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 Our Content
    eNewsletter
    Donate

Help! Could this be DH on the scalp?

FitnessMom

By FitnessMom
in Dermatitis Herpetiformis

 Share

Recommended Posts

FitnessMom Newbie
FitnessMom
Posted

Help! Type 1 diabetic here with horrible skin rash that itches and burns on scalp and legs only  My Derma said it’s folliculitis. My twin has Celiac. I’ve had this rash since June and have tied soooo many creams, Rx, shampoos. 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Since your twin has celiac disease that means you have an approximately 44% chance of also having it. Have you ever had a blood test for celiac disease? All first relatives of people with celiac disease should be screened regularly for it due to their high risk of also having it. 

I recommend you get a blood screening for it, and you need to keep eating gluten daily until you do this test. Also, would your dermatologist be open to doing a biopsy for DH?

FitnessMom Newbie
FitnessMom
Posted
  • Author
2 minutes ago, Scott Adams said:

Since your twin has celiac disease that means you have an approximately 44% chance of also having it. Have you ever had a blood test for celiac disease? All first relatives of people with celiac disease should be screened regularly for it due to their high risk of also having it. 

I recommend you get a blood screening for it, and you need to keep eating gluten daily until you do this test. Also, would your dermatologist be open to doing a biopsy for DH?

Thanks for the fast reply! I had a blood test and all came back normal. My Derma isn’t opposed to the DH biopsy but he said since I mainly have head sores that he would have to biopsy skin next to the sores ?! So he said on my neck! Have you or anyone seen people with horrible side of the head sores?! I’ve tired everything!!! Ugh. 😕 

trents Grand Master
trents
Posted
(edited)

DH is one of the classic manifestations of celiac disease but your blood test does not indicate you have celiac disease. So maybe your rash is something else. On the other hand, we sometimes see negative antibody test results when people actually do have celiac disease.

Specifically, what celiac antibody tests did your physician run? Many will only run the tTG-IGA instead of a full celiac antibody panel and so will miss some celiac diagnoses. Can you post the results of your blood test with reference ranges to indicate what is normal?

Edited by trents
knitty kitty Grand Master
knitty kitty
Posted

@FitnessMom,

Does your rash get worse when exposed to the sun?

Welcome to the forum! 

CeCe22 Explorer
CeCe22
Posted
On 9/17/2021 at 9:56 PM, knitty kitty said:

@FitnessMom,

Does your rash get worse when exposed to the sun?

Welcome to the forum! 

Heading to beach with family soon. Does DH get worse when exposed to sun?

Scott Adams Grand Master
Scott Adams
Posted

It did for me, as I had it for years in only one small spot on the back of my lower thumb joint. Interestingly, and I’m talking about the mid 90’s here, I had a dermatologist recommend UV treatment as a therapy, which I never tried. I did, however, badly sunburn (imagine the entire area on the back of each of your hands as one big blister!) the backs of my hands on a high mountain fishing trip and my DH went away, never to return. I definitely don’t recommend this approach. I was gluten-free through this time period, but was likely getting contamination when eating out.

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted
11 hours ago, CeCe22 said:

Heading to beach with family soon. Does DH get worse when exposed to sun?

Yes, my DH got worse with exposure to the sun. 

DH is pressure sensitive.  Have you tried sleeping on the other side of your head? 

I would get DH blisters on the palms of my hands after pushing the grocery carriage through the store.  And I would get DH blisters under any elastic in my clothing (bra, undies, waistbands, etc.).  

Also I had Niacin (Vitamin B3) deficiency which results in a rash on head, neck, hands and forearms, and lower legs and feet, as well as weird skin pigmentation when exposed to the sun, which doesn't go away. 

I had Cobalamine (B12) deficiency as well which causes spotted skin pigmentation anywhere skin is exposed to the sun, which doesn't go away either.  This looks different than freckles and the Niacin deficiency pigmentation. 

So splotchy me.  Heavy sigh.  

It's my understanding a dermatologist should sample skin near or next to a lesion, like next to a lesion on your head, not in an unaffected area like your neck.  

I'm Type Two Diabetic.  I found taking thiamine (Vitamin B1) helps with glucose metabolism.  Thiamine also helps Type One Diabetics, too.  Here's a couple of articles....

Thiamine Level in Type I and Type II Diabetes Mellitus Patients: A Comparative Study Focusing on Hematological and Biochemical Evaluations

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7282352/

And... Fact Sheet...

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

Vitamin deficiencies can occur with or without Celiac Disease.

Hope this helps! 

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


  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748
    Chels22
    Newest Member
    Chels22
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...