dermatitis herpetiformis and cross reaction?

[MO1984]

I’ve been really struggling with getting my dermatitis herpetiformis flare ups under control lately. Somehow, despite my mother’s dermatitis herpetiformis always being on her back, and my brother’s always on his legs, mine roves around my body. It has now settled, quite uncomfortably in my nether regions. Despite a strict gluten-free diet I’m currently having the worst flare up I’ve ever had, and can’t shake it. 

This morning I had an AHA! moment, and am wondering if others have experienced this. Coffee cross reaction. Some studies have shown that the protein in coffee can trigger an autoimmune response. I generally find that I can enjoy coffee periodically it’s not an issue, however, if I consume it daily, or even 3 times a week habitually, I start to feel the creeping symptoms of chronic exposure. Sluggish morning, bloat, etc. This is cross reaction, not cross contamination: whole beans, roasted locally, ground on site, no added flavors. 

about two months ago I started using a gluten-free mushroom coffee thing, and felt fantastic! It has a very small amount of coffee in it, and the benefits of the other components has been astounding. But now, two months in, my dermatitis herpetiformis is out of control. I haven’t, however, felt overt “glutened” symptoms…so I’m wondering if maybe the low daily coffee intake has somehow triggered the autoimmune dermatitis herpetiformis without triggering the gut symptoms? 

Good grief, celiac is a tricky disease… and this is coming from someone who’s over 23 years into diagnosis. 

[knitty kitty]

Welcome to the forum, @MO1984,

I have dermatitis herpetiformis, too.  I've learned that glutamate can make dermatitis herpetiformis worse.  Some foods like mushrooms can contain high levels of glutamate.  Coffee and caffeine cause increased production of glutamate.  

Glutamate is a helpful excitatory neurotransmitter that our bodies can make.  It helps wake us up in the morning.  It keeps us alert when under stress.  But too much can cause insomnia.  And too much glutamate can cause the antibodies associated with dermatitis herpetiformis (tTg 3) to become more active and deposit in the skin.  

dermatitis herpetiformis is pressure sensitive.  dermatitis herpetiformis eruptions occur where there's pressure on the skin, like in the crotch where the skin folds together, under elastic bands in underwear, and along seams of clothing.  

Wearing loose clothing made of natural fibers helps immensely.  

Hope this helps!

[Scott Adams]

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:

 

[MO1984]

On 10/14/2024 at 2:21 PM, knitty kitty said:

Welcome to the forum, @MO1984,

I have dermatitis herpetiformis, too.  I've learned that glutamate can make dermatitis herpetiformis worse.  Some foods like mushrooms can contain high levels of glutamate.  Coffee and caffeine cause increased production of glutamate.  

Glutamate is a helpful excitatory neurotransmitter that our bodies can make.  It helps wake us up in the morning.  It keeps us alert when under stress.  But too much can cause insomnia.  And too much glutamate can cause the antibodies associated with dermatitis herpetiformis (tTg 3) to become more active and deposit in the skin.  

dermatitis herpetiformis is pressure sensitive.  dermatitis herpetiformis eruptions occur where there's pressure on the skin, like in the crotch where the skin folds together, under elastic bands in underwear, and along seams of clothing.  

Wearing loose clothing made of natural fibers helps immensely.  

Hope this helps!

 

oh my goodness! I kid you not it took maybe 30 hours after stopping the drink for the rash to start to clear. I think I will try the matcha version and hope it’s just the coffee issue, because it was helping my energy so much. BUT now I know to keep a close eye for the mushroom negative effect… thank you so much!!! 

[MO1984]

18 minutes ago, Scott Adams said:

If you have dermatitis herpetiformis you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:

 

Wow, I had no idea dermatitis herpetiformis is so easily triggered! So there are definitely things that could trigger the dermatitis herpetiformis, and not the gluten reaction… I’m gathering. Yikes. 
 

im learning so much, thank you! Only in the last year or so has my dermatitis herpetiformis really become a factor, so I’m just figuring it all out.