Have this rash forming on the back of my legs. Looking for relief outside of going to the doctor.

[Kirbyqueen]

So, I was diagnosed with celiac about 5 years ago, and I've stayed strictly gluten free since then. I do occasionally eat out (which am now going to cut out almost completely) and I believe that I've been accidentally glutened. I'm starting to develop this rash on the back of my legs (I had something similar happen right before my diagnosis). It's causing blisters and a periodic itch that is unbearable. When I do occasionally give in and itch, it causes a terrible stinging sensation.

 

Other than going to the doctor (because I don't have health insurance and out-of-pocket to see a gastro is insane in my area); is there home remedies to help ease the pain/itch? I've tried aloe and coconut lotion already and neither provide much relief.

[trents]

Welcome to the forum, Kirbyqueen!

Try cutting down on your iodine intake. Some celiacs who suffer from the DH rash report that this helps a great deal.

The one medication that seems to really work for the DH rash is dapsone. 

[Kirbyqueen]

28 minutes ago, trents said:

Welcome to the forum, Kirbyqueen!

Try cutting down on your iodine intake. Some celiacs who suffer from the DH rash report that this helps a great deal.

The one medication that seems to really work for the DH rash is dapsone. 

Thank you, I will do some research on what iodine is present in and give that a try!

[trents]

Table salt typically has iodine in it but you can get it without iodine. A lot of seafood is high in iodine as are kelp snacks. But, yes, it should be easy to research.

[knitty kitty]

Welcome to the forum, @Kirbyqueen!

Dairy and eggs are high in iodine.  So are crustaceans and cod fish.  

[Wheatwacked]

If your vitamin D plasma level is not high enough and you limit iodine to less than 125 mcg you are exposing yourself to hypothyroidism, low testosterone, estrogen, goiter, brain fog and slow healing.  Iodine’s Role in Hormone Balance

Considering the high conmumption of iodine in Japan, it is odd that they have very little DH.  Makes me wonder.  Antibiotics are medicines that fight infections caused by bacteria in humans.  Dapsone is an antibiotic.  DH is not bacterial.  

Quote

To date, only two studies have delineated the clinical and immunological features of Japanese DH, including a total of 116 patients, suggesting the extreme rarity of DH in Japan.  Dermatitis Herpetiformis: Novel Perspectives

Dapsone is an antibiotic by prescription only. Dapsone topical is used to treat acne in children, teenagers, and adults. Dapsone is in a class of medications called sulfone antibiotics. It works by slowing or stopping the growth of bacteria and to decrease inflammation.

Aspercream with lidocaine?  The salicylic acid might dry it and the lidocaine numbs for a few hours. Followed by Triple antibiotic ointment?

You can get OTC Lidocaine.

Direct sunshine.  The UV rays sterilize while the Infrared drys?

Topical antihistamines?

 

[knitty kitty]

No, @Wheatwacked, sunshine doesn't help DH, it makes it worse!  

Japanese don't have the same DH pathology and genes as other Celiacs with DH...

Dermatitis herpetiformis in Japan: an update

https://pubmed.ncbi.nlm.nih.gov/11834848/

Dapsone was originally used to treat leprosy.

Niacin Vitamin B3 in the form that causes flushing called nicotinic acid (NOT the same as nicotine in tobacco) helps immensely with DH.  The flushing, though uncomfortable at first, goes away as you take Niacin (100 mg) regularly.  Do NOT take extended release Niacin.  It won't have the same effect.   Also DO take a B Complex supplement for the other B vitamins needed to work with Niacin.  

Consider Gliadin X for those occasions when eating out! 

[Ellen V. Nelson]

I get this rash too. It seems more prevalent in the summer and dermatologists (I have seen many) blame this on insect bites. It is very different from a bug bite reaction. I use  topical steroid creams prescribed by them. I totally understand how you feel!

[plumbago]

I would try to eliminate shingles as a possibility. Likely it's not, since you said it's not just one leg, but both if I read correctly. Shingles doesn't often happen on the legs but it can.

If you are in the US, and in a decently sized city, find out which group holds the Medicaid contract and go to them. They often will see people without insurance and may even have a dermatologist. (Basically a public health clinic.)

[Gloria Harbridge]

On 10/19/2023 at 7:03 AM, Kirbyqueen said:

So, I was diagnosed with celiac about 5 years ago, and I've stayed strictly gluten free since then. I do occasionally eat out (which am now going to cut out almost completely) and I believe that I've been accidentally glutened. I'm starting to develop this rash on the back of my legs (I had something similar happen right before my diagnosis). It's causing blisters and a periodic itch that is unbearable. When I do occasionally give in and itch, it causes a terrible stinging sensation.

 

Other than going to the doctor (because I don't have health insurance and out-of-pocket to see a gastro is insane in my area); is there home remedies to help ease the pain/itch? I've tried aloe and coconut lotion already and neither provide much relief.

It sounds awfully like dermatitis herpetiformis but if you are eating totally gluten free I would have thought you would  not be showing the symptoms of it. A biopsy from beside the lesions (itches) would rule DH in or out. 

[cristiana]

Chiming in here to say that if dermatitis herpetiformis and shingles are eliminated, one other thing it might be is adult onset eczema.  I got it during one of the lockdowns, so I guess it must have been about 21/2 years ago. 

I had it first on my chest, then it went to my scalp, then my midriff.  It seemed to be both sides too.  My doctor thought at first it might be a fungal infection and gave me an anti-fungal cream but that didn't help at all.  I then tried an over the counter and therefore mild steroid cream - no help either, in fact, it seemed to make things worse.  Finally another doctor prescribed Betnovate which is a much stronger steroid and it almost worked overnight - I'd apply a moisturiser first, then the steroid cream 20 minutes later.  Amazing stuff! 

Around that time I happened to have a blood test and my IgE levels were much higher than normal; I looked at my diet and realised I'd been eating a lot of almonds and I wondered if that was what set it off, as I gather for some it can be a trigger. Might be worth looking at something you are eating other than gluten that could be triggering a reaction.

[Kirbyqueen]

Still dealing with this rash on my legs. I've eliminated ringworm (through use of topical ointments). And I also know it's not shingles, as I've never had chickenpox before and I'm still fairly young.

Through a lot of online research, I'm leaning more towards dermatitis herpetiformis, eczema, or psoriasis. I've actually got a doctor's appointment in May (finally got some insurance) and I'm going to bring it up then. I'm feeling really hopeful and excited to maybe be getting some relief soon.

 

Big thanks to everyone for the suggestions and positive thoughts!

[cristiana]

HI @Kirbyqueen

That's great news your insurance will be kicking in soon.  Sorry to see that you have been dealing with this for six months now, but I do hope you have managed to find some relief with some of the suggestions in the meantime.

Perhaps come back and let us know what the doctor says.

Cristiana

[K M Wade]

The only thing that temporarily quelled the crazy itching for me was to rub ice cubes up & down my legs. It was shortly after that when I began a gluten-free diet, and the large patches of itchiness & small blisters began to go away.

[knitty kitty]

@K M Wade, 

Are you still consuming dairy?  Dairy is High in Iodine which will cause dermatitis herpetiformis flares.  Dairy is also connected to eczema.

[K M Wade]

The dermatitis herpetiformis totally disappeared after I stopped eating gluten, with no further recurrence, Yes, I do eat dairy, but no, I don't have eczema. Thank you. I'm always interested to learn new things.