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. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    2. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    3. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,015
    • Most Online (within 30 mins)
      7,748
    CravingADonut
    Newest Member
    CravingADonut
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.