DH flare ups

[Crystal Nash]

Hi all,

I was diagnosed with DH 10 months ago after living on predinzone and a zillion RX derm prescribed creams for years. I had some biopsies on my face, yes my face, to get the golden seal diagnosis.

It has been getting worse every year, at one point the rheumatologist thought I had systemic lupus. My face, neck, shoulders were covered in clear fluid filled blisters. They itch and burn, wearing anything with a tag or band sent me into a freak out. And I honestly look like a meth addict. My sister called me Methyl Ethyl. I wouldn't go out, I would get dressed to take my kids to school and go home and put on a robe.

After switching , or trying to a gluten-free diet, my symptoms cleared up quickly (dapsone cream helped a bit). But I am getting flare ups that I just can't figure out.

Does anyone know the time frame in which ingesting something contaminated causes the reaction?

I'm sitting here typing as my face is on fire and it's all I can do to not try my skin right off. Not even exaggerating a bit. I might very well do it.

Do we become more sensitive as our bodies clear gluten?

I am seriously losing my you know what here.

help please!!!!

[GFinDC]

It seems like people take dapsone for DH.  Also, they avoid foods with iodine while having a flare.

[cyclinglady]

Search out SquirmingItch’s posts often found in the DH section. She has found, like many others with DH, that a gluten-free diet with a lot less processed foods has helped.  In fact, she went on the Fasano diet which was designed for those celiac who are non-responsive to the normal gluten-free diet.  Maybe 20 ppm might be too much for some celiacs, some celiac can not do oats (even pure, grown in Dedicated field oats) or maybe eating out is too risky.  Who knows?  Not much research has been done on celiacs after we have been diagnosed.  

Here is the diet.  This diet might not be for life, but a few months may resolve your current flare-up.  I even went on it last year, but it turned out that I had another AI issue and that my celiac disease was in remission (per endoscopy).  I can say that I am pretty much grain free and I feel much better for it.  Maybe it is because it makes me avoid processed foods, maybe I am super sensitive but does it matter?  Feeling good is the goal!  

Open Original Shared Link

Jane Anderson who writes for Verywell has some excellent celiac disease advice and she has DH too.  So she is very cautious.  Not maybe necessary for a “regular” celiac, but for a sensitive or one with DH, maybe not too cautious.  

Finally, maybe you need to have the house go gluten free or do some retraining on keeping safe zones.  My house is gluten free.  My kid eats gluten at school or while she is away from home.  When she was smaller and it was my hubby who was gluten free and I was not yet diagnosed, I made her only eat in the kitchen, we washed her hands after consuming gluten, and I did not let her cook or prepare meals with gluten).  I realize that this can be drastic, but Jebby, another member who is a PED preemie Doctor made her family go gluten free.  She was getting glutened from her babies.  (Search her posts).  Adorable slobbery babies can get ya!  

I hope you feel better fast! 

 

Edited June 12, 2018 by cyclinglady

[disgruntledceliac]

I have had a similar experience. Diagnosed with celiac/DH for over two years ago, but despite going gluten free I continued to have DH issues. I figured it would go away with time, but it didn't.

Two months ago I started the Fasano diet. No DH flare-ups since then. I feel much better ... for the first time in years I'm feeling optimistic about things.

The Fasano diet isn't the easiest thing in the world, as it requires dedication. Your food choices will be limited. But it is entirely worth it. They say after 3-6 months most people can go back to a normal gluten free diet, as the stomach will be healed. I'm looking forward to that! In the meantime I'm enjoying not having DH for the first time in a decade, and my energy level has gone up noticeably.

Also remember that you must avoid cross-contimination at all times. I have my own mini-fridge as well as a small convection/toaster oven to achieve this. Again, it is a little inconvenient at first, but I can assure you that it is worth it when you stop getting DH.

Best of luck, and let me know if you have any questions!