Does this look like DH? Pics

[Hb333]

Celiac neg on all serology

Celiac neg on skin biopsy

DNA test shows 1 copy of HLA DQB1*02  (.5% risk)

Suffered from this on and off for 13+ years. Went gluten free about 4 weeks ago after seeing DNA test and rash cleared for the first time in a long time. But I might've ingested gluten when food was out of my control during a trip a few days ago and numerous blisters developed. 

Rash mainly appears on my back as scattered blisters on rib cage on both sides. Sometimes they pop up elsewhere on my lower back, upper buttocks, and shoulders. I got some photos. Does this look like DH?

Blisters rarely burst, but are itchy. Some years ago they were swabbed for HSV 1&2 and I got blood tests for those too- negative. 

[Scott Adams]

It's possible, but this would not be a typical location for DH, and I don't see the clear, tiny blisters. Of course I'm not a doctor or dermatologist, so you should send the images to your doctor if you can.

[Posterboy]

Hb333,

These couple of threads might help you.

You can trial some Niacinamide it has shown to help certain certain skin conditions including Acne and up to and including DH...

I've said this before and stand by it.....more studies need to be done about this topic, IE the Niacin connection for skin issues in Celiac disease presenting....as DH.

Here is fairly recent research on Niacinamide being used to treat DH in Celiac's...

Entitled "Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide"

https://pubmed.ncbi.nlm.nih.gov/30390734/

It would only be "antedotal" information if you take Niacinamide for 3 months and it helps your Skin flare ups.....but it would/could help you know.....until more studies are done on this topic.....Don't take the Tetracycline......IF it is the Pellagra causing the flare up.....then the Niacinamide will help it in about 3 months or less!

It sounds like you need help now and cant' wait another 13 years to get/be better!

See the research on Acne as a "Sub-Type" of Pellagra....

https://www.sciencepublishinggroup.com/journal/paperinfo?journalid=254&paperId=10063819

Duration and frequency is important with any B-Vitamin....it takes about 3 months of Niacinamide to put many types of Skin issues into remission.

From the full citation and be accessed by clicking on the PDF link undere the abstract (top right of citation)....

quoting

"A pilot study shows that the effective rate of high dose niacin in 3 month treatment of acne vulgaris up to
80% [60]. The therapeutic effect of niacin on acne is an important basis for acne to be diagnosed as pellagra"

You can only confirm if you have developed Pellagra presenting as DH in Celiac's by trialing Niacinamide for approx. 3 months.

If the Skin rash goes into remission then the low nutrient levels triggered by your Celiac disease has triggered Sub-Clinical Pellagra....and the doctor's don't SEE it.....

I suggest you take it with meals for 3 months and SEE what happens!

I have a friend IRL now (acquantence really)......friend is an over used term....that had terrible acne and who trialed Niacinamide after I bought her a bottle and gave it to them......and now after about 6 weeks of taking Niacinamide her Acne IS much improved and she IS very happy I gave her some Niacinamide to take.

I hope this helpful but it is not medical advice.

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things”

Posterboy by the grace of God,

[Hb333]

On 12/9/2022 at 4:25 PM, Scott Adams said:

It's possible, but this would not be a typical location for DH, and I don't see the clear, tiny blisters. Of course I'm not a doctor or dermatologist, so you should send the images to your doctor if you can.

They are blisters but that doesn't really show up except on the one that's big. They're clustered but far apart if that makes sense. They never burst but they itch. They have shown up this way for 13 years! When I get acne it doesn't itch. I was on Doxycycline for 2 months for acne and it AND this maybe DH thing all but disappeared, and I was also gluten free for a month of that. Taco bell screwed up my order tonight as usual (I go rarely because I understand the hard taco shells are okay to eat) but they gave me a big flour tortilla burrito and I didn't check the bag before driving off. I was so hungry I ate it... so I guess we will see if a huge flare up happens. In fact, I felt the itching within 2 hours....

[Rogol72]

Dermatitis Herpetiformis is an absolute unbearable itch, so much so that you will scratch the itch down to the bone. Nothing will ease the itch except for Dapsone and/or a strict gluten free diet depending on how bad it is. It may be worth getting a second option from another dermatologist. It does not sound like DH, but if it is ... a definitive diagnosis is important because of the increased risk of developing other autoimmune conditions associated with undiagnosed Coeliac Disease. I was negative on blood serology, positive on skin biopsy, and I'm sure I have the Coeliac gene. Labs make mistakes, and doctors can miss things. Hope you get an answer soon.

[Scott Adams]

On 12/10/2022 at 11:21 PM, Hb333 said:

They are blisters but that doesn't really show up except on the one that's big. They're clustered but far apart if that makes sense. They never burst but they itch. They have shown up this way for 13 years! When I get acne it doesn't itch. I was on Doxycycline for 2 months for acne and it AND this maybe DH thing all but disappeared, and I was also gluten free for a month of that. Taco bell screwed up my order tonight as usual (I go rarely because I understand the hard taco shells are okay to eat) but they gave me a big flour tortilla burrito and I didn't check the bag before driving off. I was so hungry I ate it... so I guess we will see if a huge flare up happens. In fact, I felt the itching within 2 hours....

If you have DH excluding fast food like Taco Bell is probably a necessity...just sayin'! 😉

[Hb333]

9 hours ago, Scott Adams said:

If you have DH excluding fast food like Taco Bell is probably a necessity...just sayin'! 😉

Yeah, the corn shells didn't seem to do anything to aggravate and I had eaten that one other time since trying to be gluten free. My job is very on the go so being gluten free is quite challenging.

I had been on doxycycline for 2 months to clear acne on my neck and back. In that time I'm thinking the rash was also under control because it basically disappeared. I ran out of it right before Thanksgiving and had read you shouldn't be on it long term anyway. Well the acne is coming back on my neck and the rash on my back is too. Does Doxycyxline affect DH?

When I first started getting this 13 years ago, the itch was awful. Skin felt numb and tingly and like the itch couldn't be relieved. Now I've learned to live with it, or it's more of a 5/10 most of the time, but way worse at night and affects sleep. And the bigger bumps itch worse. I'll get them in the middle of my back and can't reach them. 

Here's a big itchy one that showed up yesterday about an inch away from the negative biopsy site (where there were tiny blisters adjacent when the biopsy was done). I put hydrocortisone on it and it's still as big as it was last night. You can make out a tinier one next to it. The other pics are the ones that showed up last week and they're fading and one in the middle of my back that showed up a couple days ago. Side note these huge bumps rarely show up, they're usually teeny blisters. The handful of other times big bumps like this showed up, I saw general doctor types who said "If you think it's shingles we will give you acyclovir." At time time I thought it was recurrent shingles as was originally diagnosed. Or one doctor said "bug bites" but I got acyclovir. It didn't ever do anything to help. 

Being that I have that one gene I think it has to be a mild celiac/DH reaction.... or something else entirely that doxycycline can treat to some degree. 

 

 

[Scott Adams]

Is the Doxycyxline gluten-free? Some meds use wheat starch in the pill, you can check this here:

https://dailymed.nlm.nih.gov/dailymed/ 

Although some foods at Taco Bell may be gluten-free, the risk of cross-contamination is still high. If you must eat out consider GliadinX (a sponsor here) or another AN-PEP based enzyme as they've been shown to break down small amounts gliadin in the stomach before it reaches your intestines--as you might encounter with cross-contamination.

[Hb333]

On 12/13/2022 at 12:09 PM, Scott Adams said:

Is the Doxycyxline gluten-free? Some meds use wheat starch in the pill, you can check this here:

https://dailymed.nlm.nih.gov/dailymed/ 

Although some foods at Taco Bell may be gluten-free, the risk of cross-contamination is still high. If you must eat out consider GliadinX (a sponsor here) or another AN-PEP based enzyme as they've been shown to break down small amounts gliadin in the stomach before it reaches your intestines--as you might encounter with cross-contamination.

I don't know if the doxycycline is gluten free. My skin was the clearest it's been in... ever... the 2 months I took it.  Rash was only a few teeny blisters and the acne on my neck and back cleared. Just before Thanksgiving I went off of it, rash is back and acne is popping up again on neck. New blister today, best pic I've gotten of their usual appearance. I did have two or three bigger ones about the size of a mosquito bite recently, but they're usually parenting like this for the last 13+ yrs. This one is on my left ribcage, blister just a bit bigger than a pinhead. Sometimes they are clustered, sometimes they're alone with others nearby. A little blister with a red base. Some will crop up and fade only to have others crop up. 

The dermatologist had suggested it could also possibly be something called "autoimmune progesterone sensitivity" so I'm waiting to get an allergy test. The treatment for that is a hysterectomy but I think would rather be gluten free. 😮

[Scott Adams]

It would be a good idea for you to search your prescription at that link and verify that it's gluten-free, especially since you have DH.

[Championjaidlyn]

HEY HB333!!

Did you ever find out what you had??? 

I’ve been having those same things for 10 months almost a year now!! but I’ve also been in extreme agonizing hell!! 

With those bumps, I’ve become itchy everywhere to the point we’re not be able to do anything but itch and cry for hours!! they have gotten so bad they’re all over my body head to toe. I have stuff coming off my scalp and stuff coming out of my ears and all my nails are brittle and breaking and I’ve got stuff under my nails and it’s even in my nose and my eyebrows, and I don’t know what to do!!!

 

But I’m having those little bumps just like you and white stuff around them and then my hair follicles have white stuff on them and my skin is breaking open and leaking white stuff and my dermatologist in the ER won’t help and I don’t know what to do!!! nobody knows what it is!! I really need help!! did you ever figure out what it was???