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

Positive Test....skin Symptoms Not Typical


brizzo

Recommended Posts

brizzo Contributor

I guess this is more of a venting on my part....but I was diagnosed by enterolab this month. Here's my gripe. I have no intestinal symptoms. I only have DH "like" symptoms on my scalp; NO WHERE ELSE!. Only my scalp. I have been on a gluten-free diet for two months with pretty damn good results. I still have the occasional "blister" here or there. But it has been due to CC at wendys , ignorance about certain alcohol products, and other foods. (still new at this =) I will not take meds. I DO NOT trust 1/2 the meds out there, and refuse to poison my body by taking them.

I guess my question is ....has anyone else heard of someone having DH on the scalp only, or am I just a freak? :ph34r: Just curious. And yes, I tested positive at enterolab. My results are below.


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

I used to have a rash on my scalp that I never had tested for being DH. I asked my doc about the rash (she also practices holistic medicine along with conventional). She said it was from the constant inflammation in my system ... my adrenals were fatigued and unable to come up with the hormones necessary to heal the rash. Now that I'm addressing my adrenal fatigue, the rash is clearing up.

frenchiemama Collaborator

I know that it is fairly common to get DH on the scalp. Only on the scalp? Not sure, but everyone is different. DH is always supposed to be symmetric, but I have one spot that isn't (I got it on both hands, both knees, both ankles, but only one elbow). Not typical, but not impossible either.

  • 2 weeks later...
almostnrn Explorer

I had spots on my scalp until I gave up my beloved Aveda shampoo which was pretty much like liquid gluten, lol. I have not heard of anyone just getting it in one area but then again if I had a nickel for every time a dermatologist told me "you can't get DH there" I'd be a millionaire. Be happy the diet is working and don't press your luck...I have found mine got worse after time.

mouse Enthusiast

One of my doctors was telling me that a friend of his in medical school got diagnosed with Celaic Disease and the only thing he had was DH on the scalp and only the scalp. He had no symptoms at all. Just the terrible rash and itching on his scalp.

  • 2 weeks later...
dyankeetoo Newbie

Hi, Brizzo: I'm pretty much a lurker here, but I have to tell you...I've had the scalp problem my entire life, and I'm 59 years old. Only recently developed the blisters all over, and I haven't had the biopsy yet. I'm betting on a positive, though, as I've been gluten free for three months, and I've begun to see a positive difference in my energy level and...HOORAY the constant nausea and stomach aches, running like a crazy person to the jon are gone (except for one instance when I made meatloaf with corn chips and paid dearly). Apparently I'm one of those who can't tolerate corn either.

Do the scalp itchies clear up when you take antibiotics? Mine do, but come right back as soon as I've finished the course. Thank goodness I have thick hair.

Best,

Laurie

  • 3 weeks later...
bwizzle Newbie

Hey brizzo and anyone else experiencing problems here. I want explain my situation. I am a 22 year old male and have been experiencing scalp "pustules" going on 5 years now. I have been to numerous doctors and had every test done (blood and biopsies) and yet to find a solution. Antibiotics work and when i go off of them, my condition returns. I am seeing an allergist and he bleieves its a food allergy. After doing some research I believe it is DH. I have just started my gluten free diet along with a detox system. I do no really have any other symptoms besides these itchy bumps on my scalp. Also my skin gets really itchy and I was wondering if anyone else experiences this. And the symmetric thing, yes it forms symmetrically only my scalp. I am sick of seeing new doctors and putting antibiotics in my body. I went through college with this plague and i know how hard it is to deal with. I am going to give this diet a shot because i am at the end of the road.

Brad


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



Celiac.com Sponsor (A8-M):



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. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

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

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    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

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.