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 Of The Scalp

DutchGirl

By DutchGirl
in Dermatitis Herpetiformis

Recommended Posts

DutchGirl Apprentice
DutchGirl
Posted

I am newly diagnosed with celiac disease. I have had DH on my scalp for a few years but I didn't realize that's what it was until I was diagnosed recently. I have given up gluten but is there anything I can or should do to help heal my scalp?? It is so itchy, flaky, and burning, I would love some relief!

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Id start with ensuring your hair products are gluten free and don't irritate your scalp for any other reason. Even though topical gluten isn't supposed to cause DH, many of us find better results when we do.

It's difficult to moisturize the scalp (compared to an arm) but I found my DH needed lotion a few times a day. I used Vanicream. In short, be nice to the rash.

I'm sure others here have dealt with it on the scalp. I haven't. I'm sure they'll chime in.

DutchGirl Apprentice
DutchGirl
Posted
  • Author

I'm finding that anything to moisturize with will be difficult, I have thick hair down to the middle of my back. But with all of the itching, there are days I just want to shave it all off!! :)

pricklypear1971 Community Regular
pricklypear1971
Posted

If you can do it every few days how about a scalp massage with a pure oil like almond, jojoba...?

I'd think the biggest thing would be to not use styling agents, shampoos or conditioners that irritate it. And I have no idea what that would be for you.

DutchGirl Apprentice
DutchGirl
Posted
  • Author

I will give it a try! I need some relief! Thank you!

pricklypear1971 Community Regular
pricklypear1971
Posted

You should also read the DH forum for tips.

squirmingitch Veteran
squirmingitch
Posted

I agree with what pricklypear said. I also have long hair down to my legs & BAD dh in my scalp. I know the feeling of wanting to shave it all off! This is going to sound gross & it is gross (at least to me) & it's very difficult to stand doing this BUT I have found that the longer you can possibly go without washing your hair the better off you will be when you have the dh in your scalp. When that skin is trying to heal it's best to not abrade it by shampooing even gently as the new skin is so fragile & thin. If you can go 3,4,5 days or as long as you possibly can then it gives that new skin a chance to thicken up & not bust open again. When you shampoo, do not use your nails --- only the fleshy fingertips gently. And for heavens sake do not let the brush bristles run across your scalp & tear it up. Be gentle, be very gentle.

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

Celiac.com Sponsor (A8-M):


DutchGirl Apprentice
DutchGirl
Posted
  • Author

I already go about 3 days between washing since my hair is so thick, I'll try going a day or two longer. My scalp is so itchy it's hard not to scratch but I'm trying! Thanks for the advice!!

squirmingitch Veteran
squirmingitch
Posted

It's impossible not to EVER scratch! But we do the best we can right? Right now I feel totally filthy. I haven't washed my hair for 3 days & it's driving me crazy but I am determined to go a couple more. This also allows our natural oils to help our scalp.

Hang in there.

sisterlynr Explorer
sisterlynr
Posted

I already go about 3 days between washing since my hair is so thick, I'll try going a day or two longer. My scalp is so itchy it's hard not to scratch but I'm trying! Thanks for the advice!!

I have used Scalpicin, a product for scalp itch. It does work! I have applied olive oil to my scalp and left it a couple of days. It is hard not to scratch and I have a horrible time trying not to pick at the scabs. :(

GFreeMO Proficient
GFreeMO
Posted

Johnsons Baby shampoo has been helping my scalp DH.  Maybe give it a try.

Lady Eowyn Apprentice
Lady Eowyn
Posted

Hi

Really important to find shampoo/cond that doesn't aggravate it - this might take some time and trial!

Mine is rapidly affected by iodine and I have to limit oily fish and sea salt or it goes beserk. I haven't tried a low iodine diet because of the health benefits of iodine but I do have to watch some things.

DutchGirl Apprentice
DutchGirl
Posted
  • Author

Hi

Really important to find shampoo/cond that doesn't aggravate it - this might take some time and trial!

Mine is rapidly affected by iodine and I have to limit oily fish and sea salt or it goes beserk. I haven't tried a low iodine diet because of the health benefits of iodine but I do have to watch some things.

How long after you eat those things do you start having issues with your DH? How do you link the two together? I'd like to figure out what aggravates mine.

VeggieGal Contributor
VeggieGal
Posted

Hi, I had an incredibly itchy scalp for years and was really embarassed about it. After 5 weeks being gluten free it had almost disappeared then I realised that coffee seemed to trigger odd blisters so Ive cut out coffee for the last 2 weeks and I'm completed itch free :) . Not sure if coffee was an allergy for me or if it was cross reactive or what it was but if you drink coffee (i even seemed to react to decaf), it may worth eliminating for awhile

Lady Eowyn Apprentice
Lady Eowyn
Posted

If I eat sea salt (which sadly, I really like) my DH worsens from about the 2nd day of having it. This applies to putting it in things I'm making and eating too. I don't eat salty things normally but occasionally some sea salt is lovely :unsure: .

When I was eating oily fish (mainly salmon) three times a week it got a lot worse but of course, it was some time before I realised what the problem was.

Can't take cod liver oil (concentrate) either as this makes me hypothyroid too, in about three days.

 

This gives me a double whammy over iodine :blink: although I have never tried to go on the low iodine diet that some have had success with here.

squirmingitch Veteran
squirmingitch
Posted

The sea salt & the seafood including cod liver oil since cod come from the sea are all high iodine. That's why you have a problem with it.

sisterlynr Explorer
sisterlynr
Posted

I am newly diagnosed with celiac disease. I have had DH on my scalp for a few years but I didn't realize that's what it was until I was diagnosed recently. I have given up gluten but is there anything I can or should do to help heal my scalp?? It is so itchy, flaky, and burning, I would love some relief!

 

Scalpicin will take the itch away, immediately.

  • 3 years later...
Antonette Rookie
Antonette
Posted

I have it for a month and it's driving me crazy. i love scalpicin and dermovate for scalp it's painful and feels good at the same time when it's itchy. But it makes my blood pressure go up when inuse steroids so right now i don't know what to do. I have DH all over my scalp and i have crust and snowflakes all over my bed and couch and everywhere. I have it all over my chest and back and arm tummy. 

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Thanks to both of you for your responses! Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In t...
    2. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
    3. lalan45
      - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things ...
    4. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    5. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748
    IleneG
    Newest Member
    IleneG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.