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Dermatitis herpetoformis

Antonette

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Antonette Rookie
Antonette
Posted

I have this itchy and burning blistering rash on my back my shoulder tummy and all over my scalp and hair line. I went to the urgent care two weeks ago and it wasnt this bad then and the doctor thinks it's contact dermatitis so he prescribed prednisone oral and cream and atarax for the itch it got better after i took the prednisone for five days they healed and turned brown then it started another batch of blisters and it is driving me crazy. The doctor ordered TSH and CBC and they are all normal. He said come back and he will refer me to the dermatologist if it doesnt get better. I haven't gotten a chance to come back yet but i came to this site and thought i Have dermatitis herpetoformis. Any thoughts?? Thank You so much!!!IMG_3592.PNG

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Olivia Newbie
Olivia
Posted

Hi Antonette.

I really feel for you! My advice -- go to a dermatologist that has experience with DH. I went to the university hospital in my city. (google doctors in your area) Ask for a biopsy. Hopefully, you'll get some answers. My DH is a result of Celiac disease. So, I am on a strict gluten-free diet. But even with that I still had horrible bouts of DH. I have been on Dapsone for about a month. I started out at 50 -> 75 -> 100 mg -- life changing, literally life changing. Take care. 

squirmingitch Veteran
squirmingitch
Posted

Antoinette, you need to stay off the steroids both oral & creams because they will skew a dh biopsy. The oral steroids almost always have the result of working but the moment you go off them, there is a backlash from hell with the rash.

You really, really need to see a derm & get a dh biopsy but the biopsy is not taken ON a lesion, it's taken on clear skin ADJACENT to a fresh lesion. Do NOT stop eating gluten until you get the biopsy & it has been performed correctly!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The best thing you can do is read thread after thread after thread in this dh section to learn exactly what you need to do, the problems you will encounter with derms not doing things correctly. 60% of us test negative to the celiac blood panel but it's still worth a shot to get it done. Your PCP can order the panel or any doctor can order it. Again, you have to keep eating gluten or risk a false negative.

Antonette Rookie
Antonette
Posted
  • Author
On 10/28/2016 at 5:03 PM, squirmingitch said:

Antoinette, you need to stay off the steroids both oral & creams because they will skew a dh biopsy. The oral steroids almost always have the result of working but the moment you go off them, there is a backlash from hell with the rash.

You really, really need to see a derm & get a dh biopsy but the biopsy is not taken ON a lesion, it's taken on clear skin ADJACENT to a fresh lesion. Do NOT stop eating gluten until you get the biopsy & it has been performed correctly!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The best thing you can do is read thread after thread after thread in this dh section to learn exactly what you need to do, the problems you will encounter with derms not doing things correctly. 60% of us test negative to the celiac blood panel but it's still worth a shot to get it done. Your PCP can order the panel or any doctor can order it. Again, you have to keep eating gluten or risk a false negative.

 

On 10/28/2016 at 3:34 PM, Olivia said:

Hi Antonette.

I really feel for you! My advice -- go to a dermatologist that has experience with DH. I went to the university hospital in my city. (google doctors in your area) Ask for a biopsy. Hopefully, you'll get some answers. My DH is a result of Celiac disease. So, I am on a strict gluten-free diet. But even with that I still had horrible bouts of DH. I have been on Dapsone for about a month. I started out at 50 -> 75 -> 100 mg -- life changing, literally life changing. Take care. 

Thank You so much for the wonderful support I'm so glad I found this site and I don't feel alone with and I am learning a lot from you guys. I'm thirty years old asian and I don't have any family member with celiac disease. It's not very common in the Philippines. I'm living in the US for ten years now and For a year I've been doing nutritional system that includes 2 gluten free shake a day and a balanced meal for dinner nd two days of cleansing. I feel good and It was working great for me. Then I went on a vacation for a month and started eating all kinds of good food then I developed this rash then I noticed I've been sleeping a lot especially one day when I ate japanese UDON I slept for 5hours 15mins after I ate it. Then I read about celiac Disease and it matches all my symptoms. I went ahead and started a gluten free diet without going to the Doctor First. I'm afraid that If I go to the Doctor He will ask me to go back eating gluten and that will make my SKIN worst I am so scared of getting new blisters

squirmingitch Veteran
squirmingitch
Posted

I hear you Antonette! I wouldn't touch gluten with a ten foot pole! I wouldn't eat the tiniest crumb of gluten for a million dollars. it's not worth it to go through the rash from hell. 

The doc will tell you that you have to be eating gluten & if he doesn't tell you that then he doesn't know what he's talking about.

 

  • 2 weeks later...
Antonette Rookie
Antonette
Posted
  • Author

It's getting bad. I cannot wait to see the doctor :mellow:

IMG_3875.PNG

squirmingitch Veteran
squirmingitch
Posted

Oh my gosh sweetie! I soooooooooooooooooooooooooo feel for you.

 

{{{{{{{{{{{{{{{{{{{{{{ Antonette }}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

 

 

What day is the appointment Antonette?

 

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Posterboy Mentor
Posterboy
Posted

Antonette,

It sounds like the Udon noodles might of got you.

I have no proof of this it is only anecdotal information and might be disputed by people on this board but offer it for your consideration.

Among my friends those who have never had DH? problems before with gluten often after a gluten fast as you say your were on . . . and after a period of time say 6 months or sooo when someone introduces gluten again into their diet they sometimes have had DH symptom's like you are experiencing.

I had a friend who never had a DH reaction before he was diagnosed with a Celiac diagnosis and after a year off gluten tried cheating with a  beer to reward him for his good behavior thinking nothing of it and had the same bad celiac/rash your are experiencing (if indeed your is caused by gluten).

Since you mention Udon specially I know they are an especially rich gluten containing noodle.

Please see this thread link where DH is discussed in depth on this board.

Your experience might not be the same but I hope it is.

Knitty Kitty in this thread treated her DH itching with Niacin.

I will also quote myself in another thread where I summarize how to use Niacin without getting the Niacin flush.

Quoting from the "DH? Mabye thread" search for sbatson1958 to read it all for yourself.

Quoting Knitty Kitty in another response in the thread

"Niacin definitely helped me with the itching!!!"

On 3/3/2016 at 4:15 PM, knitty kitty said:

Niacin definitely helped me with the itching!!!  It has also helped me regain blood sugar control after years of being type two diabetic.  My peripheral neuropathy is going away.  My rashes have cleared.  It's amazed me to feel the difference.  I would be sceptical if I hadn't lived through it myself.  

You might want to consider going dairy free, too.  Gluten and dairy resemble each other to the immune system, so the body may react to both.  One of Niacin's functions is to break down histamine (better than Benadryl).  Another function has to do with nerve health. 

You said you had been diagnosed with depression.  I was, too.  My vitamin D level was extremely low.  After supplementing, the depression lifted.  Again, vitamin D is absorbed in the same part of the small intestine damaged by Celiac Disease.  

Trying to get a diagnosis is frustrating.  I didn't get one for years. I found it more constructive to focus on eating whole fresh foods and avoiding gluten, because that's what you will need to do with a diagnosis. ;)

Hope all this helps!

If it helps one person with DH it (Niacin) should help others with it too!

I would recommend anyone who is dealing with the Celiac rash to read the whole thread.

To keep from retyping it I will quote now about the different forms you might find Niacin in from the same thread "Dh?Maybe"

At this point I need to summarize some important things to know about Vitamin B-3 Niacin.  These points are in the "at wits end with this rash" thread linked above but in case you don't want to follow the link I will summarize some key points that are primary to a good understanding of how Niacin works in the body.

Quoting the posterboy "Most people do not know there is actually two types of Vitamin B3.  Niacin often called (Nicotinic Acid) when sold in the Niacin form and the Amide version (non flushing) Niacinamide.  B vitamins often help with stress.  Vitamin B3 helps regulate histamine (think what cause's us to itch) release's in the body and why people flush with the Niacin form but do not with the amide Niacinamide form."

And why I typically recommend the Niacinamide form if I am helping my friends with acne for example because it is the form most commonly found in creams and lotions.  Find a cream with Niacinamide and it might help the rash.

However It is the Niacin form that is best for this use (itching) because it triggers your histamine stores to flood (flush) out of your skin.

Quoting again from the at wits end thread with this rash " Interesting enough if under a lot of stress Niacin will not flush if your stress is high enough to need that amount of Niacin.  So the flush/hives is actually a natural healthy response but the Niacinamide form does not cause this affect but all the benefits of Vitamin B3 is maintained such as the help with the rash you are experiencing after only a short time (3 to 4 months) using Niacin.

I just wanted you to know to expect it (flushing when using Niacin) so as to not think  you are "allergic" to the vitamin as some people describe it as when they take Niacin in higher dosages not knowing this can happen."

This "allergic reaction" people experience when taking higher dosages 250mg+ is actually your body emptying itself of that dreaded histamine in this case that is causing the crazy itching associated with the rash.

Niacin is widely available in larger doses  but at higher levels can cause the irritating (but natural) flushing (Hives) for the first two to three days of taking higher dose Niacin.

Doctor's tell people at higher dosages (the 250 or 500mg) widely available to take it at night when going to bed and sometimes with Vitamin C I think to limit the flushing affect.

But if  you are careful to titrate it (step up in smaller doses) to 250 mg Niacin either using 100mg or 50 mg dosages.  Doubling with each additional dose. Then the flushing is manageable and in smaller doses (100mg) or less considered pleasant by some and preferable if taking as part of work out program.

that flushing is opening your capillaries allowing more blood flow in (again a natural reaction) and when working out that extra oxygen delivered can help body builders build more muscle and lift more.

But for us  (those who have) DH it (Niacin) over two to three days depletes the stored histamine in the skin eliminating the intense itching like Knitty Kitty found out using Niacin to effectively control her DH itching.

Remember As I often say **************************  this is not medical advice – just one (former) sufferer sharing his experience with other sufferer’s who might not have found as Knitty Kitty quoted in her response to tracym007 the truth about "Niacin, the real story" by Drs. Hoffer, Saul, and Foster,

Linked here again for your reference

On 3/15/2016 at 11:54 AM, knitty kitty said:

I take 250mg with each meal and snacks.  I read a book "Niacin, the real story" by Drs. Hoffer, Saul, and Foster, which advocates high doses.  I started small and am increasing my dosage.  I'm often sceptical of "cure-all," fad diet, latest health craze books, but this one confirms the research I did prior to stumbling across this book.  I have experienced health improvement since beginning to take niacin.  I can't express how big a difference niacin has made to me.  Pellagra is scary. It progresses very subtlely.  I strongly believe that the brain fog we suffer when glutened is due to a drop in niacin. Niacin is instrumental in breaking down and clearing gluten and histamine from our bodies.  

I hope this helpful and as Knitty Kitty said "I hope we all feel better" soon I might add.

If you want to know more about my experience with Niacinamide search for the posterboy on Celiac.com and read either my blog in my celiac.com profile or visit the wordpress website in my profile.

But be mindful if you use Niacin in higher doses that Its (flushing/hives) is a normal natural response the same way some one itches (except it is happening all at once) . . .  but it should go away in two to three days when your histamine reserves are depleted and then the crazy itching should stop soon after. 

You may be a Celiac who has developed Pellagra as Knitty Kitty says in her response to the tracym007 in the "at wits end" thread linked/referenced above

Interesting tidbit about Pellagra is that the name itself means rough/sour skin in Italian and I think this knowledge is now lost on doctor's today!

As Celiac's know quoting Knitty Kitty one more time "Trying to get a diagnosis is frustrating.  I didn't get one for years."

Even doctor's of medicine teach Pellagra is not a "Disease of Today" Open Original Shared Link so when they see (rashes etc, dementia (brain fog knitty kitty mentioned) etc it too often is not recognized in a clinical setting.

I say it is time for a Open Original Shared Link and admit the war on Pellagra is not over as Dr. Heaney suggested.  It has just gone underground.

It should be noted with B-Vitamins as Knitty Kitty takes Niacin more frequent is better.  Beeing water soluble B vitamins should be taking through out the the day for best affect.   With meals and snacks as Knitty Kitty does works best.

2/day works twice as fast as once a day. 3/day works 3 times as fast once a day.  You get the idea.

I hope this is helpful.

*** this is not medical advice just my own personal experience like Knitty Kitty from research and having tried it myself.  I tell those who will listen."

It is me again Antonette.

I hope you have the same experience as Knitty Kitty and it helps your itching.  She (Knitty Kitty) saw relief from the itching by taking Niacin after less than a week because as I said above in small 100mg worked up to 250mg at a time over a couple days releases our histamine reserves thus relieving the itching from the rash if it is Dh or Pellagra Co-Morid if you have also developed it in addition to your Celiac/gluten allergy.

Why there is not much research on this topic.

The International Journal of Celiac Disease does note that Pellagra and Celiac do occur in the same patient.

See this link where they discuss how often this occurs.

Open Original Shared Link

See paragraph 3 where they discuss Pellagra Co-Morbid in a Celiac diagnosis.

I don't know if this is your case or not Antonette but it certainly worth a try.

I hope/pray you find something that helps you and sooooooooooon!!!!!!!

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

Posterboy by the Grace of God,

 

 

Antonette Rookie
Antonette
Posted
  • Author

It is getting really bad and nasty those little dots are getting bigger and flatter and they are interconnecting forming like a continent I am waiting for the biopsy result. Doctors are starting to think it is pemphingus. I don't know if thats better than dermatitis herpetoformis All i Know is I need Dapsone Asap. 

IMG_3962.PNG

squirmingitch Veteran
squirmingitch
Posted

OMG you poor dear! I am crying for you.

 

{{{{{{{{{{{{{{{{{{{{{{{ ANTONETTE }}}}}}}}}}}}}}}}}}}}}}}}}

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