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Help! Could this be DH on the scalp?

FitnessMom

By FitnessMom
in Dermatitis Herpetiformis

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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. 

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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.

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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! 

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      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
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