My Turn For Possible Dh

[Schatz]

I think I may have DH, but the doctors I have seen are not convinced as my rash does not present like typical DH. 

 

I was diagnosed with Celiac in 2011 after being quite ill for a few years.

 

Before my decline in health I developed a blistery rash just inside and outside of my nose. It's a small area affected. Both nostrils and the outside part between the nostrils. The rash gets really bright red, itchy, tender to touch, and a bunch of tiny little blisters that pop on their own after a few days. At the time my doctor said it was herpes and rx'd Valtrex both ointment and pills. The meds did nothing. The rash would come and go, but my nose was/is always red with or without blisters. 

 

In the mean time I started getting very sick with a bunch of celiac symptoms. After 3 years I made it to a doctor who diagnosed me. He said my rash on my nose could be related to celiac, but he didn't offer any treatments other than gluten-free diet. 

 

In the years since 2011 this rash comes and goes. Again, my nose is always red. I have kept track and if I am glutened I will break out with the blisters. However, at times they seem to erupt for no reason but not as badly. 

 

I am tired of my nose being red and this little sores/blisters popping up. 

 

Doctor 1 (the one who completely missed my celiac dx) said herpes.

 

Doctor 2 said stress induced eczema

 

Doctor 3 (dermatologist) said contact dermatitis and gave me steroid cream which did nothing

 

Doctor 4 (GI) suggested related to celiac and gluten-free diet would help

 

Same dermatologist from before said he doesn't think it's DH because it's just on my nose which is not typical for DH. Also because I have eruptions even when I haven't had gluten exposure. He suggested staph infection. Treated me with ointment and that did nothing at all. Then he gave me oral antibiotics (doxycycline) and the rash and even redness disappeared. I hadn't seen my nose look so normal in 7 years. After 2 months of finishing the meds the rash came back but not very badly. I did have a gluten exposure. Took another round of doxy and it cleared. After 3 weeks I got little blisters and redness again, but very mild and they blisters went away fairly quickly. Still have some redness. 

 

So I have been referred to an ENT (since it's my nose) and he thinks it is herpes. He wants me to start Valtrex again. I told him of my past experience, but he suggested I needed to take it longer and take it daily. 

 

I have had cold sores from the time I was a young child (thank you Mom), and in my really sick years right before my dx of celiac the cold sores were really bad. So I know I have the herpes virus, but actually since I've been gluten-free these past 4 years I have had maybe 2 cold sores. 

 

Here's what I'm thinking. It doesn't make any sense to me why my nose would clear up so nicely while I was taking doxycycline if this is a herpes virus. I mean that makes zero sense. The ENT seemed to brush that off because when I describe my symptoms he says it sounds herpetic. Which I agree with him because I do get little tiny fluid filled blisters. 

 

So, I come here to ask what you all who really understand DH if you think that might be it. There is NO WAY I will consume gluten for a test. We know I have celiac. That is not in question. I'm not going to do damage to my body just to run a test. 

 

Where do I go from here? How would I be able to figure out if this is DH? Is it possible that it is DH? In other words, can one have DH just on the nose in a small area? How long after gluten exposure is it possible to break out with DH? 

 

I read on some sites that it can takes years to completely clear up. True? 

 

I cannot be more careful about gluten. My house is 100% gluten-free including all body products even though I know gluten cannot pass through skin. I do not eat out at all. Ever. The few times I tried (at the beginning of my gluten-free journey) I have gotten sick. The only place I eat other than my home is at my mom's house, and she and I are obsessively careful.

 

I would really like to not look like Rudolph anymore. 7 years has been enough. 

 

Ideas? 

 

 

[captaincrab55]

Try going to a new Dermatologist.

[squirmingitch]

Yes, it can take years for some for the rash to subside.

 

Yes, the ENT is right -- it does look herpetic. That's WHY they call it dermatitis HERPETIFORMIS Mr. ENT!!! It presents in a herpetic manner. That does not mean it's herpes!!!!! 

 

Yes, the rash can present any old where on the body so if it presents on the nose then it presents on the nose.

 

You already know that in order to test for it you have to do a gluten challenge. I don't blame you for not doing that. i wouldn't either.

 

I CAN think of a reason it cleared up while you were taking doxycycline. Follow me here ~~~

The medication of choice for dh is Dapsone which is an antibiotic but it can cause big, bad, liver problems & one has to be monitored closely with blood tests while on Dapsone. Dapsone is a sulfa drug. After Dapsone are a number of antibiotics, mostly also sulfa drugs but here are some that are used. Sulfapyridine, sulfamethoxypyridazine, colchicine, cyclosporine, lymecycline, nicotiniamide, and TETRACYCLINE. All of those are considered to be less effective than Dapsone but then we are all individuals aren't we and what works for one may not work so well for another. At any rate you were taking an antibiotic in the terramycin class. 

 

Now, I believe you when you say you are rabid about not getting cc'd. BUT we want to make sure something hasn't slipped under the radar here so don't get upset okay? We just want to check some things & make sure those aren't exposing you to gluten b/c it is entirely possible that this is coming from a low level gluten exposure & it's keeping the rash firing on you. Here goes:

Kissing any gluten eaters when they have not thoroughly brushed their teeth first?

Exposure from kids gluteny hands or cheeks?

Pets -- pet food that contains gluten -- you can breathe it & gluten dust goes down your throat or kissing your pets with gluteny mouths or after they have licked themselves & gotten gluteny fur.

Vitamins, meds, OTC meds and things like probiotics.... do you make sure none of those contain gluten?

 

Last but not least. Do you eat oats? Certified gluten free oats? If you answered no to the items I listed above but yes to oats it is possible you are 1 of the 8% of celiacs who actually have a reaction to even certified gluten free oats. I am. That one took me a long time to figure out! 

[Schatz]

Thanks, that's why I'm thinking dh because it did clear with doxy and when I read that tetra is sometimes used I knew that doxy was related to that drug family. 

 

Ok, as to your questions...

 

No, kissing gluten eaters. My hubby knows not to kiss me as I've gotten sick before from that.

 

No, gluten from kids. No gluten allowed in house, and when we are out and about they are not allowed to eat gluten in the car and must wash hands and face right after eating anything with gluten.

 

All pet food is gluten free. I even check the treats. Some people think I'm ridiculous that I feed my pets gluten-free, but who cares what they think.

 

I check all meds, vitamins on glutenfreemedicine.com  That is the site to use, yes? 

 

Yes, I do eat certified gluten free oats. It took about 2 years before I could eat them and not get a stomach ache. GI said that was due to the time needed to heal my intestines. Same with dairy. Still can't do a lot of dairy and straight milk is a big no. 

 

So, it might be the oats? Shoot. I like oatmeal. 

[squirmingitch]

Well i can't think of anything else it could be. I don't think I've forgotten anything. If anyone else reads this & thinks of something they'll let us know. 

 

There's one way to find out. Quit the oats for a while & see what happens. Be sure to check ingredient labels for oats & oat fiber just like you do for wheat, barley & rye. If you improve you have your answer. If you don't then we can brainstorm it again.

 

I know, I like oats too. A bowl of oatmeal had always been one of my comfort foods. Oatmeal raisin cookies, oatmeal fudge. Sigh. Oh well.