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. 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.
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Publications & Publicity
      1

      Coeliac UK Research Conference 2025

      Thanks for sharing this!
    3. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared....
    4. trents
      - trents replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Blood tests low iGA 4 years later digestive issues

      Keep us posted.
    5. Scott Adams
      0

      Celiac.com Video News: November 2025

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,399
    • Most Online (within 30 mins)
      7,748
    Hoyt Marquis
    Newest Member
    Hoyt Marquis
    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

    • 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!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • 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.