If you've read my story, you know that when I first learned about Celiac, I thought for sure that it's what I have. I've been tested by blood test multiple times, all negative, and of course as you know I have been diagnosed with Crohn's. My remarkable recovery with a gluten and dairy free diet alone has always hinted towards the fact that I probably do have Celiac despite the Crohn's diagnosis, and actually, many Crohn's patients do also have Celiac. The one thing that made me really think that I did have Celiac was the recurring rash I used to get. It's an intense rash, your skin starts to tingle before the rash breaks out, then once it does, the itch is insane. Clusters of little bumps appear, you scratch, the skin breaks, weeps, burns. It's awful. Sorry if this is TMI but hey, this website is full disclosure!
Well I have had multiple doctors check the rash but they always say they don't know what it is. It's clearly a reaction to something they just don't know what. The problem is, it comes and goes so quickly that by the time I get to the doctors office, it's barely there for the doc to check out. I've done extensive research regarding types or rashes, but the only one that matches my symptoms exactly is Dermatitis Herpetiformis - the Celiac rash.
When I was undergoing treatment for Crohn's, the medications I was on cleared up the rash and I didn't see it for over two years. I thought it was gone for good but once in a while I'd feel that familiar tingle again. Recently I shared with you all that last year was a bad one diet wise and that I had been cheating on the gf diet. After about 6 months of this, the rash started to re-appear. It was mild at first and back in November I fully recommitted to the GF diet. In general I started to feel better right away and still do, but the rash persisted and when I started taking birth control pills it went out of control. It was just within the last couple days, in the middle of a major flare, that I decided to stop taking the pills as I started researching DH again and found that oral contraceptives can definitely exacerbate the rash. I know it was the pills because it got better during the week off of them and then the first week back on again the rash went nuts after about 3 days. I have been strictly gluten free for a few months now but the rash doesn't necessarily clear up right away. Needless to say I'm enormously frustrated with myself for cheating.
While researching DH, I discovered that it's caused by deposits of IgA antibodies on the skin. This sparked my memory of my very first Celiac panel. I was also in a mild flare of the rash at the time. The numbers were all within normal ranges, but the doctor had made a note on the report that my IgA levels needed to be monitored. I believe that my levels were in the high end of the normal range but I can't remember exactly and I can't find the test results. If the doctor had been looking at this as a DH test rather than a Celiac test, in combination with the rash, I believe this would be a positive result. Of course, just like all other Celiac tests, these don't ever seem to be 100% accurate. So frustrating!
I have appointments with both my docs in March. The plan right now is to stick to the gf diet, move forward with the Paleo diet and stay off the pills. Hopefully it will get better, but if it doesn't, then I'll make an earlier appointment and see if I can get in to see a dermatologist. Seriously, autoimmunity never ends does it?! It's a struggle, but I'm not letting it get me down. I've still made major progress, despite a few steps back. I'm just so glad to have this support community. I reached out to others with DH this week, read forums, articles, anything I could find. There's no doubt in my mind that I have DH, which means I do in fact have Celiac. I'd go back for more testing, but will it make a difference? No. I'm already GF anyway and there's not much else they can do. Just keep pushing on!
If you have any experience with DH I'd love to hear from you! Leave a comment here or email me - jen at alifeofsugarandspice dot com. And as always, THANKS for reading and for your support!!! The response to this site lately has been amazing and more and more people are spreading the word. I really appreciate it!!