MTHFR gene defect - anyone familiar?

[Mermaid's Mom 12]

9 minutes ago, Gemini said:

I am a very sensitive Celiac and did not have any problems with many of the certified gluten-free foods. I have used Bob's Red Mill on occasion and never had a problem. If all of these foods were so contaminated, none of us would ever heal.  I am not saying it does not happen but I think the problem is way over blown. Some of us need to eat grains for weight gain. If I stop eating grains, I lose weight and feel crummy. I am one of those who feel better on grains but I also work out hard in the gym and find it made all the difference in how I felt.  I have more energy too.  The diet that Dr. Fasano worked on is not followed by the vast majority of Celiac's because many do heal being just gluten free.  There are other factors that play into healing besides what you put in your mouth.

I think for most who have problems with grains, it will make itself apparent without cutting out too many foods. We usually track what we eat in the beginning more closely so if you are still feeling unwell after some months, then it's time to look more closely at what you are eating...again. I just think the whole idea that all grains are inflammatory and no one should eat them is ridiculous. As Celiac's, we all will have some level of inflammation in our bodies because we have autoimmune disease. Not all of it comes from food.

But it is interesting to wonder about the WHY?  Why are some of us more sensitive?  Why can my son eat ALL THE WHEAT and still poop and math like a champ and my daughter was home sick today because she ate a Vegan, dairy free, nut free, soy free, animal cruelty free cupcake yesterday.  It was stamped with ALL the FREES (except Gluten) and a mistake was made.  But she is 13.

Stripping away all the foods (for now) really helps us ensure that mistakes happen less.  She is whole foods.  If we don't have to wipe the dirt off - she ain't eating it. LOL!

While I am typing this she is making a trail mix of nuts and seeds and dried fruits for desserts.   That is the extent of this "treatment".  At the same time I take her shopping and teach her how to read labels and what to look for. 

I'm lucky she is the age she is because she is savvy. She is motivated.  She learned that she cannot have pasta, pizza, cakes, cookies , muffins, waffles, etc etc.  Not even the gluten-free versions and you know what she said "That is fine - bring it on!"  She was *CURED* for one month.  She wants it back BAD.

But back to the topic - WHY?  Why can't some of tolerate wheat?  Why are some SUPER sensitive?  Could there be a gene that is defective?  Maybe??

[Feeneyja 44]

Mermaid's Mom, I know, WHY, just why?  I have 6 kids. Most of them have absolutely no problems with any food. Not my one daughter. She lost a year of school because of this until we figured it out. It's amazing how well her brain works now!  And she has no pain walking anymore. She was 8 and seemed doomed to no longer run and play because of chronic pain.  

Another one of my children also seems to have similar issues brewing.  But everyone else, nothing seems to bother them. 

The genetic testing is a difficult thing. I used to be a DNA sequencing technician. Lots of information. Just how useful?  There's a lot not known. How deleterious is any mutation? it's all very complicated. There's a lot of redundancy in the functioning of genes so if one has a mutation, others take over and things move along, no problems. That's why 30% of the population can have the "celiac genes" but not the disease. There is more to it. Other triggers, culmination of problems, complexities! 

But isn't it great when whole foods make a difference?  I rejoice at how well my daughter is doing now. The recent glutening she had and neurological symptoms were so frightening. But the resolution is so complete away from gluten. And staying away from grains helps keep her SIBO at bay and keeps away mistaken gluten exposures. While the diet is difficult, there are worse things.  

[Gemini 871]

5 hours ago, Mermaid's Mom said:

But it is interesting to wonder about the WHY?  Why are some of us more sensitive?  Why can my son eat ALL THE WHEAT and still poop and math like a champ and my daughter was home sick today because she ate a Vegan, dairy free, nut free, soy free, animal cruelty free cupcake yesterday.  It was stamped with ALL the FREES (except Gluten) and a mistake was made.  But she is 13.

Stripping away all the foods (for now) really helps us ensure that mistakes happen less.  She is whole foods.  If we don't have to wipe the dirt off - she ain't eating it. LOL!

While I am typing this she is making a trail mix of nuts and seeds and dried fruits for desserts.   That is the extent of this "treatment".  At the same time I take her shopping and teach her how to read labels and what to look for. 

I'm lucky she is the age she is because she is savvy. She is motivated.  She learned that she cannot have pasta, pizza, cakes, cookies , muffins, waffles, etc etc.  Not even the gluten-free versions and you know what she said "That is fine - bring it on!"  She was *CURED* for one month.  She wants it back BAD.

But back to the topic - WHY?  Why can't some of tolerate wheat?  Why are some SUPER sensitive?  Could there be a gene that is defective?  Maybe??

Sensitivity probably lies in the genetics of Celiac.  The double DQ2 gene that is have is known to be associated with more severe cases of Celiac.  So, some of the Celiac genes have their own criteria that make the whole disease state more severe.  But I can eat gluten free processed food without issue.  The longer I have been gluten-free, the more I can tolerate and that is because of healing.  It took almost 10 years before I started absorbing fats well.  That was reflected in my cholesterol numbers.  It was really low for years after diagnosis and then it went up and it was the good cholesterol that jumped significantly. Sometimes it can take a really long time for it all to come together.

 

[pikakegirl 40]

I am positive for the single MTHFR. Since diagnosis 10 years ago I ate an elimination diet of 10 foods. Brown Rice, Sweet Potato, green beans, peas, Apple, peach, raisins, egg, salmon, sardine. All organic, no go, antibiotic, growth hormone, no salt or preservatives. I can not even tolerate citric or ascorbic acid. My numbers have been perfect including CRP and cholesterol. For the first time in my life my HDL is over 40. Just last year I started tolerating more foods and trying gluten free bread. My numbers went bad. Not my Igg, Iga, Ige or Ttg. I am back on my elimination diet and my numbers are normal again. My 10 year colonoscopy and pill cam are perfectly clean and healed. Have no idea why my numbers went off. I am militant gluten free with gluten free home. Anyone else have this. I suspect other food Allergy? So far generic tests don't show what though. I suspect an ingredient in gluten free bread.

[cyclinglady 1,663]

1 hour ago, pikakegirl said:

I am positive for the single MTHFR. Since diagnosis 10 years ago I ate an elimination diet of 10 foods. Brown Rice, Sweet Potato, green beans, peas, Apple, peach, raisins, egg, salmon, sardine. All organic, no go, antibiotic, growth hormone, no salt or preservatives. I can not even tolerate citric or ascorbic acid. My numbers have been perfect including CRP and cholesterol. For the first time in my life my HDL is over 40. Just last year I started tolerating more foods and trying gluten free bread. My numbers went bad. Not my Igg, Iga, Ige or Ttg. I am back on my elimination diet and my numbers are normal again. My 10 year colonoscopy and pill cam are perfectly clean and healed. Have no idea why my numbers went off. I am militant gluten free with gluten free home. Anyone else have this. I suspect other food Allergy? So far generic tests don't show what though. I suspect an ingredient in gluten free bread.

I don't understand.  What numbers went bad?  

 

[pikakegirl 40]

My CRP, Sed rate, and cholesterol went high but my Celiac blood work stayed unremarkable.

[cyclinglady 1,663]

4 minutes ago, pikakegirl said:

My CRP, Sed rate, and cholesterol went high but my Celiac blood work stayed unremarkable.

You have Hashimoto's Thyroiditis, right?  Your CRP and sed rate may never go down with Hashi's even though you are doing a good job of being gluten free for your celiac disease.  celiac disease is the only Autoimmune disease (AI) that you can control because the trigger is gluten.  No such luck with other AI issues like Hashi's, lupus, etc.   Your cholesterol may have increased simply because you are absorbing food now that your gut has healed.  Talk to your doctor to put your mind at ease.  

 

[pikakegirl 40]

About 6 months after I went gluten free my CRP and cholesterol became perfect. I have had Hashimotos since 1997, Celiac diagnosis 2007. Numbers great for 9 years. As soon as I added food to my strict 10 food diet numbers went high. They are normal now that I went back to diet. My primary doctor and gastrointestinal Dr have no clue.

[cyclinglady 1,663]

I hope you figure it out!  ?

[Jmg 299]

6 hours ago, pikakegirl said:

Just last year I started tolerating more foods and trying gluten free bread. My numbers went bad. Not my Igg, Iga, Ige or Ttg. I am back on my elimination diet and my numbers are normal again. My 10 year colonoscopy and pill cam are perfectly clean and healed. Have no idea why my numbers went off. I am militant gluten free with gluten free home. Anyone else have this. I suspect other food Allergy? So far generic tests don't show what though. I suspect an ingredient in gluten free bread.

First, I take my hat off to you for the discipline you've shown keeping to the diet! 

When you reintroduced foods did you do it one at at time? That could be a way of narrowing it down. You could also start with other whole foods before moving to a processed food like gluten-free bread, I'm guessing that just getting more variety in the fruits and vegetables would be a win? 

As you say it's probably not gluten, but I know that there are some gluten-free breads which don't agree with me and which seem to trigger a mini reaction, nothing on the gluten scale but still enough to put me off. Sometimes I'll see people citing xantham gum or other ingredients. I don't know any more than that though.

I'm also interested in the debate over ncgs, where some scientists believe it's other proteins within the wheat which are triggering an innate immune response rather than the gluten itself. I don't think they would make it into gluten-free bread however, otherwise I'd be in a bad way...

best of luck, hope you find an answer or at least get some additional foods y can enjoy 

[Posterboy 213]

On 5/1/2017 at 6:52 PM, Mermaid's Mom said:

We saw a Naturopath today and I learned all about this and we are now currently treating my daughter for it.  It was a LOT of info but I will give you the jist of what I understood (very over-simplified) from the meeting.  I would love any additional info as well feel free to clear up anything I seemed to have misunderstood.

For starters it was lovely to have a person who was willing to see the WHOLE picture.

I gave her the full chronological history, all diagnosis's and all current supplements.   She explained that there is a gene MTHFR.  We all have it and some people have one that is very effective and some have one that is slow.  That it is directly related to 5 systems (the sensory system is one, then digestive, neurology etc).  These 5 systems all work together like clock gears.  If one gear is wonky they all get impacted.  You begin to see things go wrong potentially from all the systems.  So sensory issues, anxiety, brain fog, constipation etc.  MTHFR gene has a direct impact on the processing of the B's (B12, B9, B6).  She said that even if there is no B12 deficiency in bloodwork people with this deficiency still require B12 (myelinated!!!) supplements because they don't effectively process B's.  Once this derails (meaning it goes undiagnosed) that B deficiency starts to impact those 5 systems.

Oh and there is a genetic component.  Many people (50%?) have a defective MTHFR gene but many will have no symptoms.  The severity of the symptoms can be from mild to severe. 

She says all grains are anti-inflammatory so we now need to follow a Paleo diet and she tweaked our supplements.

The B12 we were using was not myelinated so we bought one that is.  She swapped our Magnesium Citrate to Mag Glycinate.  Kept our Probiotic and Omega 3 but added in an E8 (all 8 types of Vit E) and Cod fish oil. 

It was super interesting and now I wonder if Gluten Ataxia and MTHFR are the same issue??

Any thoughts?

 

Mermaid's Mom and Freeneyja,

I had recently done some research on this topic and how low b-12 develops when people have low stomach acid.

Here is the thread

but it turns out people with the MTHFR gene can be treated with (replacement stomach acid).

this research is 30+ years old and taking betaine then and now can help people absorb b-12 for those who are low in it.

https://www.ncbi.nlm.nih.gov/pubmed/6877313

Here is a study where people with low b-12 (not deficient levels) of b-12 were diagnosed as having MS instead.

https://www.researchgate.net/publication/287260337_Vitamin_B12_deficiency_can_mimic_multiple_sclerosis_-_Report_of_two_cases

see their conclusion they summarize low b-12 levels and good response (clinical outcomes) allowed them to confirm/establish a b-12 deficiency.

This is the case for many B-vitamins.  If you respond to supplementation then this confirms the clinical observation.

Here is why even when some tests normal for b-12 (Feeneyja) see this link you could still be low and supplementing can confirm the clinical diagnosis.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3354399/

They say concerning their conclusion quoting "In contrast to some previous reports, our findings did not support any association between B₁₂ deficiency and MS."

And you will see study's that say one thing ... B-12 and MS there is no  association right?

But these researchers are more honest than most.

always looks at a research papers "discussions" because sometimes the headline (news) is really what is not said in the sound bite.

They admit quoting

"This study had some limitations: We only relied on blood B₁₂ concentration, while serum holotranscobalamin, homocysteine, and methylmalonic acid levels may be considered more reliable indicators of B₁₂ deficiency than the concentration of B₁₂ in blood. Since, patients with low-normal or even normal serum Vit B₁₂ values may be deficient for Vit B₁₂, thus measurement of the serum concentrations of the metabolic intermediaries’ homocysteine and methylmalonic acid appears to be more sensitive for the diagnosis of these deficiencies than serum vitamin levels. We checked serum vitamin B₁₂ in diagnosed patients, who was in remission, and we did not check it in new cases; it can be considered as another limitation of our study."

**** my comment: if they didn't test new MS patients how could they conclude that there is no association between b-12 and MS.  but since most people don't have time to read the "fine print" the damage is done in a manner of speaking and everybody quotes there is not an association.

Freeneyja they even admit  "Normal serum B₁₂ concentrations in our MS patients, however, cannot rule out B₁₂ deficiency. There is evidence that patients with MS may be functionally deficient in vitamin B₁₂, as indicated by elevated levels of homocysteine.[11]

Indicating if you have high homocysteine levels then you probably have a b-12 functional deficiency even when b-12 tests show normal or low normal.

And why supplementing with b-12 and betaine (HCL) in the previous study helps people with MTHFR gene begin to absorb b-12 at normal levels putting Homocystinuria in remission.

I hope this is helpful.

Please do not use this information to diagnose or treat your child.  This is not medical advice.

But homocysteine levels are reversible.

I know I used to have elevated levels.

Sublinguals work well for B-viamin's in general but especially can be found in extremely high dosages for b-12.

By using sublinguals you bypass possibly being the poor absorption in the stomach.

see my blog post about low stomach and why it is common in celiac's or others who have a poor GI experience.

If supplementing with betaine improves b-12 absorption (and it does) then it seems to me your child has too low stomach already or is functionally deficient in intrinsic factor ( an enzyme made by the stomach or should bee) that helps us absorb b-12 when we are low in intrinsic factor or when our stomach acid is not high enough to activate it we become low in b-12.

Your need to look up pernicious anemia as well.  I have too had this and am now normal.

In extremes cases your nerve endings (in essence fall asleep) a tingling ensues i.e, nerve pain.

Whole sides of my body would ("fall asleep") while I was asleep and two or three times a night might nerve tingling (pain) would wake me from my sleep.  Once they were jolted out of their sleep  . . . by movement I could sleep another couple hours till  it would happen again and while awake in my finger and toes it seemed like people (leprechauns or fairies) presumably would delight with sticking me with pins.

Now thankfully all these symptom's are gone praise bee to God!

Ask your doctor about cystadane it is the only FDA approved betaine prescription medicine if you really suspect a MTHFR gene issue because it has been approved for the treatment of this condition.

good luck on your continued journey.

***** again this not medical advice only my personal history of pernicious anemia (remission from it), high homecysteine levels (and remission from them)  and how my personal experience of taking B-Vitamins keep/help us stay healthy. 

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

I share this information that hopefully other people can helped by the same comfort I have received of God.

2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble,  by the comfort wherewith we ourselves are comforted of God.”

Posterboy by the grace of God,

 

 

[emma6 25]

10 hours ago, Posterboy said:

see my blog post about low stomach and why it is common in celiac's or others who have a poor GI experience.

If supplementing with betaine improves b-12 absorption (and it does) then it seems to me your child has too low stomach already or is functionally deficient in intrinsic factor ( an enzyme made by the stomach or should bee) that helps us absorb b-12 when we are low in intrinsic factor or when our stomach acid is not high enough to activate it we become low in b-12.

 

 

taking acid for self diagnosed low stomach acid sounds quite dangerous for an adult let alone a child.

Quote

 

Gastroenterologist Dr. Ralph Giarnella on HCL betaine

Giarnella MD: I would be interested in testing how much HCL acid is really in the capsules Poliquin is giving his athletes. HCL is one of the most caustic acids. Only Sulfuric (battery) acid and Flouric acid are more caustic. Just a small amount of undiluted HCL in the esophagus can cause significant ulceration.

Poliquin wrote: Here are a few of the symptoms of low stomach acid:
belching or gas within one hour of a meal, bloating shortly after eating, bad breath, loss of taste for meat, nausea after taking supplements, brittle fingernails, undigested food in stool, foul-smelling stools, stomach pain, desire to skip meals, estrogen buildup, acne, rosacea, depression

Giarnella MD: All false and unfounded statements.

Giarnella MD: If the capsules noted in the above citation in fact do contain Hydrochloric acid then this is a very dangerous and possibly life threatening practice.

I have had patients who developed severe esophageal ulcerations caused by pills which remained in the esophagus too long. Just two weeks ago one of my patients had to be hospitalized and transfused several units of blood because he often would take his medications without drinking fluids. The pills in question did not contain Hydrochloric acid.

On another note, normal acidity of the stomach does not cause a burning sensation. I would be very concerned if anything you eat or drink causes a burning sensation. If there is in fact some HCL in those pills the patients may be developing gastritis (small erosions or ulcerations of the gastric mucosa).

I would love to perform and Esophogastro Duodenoscopy on these clients after they have ingested 5-6 HCL pills and felt a burn. Pass the Maalox please.

full interview/rebuttal:
https://forums.t-nation.com/t/rebuttal-to-poliquins-article-on-stomach-acid/143355

 

i would strongly recommend properly researching all the quackery and pseudoscience alternative practitioners believe before following restrictive diets, jumping on a diagnosis, treatments or paying for unscientific tests.

i fell for all of this when i was so desperate for answers because the natropath i saw was the first 'doctor' to actually take me seriously but in the end it all did a lot more harm than good, not everything that is natural is safe i wish someone had warned me of that.

 

[Gemini 871]

While I do agree with you, Emma, that there are too many bad doctors and practitioners out there, and I am including those within the AMA, low stomach acid is not pseudoscience or quackery in any way. It is common in people with Celiac Disease and to those who are over 60.  Like many things in our body, levels decrease with age.

What bothers me is that the MD crowd declare patients have too much stomach acid if they have acid reflux and automatically put them on acid suppressants without doing any kind of testing, which is bad medicine. It is done because drug companies heavily fund medical schools so now we have conflict of interest. It has changed how medicine is taught and I have heard that directly from medical students.

Quote

Poliquin wrote: Here are a few of the symptoms of low stomach acid:
belching or gas within one hour of a meal, bloating shortly after eating, bad breath, loss of taste for meat, nausea after taking supplements, brittle fingernails, undigested food in stool, foul-smelling stools, stomach pain, desire to skip meals, estrogen buildup, acne, rosacea, depression.

Giarnella MD: All false and unfounded statements.

What stands out for me in this statement is that these are almost all symptoms of Celiac Disease, which in turn can cause low stomach acid.  The doctor quoted sounds like a run of the mill gastro doc they churn out of med school who doesn't end up helping many people and it all revolves around the "belief du jour" he learned when he attended med school.  So very many elderly I know are all on these acid suppressants, long term, and they should not be used long term, but docs do that anyway.  I would agree that experimenting on a child with Betaine HCL might not be the smartest thing to do but in adults with many of the common gastro complaints, it only takes a couple of times taking it with a meal before you know if you have a winner. My mother has severe acid reflux and of course, her ill informed doc has her on acid suppressants...which are not helping.  It continues to get worse and worse (I think she has Celiac also but she is in denial....she's 84) and she will not try the Betaine. So, she suffers and I do not press her further.  It's her life to suffer as she wants.

Lastly, the doctor is criticizing the Betaine as being the culprit in injury to his patients when the real culprit is lack of understanding on their use.  If you take any medication or supplement without liquids, you are asking for trouble.

 

[emma6 25]

thank you for the explaination, makes sense that it is more prevalent among elderly people. i think taking acid is always going to sound very risky to me though as it just makes me think of all the damage acid reflux can do. also those tests sold to swallow a capsule with a piece of sting to test the ph balance of your stomach just sounds like a disaster waiting to happen to me. i guess i'm just very wary since i was diagnosed with a lot of conditions that are real but then also double as a fad diagnosis.

 

[Ennis_TX 817]

The whole acid thing with HCL is  hit and miss, I tried it and it got 10x worse it seemed. But I have a bit of a different kind of acid problem we can get into later.

The whole gene aspect is intriguing, I really wish I knew more about mine, my birth mother still refuses to release medical records and I can only contact her via the adoption agency. Nor can I afford any kind of gene testing (living borderline life right and in need of several more pressing medical procedures).  Anyway I do think alot of it has to do with genetics, but genes can remain dormant and be brought out by various "Shocks" or circumstances. My celiac was hardly noticeable for years, just constipation, and skinny as a kid, then it progressively got worse with fatigue in my teen years then as a young adult I did some stupid stuff like caffeine OD and drinking alcohol poisoning. After which many of the other symptoms started showing and getting progressively worse like the neurological effects, vomiting, constipation lasting over 10 days. And this led to a down ward spiral where I thought I was going to die before my dia.

We are all a bit different, and our bodies all react differently to celiac disease, our supplementation requirements, tolerable foods, what part of our intestines are damaged, how fast we heal, what parts heal, other complications/auto immune disease, etc. it all sorta weaves a web that is own little celiac conundrum the connections between these different issues from the disease cause all kind of varied treatments for each individual with the disease. This all makes treating, diagnosis and understanding it very difficult and confusing. Just have to find your own path through good old trial and error.

[Feeneyja 44]

Ennis, that's a great response. I have heard it said that genetics loads the gun and environment pulls the trigger. Genetics is not everything and while genetic testing can be very helpful, it also can have adverse affects on our decision making processes. Never get too worked up about the results because there is a lot that goes into the hows  and whys of the turning on and off genes. 

I am part of a SIBO Facebook group because it is one of the symptoms my daughter needs to stay on top of. Lots of folks taking acid, lots of negative effects, some are helped. I see it this way:  our bodies are designed to work a certain way. We can't ALL have low stomach acid. There is usually a cause for it. SIBO is one such cause. We have gotten to the root of her SIBO and in turn have enhanced digestion. High carb/starch diet, stress, h. Pylori infection (believed now to be the cause of most ulcers)...these are the things we need to address. A lot of meds (even supplements) are only bandaids. 

[plumbago 52]

Discovered during work on the genome project in the 1990s, the MTHFR gene is responsible for producing an enzyme that processes the amino acid homocysteine into methionine. When there is a mutation, this complicated multi-step process results in a build-up of homocysteine. High levels of homocysteine have been linked to development of cardiovascular disease and in general it promotes clotting. In pregnancy, the mutation of this gene can cause clots along  the placenta and uterus wall, and it is believed that early pregnancy loss can occur this way, however research is ongoing. Women who test positive for the mutation,  because B6 and B12 are cofactors for metabolism of homocysteine, may begin a course of B vitamins that are continued through the birth of the child: B-6; B-12; folate; as well as vitamin D and perhaps a baby aspirin. But with regard to risk of cardiovascular disease, according to research findings, while levels of homocysteine may decrease with B vitamin supplementation, the linkage between B vitamin supplementation and decreased incidence of certain cardiovascular diseases or disorders such as venous or arterial thromboembolism has not been made (Anderson & Weitz, 2010).

Plumbago

 

[Posterboy 213]

To All,  (But I am thinking of Emma6, Gemini, Feeneyja, Mermaids Mom, Ennis_TX et al) specifically,

As I write this I have no grand plan and will pose as many questions (hopefully not) as I am trying to answer (maybe).

****** PLease do not use anything in this post as medical advice.  Do research this topic extensively and work closely with your doctor on finding something that works for you but it worked for me.

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

I have not written this out before just as my thoughts come to me and the will probably ramble.

Emma 6 the supplementation I was referring too was the FDA approved Cysadane for children with the MTHFR gene.

If taking Cystadane (Betaine Anydrous) https://dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=15583

improves absorption of b-12 and it has been medically proven to do so then it more like Feeneyja and Ennis_Tx is saying.

With Dr. supervision cystadane is used to homocystinuria in pediatric patients

Quoting " Patients have been treated successfully without adverse effects within the first months or years of life with dosages of 6 grams per day or more of betaine with resultant biochemical and clinical improvement."

More like a 50/50 solution of genetics and environment.

I was trying to hilight some genetic sounding diseases are based in poor nutrition.

We see this a lot in auto-immune diseases.  Doctor's readily prescribe hormone replace strategies (for your thyroid) like

Levothyroxine. 

An auto-immune condition is happening for sure.  That is what is happening but not why.

Nutrition plays a bigger role than we understand often.

I once had a borderline thyroid problem but by supplementing with Zinc, Iodine and Selenium my thyroid is now normal.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746228/

If supplementing with strong stomach acid improves absorption of b-12 it is not an 100 percent genetic condition.

It is a 50/50 condition.

Now let me say there is not a vitamin/mineral (for everything) but there is a vitamin/mineral for many things that doctor's do not stress today because they don't study nutrition to begin with usually.

Where next?

Ennis_Tx and Feenyja,  (SIBO) we don't have all have low stomach acid. while that is true but most people who have GI problems do improve when they restore their stomach acid to healthy levels (Ennis_Tx) not withstanding and will tell you his 10X worse than regular old heartburn. If you had the chance to read the link I posted in digestive issues and enzymes thread you will see many of the symptom's resemble bile reflux (bile in vomiting and unintended weight loss) being among the symptom's plus good old heartburn.

http://www.nytimes.com/2009/06/30/health/30brod.html

As for those who take PPI's of any kind it can be very hard to begin with to get off of them because of the "rebound effect" of stopping them too quickly and you can see why it might be tough to stop.

the problem is as gemini pointed out with talking to her mother that often taking PPI' in the first place makes it worse.

Here is the research if you want to read it ( though you will have to decide for yourself) Emma6

https://www.sciencedaily.com/releases/2007/02/070212185309.htm

quoting in it's entirety because it is a short article.

Heartburn Treatment May Increase Bile Reflux

Date:

February 13, 2007

Source:

American College of Chest Physicians

Summary:

A new study may explain why individuals treated for acid reflux with proton-pump inhibitors (PPI) still experience reflux symptoms.

Share:

 

FULL STORY

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A new study may explain why individuals treated for acid reflux with proton-pump inhibitors (PPI) still experience reflux symptoms.

Researchers from the Lynn Health Science Institute in Oklahoma City, OK, treated 15 individuals with significant complaints of heartburn, with either a PPI or with a placebo. After one week, all participants underwent monitoring and polysomnography, both of which were done after participants were given an acid-inducing meal to raise the baseline occurrence of reflux.

Researchers found that, while total reflux events and acid reflux events decreased considerably with PPI treatment, nonacidic reflux events, such as stomach bile regurgitation, were significantly greater with PPI treatment. Researchers suggest that this increase in nonacid reflux events may explain persistent symptoms in some patients, despite being treated with PPIs.

This study appears in the February issue of CHEST, the peer-reviewed journal of the American College of Chest Physicians.

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Story Source:

Materials provided by American College of Chest Physicians. Note: Content may be edited for style and length.

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American College of Chest Physicians. "Heartburn Treatment May Increase Bile Reflux." ScienceDaily. ScienceDaily, 13 February 2007. <www.sciencedaily.com/releases/2007/02/070212185309.htm>."

 

It is me again.

 

And so now we have a viscious cycle that is almost impossible to break.

 

Timeline tells us that if it wast truly high stomach acid as you here in almost every add for PPI's it would happen when there was no food in the stomach to begin with the fact that it happens even when we eat small meals tells me it already TOO low to even digest small meals.

 

Freeneyja I would say the opposite is true we can't ALL TRULY have the incredibly high stomach acid you alway's here advertised.

 

see this online article by dr. myatt  What's (really (My words)) burning you  https://www.drmyattswellnessclub.com/WhatsBurningYou.htm

 

she summarizes it well when she asks why do people take acid blocker to begin with.

 

Quoting

"Why People Take Acid-Blockers (obviously my words)

Why in the world would anyone take antacids or acid blockers to correct a deficiency of stomach acid? In two words: symptom relief.

But if heartburn or gastro esophageal reflux disease (GERD) are caused by too little stomach acid, why does blocking more of the acid relieve the discomfort? And why isn't that a good thing to do?

Remember, even weak stomach acid does not belong in the esophagus. When ALL acid production is blocked, the "backwash" of stomach contents into the esophagus will not burn. However, repeatedly using this "band-aid" method has some serious long-term consequences."

It is me again.

which now now makes it even worse if we are truly high in stomach acid then our stomach acid would cause or stomach to churn between meals and simply eating food (snacks) would keep the strong acid diluted so it never became too strong in the first place but even we eat smaller and smaller meals the stomach acid problem gets worse?????

The logic is flawed.

As for those who take PPI's and sware it must be TOO high (see research above it is the backwash not of stomach (because remember you are producing almost NONE now if you are taking PPI's) like candy but bile backwash.

And if that is  so then your stomach acid could not possibly be HIGH.

Your symptom's are HIGH but not your acid because BILE is very caustic.

see this encycylopedia britinnacia artile on the pH of bile.

https://www.britannica.com/science/bile

we are said to get (common figure of speech) "bile in our throats" when things are not going well and we want to say things vile but usually hold our tongues if we can it makes us so mad.

Quoting "Bile is composed of bile acids and salts. . .  that keep the total solution slightly alkaline (with a pH of about 7 to 8)"

 

And while bile in and of itself is not bad in the right place (the duodenum) where it would normally neutralize stomach acid but not in the stomach itself.

 

If bile refluxes into the stomach it is a very bad thing indeed because it cancels the action of the stomach acid to break down proteins and body attacks protein in  our small intestines (because they are invaders that must be destroyed) gluten, lactose, peanuts, seafood, soy, casein etc. all proteins that our body is trying to defend us from.

 

You have heard it said if it passes the "acid test" then it is ok? right-- well that is true here too.  Acid denatures proteins in to harmless peptides (Not bile) it causes caustic reflux because your body is now being scalded and it must get it out of your body to minimize damage (the reflux) is a safety feature to protect from too much damage being done.

 

Our defenses are weak (because or stomach acid is weak) (and has been weakened to an ineffectful level by bile in the stomach where it does not belong.

 

And the viscisous cycle repeats itself. . . .

 

New research bears the fact out but like most good research people often don't understand or believe it the first time we hear it.

 

https://www.yahoo.com/news/gerd-stomach-acid-may-not-131750023.html

 

entitled "Have GERD? Stomach Acid May Not Be the Only Cause, Study Says"

 

Quoting

"In the new study, Kerry Dunbar, M.D., Ph.D., and her colleagues looked at 12 patients who had esophagitis (when the esophagus becomes irritated and swollen), a complication that isn't seen in every GERD patient. Each of the patients stopped taking their proton pump inhibitors for 12 weeks. The doctors took biopsies and closely observed what happened both before as well as 1 and 2 weeks after the patients stopped taking their medication.

The patients did end up developing more damage, as the researchers thought they would. But the tissue didn't show a chemical-like burn that might be expected from stomach acid splashing into the esophagus. Instead, they found white blood cells, inflammatory proteins, and signaling molecules (known as cytokines), which are more consistent with what you would find when the body reacts to an injury."  Think Eosinophilic Esophagitis (EoE) (More on that latter)

And while they estimate this too be a low percentage of patients (since this new research is new a low percentage has been assigned to the believed percentage of the population this may be occurring in)

As is often the case anytime bad news come out about say high fructose corn syrup (the offended party will issue a statement/opinion) etc that say's well more study is needed.

see their response.

Quoting

"Although this radical change in the concept of how acid reflux damages the esophagus of GERD patients (it) will not change our approach to its treatment with acid-suppressing medications in the near future, it could have substantial long-term implications," said senior author Stuart Spechler, M.D., in a statement. Dr. Spechler is a professor of Internal Medicine at UT Southwestern and chief of the Department of Gastroenterology at the Dallas VA Medical Center."

 

Despite research that shows it (PPI's) could be making bile reflux worse and that it might not even bee stomach acid at all (in an admitted small percent in this study) they admit we will still give people acid reducers (My words locking them into taking them forever) when they should only be used for the treatment of ulcers (2 months or less) Not 2 years plus ad infinitum where people can never get off of them effectively like gemin's mom.

 

I have one (ok a couple) more links to share then I have rambled long enough and then you decide what is best for you (Ennis_Tx) not withstanding.  He has a serious medical problem that should only be treated with medical supervision.

 

Back to Eosinophilic Esophagitis (EoE) it is fairly modern diagnosis and usually has two from the kind that responds to PPI's and the kind which doesn't.

 

I recently helped a friend with EoE who is now better.

 

Remember I said our defense get weak and that is what the new research bears out right?  Our body  is quoting again

 

"Instead, they found white blood cells, inflammatory proteins, and signaling molecules (known as cytokines), which are more consistent with what you would find when the body reacts to an injury."  (consistent with an EoE diagnosis today my words).

 

 

What else does the medical research say about inflammation and the esophagus.

 

Remember I say EoE is a fairly modern disease mainly becoming a commonlgy diagnosed disease in the last 20 years or so.

http://link.springer.com/chapter/10.1007%2F978-1-60761-515-6_1

 

that is important . . . . remember timeline

 

remember I said our defenses get weak the question remains why? right.

 

We know what is happening (or we thing we do) our body is becoming inflammed our body is attaching itself right?

 

But why? right.

 

Well let's go back to the medical research and see if we can find answer.

 

I credit knitty kitty with this find. 

 

Approximately 5 years before (let me say this for emphasis) 25+ years ago medical research showed inflammation in our GI linings respond to supplementation by Vitamin(s) and yet here we are still talking about this subject debating its merits.

https://www.ncbi.nlm.nih.gov/pubmed/2084620

 

Quoting the full abstract here again for easy reference and it is small/short in length.

 

 

 

Nutr Cancer. 1990;14(3-4):233-8.

Pathological effects of pellagra on the esophagus.

Segal I¹, Hale M, Demetriou A, Mohamed AE.

Author information

 

Abstract

This study determined the pathological effects of niacin/tryptophan deficiency on the esophagus. Nine patients with severe clinical pellagra and 31 age- and sex-matched controls were assessed. All pellagrins had an esophagitis varying from severe to mild. The esophagitis improved in five patients following six to seven days of vitamin therapy. The relationship between vitamin deficiencies and esophageal cancer is discussed.

PMID:

2084620

DOI:

10.1080/01635589009514098

[Indexed for MEDLINE]

 

It is me again.

In only a week people responded to Niacin(amide) supplementation and put their esophagitis in remission.

Yet today when inflammation shows up in the esophagus as Heartburn (new research) and they admit it probably it not initially at least due to (HIGH) stomach acid well.  . . . paraphrasing we don't see this immediately changing the way we treat heartburn (and why would it) . . . more study means more time to prove the new research wrong.

Note research above 25+ years ago that prove inflammation (esophagitis) in the throat is from an auto-immune reaction that happens when our membranes becomes inflamed and Niacin(amide) treated it only a week.

Who knows how much better they would have gotten if they had not stopped the study short.

Emma6 and why I prefer not to talk about Stomach (low or high) because it is confusing (not the root cause) and is easy to take wrong at too little a dose to help (especially if you are 1) already taking an acid reducer like Gemini's mom and 2) like Ennis_Tx (probably) has Bile Reflux from taking Acid reducers making things so bad it will be nigh impossible to every quit) like smoking you can' seem to stop even when the research (in my mind says otherwise).

Freeneyja I get it people are really suffering  (SIBO, h. pylori) etc. but when you begin to understand digestion really is a north south process things really begin to make sense.

http://bodywisdomnutrition.com/digestion-a-north-to-south-process/

Then the research by Prousky 15+ years ago (emma6) that "Niacin(amide) treats digestive problems" really starts to make sense.

Here is the full paper.

http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

I am only trying to educate here because I know it helped me.

and yes I know we are not all the same but the process is the same for all  of us.  Digestion that is.  When it works properly health is alimentry (of or pertaining to the gut).

Digestion works the same for all of us or it should when the "Natural Order" of things has been restored and when they are out of whack (SIBO, Bile reflux) etc.  it is a very viscious cycle.

One final link provided in the digestive and enzyme thread and provided here for easy reference.

http://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242

the user sickboy1 summarizes how he fought off the effect of low stomach acid and bile reflux and may be helpful for some of those who might struggling with a healthy GI experience.  I will post it here https://www.celiac.com/forums/topic/117585-digestive-issues-and-enzymes/#comment-973205 for those who might want to read so this post doesn't get longer than it already is.

If the 2nd brain your GI system is not function properly how can we ever expect the brain on our shoulders to every function properly.

good luck on your continued journey all,

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

 

 

 

 

 

[Ennis_TX 817]

As posterboy stated in my case the stuff made my stomach issues much worse. But stemming from another discussion with him I found large amounts of digestive enzymes helped out most of my stomach issues with digestion. Had to mix it up with extra bromelain and a blend. Then upped to 1.5 dosage taking some before and some after the meal.