Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Dh On Face?


Porcelina

Recommended Posts

Porcelina Contributor

Is that possible? I'm getting this crazy itchy, red and blotchy rash on my jawline and cheek area. Its starting to peel and just looks disgusting.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



WestCoastGirl Apprentice

Yup.

 

I haven't officially been DXd with DH, but I'm 99% positive that's what it is. I've had it since childhood. It's maddening - both itchy and painful.

 

I often get it on my neck right up near the hairline in the back (that's where I always got it when I was a child and teen) but now I also get it on my face at times. Sometimes I get it on my back and once in a very blue moon, my upper arms.

Link to comment
Share on other sites
nora-n Rookie

Hairline behind ears and in the back here.

 

By the way, Hidradenitis suppurativa is gluten-related too. But there probably has been no reseach verifying this.

Link to comment
Share on other sites
MGR Apprentice

Hi again, I think DH mainly appears around the neck and scull area in the upper body, but I have seen photos of a lady in the celiac.com photo bank who had it in the face I think.... Especially during the second part of the challenge ( w 5- 9) I also constantly had herpes-like ulcers in and around my mouth.. Charming!! But I get something like DH on my upper back legs ... For years I though I was getting chicken pocks constantly...

Link to comment
Share on other sites
nora-n Rookie

There are also some posting on DH forums who have i inside the mouth. Ouch.

Link to comment
Share on other sites
mendylou Rookie

Yup.

 

I haven't officially been DXd with DH, but I'm 99% positive that's what it is. I've had it since childhood. It's maddening - both itchy and painful.

 

I often get it on my neck right up near the hairline in the back (that's where I always got it when I was a child and teen) but now I also get it on my face at times. Sometimes I get it on my back and once in a very blue moon, my upper arms.

It seems to me that my DH usually affects the same area over and over and everyone is different as to their most sensitive areas.  Mine does affect the hairline, around my lips, on chin; but my worst breakout areas are from elbows thru upper arms across my upper back and my buttocks and the backs of my upper legs. I recently visited my son and of course we ate out which I rarely do due to CC. Of course I was assured it was gluten free but you know that is never 100% true.  I am going thru a terrible breakout right now.  By the way I have been gluten free for 3 years and as time goes on the littlest bit of gluten causes a DH outbreak. For me It takes a long time to clear up.

Link to comment
Share on other sites
WestCoastGirl Apprentice

It seems to me that my DH usually affects the same area over and over and everyone is different as to their most sensitive areas.  Mine does affect the hairline, around my lips, on chin; but my worst breakout areas are from elbows thru upper arms across my upper back and my buttocks and the backs of my upper legs. I recently visited my son and of course we ate out which I rarely do due to CC. Of course I was assured it was gluten free but you know that is never 100% true.  I am going thru a terrible breakout right now.  By the way I have been gluten free for 3 years and as time goes on the littlest bit of gluten causes a DH outbreak. For me It takes a long time to clear up.

 

For me, too. I've actually had DH lesions last a couple of months on occasion. Typically, though, they last about a week.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



MGR Apprentice

There are also some posting on DH forums who have i inside the mouth. Ouch.

Thanks so much for pointing this out to me, I actually get them inside my mouth too, especially all over my front and middle palate... Extremely painful when eating...

Link to comment
Share on other sites
squirmingitch Veteran

DH can present anywhere on the body. Just ask me. I've had it everywhere except mucus membranes. Bottom of my feet, hands, fingers, upper legs, lower legs, knees, elbows, neck, scalp, in my ears, in my belly button, on my nipples, collar bone, chest, breasts, stomach & pubic area, shoulders, any area of the back, any area of the arms, armpits, ankles, toes, upper feet & some on my face.

Link to comment
Share on other sites
  • 4 years later...
EChip Newbie

I get DH on my face, always on my top lip- which makes it look like cold sores. I adhere to a very strict gluten free diet, but on the odd occasion I still get “glutened “ there are a few things I have found that help. Stomach enzymes DPP-IV help hugely if I think I may have eaten some gluten (at the time of eating, I take the enzymes). I’m currently having quite a bad outbreak that was actually triggered by some medication I took- I find sudacrem helps to dry out the blisters, I also try a cold compress to reduce swelling, then once healing I use hydrocortisone cream. Green concealer can help cover the redness & then dermablend concealer. 

Hope it helps!

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748

    Aventine
    Newest Member
    Aventine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
×
×
  • Create New...