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DH outbreaks after being gluten free

Natureguy

By Natureguy
in Dermatitis Herpetiformis

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Natureguy Rookie
Natureguy
Posted

Hi everyone, My name is Nate I am 34 and have been going through a major learning process on celiac disease since my diagnosis in 2013. I am suffering from what appears to be yet another round of DH around my butt crack area. Ever since going gluten free about 5 years ago I have noticed every time I seem to get accidentally cross contaminated every so many months I will break out in DH on my arms, butt, knees or elbows. This time I am trying to remember what could have caused the accidental glutening this time and the only thing I can thing of outside of a restaurant is I started eating gluten-free cheerios. Any advice on what to do and does anyone seem to get DH on or around their rear end often? 

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RNinGA Newbie
RNinGA
Posted

Nate,

I have DH and can't do Cheerios.  The few times I have tried to eat them I start  getting a rash a few days later.  I stick with Chex.  My dermatologist prescribed me Dapasone Cream.  It is less toxic then oral Dapasone

Sarah

Natureguy Rookie
Natureguy
Posted
  • Author
2 hours ago, RNinGA said:

Nate,

I have DH and can't do Cheerios.  The few times I have tried to eat them I start  getting a rash a few days later.  I stick with Chex.  My dermatologist prescribed me Dapasone Cream.  It is less toxic then oral Dapasone

Sarah

Thank you Sarah! I will ditch the Cheerios and go back to Chex. If the sores have not healed good in a couple of days I will go to the Dr. and see if I can get the Dapasone Cream. Right now I am using Neosporin and Anti-itch cream and it seems to be working for the moment. Trouble is the DH is makes it uncomfortable to sit and since its summer sweat also makes it worse. 

squirmingitch Veteran
squirmingitch
Posted

Nate, you've got to stop getting cross contaminated. Those antibodies bury themselves under your skin & just wait for something to set them off.

It may not be just Cheerios. Many of us, & I mean MANY of us with dh can not do oats at all. Not gluten-free oats, not certified gluten-free oats, not purity protocol grown gluten-free oats.

You couldn't MAKE me eat at a restaurant! It's not worth the risk, not with dh! Not unless it's a completely gluten-free restaurant. 

 

apprehensiveengineer Community Regular
apprehensiveengineer
Posted

Cheerios are made from oats. Yes, technically allowed, but oats as an ingredient in gluten-free food is a bit of a can of worms currently. I wrote a post a few days ago that might be useful on the topic of oats in gluten-free foods.

Some celiacs react to oats in the same way they do wheat, barley, and rye. No one has established for sure how many due to limitations in study designs. In literature, it is stressed that celiacs who consume oats should be monitored closely to ensure that damage is not being caused. Unfortunately, most celiacs who eat oats probably aren't doing this and rely purely on symptoms, which are not necessarily a reliable indicator of damage, especially in relatively asymptomatic people.

https://www.celiac.com/forums/topic/122173-love-grown-granola-has-oats-is-marked-gluten-free/?tab=comments#comment-994712

gluten-free Survivor Rookie
gluten-free Survivor
Posted

Hi Nate, 

I smiled when I  saw your post because I thought I was the only  one that get the Celiac rash in those sensitive areas!

I had on my face, back and a minor break out on my belly.

Last month, I accidentally ate gluten and a painful rash broke out in my butt crack.(Could you believe that they put wheat in a pack of shelled walnuts? )

The other time, I try reintroducing rice/rice flour back into my gluten free diet and I got sick (constipation,  foulsmelling stool, body odor and some boils came out on my forehead)

I basically can't consumer any grains! 

I  used Castor oil and cortizone 10 (the castor oil at night before bed) on my rash and it dried up pretty quickly! 

I also bought a bottle of extra strenght glutenase enzyme capsules after that incident.

 

apprehensiveengineer Community Regular
apprehensiveengineer
Posted
5 hours ago, gluten-free Survivor said:

(Could you believe that they put wheat in a pack of shelled walnuts? )

 

 

Unfortunately, yes. Most nuts are contaminated because of shared lines - stuff like granola, pretzels, trail mixes with soy sauce in them etc. is likely being packed on the same surface. I would not eat shelled nuts unless they have a gluten-free label on the package.

I live in Canada, and there is only one (or two) brands of gluten-free labelled nuts here. It's very expensive. All the others say 'may contain wheat.' It's definitely not a CYA. Buy in-shell and wash before cracking them if you want nuts and can't find gluten-free labelled ones.

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