dermatitis herpetiformis

[gluten-free-33]

I was originally diagnosed with celiac disease by my neurologist who ran more intensive blood work than anyone had previously. After seeing a GI and having an endoscopy completed I was told that I've had celiac for a long time based on the results. I started the gluten free diet in March. Recently I have begun to see rashes that, based on research, seem to be dermatitis herpetiformis. My dermatologist diagnosed the first appearance as eczema after a biopsy. Over the last few days I've been seeing more of these areas appearing, mainly on my neck and back. I never had any skin condition like this before starting the gluten-free diet, only migraines and daily headaches. Has anyone else experienced things like this AFTER going gluten-free?

[Diana061]

Is it possible you have shingles ? 

[gluten-free-33]

I suppose it's possible? But I'm not sure it's shingles since it went away (mostly) and has now reappeared in different places? I don't know much about shingles either... I'm sort of at a stop point on which doctor to actually see and trust. It seems most I've seen aren't well-versed in Celiac Disease and I've been doing a lot of my own research. Feeling fairly at a loss about it all with no clear direction where to go next. 

[squirmingitch]

Do you have a shared household? Do you eat out? Are you eating oats? Are you sure you're not getting cross contaminated?

Have you read our Newbie 101 pinned to the top of the Coping section?

How was the biopsy done? ON a lesion (or rash)? That is not a biopsy for dh. A biopsy for dh is taken adjacent to a fresh lesion & there is an immunofluorescent staining process & it's looked at by pathology for a particular patterning.

If it is eczema, eczema & other skin rashes/problems are common to celiacs. 

[gluten-free-33]

We were on a trip out of town for a family wedding (eating out a couple times when necessary) when this second round started so that's what is leading me to think it is DH or something resulting from cross contamination. My initial biopsy was taken from the rash area. Although my dermatologist knew I had been diagnosed Im not sure he thought it was related. I'm confused because I never had these things show until after eliminating gluten. 

[Jmg]

9 hours ago, gluten-free@33 said:

 Has anyone else experienced things like this AFTER going gluten-free?

I had what I think was DH about 18 months into being gluten-free. It was an intensely itchy rash on each elbow. I reviewed my diet and stopped eating a breakfast cereal which I'd previously thought was safe, but had barley malt in it. The rash resolved. Note I didn't go to the doctors, so I can't tell you that it was DH, but it's my best guess.

It wasn't like shingles which I've definitely had. That follows a nerve pathway around the body, it's very sore to begin with and progresses into ugly raised sores. Painful and unpleasant! To be honest, you will soon know if you have it. 

I also have seborroic dermatitis and folliculitis, it wasn't like those. My theory is that as I progressed on the diet my body became more sensitive and previously tolerated amounts were no longer suitable for me. So my advice to you would be to review your diet as per squirmingitch above to see if there's any rogue food, sauce etc which may be letting even the smallest bit of gluten into your system. 

[Sue7171]

On 8/8/2016 at 1:47 PM, gluten-free@33 said:

I was originally diagnosed with celiac disease by my neurologist who ran more intensive blood work than anyone had previously. After seeing a GI and having an endoscopy completed I was told that I've had celiac for a long time based on the results. I started the gluten free diet in March. Recently I have begun to see rashes that, based on research, seem to be dermatitis herpetiformis. My dermatologist diagnosed the first appearance as eczema after a biopsy. Over the last few days I've been seeing more of these areas appearing, mainly on my neck and back. I never had any skin condition like this before starting the gluten-free diet, only migraines and daily headaches. Has anyone else experienced things like this AFTER going gluten-free?

Only if I accidentally ate gluten OR put anything with gluten on my skin. Is it possible that some shampoo/soap/lotion you have and are applying to yourself has gluten in it?

BTW the treatment besides avoidance for DH is Dapsone in a gel form applied to the affected area.

[gluten-free-33]

Thank you all for your thoughts and assistance. I'm more hopeful knowing there are supportive people out here!