Help..Blistering questions

[Daisy23]

I’m undiagnosed as of right now. Coming to the end of my gluten challenge.

my “blisters” look like pimples, scabies, chickenpox,  even herpes. I have to bust these bad boys open to make the itching calm down. They can form in as quickly as minutes to hours and I always know beforehand where they are going to form. Once they break open there’s like a tiny hole on my skin.. as if  it was “ protected “ by the tiny bubble I just opened up. Sometimes they bleed, and every time they scab. I’ve also noticed these scabs when they are done sometimes flake off in a weird “gummy” manner. not always but sometimes. 
I had this on my legs, ankles, above my butt, shoulders, neck, head and unfortunately my face. I know face is rare and from my understanding most don’t think it’s that when it lands on the face, but it’s identical to the bumps  I had everywhere else. All showed up at the same time, it was symmetrical.  If I had them form above my right eyebrow, I knew the left was coming hours later in the same location.

I’ve never had blisters before, so I’m unsure of what a blister typically looks like or what it does. But I’ve seen 3 dermatologists who confirm this is dermatitis ( even my face) but never mentioned it in this form. Just some random dermatitis that I get to play the guessing game with creams and nothing works. 
I don’t want to post pictures, I’m not sure how to anyway lol but does this description sound familiar? 

I’ve been dealing with this for months. I’m tired of being passed along to the next skin specialist for them to  say “maybe this cream will help”  so I’ve stopped going. I’ve been searching since July to find anyone dealing with something similar just so I could explain it and see if anyone else is like me.  
 

[knitty kitty]

@Daisy23,

Yes!  Sounds very familiar!

Sounds like Dermatitis Herpetiformis, a skin manifestation of Celiac Disease.  A biopsy next to, but not on top of, a blister should be taken.  With special staining, Celiac Disease antigluten antibodies can be seen.  A biopsy positive for Dermatitis Herpetiformis is a diagnosis of Celiac Disease.  Unfortunately, many dermatologists are not familiar with dermatitis herpetiformis and misdiagnose it as dermatitis or eczema or even acne.  Don't let their ignorance stop you.  Ask for a Dermatitis Herpetiformis biopsy.  

Dermatitis Herpetiformis forms on extensor muscles (muscles that straighten out joints), so the dermatitis herpetiformis blisters appear on knees, elbows, on the back and shoulders, over the gluteus maximus (buttocks), and even on eyebrows, neck and jaw lines.  dermatitis herpetiformis is pressure sensitive and blisters can occur under elastic on underwear and where restrictive clothing creates pressure on the skin.  

Dermatitis Herpetiformis lesions can be helped with Dapsone, a cream originally used for leprosy.  However, dermatitis herpetiformis can also be improved with Niacin Vitamin B 3 (the form that causes flushing, nicotinic acid - not the same as nicotine in cigarettes).  Avoiding foods high in Iodine also helps.  Iodine activates the antigluten antibodies in the skin causing more lesions.  Dairy, seafood (especially crustaceans), seaweed, and iodized salt contain high levels of iodine.  Avoiding these will help reduce outbreaks.  

I find cream made from tallow helps calm inflammation and reduce outbreaks and scarring.  (Vintage Traditions makes wonderful tallow balm!)   

I'm so glad you are almost at the end of your gluten challenge.  Any luck on having blood tests done sooner?  Show the dermatitis herpetiformis to your doctors who are trying to diagnose Celiac Disease.  

Best wishes!

[Daisy23]

@knitty kitty

Thank you again for your detailed response!

It’s a good thing I don’t really like dairy! But now I’ll be watching the iodine and buying some niacin tomorrow. 
I haven’t spoke with my Doctor yet, my daughter has the flu so it’s been a weird week. I plan to call/message them Monday morning to see if they think it’s okay to go ahead with the tests. If they agree my plan is to do it Thursday. That’ll be exactly 7 weeks. Fingers crossed I can get it over with sooner. 🤞🏼

[knitty kitty]

You're very welcome, @Daisy23.

Have you had a genetic test for Celiac Disease done?  Since Celiac and dermatitis herpetiformis are genetic, you may want to consider having your daughter (children) checked, too.  

Keep us posted on your progress!

[Daisy23]

@knitty kitty

I haven’t had that done. My son is 13 and has had random days of vomiting and fatigue. He seen GI 2 years ago and tested negative on the blood panel but no gene was tested. He recently started having those issues again so he is going back to children’s GI for a scope in may. My daughter isn’t biologically mine but she is blood related so it’s likely that if all this goes somewhere I’ll end up having her tested as well. We always assumed it was just cows milk protein that was the issue for them. But now I’m learning it can be both.  😕 

[Scott Adams]

This article may also be helpful as it offers various ways to relieve the itch: