• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Deaminated Marcus

Dermatitis Herpetiformis Question

Rate this topic

Recommended Posts

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?

 

Share this post


Link to post
Share on other sites
Ads by Google:
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.

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?

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?

  • Upvote 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.

Share this post


Link to post
Share on other sites
Ads by Google:


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:

  • Upvote 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.

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. :(

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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.

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.

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.

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....

  • Upvote 1

Share this post


Link to post
Share on other sites

Ditto what Prickly said.

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.

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.

  • Upvote 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.

Share this post


Link to post
Share on other sites


Ads by Google:


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 :)

  • Upvote 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.

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
      108,922
    • Total Posts
      943,519
  • Member Statistics

    • Total Members
      67,125
    • Most Online
      3,093

    Newest Member
    #celiacmom
    Joined
  • Popular Now

  • Topics

  • Posts

    • LexieA, This thread might help you. You say you never have "heartburn/GERD". You can have something called Silent Reflux. It  could also be NERD. some of these links are in this thread but I will post some releavent information in this reply as well. here is a good overview of the difference in this fox news article. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html but if your throwing up it is probably from Bile Relfux. . . . instead of acid reflux. I actually wrote a blog post on celiac.com about these conditions. the NYTimes article called Bile Reflux a "Shadowland" in Medicine and part of the reason for the title of the post. here is the NYtimes article about some of the issues you are describing. http://www.nytimes.com/2009/06/30/health/30brod.html throwing up is actually a protective reaction. and this normally protect us from poison's or food poisioning etc. but when our biofeedack loop is broken down like having bile in the stomach instead of the small intestine . . . it can be hard to break this cycle. The green portion is probably the bile portion. It is actually very caustic as Plumbago pointed out.  this would/coul scald our insides (lower GI/Small Intestines). Normally stomach acid is neutralized by bile after it leaves the stomach . .. not while in the stomach. I wouldn't never recommend anybody do this on purpose . .. but if you are already puking your food up then simply buy a pH test kit. testing your food/chyme/puke (food outside the body) you will quickly get an idea of how acidic/basic your food chyme (digested food) is. It will almost be a pH of 4.0 or more. the paleo nurse explains this well why strong stomach acid is important to your health. http://thepaleonurse.com/the-truth-about-stomach-acid-why-low-stomach-acid-is-jeopardizing-your-health/ quoting the paleonurse. "In the infinite wisdom of the human body, the stomach was designed to produce the acid that is necessary for proper digestion of food.  When functioning properly, the parietal cells of the stomach secrete hydrochloric acid that bring the stomach pH to a range of approximately 1.5 to 3.0" if it is a higher pH than this you can benefit from taking BetaineHCL to restore your stomach acid to more natural level. . . especially if you are not already taking PPI's since a proton pump inhibitor is lowering stomach acid. .. . by their very ability to cut off almost all stomach acid production. **** this is not medical advice I only know taking powdered stomach acid (BetaineHCL capsules)  helped me. I was not barfing my meals though. . . so your experience my be different. Maybe Ennis_tx will comment because he has some of the same symptom's/issues. But if I was puking I think I would be curios to know what my pH really is? And not Assume? anything at this point. If you test your stomach pH with easy to buy pH strips you will know whether it really is high pH (low stomach acid or a little stomach acid as your describe it) or low pH (really high stomach aid) that is causing the issue's. Once you know for sure you  will know who to go about correcting it. Supplementing with BetaineHCL is fairly harmless . . .unless you have an ulcer. And you will/would probably know it instantly if you take some BetaineHCL and it feels like someone is putting out a cigarette in the middle of your stomach.  It is acid burning your sore/ulcer. thankfully eating protein/food quickly neutralizes/raises stomach acid especially when taken with a glass of water. staying hydrated with a meal also helps improve digestion so be sure to take some water/drink like a tea or juice etc. for example if you want to the BetaineHCL to work properly. Milk has the opposite effect.  If you feel a burning milk can coat the lining of your stomach helping to erase/ease the effect of strong acid. And why people who eat hot **** five alarm peppers aka known as Hot heads keep milk close by if they need to dampen the fire in their stomachs from eating too many peppers. . . . and drinking water can aggravate this practice of eating the hottest peppers you can find. I hope this is helpful. I have rambled on long enough. be sure to read the sickboy user in the medhelp thread of how he helped his GERD/bile reflux. here is medhelp link for easy reference included in the "silent reflux" thread if you haven't read it yet. https://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242?page=1 he was suffering for 5 years and got better so don't lose hope. It can seem very daunting but people on this board do get better. we have used different methods but people do get better. again this is not medical advice just things that have helped me. good luck on your continued journey but it is not a long way back if you know the way. 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 (sufferer still suffering)   which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” posterboy by the grace of God,    
    • LOL sorry but really? You trust that, dominos, papa johns, and pizza hut ALL say they can not 100% guarantee their gluten-free pizza are celiac safe. THEY USE the same prep areas, same ingredient bins, same ovens and in many cases the same cutters and spoons used to spread the sauces and cut the pizza. I doubt the employees would even bother changing gloves between pizzas during rush.   Seriously if you want a gluten free pizza....gut a premade one in the freezer section from UDI, Dayia, RealGoodPizza or a crust from cappellos or califlower foods and make your own....Here please save yourself here is a list. BTW Pizza hut uses UDI crust and just tops them with their sauce etc....CCing in most cases and delivering them. Also the REAL good pizza will mail you cases of their pizzas fully made. Califlour foods and capello will mail you empty crust by the case. SO you can order them if  local stores do not carry them.


      http://udisglutenfree.com/product-category/pizza-crust/
      https://daiyafoods.com/
      http://iansnaturalfoods.com/products/gluten-free-cheesy-french-bread-pizza/
      https://www.geefree.com/collections/all/products/cheese-pizza-pocketshttps://cappellos.com/collections/pizza
      *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you.
      https://realgoodfoods.com/productpage/
      *^Grain Free Pizza They use Dairy Cheese blended with chicken breast to form personal pizza crust. You can order them frozen and shipped to you. NEW PRODUCTS they do Enchiladas NOW
      https://www.califlourfoods.com/collections
      *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy
      http://glutenfreedelights.com/our-sandwiches/
      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
      CRUST MIXES Grain free
      https://www.simplemills.com/collections/all/products/almond-flour-pizza-crust-mix
      https://julianbakery.com/product/paleo-pizza-crust-mix-gluten-grain-free/
    • My MRI has been clear. They did a spinal tap back in May which was also good.  MS ruled out many times. All my symptoms match Gluten Ataxia, but I don't know for sure since I don't have a dx. However, I DO have Hashimotos so at least going Gluten Free is necessary for that. I go to my Rheumatologist on Jan. 30th, 2018. Can a Rheumatologist determine Gluten Ataxia? If so how long should I be back on Gluten for testing?  Thanks for the heads up on Free and Clear products. I will look into that.
  • Upcoming Events