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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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    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

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      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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