Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dh - Never Heard Of It Before

JLorenzo77

By JLorenzo77
in Dermatitis Herpetiformis

Recommended Posts

JLorenzo77 Newbie
JLorenzo77
Posted

Hi guys - New to the board!  Been dealing with just a couple of bumps on my upper arms since early fall, 2013.  Initially I thought it was MRSA or something from the gym.  They looked like bug bites but eventually became weepy, almost pimple-like in appearance.  Dermatologist treated me with topicals, then oral antibiotics and finally prednisone.  The prednisone helped a little, but didn't resolve them completely.  In fact, I developed a few more bumps that eventually became weepy and crusty, almost resembling eczema on my back, elbow and wrist.

 

The only thing that makes me wonder if this is something else is because there are only a few, isolated bumps and it seems like DH is more of a rash.  Anyway, I am going to ask my dermatologist for a biopsy when I see him on Friday.

 

Curious to see what others are thinking!

 

-Josh

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Hi Josh,

You really haven't given us much info. about how the rash reacts, what it feels like, when it itches if it does itch, etc.... so there's nothing we can sink our teeth into to give you any feedback about.

 

It never hurts to rule out dh if you can get the derm to biopsy it properly. Ahhh, but that's the hard part.

DH BIOPSY INFO.
 
http://www.celiac.ni...Dermatitis.aspx  forget what they say about it's location on the body --- that's bunk --- we who have it can tell you it appears anywhere it darn well pleases & while it does appear where they say that's not the ONLY places it appears & not necessarily the first or most frequent places. You might want to print a copy & take it to the derm.
 
 
 
 
 
 
 
And the rash does not ALWAYS present as water filled blisters --- that happens when you've got it BAD. 
Open Original Shared Link
 
The use of either topical or oral steroids within 2 months prior to the biopsy will make the biopsy negative whether it truly is negative or not.
 
Also, one MUST be have been & continue to be eating a full gluten diet or outhe biopsy will turn up negative. If one is "gluten light" the biopsy will turn up negative. You can't just eat a few crackers the day or for a few days before the biopsy --- that will not work. YOU MUST BE EATING A FULL GLUTEN DIET.
JLorenzo77 Newbie
JLorenzo77
Posted
  • Author

 

Hi Josh,

You really haven't given us much info. about how the rash reacts, what it feels like, when it itches if it does itch, etc.... so there's nothing we can sink our teeth into to give you any feedback about.

 

It never hurts to rule out dh if you can get the derm to biopsy it properly. Ahhh, but that's the hard part.

DH BIOPSY INFO.
 
http://www.celiac.ni...Dermatitis.aspx  forget what they say about it's location on the body --- that's bunk --- we who have it can tell you it appears anywhere it darn well pleases & while it does appear where they say that's not the ONLY places it appears & not necessarily the first or most frequent places. You might want to print a copy & take it to the derm.
 
 
 
 
 
 
 
And the rash does not ALWAYS present as water filled blisters --- that happens when you've got it BAD. 
Open Original Shared Link
 
The use of either topical or oral steroids within 2 months prior to the biopsy will make the biopsy negative whether it truly is negative or not.
 
Also, one MUST be have been & continue to be eating a full gluten diet or outhe biopsy will turn up negative. If one is "gluten light" the biopsy will turn up negative. You can't just eat a few crackers the day or for a few days before the biopsy --- that will not work. YOU MUST BE EATING A FULL GLUTEN DIET.

 

Squirm - Thank you so much for taking the time to respond and by providing such helpful links!  The bumps are constantly itching.  Keeping bandaids on them seem to reduce the amount of itch at times.  The rash seems to manifest itself in phases.  It seems to be a small minor bump which eventually grows a little, forms a puss-filled head, pops, seems to heal and then starts over.  But I only have two on one arm and one on the other.  I do have some of the GI symptoms associated with Celiacs but no doctor has ever thought to investigate that and it doesn't affect my quality of life.  I just feel like you are your own best advocate.  The issue with dermatological issues is that many of them resemble each other!  So frustrating!  The photos most of you have been kind enough to share looks like actual rashes.  Mine just looks like a couple of bumps.  I made an appointment for Friday so I may suggest the biopsy.  Thanks for the tips regarding prepping for biopsy!  Helpful!

squirmingitch Veteran
squirmingitch
Posted

YVW Josh.

Itchy is what dh is for sure. It could be early dh --- then again.....

If you can talk the derm into a biopsy that would be great. Mention the GI symptoms but also mention that those with dh tend to have fewer, milder GI symptoms & also test false negative on the celiac blood panel 60% of the time.

 

It wouldn't hurt if you read this thread in it's entirety following the links contained therein.

https://www.celiac.com/forums/topic/105888-newbie-feeling-desperate-how-long-before-i-see-improvement/

 

Let us know what happens.

JLorenzo77 Newbie
JLorenzo77
Posted
  • Author

YVW Josh.

Itchy is what dh is for sure. It could be early dh --- then again.....

If you can talk the derm into a biopsy that would be great. Mention the GI symptoms but also mention that those with dh tend to have fewer, milder GI symptoms & also test false negative on the celiac blood panel 60% of the time.

 

It wouldn't hurt if you read this thread in it's entirety following the links contained therein.

https://www.celiac.com/forums/topic/105888-newbie-feeling-desperate-how-long-before-i-see-improvement/

 

Let us know what happens.

The itch is ridiculous!!!  Trying to explain it to my wife is impossible.  I want to powerwash my arms!  Haha!  I will read the link and keep you all posted.  I have to say that finding this page was a fortunate turn of events for me!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748
    volivier
    Newest Member
    volivier
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.