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

New Member Itching

Wakingup

By Wakingup
in Dermatitis Herpetiformis

Recommended Posts

Wakingup Apprentice
Wakingup
Posted

Hi everyone,

This is my first post. I self diagnosed in May and have been eating gluten-free since then.

Generally feeling 100 percent better. I don't know if what I've developed is DH and that is why I am posting today. Almost every day a new "bite" or "bites" appear on my calves or ankles. The first appeared on my ankle in July. It was huge, red, swollen, terribly itchy and left a scar. I call them bites because that is what they look like but I know they are not mosquito bites. I did not have any of this before I went gluten-free. Went gluten-free in May 2011 and this started in July 2011.

I want to thank anyone in advance for any clue you may have as to why this is happening, Wakingup

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

Celiac.com Sponsor (A8-M):


Wakingup Apprentice
Wakingup
Posted
  • Author

I am using Aveda blue malva shampoo and just read online that it is not safe for celiacs!! Maybe that is what is causing my itching? My scalp is fine, the welts are on the backs of my calves. Any ideas are welcomed.

eatmeat4good Enthusiast
eatmeat4good
Posted

My son got those bite looking welts on his lower legs...they looked like mosquito bites...multitudes of them even when it wasn't mosquito season. Dr. never made anything of them except told us to use cortisone cream. However, they went away and have never come back since he went gluten free. It could be a variation of DH...that is what I suspected too. If it is...then you may have to limit both gluten and iodine to get relief and healing. It's possible to get a biopsy if you want to pursue that route. However, I just wanted to say that the appearance sounds a lot like what my son had that went away being gluten free. If it isn't DH, it can still be a gluten related rash.

Sarah Alli Apprentice
Sarah Alli
Posted

For the sake of exploring every possible solution- you're absolutely sure you're not actually being bitten by something, right? Especially on your lower legs, I'd be concerned about ticks and mites from walking through tall grass, but spiders also can leave nasty welts and if you find that they're appearing overnight it might not be a bad idea to wash all your bedding and clothing thoroughly, just in case.

Wakingup Apprentice
Wakingup
Posted
  • Author

For the sake of exploring every possible solution- you're absolutely sure you're not actually being bitten by something, right? Especially on your lower legs, I'd be concerned about ticks and mites from walking through tall grass, but spiders also can leave nasty welts and if you find that they're appearing overnight it might not be a bad idea to wash all your bedding and clothing thoroughly, just in case.

Sarah, Thanks for your response.....I suppose there is a chance that I am getting bitten. And thanks for your suggestion, I'll try it. WU

Wakingup Apprentice
Wakingup
Posted
  • Author

My son got those bite looking welts on his lower legs...they looked like mosquito bites...multitudes of them even when it wasn't mosquito season. Dr. never made anything of them except told us to use cortisone cream. However, they went away and have never come back since he went gluten free. It could be a variation of DH...that is what I suspected too. If it is...then you may have to limit both gluten and iodine to get relief and healing. It's possible to get a biopsy if you want to pursue that route. However, I just wanted to say that the appearance sounds a lot like what my son had that went away being gluten free. If it isn't DH, it can still be a gluten related rash.

Thanks EM4 for your response. The puzzling thing about these "bites" is that I never had them while I ate gluten. They appeared right after I went gluten-free.

I don't quite understand what iodine has to do with it. I don't want to have to give up eating seafood because I 'm not a big meat eater. GU

pricklypear1971 Community Regular
pricklypear1971
Posted

I can't over emphasize the iodine thing. Try it for a few weeks. You'd be surprised-go through vitamins, all processed foods, etc. Ditch the sea salt, dairy, seafood, iodized salt....

It works.

If you try it for a week and no progress it isn't the iodine. Low iodine isn't forever, just till they heal.

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

Celiac.com Sponsor (A8-M):


Wakingup Apprentice
Wakingup
Posted
  • Author

I can't over emphasize the iodine thing. Try it for a few weeks. You'd be surprised-go through vitamins, all processed foods, etc. Ditch the sea salt, dairy, seafood, iodized salt....

It works.

If you try it for a week and no progress it isn't the iodine. Low iodine isn't forever, just till they heal.

Hi PP, Thanks for your reply. Ok, you mean to check the vitamins for iodine?

or gluten? I've already checked everything for gluten, incl. vitamins. Wasn't aware that there may be iodine in my vitamins? I'll definitely give this a try. thanks, WU

Wakingup Apprentice
Wakingup
Posted
  • Author

I can't over emphasize the iodine thing. Try it for a few weeks. You'd be surprised-go through vitamins, all processed foods, etc.

Ditch the sea salt, dairy, seafood, iodized salt....

It works.

If you try it for a week and no progress it isn't the iodine. Low iodine isn't forever, just till they heal.

I have read that sea salt does not contain iodine, or just trace amounts.

Does anyone know for sure?

pricklypear1971 Community Regular
pricklypear1971
Posted

Some sea salt more than others. Just buy a plain box of non-iodized salt and use it for a while.

Yes, iodine in vitamins. Also dairy and egg yolks are high in iodine. Eat grains, beans in moderation since they MAY be depending on the soil.

I'm on day 6. Ugh.

pricklypear1971 Community Regular
pricklypear1971
Posted

And avoid salty processed foods like potato chips cause you don't know if it was iodized or not.

Wakingup Apprentice
Wakingup
Posted
  • Author

Some sea salt more than others. Just buy a plain box of non-iodized salt and use it for a while.

Yes, iodine in vitamins. Also dairy and egg yolks are high in iodine. Eat grains, beans in moderation since they MAY be depending on the soil.

I'm on day 6. Ugh.

I usually eat one hard boiled egg and cereal for breakfast. If I can't do eggs, does anyone have a suggestion for protein at breakfast? The obvious bacon or sausage has too much fat and I don't like to eat processed lunch meat.

eatmeat4good Enthusiast
eatmeat4good
Posted

As for your sores appearing after going gluten free, there are many posts in the archives of the DH section where the same thing happened to others. Why is a mystery, but may have something to do with increased sensitivity to gluten -once it has been thoroughly eliminated we tend to have stronger reactions to it and the auto-immune response is a cascade not just a flare. My son's entire lower legs were covered with those "bites" and that is just what Dr.'s thought they were....flea bites. It seemed to make sense...they looked like it...but we had no pet. No treatment but being gluten free helped. My son did not have to eliminate iodine to heal his sores...they went away just weeks after eliminating gluten. However, I had to learn the hard way about eggs, dairy, asparagus, canned goods, and salty chips. I still get a reaction if I eat too much salt. Iodine is really bad for DH, but you may not be as sensitive as others. Even a little too much causes a flare for me...even after a year. Of course I'm never sure if it is the iodine or the gluten traces that are causing me to react, but I try to be very careful.

There is a thread on here What's for Breakfast if you want to see what others eat. You can still eat egg whites...the iodine is in the yolk.

Wakingup Apprentice
Wakingup
Posted
  • Author

As for your sores appearing after going gluten free, there are many posts in the archives of the DH section where the same thing happened to others. Why is a mystery, but may have something to do with increased sensitivity to gluten -once it has been thoroughly eliminated we tend to have stronger reactions to it and the auto-immune response is a cascade not just a flare. My son's entire lower legs were covered with those "bites" and that is just what Dr.'s thought they were....flea bites. It seemed to make sense...they looked like it...but we had no pet. No treatment but being gluten free helped. My son did not have to eliminate iodine to heal his sores...they went away just weeks after eliminating gluten. However, I had to learn the hard way about eggs, dairy, asparagus, canned goods, and salty chips. I still get a reaction if I eat too much salt. Iodine is really bad for DH, but you may not be as sensitive as others. Even a little too much causes a flare for me...even after a year. Of course I'm never sure if it is the iodine or the gluten traces that are causing me to react, but I try to be very careful.

There is a thread on here What's for Breakfast if you want to see what others eat. You can still eat egg whites...the iodine is in the yolk.

Thanks very much for your response....very helpful as I am new to this and still learning. WU

GFphilly Newbie
GFphilly
Posted

I was so happy to see this thread. I am going through a very similar situation right now. A few days ago I developed incredibly itchy bumps on both ankles that look similar to bug bites. But I really dont think thats what they are - my ankles simultaneously got extremely itchy and i saw the bumps spring up before my eyes. Some are clustered and they are not healing like normal bites. I have celiac and have been strictly gluten-free for over 2 years. And now this out of the blue. I went to the doc this morning and was told they are probably bug bites, even after I brought up the possibility of DH. My doctor said he didn't think that was right because I was already gluten-free and because DH usually develops on the torso. Now I'm not really sure what to do. I will try cutting down on salt, but have you found DH to resolve on it's own?

pricklypear1971 Community Regular
pricklypear1971
Posted

Once mine did. Just to pop up 4 months later.

Reducing iodine is extremely effective.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,133
    • 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.