DH rash

[Jenna1028]

So I'm convinced I've had Celiac and DH since I was a kid.  That said, I've never had a DH rash this bad.  It's horrible.  

I am wondering - now that I've had a rash this bad - will it always be this bad?  Am I now more sensitive to gluten then perhaps I was before this more intense rash?

And how long does it keep spreading and getting worse, before it gets better? I'm now on day 18. My arms seem to be finally clearing up, but my knees, hips, and ankles now seem to be flaring up - or getting new spots of irritation. Am I still eating something I shouldn't? 

thank you!

[NNowak]

I haven’t had a DH flare like that since 3 weeks before my wedding almost 25 years ago. Gluten was still in my diet and I was under an enormous amount of stress. It took several steroid injections and weeks of antihistamines to make it tolerable. I was diagnosed with Celiac 6 months later. 
 

My children are also prone to DH and other forms of eczema as a result of gluten ingestion over a period of time. It takes 3-4 weeks for their skin to clear up after gluten is completely eliminated from the diet. Stress in the midst of that does make their symptoms worse. 
 

So I’d review your daily food intake, make certain stress is under control and see your doctor to discuss treatment options. Feel better!

[Jenna1028]

On 11/9/2019 at 12:22 PM, NNowak said:

So I’d review your daily food intake, make certain stress is under control and see your doctor to discuss treatment options. Feel better!

Thank you for your response!

I took your advice and started going through everything in my house. I threw out anything skeptical, and I've been doing a detox. I also found an app (skinsafe.com) for makeup, hair care, etc., and I have found that several brands of my hair products, as well skincare products, have gluten. 

As of now, my skin seems to be clearing. I have some reacurring spots - but given that I've  (unknowingly) used things with gluten, while having this horrible episode, I suspect it will still continue for a few weeks.

I also recently did DNA testing and one of the things I found, in addition to the celiac, was that I am slow to metabolize - so It may take a while for everything to work its way out of my system... For relief, I've been using a prescription steroid cream, and that's really helped.

So the goos news is that at least I have some answers and can hopefully start the healing process. 

[cyclinglady]

While I do have DH, I can empathize.  I get autoimmune hives.   All my autoimmune issues seem to stem or are made worse when my celiac disease is flaring.  Please consider removing oats from your diet, even purity grown oats, for six months.  Now, that oats have been deemed safe for celiacs, many processed gluten-free foods are adding oats to their products.  

I personally do best on a grain free, Paleo type diet and avoiding processed foods as much as possible.  

[Jenna1028]

2 hours ago, cyclinglady said:

While I do have DH, I can empathize.  I get autoimmune hives.   All my autoimmune issues seem to stem or are made worse when my celiac disease is flaring.  Please consider removing oats from your diet, even purity grown oats, for six months.  Now, that oats have been deemed safe for celiacs, many processed gluten-free foods are adding oats to their products.  

I personally do best on a grain free, Paleo type diet and avoiding processed foods as much as possible.  

My (adopted) mom would get those. I am convinced she had undiagnosed celiac... 

I found out fifteen years ago that I'm allergic to wheat, so I never eat oats just because it seemed like they were somehow related (even though everyone said they weren't - and thank God, because it seems to be like you said...) Also they're often processed in facilities that process wheat, so I just avoided.

After researching both the Paleo and anti-inflammation diet, I think it best to do like you said, eliminate processed foods, and really anything that might contribute to inflammation. I have a lot of problems with pain in my joints, and hope this will help. I'll also be eliminating all grains in general, rices, etc..

I just want to feel better, and if that means a life of chicken soup, then so be it. I just want to stop feeling like a burden to everyone I love... I want to live a healthy happy life  

[cyclinglady]

I know that those members who have DH report that they must be super strict.  You can browse through the DH section of the forum for confirmation.  

The AIP diet does sound promising.  Scripps in San Diego conducted a tiny, tiny study with Inflammatory Bowel Disease IBD patients.  They achieved a 78% remission in just a few weeks.  That is pretty amazing.  Of course larger randomized studies are need, but there is not money to research food.  ☹️

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

A strict diet and time are needed for healing.  I wish you well!  

[squirmingitch]

On 11/19/2019 at 2:24 PM, Jenna1028 said:

My (adopted) mom would get those. I am convinced she had undiagnosed celiac... 

I found out fifteen years ago that I'm allergic to wheat, so I never eat oats just because it seemed like they were somehow related (even though everyone said they weren't - and thank God, because it seems to be like you said...) Also they're often processed in facilities that process wheat, so I just avoided.

After researching both the Paleo and anti-inflammation diet, I think it best to do like you said, eliminate processed foods, and really anything that might contribute to inflammation. I have a lot of problems with pain in my joints, and hope this will help. I'll also be eliminating all grains in general, rices, etc..

I just want to feel better, and if that means a life of chicken soup, then so be it. I just want to stop feeling like a burden to everyone I love... I want to live a healthy happy life  

Jenna, if after 6 months, the pain in your joints doesn't go away or greatly improve then you may want to explore other AI diseases as the cause. AI diseases like to cluster. I had horrid joint pain & swelling which all disappeared after a while strict gluten-free. Then a few years later, those same symptoms reappeared plus more in addition. That was when I discovered I have RA.