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

What Does Dh Look And Feel Like?

michelley65

Recommended Posts

michelley65 Rookie
michelley65
Posted

About 5 years ago when I started having stomach issues(going through a divorce)I also started getting these little red bumps here and there,usually around my hairline and neck,shoulders and a few on my face.They sort of resembled an acne pimple,but when I tried to squeeze it(sorry..thats gross,I know)it wouldnt burst,but it would eventually open and sting and hurt also.Every one of these would take forever to heal(weeks to a month or more)and then I would end up with a purple scar that takes months to go away.I know what an acne pimple feels like..and this is not it...but I dont know for sure what HD feels or looks like.I self diagnosed myself with gluten intolerance a few months ago,and have read that with celiac disease you can have HD,but what about gluten intolerance?I had two blood tests for celiac and they both came back negative,but I feel so much better since going gluten free.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

About 5 years ago when I started having stomach issues(going through a divorce)I also started getting these little red bumps here and there,usually around my hairline and neck,shoulders and a few on my face.They sort of resembled an acne pimple,but when I tried to squeeze it(sorry..thats gross,I know)it wouldnt burst,but it would eventually open and sting and hurt also.Every one of these would take forever to heal(weeks to a month or more)and then I would end up with a purple scar that takes months to go away.I know what an acne pimple feels like..and this is not it...but I dont know for sure what HD feels or looks like.I self diagnosed myself with gluten intolerance a few months ago,and have read that with celiac disease you can have HD,but what about gluten intolerance?I had two blood tests for celiac and they both came back negative,but I feel so much better since going gluten free.

The tell-tale is the long-lasting purple scar, and the pain. This definitely sounds like DH, and DH is celiac diseae. There are many false negatives on the blood testing. And your positive response to the gluten free diet reinforces this self-diagnosis, especially if you have had no more red bumps lately.

michelley65 Rookie
michelley65
Posted
  • Author

The tell-tale is the long-lasting purple scar, and the pain. This definitely sounds like DH, and DH is celiac diseae. There are many false negatives on the blood testing. And your positive response to the gluten free diet reinforces this self-diagnosis, especially if you have had no more red bumps lately.

So,then you cant have DH with gluten intolerance...only celiac disease?Hhhhmm..makes me wonder just how much these doctors really know about celiac disease.Thankyou for your quick reply.:)

lovegrov Collaborator
lovegrov
Posted

This sounds nothing like my DH. Never had purple scars for one. My DH was like the blisters you get from a burn or poison ivy, not red spots. And VERY, VERY, VERY, VERY itchy. I also never had DH on my face.

Did I mention that it itched like crazy?

richard

michelley65 Rookie
michelley65
Posted
  • Author

This sounds nothing like my DH. Never had purple scars for one. My DH was like the blisters you get from a burn or poison ivy, not red spots. And VERY, VERY, VERY, VERY itchy. I also never had DH on my face.

Did I mention that it itched like crazy?

richard

I can't say that mine are ever itchy...they just hurt and leave a purple scar...that takes forever to go away.

lovegrov Collaborator
lovegrov
Posted

I can't say that mine are ever itchy...they just hurt and leave a purple scar...that takes forever to go away.

DH is ALWAYS extremely Itchy. One description of it I heard went something like "it feels like you're covered with poison ivy and wrapped in a wool blanket filled with hay and red ants." It's VERRRRRRY itchy (and somewhat painful, but more itchy).

richard

RoseTapper Newbie
RoseTapper
Posted

You seem to have described facial DH quite well--and it DOES take months sometimes for them to go away, and they leave purple scars that take even longer to disappear.

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

Celiac.com Sponsor (A8-M):


Glamour Explorer
Glamour
Posted

I got purple scars on some areas, especially in the beginning. I still have remnants of a few of the first places.

Lily127 Rookie
Lily127
Posted

I'm also confused about this. I had a strange experience upon embarking on the diet. After 3 days of being gluten-free I broke out in this wierd VERY ITCHY bleeding rash. I only had a few. One on my arm, a few on my legs, etc but boy did it itch and it didn't look like anything I've ever seen. Now I have scars where they were that are taking very long to go away.

For me, they bled as soon as I scratched but not scratching wasn't an option given the itch was so extreme. I thought perhaps the gluten-free diet was causing my body to purge what was left. I really don't know. Since being on gluten-free for about 6 weeks now no more have come back and the scars are healing nicely but short of the biopsy I had done on my face (not cancer thankfully) nothing has ever itched this much

L

I got purple scars on some areas, especially in the beginning. I still have remnants of a few of the first places.

  • 2 months later...
Me and DH Newbie
Me and DH
Posted

DH is ALWAYS extremely Itchy. One description of it I heard went something like "it feels like you're covered with poison ivy and wrapped in a wool blanket filled with hay and red ants." It's VERRRRRRY itchy (and somewhat painful, but more itchy).

I concur. I did find that Clobetasol Propionate cream 0.05% relieved the symptoms and promoted quick healing.

I also found that the symptoms wouldn't show up immediately, it took about a day, and the symptoms peaked at about 3 days after consumption (w/o the cream).

  • 2 months later...
psychologist2b Rookie
psychologist2b
Posted

:)My rash has lasted for over 2 months. It burned soooo bad and itched, oozed, bled...it's nasty. I have it on my scalp, face, neck, upper back, lower back, arms. I tried Dapsone, but I felt fatigued so I stopped. The DH flared up when I stopped the Dapsone; the amount of sores quadrupled! I tried corticosteroid creams which helped the itch and burn, tons of anithistamines which don't really do much and protopic ointment. I got so tired of feeling like a walking disease that I decided to ZAP the DH with both red light therapy and UV therapy...I noticed that when I stopped tanning, the rash got worse as well...I began tanning again in a regular bed, daily for about 5-7 minutes and add the red light bed (back to back) for 10 minutes. My DH is so much better already. It's been 4 days and the rash is totally drying out and healing. For over 2 months this nasty rash burned sooo bad and itched, oozed all over my sheets and shirts, etc...and 4 days of light therapy is clearing the disgusting thing! I was going to post pics but I haven't figured that out yet. Anyway, if any of you haven't tried phototherapy, I highly recommend it

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. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

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

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    2. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    3. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    5. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748
    bttyknight83
    Newest Member
    bttyknight83
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

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

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.