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

Remission?

Lobstah

By Lobstah
in Dermatitis Herpetiformis

 Share

Recommended Posts

Lobstah Rookie
Lobstah
Posted

First let me say that I'm a weak-minded person regarding some things :)  Haven't been on the board in a long time,  but had an interesting experience and wanted to get other thoughts on the matter.

I was confirmed by endo biopsies and blood tests in 2014.  I had DH for 4yrs prior to that, and no one at that time could figure it out...same tale as most everyone else until an intern sitting in on my physical brought up DH.

Anyway, I am pretty much gluten free with a few exceptions.  I live on the coast, I love seafood...and in the summer, when the fry shacks in Maine open for the season, I'm going to have a plate of fried seafood with onion rings.  I know I'll scratch like a farm animal for a few weeks, and accept that fate.  Then I'm back to gluten free.

Another exception has happened when we cruised to Europe back in May.  I had pizza, and a beer to wash it down.  I also thought I was getting corn tortillas on the cruise ship, and turned out they were flour.  In any case, some thing...DH for a period of time, then back to being OK.  My DH usually comes on within a day or two.  Then takes 2-3wks to subside.  I have an endoscopy every 6mos for the past 3yrs (diff issue) but they check my villi while they're in there, and have always said everything was fine.

In Nov, we went on another cruise out of London...it eventually crossed the Atlantic and came into Miami.  We spent a few extra days in London and Southampton, where we went to several pubs and I had several excellent ales.  Then we boarded the ship, one of these new floating cities, and it had a brewery on board, and I had several excellent beers while on the ship.  We got home on the 22nd of Nov...and to this day, I have not had a single indication of DH.  Pushing my luck, I had some Popeye's fried chicken...nothing.  I had 2 donuts.  Nothing.

This is very odd based on my experience over the past 10yrs.  I just had another endoscopy on Friday, and they took additional biopsies to assess the condition of the villi, so we'll see what the pathology says, but has anyone else experienced any sort of remission when it comes to celiac/DH?

Doesn't seem to be much info out there on it.

Jim

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

Hi, @Lobstah, 

Welcome back!

I will take an educated guess.  

DH is associated with B12 malabsorption.

B12 malabsorption causes anemia.  Anemia affects production of red blood cells as well as white blood cells (like IgA antibodies).

DH is a aggregation of  deposits of IgA antibodies in the skin.  

No IgA, no DH.

You might want to get checked for B12 and anemia.  

A person can have B12 deficiency  symptoms before there's changes in blood levels of B12.  

Anesthesia contains nitrogen compounds (like nitrous oxide in the gas they give you and in the knockout drugs).  Nitrogen binds irreversibly with the Cobalt in Vitamin B12 Cobalamine.  Nitrogen anesthesia stays in your body for ten to twelve months, all the while binding with B12.  So deficiency symptoms don't start right away, but weeks or months after nitrogen anesthesia.  

I have been under anesthesia for surgery or endoscopy, and have had injected anesthesia at the dentist, and months later I experienced B12 deficiency symptoms.  That was the only time my skin was smooth as silk (mainly because my hair fell out.)  

Ask your doctor about supplementing with B12 shots or sublingual tablets.

Interesting reading...

Hematologic manifestations of celiac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1785098/

And...

Malabsorption of vitamin B12 in dermatitis herpetiformis and its association with pernicious anaemia

https://pubmed.ncbi.nlm.nih.gov/3776700/ 

Lobstah Rookie
Lobstah
Posted
  • Author

Thanks for the quick response.  I'd be surprised if that was it for several reasons.  1) I haven't had any nitrogen anesthesia, at least not for several years.  It's always propofol (in the hospital) or fentanyl in a doctors office, always administered via IV.

Also, dietary sources of B12 include eggs, cheese, dairy, fish, and some meats.  That's basically my diet.  We go through an 18pack of eggs every 1-2wks.  I usually have 2-3 for breakfast, many times with cheese.

I think there's something else going on....

Jim

knitty kitty Grand Master
knitty kitty
Posted
(edited)

Yes, fentanyl does have nitrogen.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4137794/

Just because you eat it doesn't mean your body absorbs it.  

B12 needs an intrinsic factor to be absorbed.

Alcohol disrupts the absorption of vitamins like B12 and Thiamine.

https://pubmed.ncbi.nlm.nih.gov/15138463/

Anemia of Autoimmune diseases is a possibility, too.

Edited by knitty kitty
Add link
Hopeful1950 Explorer
Hopeful1950
Posted

Your mention of 10 years jumped out at me…I recall reading somewhere (I wish I could provide a link or a cite, but can’t find it) that DH goes into remission in some people after 10 years or so.  Maybe you are one of these very lucky folks…

CeCe22 Explorer
CeCe22
Posted
On 12/11/2022 at 10:27 AM, Hopeful1950 said:

Your mention of 10 years jumped out at me…I recall reading somewhere (I wish I could provide a link or a cite, but can’t find it) that DH goes into remission in some people after 10 years or so.  Maybe you are one of these very lucky folks…

Enjoy your remission!!!!  I have always heard and read that even if you are in remission to stay on a gluten free diet. I have had since August short spurts of time when I go without DH symptoms. The last lasted about three weeks. I stayed on gluten-free diet during that time. Went out to eat recently and had small breakout but DH symptoms not lasting as long as they usually last. Once I realized that I was getting gluten by my dog and changed her food I am so much better!!!!!

  • 3 weeks later...
Grammy9 Rookie
Grammy9
Posted

I’m almost speechless. Celiac three years now. This is the first time I have read dermatitis as a result from gluten. That is my main reaction. But it’s equivalent to shingles. Very painful. Even one spot is painful. Before being diagnosed celiac the remedy was Benadryl. My breakout was from the top of my back to my knees. While Benadryl helped it did not go away. I later learned that Benadryl is cross contaminated at the facility. Every time I break out it leaves a scar. Allergists, dermatologists GP clueless. My GI figured it out. But no remedy other than I was glutened. I’ve learned medicines, topical and consumed, can contain gluten. Lotions, cosmetics, shampoos, so many things have gluten. I’ve lost my hair, started to loose my eyebrows before I realized my eye brow pencil contained gluten. Overwhelming to say the least. I’ll write more later. Need to cry. 

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

Celiac.com Sponsor (A8-M):


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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 Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      @Jmartes71, I understand your frustration and anger. I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone. My doctors did not recognize nutritional deficiencies. Doctors are trained in medical learning institutions that are funded by pharmaceutical companies...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in...
    3. marion wheaton
      - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Are Lindt chocolate balls gluten free?

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    4. Dorothy O.
      - Dorothy O. commented on Scott Adams's article in Latest Research
      7

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Even though my brother almost died in his 40s because of coeliac disease, no one ever told family members that we should be tested. As a result, I was almost 70 years old when an orthopaedic doctor suggested that I be tested for coeliac disease. My count was greater than 250. I had loved my bread, baking, especially pies and was never sick, but did not absorb...
    5. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,405
    • Most Online (within 30 mins)
      7,748
    Kbradway
    Newest Member
    Kbradway
    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
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
×
×
  • 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.