Dermatitis Herpetiformis rash spreading even after cutting out gluten.

[hannah joel]

I'm really hoping you guys can help me here! I've been in and out of hospital since 2019 with suspected crohns disease as I had an inflamed intestine. Not much help or advice from doctors and after a recent out patent appointment a doctor who knew nothing about me said I had Ibs caused by inflammation.

 

However for the last year and a half I have suffered with leaky gut, bloating,gas,diarrhea you name it. Doctors haven't done any tests at all. Over the last year I had what I thought was mild excema.. but it has got so bad that for the last 6 months I have been prescribed strong steroid creams and hydrocortisone... one doctor even said I could put it on my eye lids!! Due to pandemic I have only seen one doctor who didn't look close enough at my rash. I refuse to take any more steroid creams as they are so bad for you long term and I have been on them for over a year.

 

Over the last 3 weeks my rash has turned into tiny tiny round blisters that weep and then crust over. Before they even appear i can feel the itch and burning. They are on my arms, legs, groin, torso, stomach and chest. They are symmetrical on both sides..  which led me to dermatitis herpetiformis which also links into my gastro issues..  being thought to have crohns but undiagnosed. I have had colonoscopy years ago that came through all clear but never the gastro camera.

If I have alcohol, dairy, gluten or sugar my rash gets very red and inflamed. I can feel the bumps appearing. They get sooo itchy at night im scratching myself to death. At the moment all I am taking is antihistamines and cetraben cream. I dont want any more steroids damaging my skin and immune system. Does anyone relate or think it is celiac? I know you have to have gluten to have celiac test and I refuse to do that to my poor body that is suffering so much.

Thank you for reading if your still here and would love any suggestions or help. I've cut out night shades but still eat egg and almond milk.

[Scott Adams]

it definitely sounds like you could have celiac disease and DH, based on the symptoms you’ve described. But the only real way to know is to get tested. Have you asked your doctor to give you a blood panel test for celiac disease? It would also be a good idea to see a dermatologist and get a biopsy on what sounds like the DH blisters. If you can’t afford tests or your doctor won’t allow them, I guess the next step for you would be to just try a gluten-free diet and see if your symptoms respond to it.

Keep in mind that you need to keep eating gluten daily to be tested for celiac disease.

[GFinDC]

Hi,

DH is hard to get rid of without a very strict gluten-free diet.  But even then it takes time, months or more.   Some people with DH say they have better results by cutting out foods with iodine in them.

[Nathan-PA]

Before I knew I had celiac, I would get DH all the time on my elbows, knees and stomach. It drove me absolutely insane at night. I had never experienced an itch so intense. I tried all the steroid creams and nothing worked. One night I woke up and the itch was so bad I went to my medicine cabinet, looked around and saw a beautiful tube of BenGay. It was a godsend! The heat of the BenGay immediately took away the itch. After a few nights, the rash started disappearing because I wasn’t digging at it. Now, you did mention your eyelids, so god knows, don’t put BenGay on your eyelids, or genitals!!!! Good lord NO! But on a place like knees and your stomach, it can burn like crazy, but it takes that incredibly intense itch away. In my years of dealing with DH, I found there are two things that make it worse. The first is gluten and the second is scratching it. Since I cut out gluten completely, that rash has never returned. 
In a pinch and when you need sleep, BenGay worked for me!

[Scott Adams]

That is an interesting discovery, and thanks for sharing it! I would imagine that anyone having a DH flare will be happy to discover the BenGay approach.

[Posterboy]

  On 5/30/2021 at 9:46 PM, hannah joel said:

Over the last 3 weeks my rash has turned into tiny tiny round blisters that weep and then crust over. Before they even appear i can feel the itch and burning. They are on my arms, legs, groin, torso, stomach and chest. They are symmetrical on both sides..  which led me to dermatitis herpetiformis which also links into my gastro issues..  being thought to have crohns but undiagnosed. I have had colonoscopy years ago that came through all clear but never the gastro camera.

If I have alcohol, dairy, gluten or sugar my rash gets very red and inflamed. I can feel the bumps appearing. They get sooo itchy at night im scratching myself to death. At the moment all I am taking is antihistamines and cetraben cream. I dont want any more steroids damaging my skin and immune system. Does anyone relate or think it is celiac? I know you have to have gluten to have celiac test and I refuse to do that to my poor body that is suffering so much.

Expand Quote  

Hannah,

I was going to say more.....before I ran out of time responding to other threads...

So I will just say read this great thread on DH and whether DH is really Pellagra in disguise...

And this research about how Niacinamide has been used in the treatment of DH.

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

If itching is your biggest complaint....then taking Niacin will work better/faster to get ride of the itching...

The Niacin flush relieves the built up Histamine causing the itching....

Once the Niacin stops flushing you.....the Itching should improve...

Here is the research about it...

Entitled "Niacin-induced “Flush” Involves Release of Prostaglandin D2 from Mast Cells and Serotonin from Platelets: Evidence from Human Cells in Vitro and an Animal Model"

https://jpet.aspetjournals.org/content/327/3/665

And IF Niacin doesn't cause you to flush.....you have a genetic variant that affects your metabolism/regulation of Niacin.....because most will in higher doses over 50 mg's......especially on any empty stomach.

It is thought that those who don't flush with higher doses of Niacin have a Vitamin dependency that will lead to Mental health problems down the road....

Here is the research on it....

https://scitechdaily.com/some-people-with-schizophrenia-may-simply-have-a-vitamin-deficiency/

But if you are low in Niacin.....you are low in your other B-Vitamins as well because IT is Capstone Vitamin deficiency....

And it is best to take either Niacinamide (Non-Flushing form of Niacin) or take Niacin as part of B-Complex....

Because IF you don't know the benefits of the "Niacin Flush" you won't take it....

And why I have told you in advance.

But frequency is much more   important than the amount you take!

I wrote a blog post on how to take Niacin or Niacinamide for best results....

Maybe it will help you too read it....

But I absolutely have to stop for now!

I have to concentrate more one of the other 4F's in my life...

Farm, Friends and Family, Faith etc.....over the Forum for at least the next few days....and maybe weeks.

First things first as they say!

Good luck on your continued journey.

But I wanted to try and  help you before I took a break from the forum!

For some of the other 4 or 5 "F"s in life.....that I am currently getting an "F" in from my family and friends!

I hope this is helpful but it is not medical advice.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[Anniehall]

Love the niacin pellagra info. Thanks a bunch. 

[Posterboy]

  On 4/30/2022 at 2:47 PM, Anniehall said:

Love the niacin pellagra info. Thanks a bunch. 

Expand Quote  

Annie Hall,

I am glad you found it helpful!  It does might HEART good to hear it help you!

Here is a Posterboy blog post that you might find helpful as well.....

If you find it interesting just search for the Posterboy on Celiac.com and my other blog posts will come up about  how I suffered from Pellagra Sine Pellagra (Pellagra without skin rashes) and Pellagra going misdiagnosed as other GI diseases....

These two should help you.....

quoting from this blog post.....

"The Starfish Story Original Story by: Loren Eisley

“One day a man was walking along the beach when he noticed a boy picking something up and gently throwing it into the ocean (world wide web) …

Son, the man said, don’t you realize there are miles and miles of beach and hundreds of starfish?

You can’t make a difference!

After listening politely, the boy bent down, picked up another starfish, and threw it back into the surf. Then, smiling at the man,

he said "I made a difference for that one.” . . . I hope that one is you reader -- fellow sufferer from a former Pellagra sufferer diagnosed as Celiac disease.

I am that Celiac and Pellagra posterboy walking along the shore throwing starfish back or trying too!

As I am fond of saying “To Educate is to truly free!” Where there is a free exchange of knowledge there is health and peace for one’s soul and body!

Let’s all make peace for to educate is to empower to change

Change is not easy . .. especially if you have a bunker mentality I grant . . . but possible with education for with education comes understanding.

2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;  4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish/sufferer), by the comfort wherewith we ourselves are comforted of God.”

I am glad to be able to help anyone who will listen and here! There is hope!

Posterboy who was  fellow/former starfish (sufferer who could not find help) himself....

Posterboy by the grace of God,