Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Dermatitis Herpetiformis Question
0

22 posts in this topic

I'm on a gluten challenge till I get seen by a gastroenterologist.

 

Sometimes my buttocks gets very very itchy and pimply in the evening.

Then it's normal again the next day.

 

Is this how Dermatitis Herpetiformis behaves in the beginning stage?

 

Or is it full on - all the time?

 

0

Share this post


Link to post
Share on other sites


Ads by Google:

That's not how mine behaved. I also wouldn't say dh is full on all the time ---- not in the very beginning anyway.

0

Share this post


Link to post
Share on other sites

Thank you for replying squirmingitch.

 

Can the biopsy be taken only during the rash or can it also be taken when it clears?

0

Share this post


Link to post
Share on other sites

The biopsy really can only be taken during the rash b/c the biopsy HAS to be taken from CLEAR skin ADJACENT TO an active lesion. Read some of the posts on here in the dh forum. It will give you links to the proper way to take a dh biopsy AND PERHAPS MORE IMPORTANTLY how many derms screw it up even though they act like they know what they're doing! YOU need to be your own advocate & look over their shoulder & make sure they get it right or else you'll be frustrated & wondering perhaps forever. You don't want that! You have to be firm & print out how to take a dh biopsy the proper way & TAKE IT WITH YOU & SHOW IT TO THEM. Once in a while you come across a derm who knows what they're doing but the odds are against you okay? So take care of yourself by making sure it's done correctly the first time around.

 

AND I CAN'T STRESS THE FOLLOWING ENOUGH! 

DO NOT stop eating gluten until the biopsy results are back. DO NOT eat gluten light until the biopsy results are back. DO NOT think you can go gluten-free & then eat some crackers a couple days before hand --- it will not work. And all of this applies until ALL testing is complete & results are in & you KNOW that everyone did everything right if you are going to have a celiac blood panel &/or endoscopy. And I will repeat what I've told a 1,000 times ---- celiacs with dh test neg. on blood & endoscopy more often than not. The antibodies are in our skin & that's what causes the high rate of false negatives on those tests.

 

AND topical steroid use or oral steroid use within roughly 2 months prior to dh biopsy will yield a false neg. biopsy. And I don't care WHAT the doctor says contrary to that.

 

Good luck & we sincerely hope you do not have celiac disease & especially dh!

But if you do --- we're here! Okay?

1

Share this post


Link to post
Share on other sites

Thank you for the detailed answer squirmingitch.

 

I'm still eating the bread daily, about 6 slices and I'm feeling the fibro pain.

 

I did the Celiac panel and it came back negative, (I was gluten free for 2 years).

But when I read Celiac books in Dec 2010, I saw my childhood and teens medical problems in the chapters.

 

The rash is so intermittent that it's going to be pretty hard to see a doctor about it.

 

Yes, that is the most frustrating thing... having to educate our doctors (FOR FREE).

 

Thank you for the taking the time to answer.

0

Share this post


Link to post
Share on other sites




Oh you're most welcome Marcus!

Yes, you're right. And you had been gluten-free for 2 years so that didn't help your blood panel. IMHO you would need a super long gluten challenge to overcome the 2 years PLUS the (if you have dh) dh factor making it negative. And still you could turn up neg. on the blood. The problem is, if you have dh then you're probably going to have to wait & continue with eating gluten until the rash goes bonkers. And the rash can go bonkers all at once. Then you're in BIG trouble. My rash were here & there & here & there for years & then one day it went ever loving NUTS. Now remember that dh deposits the antibodies under the skin. Once they've been deposited you have to suffer for could be 2 years or even longer. You might be able to take Dapsone but that's not guaranteed --- plenty have not been able to tolerate Dapsone so you can't count on Dapsone being your answer.

All this is sort of a long way of saying ----- if gluten is hurting you then do you really need an "official dx"? You don't need anyone's permission to go gluten-free. You know that -- you went gluten-free before for 2 years. So unless there is some other valid reason that you must have that official dx then why not just save yourself some grief & go gluten-free now & never look back?

I can tell you that full blown dh is a BAAAAD MUTHA & I would tell anyone that if they can avoid it getting to that full blown point then do so without hesitation! Take a look in the dh photo bank at my photos & some of the others who have it really bad. You don't EVEN want to go there. If I could save just one person from experiencing the hell I've been through then I would dance with joy! There's a reason dh is called the suicidal itch & I know why. :(  :unsure:  :wacko:

1

Share this post


Link to post
Share on other sites

Hi Marcus,

 

There is a member GfreeMo who developed DH after going back on gluten for 2 years.  She has been having a hard time with it.  It's not a fun condition.  People with DH sometimes avoid iodine when they are flaring.  And flares can last a while.  Listen to Squirmy, she knows what she is talking about.

0

Share this post


Link to post
Share on other sites

Thanks GFin DC. :)

Yes, GFreeMO is having a rough time of it --- a really rough time. :(

0

Share this post


Link to post
Share on other sites

Thank you squirmingitch and GFinDC,

 

I'm sorry to hear of all the suffering from the full blow HD rash.

 

I'm itching this morning but I can't see well back there even with a mirror.

 

Can my PCP take a sample next to the tiny spot or is it only a dermatologist that can do it?

 

Does he put the sample in a sterile pee container or does it have to be put in a special solution?

 

Do I have to have a full blown wide area rash or can he take a sample next to just one itchy red spot?

 

How big should the skin sample be? 1/8 of an inch ok?

 

I failed the blood test so this might be my only chance to get diagnosed.

0

Share this post


Link to post
Share on other sites

Thank you for the links. I read the first batch.

I read how deep they have to cut so that means it has to be a dermatologist.

It's not easy to see one where I live.

0

Share this post


Link to post
Share on other sites

Squirmingitch is totally on the money here.  If I were you, I'd give up the gluten this minute and never look back.  Forget about a diagnosis and just run from the gluten.  RUN, my friend!  My sister just told me that she's starting to get a rash on her behind and with our family history of celiac and DH I was kind of surprised she hadn't already quit eating gluten.  I mean, she's SEEN my skin and that should be enough to scare most people off gluten.

 

It's taken 26 months gluten-free so far to start seeing and believing that my skin is finally healing.  Lots of flares still, but iodine is a big factor in that..

 

Good luck to you in whatever you decide to do.

0

Share this post


Link to post
Share on other sites

My Dad has a mysterious rash - had it for decades.

You think he's stopped gluten since I figured out where my rash came from?

Ut uh. He isn't in enough pain and may never be.

0

Share this post


Link to post
Share on other sites

I saw my PCP. 

The itchy buttock rash was gone when I saw him.

He thinks the rash would last longer if was Dermatitis Herpetiformis and not come and go so fast.

0

Share this post


Link to post
Share on other sites

I saw my PCP.

The itchy buttock rash was gone when I saw him.

He thinks the rash would last longer if was Dermatitis Herpetiformis and not come and go so fast.

Completely untrue, in my experience, at the beginning.

Beware - when it decides to stay, it's hellish.

That said, it wouldn't disappear daily. It would stay a week or two, vanish. Then 6 months, vanish. Then, it didn't go away....

1

Share this post


Link to post
Share on other sites

Ditto what Prickly said.

0

Share this post


Link to post
Share on other sites

Thank you pricklypear and squirmingitch,

 

Yes I scratched it in the evening  and then it's gone the next day for a for a week or longer.

0

Share this post


Link to post
Share on other sites

Thank you pricklypear and squirmingitch,

Yes I scratched it in the evening and then it's gone the next day for a for a week or longer.

You know, it doesn't have to be DH to be a gluten related rash?

There are hundreds of gluten reactions - this may be yours. It just may not be DH.

1

Share this post


Link to post
Share on other sites

Well said Prickly. 

It can be soooooo hard to get a dx of celiac disease --- you know that Marcus, you've been reading on here long enough to know that. It is 10x harder to get a dx by way of dh. And if you don't get a dx of dh then they aren't going to dx you based on any other rash.

I'm going to say this one more time & then I will not harp on it again Marcus. You went gluten-free before for 2 years & you were so much better off. If gluten hurts you then don't eat it. Period.

Now, I will not say that again & I will support whatever decision you make & try to help in any way I can.

You could be non celiac gluten intolerant. Still means to stay away from gluten. Research into NCGI is in the infant stages --- who knows what they will find out in the future as far as that goes.

0

Share this post


Link to post
Share on other sites

Hi Marcus

I don't have DH, but following negative blood tests, biopsy and genetic test I have been declared NCGI. I have been strictly gluten-free since September 12, and clean wholefoods, paleoish,dairy free since. January 13. I have just got better and better, with a host of symptoms clearing, including eczema and random rashes. My skin is much softer too.

Just sayin :)

1

Share this post


Link to post
Share on other sites

Thank you pricklypear and squirmingitch,

 

Yes I scratched it in the evening  and then it's gone the next day for a for a week or longer.

 

 

Hmmmm, from my personal experience, I've not had anypart of this rash disappear overnight!  Maybe you have a gluten allergy, not DH?  

 

Btw, were you considering doing a biopsy on yourself?  I really don't think that would be a good thing to do.  You were asking about how deep the biopsy needed to be, how large and what type of container to use.  

 

I'm concur with the other ladies . . . eat gluten free and if the rash goes away, don't worry about a biopsy.   Hope all works out for you.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,341
    • Total Posts
      920,478
  • Topics

  • Posts

    • As a GI specialty nurse who also has celiac I can tell you that it can not be diagnosed by CT and rarely unless you have severe disease can it be diagnosed by colonoscopy.  Those that have had it diagnosed by colonoscopy have such because their MDs were above to get into the small bowel from the bottom and take biopsys.  Celiac damage is not seen in the large intestine.  Also many people do not have diarrhea, many have constipation or a 50/50 mix between the two.  Celiac has 300 connected symptoms and sometimes no symptoms at all.  It's called the " great pretender" because of this.
    • Okay, thanks! I am 24 but my husband and I don't plan on having kids. However, the more I thought about it, the more I think I should get one for my brother's sake. Especially after my doctor's office called this evening to say my bloodwork tested positive for Celiac. Guess I will be on this forum longer than I thought!
    • You just got diagnosed Celiac and are wondering how serious this really is. What if there is just a little gluten in your food? What if you use the same toaster for your gluten-free bread as your wife's/husband's regular bread? What if those french fries are gluten-free but they fry them in the same fryer as those nice gluten coated onion rings? View the full article
    • Hi, I've never been on a forum before but thought I might find some answers here.  I have never been tested for celiac but a nurse practitioner I saw a few years ago told me she thought I would benefit from a gluten free diet.  At first, I thought I could never do this but after some encouragement I did try.  I did feel much better after going gluten free.  She never tested me for celiac. I turned 50 years old last year and I had a colonoscopy for the first time and had three polyps removed.  The surgeon said that my colon looked like I was a chronic laxative user.  I haven't used a laxative for a very long time.  I was at the time drinking a natural tea to help me to have bowel movements.  Before starting the tea I had always had difficulty with bowel movements and never had them once a day but with the tea I was able to go once a day. At the end of last month I developed severe pain after I would eat (I had my gallbladder removed at the age of 19).  One night the pain got so bad my husband had to drive me to the ER.  My liver functions were high as well as a few other things.  They did a CT scan of my abdomen and pelvis that showed wall thickening of my transverse colon and minimal irregularity involving the transverse colon.  My descending and sigmoid colon were collapsed.  There were a few tiny mesenteric lymph nodes present on the right.  They diagnosed me officially with colitis but said that most likely I had a gallstone (even though I don't have a gallbladder) that had come from the liver and had gotten stuck in the common bile duct (it did not show up on the CT scan).  I usually have a high ferritin level too.  I've been home from the hospital stay for about a month now and still have tenderness in the epigastric area. Some of this may not have anything to do with celiac but was wondering if anyone has been diagnosed with celiac by CT scan or colonoscopy or if anyone has had the same problems that I have had and found out what has caused it.  I cannot see the gastroenterologist who saw me in the hospital for a couple of months.  Can you have celiac and not have diarrhea as I am just the opposite? Any help would be appreciated!  Thanks!  
    • I had an acne flair up after going gluten free but it ended up improving and some long-term back acne I had been dealing with actually went away.  I think going gluten free was a shock to my system and at first I actually felt worse but after about a month things got better. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,411
    • Most Online
      1,763

    Newest Member
    Aly46
    Joined