Celiac disease and dermatitis herpetiformis rash

This is intriguing. I have been on a gluten free diet for years due to probable celiac. My diagnosis was based on having NO IgA, but also having other celiac symptoms. Since my daughter has celiac, I went gluten free before my doctor got around to doing other testing (putting a scope down my throat) so no confirmation there.
For a year now I have a rash that does look like DH. Doctors say it is probably something that I am ingesting but can’t give a definitive cause. The rash is also not in the areas that my research says are typical for DH. My rash started on my wrist, then arms, thighs, back and chest and I have had rosacea off and on for years so I can’t say if it is on my face or not. I am strictly gluten free.
I will add DH to my list of things for my doctors to investigate. Could just be coincidence?

I would suggest you stay away from eating oats. Many celiacs cannot eat the oats. I too had elevated IgA numbers following a strict diet. I found out my high blood pressure pill was mimicking a celiac reaction. Good luck.

I have been gluten free for 9 years also went through several nutritionist telling I have no gluten in my diet. Even one told me I was to strict. Went to Mayo Arizona they told me to not eat gluten-free process foods and also intolerance to sugar alcohols and chicory root. I tried eliminating all those things and my number is still climbing. Just wondering if anyone else is having this issue?

Cross-contamination! Gluten-free & celiac-safe are not the same—any gf food processed or prepared in a facility using gluten is not safe if you are sensitive to gluten, including your own home or workplace —your server handing your gf meal who just arranged a bread basket or or snuck a bite of a bagel, flour in the air where you ordered your gf pizza, barley dog treats, a kiss from your non-gf partner…

When I went to Mayo they said no gluten-free process foods because I have it so bad. They said I couldn't even tolerate even the small amounts that companies are allowed in their GF foods. ( 20 parts per million but US just up it) I don't eat out and eat a very clean diet (Mediterranean diet ). I do have occasionally pasta or rice but only 1 or 2 ingredients. If on very rare occasion I have a GF process product I know I will be in the bathroom. That's why I can't figure out why my antibodies don't go down. Every person I know who has celiac disease after going GF their's went down. Also I am the only one in my household.

@mayo99824
Hi…I have celiac disease and DH, but also developed a rash not typical for DH. My dermatologist did a biopsy and it showed granuloma annulare, which is under the umbrella of autoimmune disease. It’s not uncommon to have more than one autoimmune disease, so it might be something to ask about.

Interesting. When I had active Lyme Disease I had a biopsy that came back with granuloma annulaire but it is nothing like the rash I have now. That was one small lesion and this is almost whole body.
I think that I may have more than one rash going on now, like I did with Lyme. When I had active Lyme I had granuloma annulaire, erythema nodosum, hives and maybe other rashes/skin conditions that were not diagnosed. The skin is our biggest organ and probably pretty vulnerable since it is exposed to everything inside and out.
I don’t buy into the concept of “autoimmune” disease where your body fights itself or your immune system just, out of the blue, goes haywire. One doctor once told me (before my Lyme diagnosis) that he believed I had some sort of infection/parasite that my body was fighting but they didn’t have a test yet that identified it. I agree with that doctor. There is so much they don’t know.
Before the Lyme diagnosis, I was diagnosed as having Lupus based on blood tests and given 5 years to live. That was over 30 years ago. I was treated for Lyme and have been reasonably healthy ever since.
I think this rash may be caused by an overgrowth of mites. I was told that I have an allergy to dust since I was a baby. My eye doctor suggested mites years ago. I don’t know what my diagnosis of allergy to dust was based on. I looked into getting a water filtration vacuum cleaner, like my family had when I was a child, and those things cost like $1000. We did not have tons of money when I was growing up so having that expensive piece of equipment tells me that the dust allergy was more than just sneezes.