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

6+ Weeks Gluten-Free And A Dh Update . . .

weaselfish

By weaselfish
in Dermatitis Herpetiformis

Recommended Posts

weaselfish Rookie
weaselfish
Posted

Hey All,

6+ weeks on a tight veg & rice diet, and fruit with a wee bit of beef, chicken,and shrimp, and BAM !!! Healing . . Vanicream is outstanding for dryness and is a blessing for me. I'm also good with dairy, ie cheese, eggs, mayonnaise, etc . . . No "raw open wounds", dry skin sloughing, yes, but, healing. Gluten-free Bisquik is working too.

Finally relief from the rawness, weeping, uncontrollable urge to rip one's flesh in search of relief . . .

I'm lucky, and the over-the-counter 1% hydro-cortisone is working good. There is hope, but we must observe and pay attention.

Comfort, healing, and health to you all . . .

Peace,

WF

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Yay!

squirmingitch Veteran
squirmingitch
Posted

Thumbs up!

eatmeat4good Enthusiast
eatmeat4good
Posted

Hey that is wonderful!

So happy you are healing. :)

ciamarie Rookie
ciamarie
Posted

Yay! Encouraging updates are good to see. I'm 3 months into being on a gluten-free diet myself, and yesterday I realized that a rash I've had on the back of my arms for like ever, is gone! It was small red bumps, but not blisters I don't think. I seem to recall that occasionally it would be a bit itchy, but nothing like what I had much more recently on the back of my knees and ears. Progress towards healing is good. :D

weaselfish Rookie
weaselfish
Posted
  • Author

Thanks pricklypear1971, squirmingitch, eatmeat4good, and ciamarie !!!

Ya, it's an incredible feeling to get a handle on the hellish nightmare of DH !!! Congrats ciamarie on your success's !!! We all must ( in my opinion ) remember: Our body tells us ALL we need to know . . . if we only listen to it . . .

And thus, WE ARE our own doctors !!! Autonomy !!!

My best suggestion for new comers is to go minimal on diet ( doing your research of course ), add things back in one-by-one, and pay close attention to how the body reacts. Adjust accordingly, and live without the ( as one put it ) " compulsive urge to claw one's flesh " !!!

We can't be cured of Celiac / DH, BUT, we can manage it !!!

Peace, healing, and love to all my kindred afflicted,

WF

Bubba's Mom Enthusiast
Bubba's Mom
Posted

It's so good to see you've hit on the right combo of things that gave you relief. Your post is sure to give hope to other DH sufferers as well?! :D

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

Celiac.com Sponsor (A8-M):


  • 2 weeks later...
weaselfish Rookie
weaselfish
Posted
  • Author

Hey All,

6+ weeks on a tight veg & rice diet, and fruit with a wee bit of beef, chicken,and shrimp, and BAM !!! Healing . . Vanicream is outstanding for dryness and is a blessing for me. I'm also good with dairy, ie cheese, eggs, mayonnaise, etc . . . No "raw open wounds", dry skin sloughing, yes, but, healing. Gluten-free Bisquik is working too.

Finally relief from the rawness, weeping, uncontrollable urge to rip one's flesh in search of relief . . .

I'm lucky, and the over-the-counter 1% hydro-cortisone is working good. There is hope, but we must observe and pay attention.

Comfort, healing, and health to you all . . .

Peace,

WF

Hey All,

2 weeks later and Irish Spring soap & a good hot shower has no effect on my healing lesion areas. No increased itch or aggravation. Strict Gluten-Free is working well for me still. I wish such success to ALL others !!! Gotta pay attention to your body to know just what to do . .

Peace and healing,

WF

squirmingitch Veteran
squirmingitch
Posted

It's wonderful to hear you are doing so well! Hooray!!!!!!!!!!!!!!!!!!

Unfortunately I am not. I went strict gluten free Nov. 24th, 2011 & iodine free also to help speed things up. It was working great. Then I got a little lax on the iodine. My multivitamins had 25% RDA in them plus I added a few whole eggs & some cheese. I felt I might be pushing it but wasn't sure. Then I broke my own rule of whole foods & got some re-fried beans. They had no gluten listed on the ingredients in the fat free version but their regular ones did contain wheat. I can't remember the exact timing but I began to break out again & then it got progressively worse. Everywhere. My scalp is the worst. Horrors!!!!!!! I got to thinking about the beans & you know how thick & gunky they are. I asked myself if the company really cleaned out the vat well after producing the ones containing wheat? I think it was the re-fried beans. Lesson learned ~~~ the HARD WAY!!!!!!!

I've gone low iodine again in the last 3 days & things are getting better. The itch is not making me want to gouge my skin to pieces & I didn't get any new blisters today --- well, the day isn't over until midnight is it? I'm hoping. Oh but I hate starting at ground zero again. I write this in hopes of helping others who may read this & learn from my screw up.

weaselfish Rookie
weaselfish
Posted
  • Author

It's wonderful to hear you are doing so well! Hooray!!!!!!!!!!!!!!!!!!

Unfortunately I am not. I went strict gluten free Nov. 24th, 2011 & iodine free also to help speed things up. It was working great. Then I got a little lax on the iodine. My multivitamins had 25% RDA in them plus I added a few whole eggs & some cheese. I felt I might be pushing it but wasn't sure. Then I broke my own rule of whole foods & got some re-fried beans. They had no gluten listed on the ingredients in the fat free version but their regular ones did contain wheat. I can't remember the exact timing but I began to break out again & then it got progressively worse. Everywhere. My scalp is the worst. Horrors!!!!!!! I got to thinking about the beans & you know how thick & gunky they are. I asked myself if the company really cleaned out the vat well after producing the ones containing wheat? I think it was the re-fried beans. Lesson learned ~~~ the HARD WAY!!!!!!!

I've gone low iodine again in the last 3 days & things are getting better. The itch is not making me want to gouge my skin to pieces & I didn't get any new blisters today --- well, the day isn't over until midnight is it? I'm hoping. Oh but I hate starting at ground zero again. I write this in hopes of helping others who may read this & learn from my screw up.

Hey squirmingitch,

Thanks. It's damn tough to stay on the diet regime, especially because almost everything I crave I can no longer eat. Too soon for me to test me favorite things as the hell I went through has me in shell-shock. However, we don't know what jacks us till we test it, as you well know we're ALL individual cases.

Hang tough and best of luck,

WF

P.S. No screw up, just a test !!!

squirmingitch Veteran
squirmingitch
Posted

Thanks WF but I wasn't testing ~~~ I just forgot to think the whole d&%$ thing through to consideration of cc. And darned if it didn't hit me worst in my scalp. I can use the Oragel to stop the itch everywhere else but the scalp is kinda funny you know? You don't want to get seen in public with grease all in your hair. Arrrrgggghhhhhhhhhh!

And believe me I wasn't out of shell shock myself yet when this hit.

I guess we'll all go through these little "slip ups" again & again until we get used to thinking everything through to the last degree. Hard to change 55 years of thought about foods overnight.

I sincerely am glad you are healing so well though. Keep it up & don't slip up.biggrin.gif

zippitty5 Newbie
zippitty5
Posted

I'm happy to hear some of you are doing well. I merely suspect that I have dh. Doc did biopsy and won't know for a couple of weeks. Question-how long of gluten free eating until I get some relief? I've only been gluten free for 5 days. No improvement yet - too soon to expect relief? Or perhaps rash is something else. Thanks for any help you can offer

mushroom Proficient
mushroom
Posted

I'm happy to hear some of you are doing well. I merely suspect that I have dh. Doc did biopsy and won't know for a couple of weeks. Question-how long of gluten free eating until I get some relief? I've only been gluten free for 5 days. No improvement yet - too soon to expect relief? Or perhaps rash is something else. Thanks for any help you can offer

:( Sorry to say, but DH is often one of the slowest responders. You might try omitting iodine as much as possible from your diet to start with to see if your DH is iodine sensitive (assuming that's what it is. Iodine often makes it worse. Eat sea salt, no kelp, avoid eggs...asparagus.

weaselfish Rookie
weaselfish
Posted
  • Author

I'm happy to hear some of you are doing well. I merely suspect that I have dh. Doc did biopsy and won't know for a couple of weeks. Question-how long of gluten free eating until I get some relief? I've only been gluten free for 5 days. No improvement yet - too soon to expect relief? Or perhaps rash is something else. Thanks for any help you can offer

Hi zippitty5,

Thanks-a-million !!! The following is based on my personal experience and research. 5 days was too soon for me, took over a month of just rice ( if you like Soy Sauce, go with Tamari to be safe ), veggies, fruits, and some chicken to see the " ITCH " subside. Healing took about another week+ in my case to begin and I've quite a ways to go. Seems to me that we're ALL individual cases with varying response times as well as types and intensity of physically manifest symptoms. As I've stated previously, be patient, observant, tenacious, and careful. I'm self-diagnosed for the record ( never consulted a physician ).

Research / read ALL you can and thoughtfully apply it to your situation. Your success will be mirrored in the subsidence of your symptoms and the commencement of healing. BUT again, be patient. The offending concentration of IgA in the skin can take up to 2+ years to clear ( note " can take " ). I've got tons of research links so, if you'd like me to post them for you, just ask.

I believe in autonomy, ie WE are our own best doctors IF we inform ourselves and are perceptive, so, that's about all I can give you at this time except my best wishes for healing and solutions !!!

Also, not all afflicted with Celiac / Dermatitis Herpetiformis who have biopsy's or blood tests turn out positive. So, unfortunately, at least in that respect, you can't trust the medical industry to determine the condition for you. However, eliminating gluten, and perhaps iodine ( a trigger ) combined with your patience and results will show you just what you need to know ;)

May we ALL find our own path out of the Celiac / DH affliction !!!

Peace,

WF

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):


  • 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.