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Remission?

Lobstah

By Lobstah
in Dermatitis Herpetiformis

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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

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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
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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. 

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