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I think I got Glutened from straw

Jess8989

By Jess8989
in Dermatitis Herpetiformis

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Jess8989 Newbie
Jess8989
Posted

Hi

i haven't been diagnosed yet. Bloodwork was negative (on gluten free diet) and I'm awaiting skin biopsy results 

I have DH on the front of my thighs. The dermatologist says DH only happens on knees and elbows therefore I don't have it. It's itchy as hell, blisters, purple scans as It heals, migrates around but always in that spot on both legs. It takes 5 days after exposure to gluten for it to show up and it can last for a month. I throw up 24 hours after exposure, GI symptoms 36 hours after that last for about a week. I also will have a panic attack somewhere in that time. 

I've been gluten free since December. Rash went away after a week of no gluten but came back after a few months (I ate a rice Crispie square) 

My problem is this. I live in a farming community. I just filled my dogs kennel with straw not even THINKING about gluten. This was last week. All symptoms happened in order and now the DH is back. How the hell am I going to survive? I can stop using it on my property but what if it's in the air during Harvest time? I thought I had a mental handle on this but I'm devastated and terrified. My husband doubts it's possible the straw Glutened me but I know it did. What

if this summer the air literally kills me? Has anyone dealt with this? I feel like I'm going insane, I'm so obsessed with this and now I'm itchy and sick too ? 

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Ennis-TX Grand Master
Ennis-TX
Posted

I know I got glutened after handling some straw last year helping out decorating at the farmers market then going to eat something without washing my hands. I later learned it was wheat straw, some of them still had the heads on them and everything. Gave that area wide walk around after that, I did not have much issues with inhalation with it. But if your there with a thrasher running, down wind during the harvest.......I imagine it might be hell if your super sensitive. If you get skin reactions that easily from it I guess taking a vacation during harvest? Try staying indoors, dust mask, long sleeves and pants hope for the best.......I am just throwing some ideas out there. Maybe someone can help a bit more.

cyclinglady Grand Master
cyclinglady
Posted

I can not help you except to offer some emotional support.  You are not crazy!  You can get glutened on a farm.  Here is a study:

Open Original Shared Link

This topic has come up before:

Hugs!  

 

 

susan french Rookie
susan french
Posted

Dermatitis Herpetiformis  can manifest itself in lesions anywhere, not just elbows and knees.  I have it and although gluten free, I still have severe itching and little bumps that itch.  I don't have the lesions any more, but itching can drive a person mad.  the bumps can be on buttocks, shoulders, etc.  Dapsone is the standard treatment, if you are not allergic.  I also use topical prescription creams.  I take 2 Zyrtec a day and benedryl at night.  Benedril spray helps with temporary relief.  Also am on hydroxyzine and doxepin.  Sometimes steroids like prednisone help, but can ruin ones blood sugar counts.  I use Grandma's Baking Soda soap. 

Straw may certainly be a factor.  I must be coming in contact with a trigger of some kind even though I'm very careful about my diet.  Change your dermatologist and get a specialist in DH.  I went for years with all kinds of stomach and bowel issues and was 69 years old before being correctly diagnosed.  Don't let anyone tell you it's your imagination!

squirmingitch Veteran
squirmingitch
Posted

If you are eating gluten free all testing will come up negative. That's blood draw, endoscopic biopsy AND dh biopsy.

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