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
      103,636
    • Total Posts
      918,421
  • Topics

  • Posts

    • Celiac Night Vision
      Scotomas returned for the 7th year on the 24th February despite liver pâté and have varied since with 3 brief gaps. I have always had migraine, latterly occurring more than once a month, usually of basilar or retinal type with aura (but no headache) lasting less than 5 minutes. A recent bout looked like a TIA and led to a CT scan which revealed clear major vessels but old cerebellar infarcts, so maybe migraine accounts for poor memory too. The scotomas are very different from migraine eye symptoms - stationary, irregular in shape and lasting hours. I think food is excluded as the cause but seasonality, gaps, variation with wind direction and rain mean that pollen is still a possibility. Scott Adams did a marvellous thing founding this site so celiacs could enlighten each other. Please post if you have anything like these scotomas!
    • healthy bread recipe?
      Eat what you eat at lunch or dinner.  I am happy with a fried hamburger patty, fish, or chicken (I know it needs to be fresh or frozen for the histamine diet).  Yes, I eat veggies for breakfast!   Wanted to add that I was glutened in July (GI ordered follow-up antibodies testing and it was high)  and it took me 3 months to recover.  Picked up a histamine intolerance and became lactose intolerant again.  Luckily, when I healed, the histamine thing went away (or  Diminished ) and the lactose intolerance resolved.    I was getting hives, rashes and itching (not DH), vomiting, etc.  So, her intolerances may be just temorary!  
    • Could this be celiac or is it really just IBS?
      Are you sure you had the complete celiac panel?  Here are the tests:   -Tissue Transglutaminase (tTG) IgA and (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG -EMA IgA  -total serum IgA and IgG (control test)     -endoscopic biopsy - make sure at least 6 samples are taken   VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.     (Source: NVSMOM -- 😊)   Here is more information from a reputable site (and not just info from a crazy cyclist on the Internet!):   http://www.cureceliacdisease.org/screening/   IBS, in my opinion, means "I Be Stumped!"  It is just a cop out!  So is the "stressed" thing.     I also had my GB out too.   It was a non-functioning (0% per HIDA scan), no stones, and rotting.     You seem to have many celiac disease symptoms.  Verify (obtain copies of your lab tests) to see if you got the complete panel. You might just have had the TTG IGA and TTG IGG tests.  Good for screening but it does not catch all celiacs.  My TTG tests are always negative even on follow-up testing.  The DGP test catches a positive for me.  My biopsies revealed moderate to severe damage.  If my celiac-savvy GI did not order the complete panel, my celiac disease diagnosis would never have been caught.   if celiac disease is really ruled out, research mast cell disorders.  The flushing and GI upset sound familiar!  You can have more than one thing going on!  But I would put my money on celiac disease!            
    • tightness in throat after eating gluten?
      I've noticed that if I accidentally eat gluten, for the next few days I have this tightness in my throat. It feels like my throat is closing. It's not constant, but comes and goes throughout the next 1-3 days. My hands have also been itchy. Is this a normal symptom for celiac or gluten intolerance, or could it possibly be an allergy? I haven't been tested or diagnosed with celiac or anything yet, so I'm still not entirely sure. All I know is that gluten makes me very sick.. But especially with the itchiness and tight throat.. I'm allergic to acetaminophen and my reaction is similar, so it just makes me wonder. What do you think?
    • Diagnosis and Test Results
      I am sorry that you are sick!  😔.  I think you need to find out which celiac antibody tests were given.  Often just the TTG Is ordered for initial screening.  This test catches most, but not all celiacs (like me!)   You also need to see if they gave you the igA deficency test too.   Here are the tests:   -Tissue Transglutaminase (tTG) IgA and (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG -EMA IgA  -total serum IgA and IgG (control test)   -endoscopic biopsy - make sure at least 6 samples are taken   VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.     (Source: NVSMOM -- 😊)     http://www.cureceliacdisease.org/screening/ You can go gluten free, but knowing if you have an autoimmune disease is helpful.  celiac disease is genetic (you have the genes, but so does 30% of the population and that's why the gene test is used only to exclude celiac disease and not diagnose it).   All family members should be tested even if they are symptom free.   I hope you figure it out and I am sorry that you had such a horrible experience.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,726
    • Most Online
      1,763

    Newest Member
    bitsunderground
    Joined