't....I'm learning that a little self kindness really can go a long way....Live and learn.

**You are also going to need to be your own detective to figure out the potential source(s) of continuing exposure or other foods you are reacting to. Keeping notes helps.**

Best of luck.😊

[dwaage1 in reply to Ell17]

Thank you so much for the detailed response. I will try the remedies that you suggested.

[tmoxon]

Hi Dwaage1

I came on this forum when i was diagnosed wanting answers as not only did I still not feel very well after going gluten free and also still had DH. Someone on here told me then that the rash disappears straightaway when on a GF diet and therefore I must still be eating gluten. I later found out that this was not the case and that we are all different. if memory serves me correctly it took me about 6 years to be free of the rash and this was on a strict GF diet. I found stopping dairy made a difference, so if you haven't tried this i would cut out dairy. I introduced dairy again and seem to tolerate it now.

As I said we are all different, I found taking Dapsone made a huge difference to my rash, I only took a small dose and only when the rash was so annoying that I couldn't sleep and after about 45 mins I found the rash which was mainly on my back calming down. Because i wasnt taking it all of the time i didnt need the blood tests.

I was told ( dont know whether this is true ) that if you are given Dapsone and it works it means the rash is DH. It was another method of diagnosis. You might want to write to CUK to ask them whether this is correct. They may be able to give you more advice on the best course of action.

I notice on the link Jerry sent there is another medicine listed, could you try that ?

Hope you feel better soon