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

Wanted To Share A Photo Of What's Left On My Upper Back And Scars

Flasaltwater

By Flasaltwater
in Dermatitis Herpetiformis

Recommended Posts

Flasaltwater Apprentice
Flasaltwater
Posted

Thought this might help someone else compare what they have its so hard to try and figure out what rash you have. This is whats left of mine on my upper back and scars from a years worth a bad rash.

My skin is ruined basically, this is the most painful and itchy rash I have ever had in my life yuk!

Do I need to be eating Gluten to get my skin Biopsy on Monday? I do still have some breakouts.Sorry about the size ill try to edit

101_0957.webp

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

DH scars are usually purplish red and last for a long time rather than leaving white scars. Your scars look nothing like mine did. However I am not saying that you don't have DH. In addition celiac can cause skin problems other than DH. I also had cystic acne type sores and those faded to a white color but I haven't had one since I went gluten free. Hopefully whatever your problems are with your skin it will resolve after you have been gluten-free for a bit and the scars will fade.

Flasaltwater Apprentice
Flasaltwater
Posted
  • Author

Most of those are about a year old. I do have the purplish scars on my behind and legs and arms those are my fresher scars. I do also tend to pick at them they drive me crazy, these scars were all at one time fluid filled itchy painful bumps. I hope they can give something to make them go away ill try to post the ones on my arms later. My cousin who is celiacs gets these white scars after time goes by maybe has something to do with our skin color all I know is I want it to go away

.

pricklypear1971 Community Regular
pricklypear1971
Posted

Most of those are about a year old. I do have the purplish scars on my behind and legs and arms those are my fresher scars. I do also tend to pick at them they drive me crazy, these scars were all at one time fluid filled itchy painful bumps. I hope they can give something to make them go away ill try to post the ones on my arms later. My cousin who is celiacs gets these white scars after time goes by maybe has something to do with our skin color all I know is I want it to go away.

My biopsy was supposed to be Thursday. Spoke with my derm and he wanted to postpone it because he wants fresh, new rash to biopsy. He thinks it's the best way to get a positive. So, we agreed to wait til I have another big oops and do it in the first 48 hours.

That doesn't mean you can't get a good one - just his preference and my reluctance to do anything to make mine flare up on purpose.

So far I don't have scars from mine, but did have the purple under the skin until I reduced iodine. I still see pink under the skin but it isn't anything like it was. Do far no white patches.

Flasaltwater Apprentice
Flasaltwater
Posted
  • Author

This is one of the back of leg just under my bottom. This is a few of the scars that are bigger because these were the bigger had more fluid in them.

IMG_0304-1.webp

ravenwoodglass Mentor
ravenwoodglass
Posted

The ones on your leg do look like the scars I had, I still have a couple on my back even though I haven't had DH in ages. I hope your lesion free soon. I know they itch and hurt like the dickens!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

That's what my bumps look like! They are purple after they first heal..which takes forever, and then they leave a white spot. I have them on my upper arms and a couple on my legs right now. I find it impossible to leave them alone!

My Celiac wasn't diagnosed by my skin problems, but I think they're related? I'm interested to see what you find out.

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

Celiac.com Sponsor (A8-M):


Hopeful1950 Explorer
Hopeful1950
Posted

The doctor that helped me diagnose my DH said that "vitiligo" (white spots)is common with celiac and DH is celiac. These pictures look exactly like what I am dealing with. First I get an incredibly itchy feeling under the skin, then it raises up into a little bump with fluid (still itchy). Usually it gets scratched because of the intense itching. These lesions stay around for a long time until the blistering cycle stops, then they heal and leave the purple mark. They do tend to raise up and itch over and over even after they have a scab. When the purple mark fades, they often leave the white spots especially on my arms, upper back and back of the neck.

Often when they have healed and have started to fade, they will blister again in the same spot. Or they will blister around the edges of a scab. This stuff is really miserable to deal with and I fought it for 8 years undiagnosed so now it is taking an incredibly long time to clear up. Although there are many similarities between peoples' rashes (ie: itching) I think the aftermath can probably vary in appearance depending on skin type, color, previous sun damage etc.

I never could get a derm to do the biopsy correctly. Point the doctor to the area that is the most active and have him/her get the normal skin next to it. If they biopsy right on the lesion, the biopsy will be negative for DH. Oh and if they biopsy right on the lesion be prepared for it to go crazy and take about 6 months to heal.

Best of luck to you. Be sure to advocate for yourself and get the medical treatment you deserve.

Flasaltwater Apprentice
Flasaltwater
Posted
  • Author

The doctor that helped me diagnose my DH said that "vitiligo" (white spots)is common with celiac and DH is celiac. These pictures look exactly like what I am dealing with. First I get an incredibly itchy feeling under the skin, then it raises up into a little bump with fluid (still itchy). Usually it gets scratched because of the intense itching. These lesions stay around for a long time until the blistering cycle stops, then they heal and leave the purple mark. They do tend to raise up and itch over and over even after they have a scab. When the purple mark fades, they often leave the white spots especially on my arms, upper back and back of the neck.

Often when they have healed and have started to fade, they will blister again in the same spot. Or they will blister around the edges of a scab. This stuff is really miserable to deal with and I fought it for 8 years undiagnosed so now it is taking an incredibly long time to clear up. Although there are many similarities between peoples' rashes (ie: itching) I think the aftermath can probably vary in appearance depending on skin type, color, previous sun damage etc.

I never could get a derm to do the biopsy correctly. Point the doctor to the area that is the most active and have him/her get the normal skin next to it. If they biopsy right on the lesion, the biopsy will be negative for DH. Oh and if they biopsy right on the lesion be prepared for it to go crazy and take about 6 months to heal.

Best of luck to you. Be sure to advocate for yourself and get the medical treatment you deserve.

This is exactly how it feels and is for me I must have gotten into something today I'm itchy pretty bad right now. I live in Florida so I am sure there is some sun damage from extended times at the beach.

I will be sure that she is aware of how to do this biopsy. I need her to do it right. I have photos with worse scars then that I am newly Gluten free and I have made some major boo boos with food with Iodine in it. Tonight is not a good night I'm also sure that I have been accidentally Glutened by my family.

Some of my digestive symptoms are starting to get better. My bathroom runs have calmed down tremendously. I'm actually able to sleep at night now unless I'm itching of course.

I'm a hot mess right now.

I just to thank everyone for responding to my post.

pricklypear1971 Community Regular
pricklypear1971
Posted

I got into a few somethings including my dog's shampoo - wheat germ oil. Noticed too late.

I have a few new bumps on my otherwise healing rash but they are minuscule in comparison to what they were.

Another week of low iodine. Hurray for me. Ugh. I just want ice cream and cheese back.

I think carageenan really tears my DH up.

eatmeat4good Enthusiast
eatmeat4good
Posted

Carageenan is terrible for my DH too.

My scars are pure white like that after they completely heal...Just exactly like your pics.

Mine are on my face and chest.

My elbows and lower back didn't scar...neither did my leg.

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 rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.