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Iiv

Diamine oxidase deficiency in untreated celiac patients

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So. 

I did a weak positive tTG-IgA test a couple of months ago. But they are not sure if they want me to do a biopsy. This is probably because I have been on a strictly gluten free diet since August. 

Today I received a letter claiming that I have histamine intolerance. This I will not buy because I can eat tons of histamine rich foods and will not exclude anything from my diet unless I feel ill. 

So I Googled and found

"Postheparin diamine oxidase levels were significantly lower in untreated celiac patients (mean 1.53 units/ml) than in healthy controls (mean 5.85), treated celiac patients (mean 4.82), and abnormal controls (mean 2.62). 

(https://www.ncbi.nlm.nih.gov/m/pubmed/3134178/

This is a deficiency caused in the same region where autoantibodies are having their party. I'm therefore hoping this deficiency is secondary. 

And maybe this is of worth for others to know too, because I know some with celiac or ncgs have issues with lots of foods. 

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Also found this: https://www.ncbi.nlm.nih.gov/pubmed/29475774 

The link above particularly relates low DAO with migraines, which is what I need help with as a Celiac.

Sounds promising and I note there seemed to be no side effects with the supplementation:

"No adverse effects were registered in patients treated with DAO enzyme."

Where can you get this enzyme?

Edit: Amazon sells this. Just ordered some.

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40 minutes ago, trents said:

 

Edit: Amazon sells this. Just ordered some.

Yes, I'll eventually get some myself too. DAO definitely explains a lot of the weird symptoms I've had when being glutened, like blackouts apparently. 

My headaches (and DAO deficiency they say) is helped by zinc, b9 and b12 too. B6 is supposed to be linked to DAO too. 

Please give a review of how they work :)

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Please also give a review if this works for you. I avoid gluten as much as possible (entirely gluten-free home etc no eating out) and after my last cc incident. I have issues they seem like mast cells or histamine related. I up the B-12 in addition to what is in my multi, it seems to help, but not enough. So I may have to follow your lead.  I do also wonder if the cc hits sin an area where my DAO also resides as you say.  

Please keep us updated and good luck

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Will do. I'm already taking loads of B vitamins and some magnesium supplementation. I have to be careful with magnesium and zinc supplementation because they definitely have a laxative effect on me.

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13 hours ago, Awol cast iron stomach said:

  I do also wonder if the cc hits sin an area where my DAO also resides as you say.  

Please keep us updated and good luck

Appereantly it does, since the DAO enzymes are mostly produced in the mucosa of the small intestines. 

Hence if small intestine is damaged, it can become difficult for the body to produce enough DAO enzymes. With not enough enzymes to break histamine down, it builds up and you get overloaded with histamine in your body. With horrible reactions. 

Since I actually have some IgE antibodies towards wheat too, just a tiny amount, I assume the consequence of DAO deficiency is heavier reactions towards wheat than I would have with normal levels. (I have like 1/3 of the new cutting point for deficiency.)

My guess is that this is why I feel hypersensitive towards anything from cereals, the combination of actual antibodies and lack of resources to break the excess histamine down. 

I'm going to boost with c-vitamine too, and am considering copper.. Just that I don't like copper as supplement, I have this idea of it being potentially dangerous. 

 

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Liv and Trents,

If you are having trouble with a DAO deficiency you might want to look into SIBO.

It is possible you have a genetic deficiency for the DAO gene but it is unlikely since SIBO has been shown to interview with DAO metabolism.

Here is the research link on the genetic deficiency.

https://www.ncbi.nlm.nih.gov/pubmed/21488903

Here is a nice article and helpful website that talks about this connection between histamine intolerance and the SIBO connection.

https://sibodiaries.com/2019/05/30/the-histamine-and-sibo-connection/

Also see this nice SIBO overview.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

Here is their article on SIBO in celiac's and it's association in Celiac's.

Celiac Disease

"Long-standing celiac disease can disturb gut motility, leading to small intestine dysmotility.48 A study of 15 celiac patients with persistent symptoms despite adherence to a strict gluten-free diet found that 66% had bacterial overgrowth on lactulose breath testing.49 All of these patients noted a resolution of their symptoms after being treated for bacterial overgrowth."

It is  me again...while the study was small those (Celiac's) still suffering symptom's on a gluten free diet should look into treating or checking into to see if diagnosing SIBO could help their remaining symptom's.

Chris Kreser has a nice updated article on SIBO too and why it can be hard to diagnose.

https://chriskresser.com/sibo-what-causes-it-and-why-its-so-hard-to-treat/ 

Liv that was good research you found....and it might confirm (if SIBO interferes with DAO metabolism as is suspected) that SIBO is an evil twin/brother/sister disease that also develops in Celiac's and treating both will/could help your remaining Celiac symptoms... since SIBO has also been known to cause villi blunting.

https://www.verywellhealth.com/villous-atrophy-562583

I hope this is helpful but it is not medical advise.

Posterboy,

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On 7/7/2019 at 10:30 PM, Posterboy said:

 

Thanks Posterboy. 

It cannot hurt to feed the right bacteria in your gut. Especially not if one is very low in DAO. (I'm 3,5.. One study claimed that healthy controls were nearly 40(+-20).😱). Luckily I don't have IgE mediatet allergies, and am quite low on Total IgE count and eosinophil. 

Haven't checked my histamine levels though. 

Hopefully my DAO levels will increase :)

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Well the DAO pills came last week but I'm kind of at a loss as to how test their efficacy. I've been migraine free of late. I'm thinking I'll have to buy a bottle of wine to test this. If I drink a full glass of wine it will almost always give me a headache and alcoholic beverages are one of the high histamine foods you see in most lists. But some people fell it's the nitrites/nitrates in wine that are the headache trigger.

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Great!! It's going to be interesting to see what you think of them. 

But.. 

It sounds cruel to try to get a headache 😖

Isn't that a wee bit to much to ask? What if the pills won't work? 

 I received my blockers today. Standard h1 (desloratadin) and h2(ranitidin). They worked awesome until recently. Quick fix for high energy levels. But it hurts when they are done with their work.😩

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Thanks for the info and the links, Posterboy. I note one factoid from the last link you gave that caught my eye and that is a risk factor for SIBO associated with low gastric acid. Since I'm on long term PPI therapy, that could be relevant to me. I wonder how hard it would be to get a primary care provider to order a breath test. But then again, those breath tests are subject to so many variables that there reliability is questionable. Might be one of those things you just treat the symptoms and if there is improvement you can assume you have successfully identified the issue.

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35 minutes ago, Iiv said:

Great!! It's going to be interesting to see what you think of them. 

But.. 

It sounds cruel to try to get a headache 😖

Isn't that a wee bit to much to ask? What if the pills won't work? 

 I received my blockers today. Standard h1 (desloratadin) and h2(ranitidin). They worked awesome until recently. Quick fix for high energy levels. But it hurts when they are done with their work.😩

If the pills don't work with the wine test, I can take my Imitrex which does.

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12 minutes ago, trents said:

I wonder how hard it would be to get a primary care provider to order a breath test.

12 minutes ago, trents said:

Thanks for the info and the links, Posterboy. I note one factoid from the last link you gave that caught my eye and that is a risk factor for SIBO associated with low gastric acid. Since I'm on long term PPI therapy, that could be relevant to me. I wonder how hard it would be to get a primary care provider to order a breath test. But then again, those breath tests are subject to so many variables that there reliability is questionable. Might be one of those things you just treat the symptoms and if there is improvement you can assume you have successfully identified the issue. 

Trents,

That is a good question "how hard is it to get a primary care physician to order a breath test".

Here is a good place to start. ..being a celiac or NCGS should/would probably qualify you to have it done.

https://www.aafp.org/afp/2019/0301/p301.html

the AAFP is like an online resource for family physicians the link I provided has some checklist items primary care physicians can use as  resource when they suspect SIBO.

I hope this is helpful but it is not medical advise.

Posterboy,

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On 7/3/2019 at 2:25 PM, trents said:

Will do. I'm already taking loads of B vitamins and some magnesium supplementation. I have to be careful with magnesium and zinc supplementation because they definitely have a laxative effect on me. 

Trents,

try swapping your Magnesium Citrate (I assume) that is the one that most causes flushing to a Magnesium Glycinate and Magnesium shouldn't cause a laxative effect anymore.

Here is a great resource on the best type of Magnesium(s) to take. ..it is the best I have read.

https://www.dietvsdisease.org/best-magnesium-supplement/

I hope this is helpful but it is not medical advise.

Posterboy,

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2 hours ago, trents said:

If I drink a full glass of wine it will almost always give me a headache and alcoholic beverages are one of the high histamine foods you see in most lists. But some people fell it's the nitrites/nitrates in wine that are the headache trigger.

Trents,

It also might be the Sulfites in the wine.

Here is an article on it.

https://www.chicagotribune.com/lifestyles/health/sc-red-wine-headache-health-0608-20160525-story.html

But my bet is on Tyramine ....it is connected to a histamine storm.

Here is a nice Webmd article on it.

https://www.webmd.com/migraines-headaches/tyramine-and-migraines#1

Also read this exhaustive thread about it on celiac.com

I hope this is helpful but it is not medical advise.

Posterboy,

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Yes, I am aware that the sulfites in wine can be the culprit. But thanks for the reminder. Sometimes with multiple options it can be difficult to sort out.

I recently switched to Mg Gycinate and so far no issues.

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Trents and Liv,

You will have other symptom's not commonly associated with your Celiac diagnosis if SIBO has developed.

Like B12 issues, unintended weight loss and low Albumin levels.

this is figure 3 from the SIBO overview link

"Table 3 Clinical Manifestations of Small Intestinal Bacterial Overgrowth

Weight loss

Steatorrhea

Vitamin/mineral deficiency

— Fat-soluble vitamins (A, D, E, K)

— Vitamin B12

— Iron

Vitamin excess

— Folate

Hypoproteinemia/hypoalbuminemia

Decreased xylose absorption"

It is me again.

Your long term PPIs use could definitely trigger a subsequent SIBO diagnosis.

Here is a study on H2 doing just that entitled "Effect of H2-receptor antagonists on bile acid metabolism."

https://www.ncbi.nlm.nih.gov/pubmed/7735920/

because it/they effect bile acid metabolism the pH of the upper small intestine is changed and SIBO develops subsequently from that change.

see their concluding remarks quoting

CONCLUSIONS:

"Patients with gastric ulcers who were treated with H2-receptor antagonists have increased bile acid deconjugation due to bacterial overgrowth in their jejuna containing species that can deconjugate bile acids. The bacterial overgrowth is probably associated with a shift to neutral pH in the gastric juice caused by the H2-receptor antagonists."

but getting off PPIs are not easy even if you know their long term use is not good for you.

a virtuous cycle is now a vicious cycle....

I wrote about my experience where I think these are connected/associate conditions.

If it doesn't help you maybe it will help the next person.

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

once you start seeing these as connected/related conditions everything (relatively) start to make sense. .. .they call it connecting the dots.

if taking DAO alone doesn't help try taking some Thiamine with it.

Here is an article about connecting the dots with Thiamine and DAO.

https://www.eonutrition.co.uk/blog/thiamine-deficiency-a-major-cause-of-sibo

if you want to study more about SIBO here is a great resource.

https://www.naturalmedicinejournal.com/journal/2017-05/takeaways-2017-integrative-sibo-conference

I do think co-morbidity in Celiac's answer many of the questions of those still suffering on a gluten free diet. ...it my hunch only....no medical advise.

I do know I had similar problems that did not clear up immediately (within first two years) on a gluten free diet like high homocystiene levels and low albumin levels until I treated my un/misdiagnosed low stomach acid.... and maybe un-diagnosed SIBO.

This is getting too long again...I need to stop for now.

Again I hope this is helpful but it is not medical advise.

Posterboy,

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My labs are all in the normal range now. Total protein and albumin are near the low end of normal but that is an improvement. For 20 years one or both were below normal. That includes about a 6 or 7 year pre celiac disease Dx span. I've been on PPI therapy for GERD/hiatal hernia for 16-17 years.

But all this discussion has started me thinking that when I have clusters of headaches/migraines it may be a time when my SB microbiology balance is worse than usual for whatever reason so as to make for higher than usual histamine levels. It also may be likely that I'm often on the cusp of that and just get tipped over it by something. Spring of the year when pollen counts are high is the worst for headaches/migraines for me.

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Trents,

I see I didn't post this link ...it might answer some of your questions entitled "Does SIBO Affect Histamine Intolerance and DAO"

I didn't want my post to get way tooooooooo long.

https://www.drbenlynch.com/sibo-histamine/

It has a great overview I certainly learned alot about the SIBO/Histamine Intolerance connection by reading it.

their point 7 and 8 might shine light onto our headache/migraine connections quoting.

"7. Higher histamine in these organs and tissues leads to symptoms of headache and irritability (brain), red face, hot, sweaty, eczema, psoriasis and red lines if scratched (skin), increased heart rate (heart), difficulty breathing and asthma (lungs), increased utilization of methylation and nutrients which support methylation (liver).

8. Even if the DAO enzyme works hard to start breaking down the histamine, if there are additional blockages in other enzymes, harmful levels of aldehydes will increase. Aldehydes are very toxic and lead to a vast number of symptoms. Vitamin B1, known as thiamine, is a big player help reduce aldehydes."

It is me again the headaches could be a secondary effect from toxic build up of aldehydes when this histamine cycle is is disturbed which often happens in someone with SIBO especially if it s being/going undiagnosed.

I think I posted this in another thread but B-2 has also been shown to help Migraines too!

You might taking some Tryptophan as well ....it has been connected to the pathogenesis of IBS.

Here is the research on it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266036/ 

As for certain times of the year ...it could be that you have an associated trigger food you have not yet figured out and why I mentioned he Tryramine connection.

since they dr. lynch mentioned this I will also provide this link for some research on under/over methylation.

https://mentalhealthdaily.com/2015/03/21/undermethylation-vs-overmethylation-causes-symptoms-treatments/

They mention which comes up from time to time also a MTHFR gene defect.. ..which is certainly a possible. .. or it might just be the SIBO messing with your metabolism of these B-Vitamins.

Like you said. ..so many choices which one to choose?

Again I hope this is helpful but it is not medical advice.

Posterboy,

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4 hours ago, Posterboy said:

 

4 hours ago, Posterboy said:

 

It is me again the headaches could be a secondary effect from toxic build up of aldehydes when this histamine cycle is is disturbed  

They mention which comes up from time to time also a MTHFR gene defect.. .. 

.

 

8. Even if the DAO enzyme works hard to start breaking down the histamine, if there are additional blockages in other enzymes, harmful levels of aldehydes will increase. Aldehydes are very toxic and lead to a vast number of symptoms. Vitamin B1, known as thiamine, is a big player help reduce aldehydes."

 

Thanx

Aldehydes is probably the reason till why I lean towards " high consumption of alcohol or.. " in my reports, even though it can be nearly two years between a glass. This was funny and confusing. Apparently histamine and alcohol share high roads in the body for this reason. 

I'm fine in Iron, protein and albium. 

But I read that one can be high in Iron because of the body's defenses too. When you lack... Something.. The body produces a lot of iron to meet the needs. And you can therefore be deficit in deposits. 

B6 and copper is said to be great for DAO enzymes. I'm not keen on copper, since it has nasty side effects if overdose. But I might have to rethink. I added b6 to my diet anyway. 

I have a few decades left to 65, where sibo is most often found. So I might have time to reverse it. 

I don't eat any medications, not even painkillers. Except for antihistamines now. (one physician wanted me to eat serotonin, because he assumed my tiredness was caused by a depression. But I couldn't eat serotonin. I shook worse than Angela Merkel. Bad convulsions. Antidepressants are on the big No list) 

I will be careful with the h2 blocker, I don't have issues with gastric acids that I feel. But this blocker made the tiredness dissappear quite quickly. Hence I'll use it in emergencies. It's such an amazing feeling to be energized. I could become addicted. 

I might be Mao deficent too. Both Mao and Dao are involved in other biogenic amines found in proteins. 

I have a low mean platelet volume. Otherthan that, I think I'm within range. 

Do you have suggestions on what to eat to make life difficult for SIBO? 

What is MTHFR? 

 

 

Screenshot_20190707_133550.jpg

 

Screenshot_20190711_094918.jpg

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On 7/10/2019 at 10:03 PM, Posterboy said:
On 7/11/2019 at 2:47 AM, Iiv said:

Do you have suggestions on what to eat to make life difficult for SIBO?  

What is MTHFR? 

Liv,

Here is a good link on the overview of a MTHFR Gene defect.

https://www.beyondmthfr.com/mthfr-and-the-acid-reflux-paradox-part-i/

If you are having trouble with energy take the Magnesium Glycinate with meals that Trents is taking ...it should really help your energy levels.

If you don't dream now... you will almost certainly begin dreaming.

Here is the connection between CFS and low magnesium levels.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

"Do you have suggestions on what to eat to make life difficult for SIBO?"

This link that I posted above has some nice tips

https://www.drbenlynch.com/sibo-histamine/

I will quote a few here for easy reference that might help you.  See their paragraph on what you need to know ...it is below their diagram where they start listing things that you can do that might help you.  quoting

1. Histamine intolerance is commonly associated with infections. Find them and eliminate them. Oil of Oregano, Caprylic acid and Allicin are effective at eliminating many forms of bacteria, viruses and other gut infections.

3. Support stomach acid production with betaine HCl, being calm and chewing your food!

4. Support bile acid production with taurine and phosphatidylcholine.

It is me again there are other things that can be done but this a quick tip/starting place.

Note: The Carpylic Acid is found in Coconut Oil and is well know to help  SIBO ...but this typically only a temporary die off solution.

 

I hope this is helpful but it is not medical advise

Posterboy,

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On 7/11/2019 at 12:24 AM, trents said:

My head is spinning!

Trents,

Liv actually posted a nice chart...it can be a bit confusing in the beginning.

The reason I posted the link on under/over methylation it is because they are connected/related issues....but unless you read up on it a little bit it can cause your head to spin the beginning.

There is a Histamine/Methylation axis...when one is up/the other is down.

If you are over methylated your histamine is low and vice/versa.

they are two sides of the same coin  ...but no body tells you that.

The reason the Imitrex triggers your histamine storm is MAO/DAO shares the same pathway.

Here is nice over view on this connection to how tyramine and MAO inhibitors set off the histamine storm in people under/over methylated....you want the happy middle.

See this sciencedirect link that explains this connection.

https://www.sciencedirect.com/topics/nursing-and-health-professions/tyramine

quoting the tryamine diet and migraine article


MIGRAINE AND DIET

M.R. Costa, M.B.A. Glória, in Encyclopedia of Food Sciences and Nutrition (Second Edition), 2003
Tyramine

"Tyramine is a vasoactive amine that promotes blood pressure elevation, resulting in pain. Tyramine leads to cerebral vasoconstriction and subsequent rebound vasodilatation that causes a migraine attack in susceptible persons. Episodes can be accompanied by nausea and visual abnormalities. Symptoms are evident 1–12 h after ingestion of food containing tyramine. A dose of 10 mg tyramine has been associated with migraine onset; however, levels of 6 mg can cause migraine in patients under treatment with MAO inhibitors. Alcohol has been observed to facilitate tyramine absorption.

Tyramine is found in a number of foodstuffs, most notably aged and fermented foods and beverages. Cheeses (especially Camembert, Cheddar, Parmesan, and Emmental), overripe bananas, avocado, canned figs, peanuts, pickled herring, dried and fermented meat products and alcoholic beverages (wine, beer) are known to contain tyramine."

It is me again. There was another article/link I wanted to post on Riboflavin and it's connection to regulation of Tyramine but I can't find it right now.

In the meantime read this article about Riboflavin connections in Migraine sufferer's it is very comprehensive overview entitled "Riboflavin Has Neuroprotective Potential: Focus on Parkinson’s Disease and Migraine"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5517396/

I hope this is helpful but it is not medical advise.

Posterboy,

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20 minutes ago, Posterboy said:

Liv,

Here is a good link on the overview of a MTHFR Gene defect.

https://www.beyondmthfr.com/mthfr-and-the-acid-reflux-paradox-part-i/

Posterboy,

Good grief!  

The MTHFR Gene and the variants of it are NOT defects!  The link you provided actually is trying to sell you supplements making it not very credible.  About 40% of the population has the MTHFR and all those people are not defective, nor have health issues.  This is just my opinion, but please try to provide evidence-based research.  Here is a nice article published in SELF magazine that explains it to the average person.  

https://www.self.com/story/mthfr-genetic-testing-explained

Even if you have low stomach acid (your favorite topic) that can be due to common issues like aging or less common issues like Autoimmune Gastritis, taking supplements without a doctor’s recommendation is in my non-medical opinion a waste of money.  Try to work with a GI to determine if you even have any deficiencies or if you even have SIBO.  

I have celiac disease and after learning the gluten free diet and allowing time to heal, my health has improved.  So much, that my celiac disease is in remission based on follow-up biopsies.  I take NO supplements at all.  I took iron supplements in the beginning based on my doctor’s advice because I was severely anemic and I refused to do blood transfusions offered by several doctors.  I chose to heal naturally.  It takes time to heal from celiac disease.  Some celiacs may need supplements for a variety of reasons, but I think that working with a doctor to identify those deficiencies is best.  Save your money for healthy, less processed, gluten free food.  

https://www.nbcnews.com/think/opinion/multivitamin-industry-rakes-billions-dollars-science-says-we-re-not-ncna898191

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1 hour ago, cyclinglady said:

The MTHFR Gene and the variants of it are NOT defects!  The link you provided actually is trying to sell you supplements making it not very credible.  About 40% of the population has the MTHFR and all those people are not defective, nor have health issues.  This is just my opinion, but please try to provide evidence-based research.  Here is a nice article published in SELF magazine that explains it to the average person.

Cyclinglady,

I used that one because it had a nice picture of what a hiatal hernia was....

there is many resources for this information ....I have posted the Celiac.com article before and will do here again as a nice middle ground.

https://www.celiac.com/articles/25027/1/The-MTHFR-Mutation/Page1.html

As far as whether proper supplements work....not all supplements (as a class)..

Here is research that shows it does. .. .entitled "Betaine supplementation decreases plasma homocysteine in healthy adult participants: a meta-analysis"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3610948/

people who have elevated homocysteine levels benefit from replacement stomach acid supplementation with Betaine (HCL).

I hope this is helpful but it is not medical advise.

Posterboy,

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