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

Dh So Freaking Annoying

GFreeMO

By GFreeMO
in Dermatitis Herpetiformis

Recommended Posts

GFreeMO Proficient
GFreeMO
Posted

So I am sitting here with lovely DH all over my knees and elbows, chin and lips. I can deal with the elbows and knees but this lip and chin stuff looks so ugly! I have scabs all over my chin and whenever I eat, it comes on crazy. The itch and the blisters are driving me nuts. Would this be a sals thing or the iodine thing.

I had soem strawberries and my arm went DH crazy..then for dinner I had a burger with salt and broccoli and green beans and then my knee started up. I have about 50 of the blisters on my lips and chin.

Help!

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Geez! I'm so sorry. But it's probably both sals & iodine. I know; I'm going through it. PITA!!!!!

Okay strawberries are both high iodine AND high sals.sad.gif

Was the salt on your burger non iodized? It should have been.

Broccoli is higher on the sals list although it's not the highest but still I avoid it.

Between sals & iodine the hubs & I are basically eating:

Iceburg lettuce

leeks

cauliflower

cabbage

peeled white potatoes

rice

green beans

peas

white acre peas

red bell peppers (limited quantities & well cooked)

celery

saffron

snow peas & sugar snap peas

brussels sprouts --- we aren't really eating them as hubs despises them but they are allowed

garbanzo beans

bamboo shoots

chives -- fresh

carrots in moderation -- once a week

sweet potatoes in moderation --- once a week

peeled pears

golden delicious apples

mango -- in moderation --- I made mango jam w/o using pectin -- a little goes a long way

instant decaf coffee (Nescafe is pretty good)

sugars are zero sals but honey is high sals

limes

instant decaf iced tea

beef, pork, chicken

Lay's original gluten-free potato chips are low sals --- can you believe it? Hubs eats them but I won't

NO canned foods or frozen dinners (the bamboo shoots & chick peas are canned)

If you take any Tylenol, Aleve or any kind of pain reliever like that the dh goes crazy! MUCHO sals!

I tried chayote & tomatillos b/c they are no sals but they don't like me.

squirmingitch Veteran
squirmingitch
Posted

Oh, I forgot --- add to the list:

cashews & cashew butter but NOT peanuts or peanut butter

sunflower seed butter

egg whites

I do make pancakes with gluten-free Bisquick using egg whites & low iodine milk (milk farmed locally & they hardly use any iodine when milking) but still I use 1/2 milk & 1/2 water.

Golden syrup is no sals

and I eat Lundsburg organic unsalted rice cakes.

eatmeat4good Enthusiast
eatmeat4good
Posted

I'm so sorry you are having it on your face.

I have a scarred chin and lip from DH.

Strawberries and any berries are very high in salicylates.

As Squirming says the canned goods are absolutely out if you have DH.

I had to do low salicylate and low iodine for months.

Now the salicylates don't bother me as much.

Since my DH healed, I have had a few outbreaks from eating something with no gluten ingredients that was made in a facility that also processes wheat. They are far less reaction than I had before. I wasn't sure if I was going to have to watch sals and iodine again or not. They last about 7 days then the blisters just vanished.

My "healing" meal is plain burgers with no salt or pepper or anything, green peas from frozen bags but only those that say peas...none that say peas and salt. I eat this for every meal until the blisters go away.

Too much work to keep changing up what I eat when I am miserable.

Hope this helps.

Squirming gave GREAT advice.

good luck

squirmingitch Veteran
squirmingitch
Posted

LOL! One of these days I'm going to remember everything in ONE post!

You can't use any oils other than safflower & canola. Olive oil is high iodine ( & probably sals) & coconut oil is both high iodine & high sals.

You are allowed to have cocoa powder like Hershey's cocoa powder. You can put some in your coffee to zap it up & give you a nice sweet "fix".

The apples & pears have to be peeled --- the skins contain sals.

Tamarillo is a fruit which is allowed for low sals --- who knows it's iodine content???? as it is not on any iodine list -- good or bad. but they also would have to be peeled. I have not been able to find any Tamarillo where I live so I haven't been able to try them.

Peeled fresh eggplant is on the low sal allowed list.

Lyle's Golden Syrup is zero sals.

No margarine, catsup, BBQ sauce, mustard & such. Remember ALL processed foods are high sals!

nikaboli Newbie
nikaboli
Posted

Oh you poor thing! :( While I'm not diagnosed to have DH, I'm pretty I do and have also had it on my chin area...and it was the worst. :( Lots of great info in this thread...you are all such a wealth of knowledge! I'm so glad I found this site!!

squirmingitch Veteran
squirmingitch
Posted

Oh you poor thing! :( While I'm not diagnosed to have DH, I'm pretty I do and have also had it on my chin area...and it was the worst. :( Lots of great info in this thread...you are all such a wealth of knowledge! I'm so glad I found this site!!

nicaboli, you may have to go this way in your diet too. I truly hope you do not but it's entirely possible. When we have dh, anything that irritates our skin, even if it's things we had zero problems with before, can make the dh kinda go crazy or keep "burning" you see. I did not go low salicylates (sals) at first. At first I just went gluten-free & my rash improved but then it wasn't getting enough improvement so I went low iodine & things went much, much better. And I was in hog heaven eating fresh fruits as they are like manna from heaven to me & I thought, "Oh, how healthy I'm eating!" & I was! But what I didn't realize was that I was loading massive sals into my body & sals are cumulative. I had noticed ppl talking about sals on here but of course I thought I would not have to worry about sals. Well, let's just say I ran as fast as I could into a brick wall of sals. My rash was coming back & I posted on here. These great & good ppl went through every single thing I was eating, ingesting or using to get to the root of the problem. It was sals.sad.gif

Now, the odds are totally in our favor that we will be able to add sals back into our diet & not worry about them anymore. BUT that will be when we have gotten enough IgA out of our skin. Eatmeatforgood did it & she's now "on the other side" & can eat sals as well as iodine. So we just have to do what we have to do until we get better.

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

Wow is that ever a beautiful sentence...she is on the other side... :)

It took 14 months. I was one who took longer than most and I could never figure out why. People would come on saying they stopped gluten and they were healed after a month or two. I could NOT figure it out. I thought I was totally gluten free so what else? I found an article that said some with DH have to avoid eggs and peanuts. I knew the eggs would be iodine...but peanuts? Snicker's definitely effected my DH badly. They say they are gluten free, but maybe not gluten free enough for those with DH? They are made on shared lines with Milky Way which has Barley Malt, so it may have been that. Or was it the sals in peanuts? Then M&M's and diet coke caused a huge reaction. I realized it was salicylates then. And those with salicylate sensitivity are also sensitive to preservatives like benzoates and food colorings too so that explained the diet coke and the M&M's.

It is extremely hard to avoid gluten, iodine and sals at the same time. At some point I went Paleo with low sals and low iodine and that did the trick. I have only had minor reactions like maybe 5 to 10 blisters that heal fairly quickly once I figure out the culprit. I haven't had to limit iodine or sals since I healed. Knocking on wood here. :ph34r:

squirmingitch Veteran
squirmingitch
Posted

Wow is that ever a beautiful sentence...she is on the other side... :)

smile.gifAnd one day I as well as my hubs will be able to say that beautiful sentence! Eatmeat.... YOU give us strength & hope.smile.gif

GFreeMO Proficient
GFreeMO
Posted
  • Author

Thank you so much for the help and the food list! I appreciate it so much!!! :)

squirmingitch Veteran
squirmingitch
Posted

YVW! Hope you get better real quick!

OH! Add bananas to your "can have" list.smile.gif

GFreeMO Proficient
GFreeMO
Posted
  • Author

YVW! Hope you get better real quick!

OH! Add bananas to your "can have" list.smile.gif

I'm allergic to those but thank you!!!

I appreciate the help.

squirmingitch Veteran
squirmingitch
Posted

Man! Gluten-Free! You just can't catch a break can you? I've heard of lots of allergies but this is the first time I ever heard of a banana allergy. So sorry.sad.gif Well, if it helps any --- they are sulfurous, meaning gassy. So you're better off w/o them.laugh.giflaugh.gif

If you are taking probiotics make sure to check them for preservatives --- they can really get the dh going --- I suspect they are sals. Culturelle has the fewest irritants in it that I can find.

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
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.