Rash getting worse AFTER going gluten-free

[CheekyPrincess]

I was recently diagnosed with Celiac's disease.  I started the gluten-free diet the same day as my diagnosis, and have now been completely gluten-free for almost 2 months.  Prior to my diagnosis, I would get sporadic outbreaks of a blistery rash on random areas of my body, that would last a week or two, then disappear for sometimes months at a time.  However, a week after going gluten-free, I had a horrible outbreak in two different areas of my body.  At the time, I assumed it was a bad reaction to the B12 shot that I had started at the same time as going gluten-free, (I'd had hives from a previous round of B12 about 18 years ago) and the dr just had me take some Benydryl and a light steroid.  It seemed to "dry it up", but within a week, I noticed it creeping back, little by little, and has now spread over a good portion of my body.  The majority of it appearing over this past weekend, causing me unbearable itching, and then burning pain, when I give in and scratch.  As my drs office is closed on the weekend, I decided to use Google Images to see if I could find pictures of similar outbreaks, in hopes of figuring out what could be causing it, and how to treat it... low and behold I stumbled upon photos of DH and had an "Ah-Ha" moment.  However, now I'm only left MORE confused, since the rash has seemed to spread and worsen just as I'm starting to finally feel the positive effects in my body from going gluten-free.  Has anyone else experienced this?  Could this just be part of the Gluten leaving my body?  I have a call into my dr's office, but my regular dr just went on maternity leave, and I'm not sure when I'll be able to get in, as her partner is doubled up on patients right now.

[ravenwoodglass]

Welcome to the board. DH is no fun as I unfortunately know first hand. You may be getting cross contamination either in your kitchen or in your  food. Do read the Newbie 101 thread at the top of the Coping section as it has a lot of info on what we need to keep safe. Unfortuately celiac is more than just the food we eat and we all mess up a few times at first. I could have never imagined, for example, that kissing a gluten eating and drinking significant other could 'get me'.

You may need to avoid iodine in food and supplements until this calms down. Make sure your topical products are gluten free and check all meds for gluten. Your pharmacist should be doing that so make sure celiac in their records. Go with as much unprocessed, whole foods as you can. The best thing I found for relief was cool compresses and if you find you are scratching in your sleep a pair of plain cotton gloves can help. I hope you heal quickly.

[Smiling-Eyes]

DH - typing it makes my fingers itch. It can take years to stabilize, and you will never if it's due to cross contamination. DH is unforgiving, it won't go away just being gluten free, it lingers, many things can aggravate active DH. Exposure that will not bother you if not active can cause it to "hang on" or get worse. I had to quit growing squash in my garden, the hairs on the leaves would aggravate any small amount of DH, and yet I can eat it without difficulty and handle the plants if not active. Autoimmune disorder. Your autoimmune challenges are yours, nobody can tell you what they are, only you can discover them. Yes, there are "typical" responses, and yet, the farther from stable your body is, the more difficult it is to understand, because it is complicated. 

All the money and doctors in the world can't help a Celiac with DH that is to poor to pay attention.

The positive side, DH is your advance warning system of gluten exposure. Imagine you were an anaphylactic celiac, now a nightmare of itching 20 or 30 minutes after exposure can actually save your life. oh, just me, seriously, I can't be the only surviving anaphylactic celiac. DH, my frenemy.

For short term sanity. Over the counter steroid creme is your answer to sanity, IT IS NOT YOUR daily treatment, dangerous stuff. It can save your brain, get you back to sane AND cause health issues you don't want. Research. 

[ravenwoodglass]

1 hour ago, Smiling-Eyes said:

The positive side, DH is your advance warning system of gluten exposure.

Until I had been gluten free strictly for about 5 years that was the case for me also. The first year I could feel a lesion flaring within an hour of getting CC'd.  In my case I did find the longer I was gluten free the later the lesions would show up. It now (15 yrs later) is the last thing after a good glutening and the lesions are now just a minor annoyance instead of a living hell.

Steroid cream can help some folks but be aware that if you are having any DH or celiac related testing it can cause a false negative. Also be very wary if a doctor wants to give you Dapsone. Be sure to research the side effects and observe the need for repeat liver panels frequently as it is quite toxic.

[CheekyPrincess]

Thank you all so much!  I feel so lost in all this, and other than this group, haven't found much GOOD information regarding Celiacs online.  I try to be pretty careful with what I ingest, and whenever trying something new, I do it one thing at a time to gauge reactions.  I used to be an "out to eat" almost nightly person, as I own my own business and have little time to prepare/eat at home, but I've pretty much given up everything, except for the one local pizza place that carries an entire gluten-free menu.  Thankfully, I have a supportive husband, who when I received my diagnosis, went gluten-free with me, however I also have two adult children (18 and 20) who are still at home while attending college, and I have my suspicions, that I may have gotten CCed from some of their, not-so-careful kitchen cleanups. 
This is such a one-day-a-time, (heck, one-meal-at-a-time) disease.  I never could have imagined all that this entailed, and have made the transition a lot smoother than I had hoped, but it's little things like this, that make me realize I have such a long way to go in the learning process.  I never would have thought to check my soaps, shampoos, etc.... or even kissing an non-gluten-free person.  Hopefully, I'll have the answers soon if this is truly DH, but I'd almost bet money that it is after reading through tons of these threads and seeing photos.  All the "symptoms" are there.  The only thing I seem to differ on is that my armpits were the first things affected, and that doesn't seem to be all that common.

Again, thank you all so much!!!! 

[squirmingitch]

But armpits DO get affected! I had it in my armpits & it's, well, frankly, the pits!!!! OH yeah, dh in the armpits is not a new thing nor an uncommon thing. A gal named pricklypear1971 was on this board for many years & she helped me when I first came along. She had dh in her armpits & that was the first place it presented with her. She had it BAD in her pits! I did a search trying to find some threads where she discussed it but there were so many threads where she posted, it would be near impossible to find the right ones. I did however come across 2 threads that do discuss dh in the pits & are also good threads for you to read in general.

https://www.celiac.com/forums/topic/91403-armpits-dh/

https://www.celiac.com/forums/topic/102919-i-have-so-many-questions/

[apprehensiveengineer]

I get a rash in my armpits. It's terrible. I've been told this is hidradenitis suppuritiva (also an autoimmune condition), but I'm not entirely convinced there isn't some overlap between the two conditions. HS is known to be improved by a diet that happens to exclude sources of gluten (though it is never described as such in studies).

I have found that it helps to avoid antiperspirant and shaving. I avoid putting anything on my armpits when they're affected, but if you must look for a deodorant instead of antiperspirant (deodorant does not clog up pores/sweat glands). I have found a simple formulation of diaper cream (petroleum jelly + zinc oxide, no fragrances) to be helpful - it reduces friction/irritation and controls bacteria/smell when your pits are too messed up/sensitive for deodorant. I also use this on rash outbreaks elsewhere, and it seems to help them heal a bit faster.