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

Recommended Posts

DutchGirl Apprentice

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

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

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

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

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

pricklypear1971 Community Regular

You should also read the DH forum for tips.

squirmingitch Veteran

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

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

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

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

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

Lady Eowyn Apprentice

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

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

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

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

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

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

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.

  • 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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.