How many other celiacs still have symptoms on gluten-free diet?

[CeliaCupCake]

Posterboy,

Yes, I read the article, and thanks for highlighting the key points for me. I have now read all you’ve sent and am convinced enough to at least try BetaineHCL. But do I go against my doctor’s advice and stop taking antacids as well? She stressed I should take them to prevent further oesophagus damage, though agrees that I did the right thing taking myself off the PPIs.

For me, the PPI (omeprazole) couldn’t have triggered my coeliac because I was diagnosed with coeliac ten years before I started taking them. I’ve been taking the PPI for the past year, though stopped several weeks ago after reading your posts.

[Scott Adams]

Keep in mind here that nothing on this forum should replace the medical advice from your doctor, and you should discuss this with them before doing it. I think if you approach them with the idea of trying a different approach for a couple of months because the current one isn't working for you they might agree that such a short term test would not be a bad idea. The fact is, the current approach isn't really working for you right? If that is the case, you clearly need to keep exploring other options.

[CeliaCupCake]

1 hour ago, Scott Adams said:

Keep in mind here that nothing on this forum should replace the medical advice from your doctor, and you should discuss this with them before doing it. I think if you approach them with the idea of trying a different approach for a couple of months because the current one isn't working for you they might agree that such a short term test would not be a bad idea. The fact is, the current approach isn't really working for you right? If that is the case, you clearly need to keep exploring other options.

Thank you, Scott. That sounds like sensible advice and I will of course consult with my doc before I make any drastic changes. 

[Posterboy]

On 5/22/2021 at 6:59 AM, CeliaCupCake said:

Posterboy,

Yes, I read the article, and thanks for highlighting the key points for me. I have now read all you’ve sent and am convinced enough to at least try BetaineHCL. But do I go against my doctor’s advice and stop taking antacids as well? She stressed I should take them to prevent further oesophagus damage, though agrees that I did the right thing taking myself off the PPIs.

For me, the PPI (omeprazole) couldn’t have triggered my coeliac because I was diagnosed with coeliac ten years before I started taking them. I’ve been taking the PPI for the past year, though stopped several weeks ago after reading your posts.

CeliaCupCake,

I had been in the hay field for the last few days......so I am just getting back to the forum to answer your question(s).

If you mean by antacids things like Tums and Rolaids then taking them won't hurt you....if you are only taking them until you get over your acid hypersecretion rebound you are now feeling.

What is happening with PPISs is explained here well....

People get low in Stomach Acid and then they lock themselves in by taking PPIs.

https://www.foxnews.com/health/gerd-or-nerd-new-type-of-heartburn-doesnt-respond-to-drugs

The most  horrible "fire down there" feeling you rebounding with it from Bile and not stomach acid....

The Bile is squalding your esophagus (which is uncoated) unlike your stomach with is mucus covered....

This HHMI article explains why this is so...

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

Taking the BetaineHCL  with Pepsin can help you hop over this rebound wall....

Taking a B-Complex will be helpful/important to get you over your Heartburn/GERD Long term....

When you can BURP two hours after you have finished your meal  (without bloating or Heartburn) you are now digesting Proteins again in your diet.

Here is Prousky full citation of how Niacin and /or Niacinamide (the non flushing form of Niacin aka Vitamin B3) treats low Stomach Acid.

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

You can do it with just Niacinamide but it is better to do with a B-Complex.....because you are not just low in Niacin.....you are definitely low in B1 (Thiamine), B2 (Riboflavin) and B6 etc....

Stress in the 6 months before you developed  your initial heartburn is/was the trigger.....because STRESS burns energy and we can't make energy from our food without B-Vitamins.

See this research that explains the connection....

Entitled "The effect of life stress on symptoms of heartburn"

https://pubmed.ncbi.nlm.nih.gov/15184707/ 

This was worked out 15+ years ago and because everything is a genetic disease today doctor's don't consider the role stress plays in our health today!

I wrote an (two actually) open letter about this issue to other GI sufferers still suffering....

I am sorry If I have cited before (I am not up (right now) on what I have quoted already)) and I am afraid If go back a page I might loose what I have already typed....

The 2nd Open Letter did much better than the 1st Open Letter because the 1st one educated others so the 2nd one allowed others to question and believe that like you your Low Stomach Acid issues where being diagnosed as HIGH stomach acid instead.....locking in your GI Problems and NCGS from really Low Stomach Acid....

I am not alone in this....this phenomena (Low/NO Stomach) has been studied in Celiac's and DH patients.

I consider this the "Smoking Gun" Research on the topic.

Entitled "Gastric morphology and function in dermatitis herpetiformis and in coeliac disease"

https://pubmed.ncbi.nlm.nih.gov/3992169/

At 35+ years old.....today's doctor's don't know today that Celiac disease and other GI problems like UC and Chron's and IBS is happening because we first become low in Stomach Acid (FIRST).....

I have done the research.....it is clear that Niacin and Tryptophan helps GI problems!

See this research about how Niacin helps UC etc...

Entitled "Niacin ameliorates (IE Helps) ulcerative colitis (aka UC) via prostaglandin D 2 ‐mediated D prostanoid receptor 1 activation"

See this one on IBS and Trytophan 

Entitled "Tryptophan: ‘essential’ for the pathogenesis of irritable bowel syndrome?"

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

The same role for Tryptophan ( a precursor to Niacin in the body) treats Celiac disease in the same way....

See this research entitled "Tryptophan's role in celiac pathway in mice points to treatment strategies"

https://www.eurekalert.org/pub_releases/2020-10/aaft-tri101920.php

CeliaCupCake you now know enough to understand this is from being/having Low/NO Stomach Acid to begin with.....and raising your Stomach Acid will help protect you from the Dysbiosis (Overgrowth of Bad Bacteria) like H. Pylori and SIBO etc....

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

Good luck on your continued journey!

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

If you have any particular questions you still have.....you could always PM me.

I am always glad to help those who want my help!

Posterboy by the Grace of God,

[CeliaCupCake]

On 5/26/2021 at 12:11 AM, Posterboy said:

CeliaCupCake,

I had been in the hay field for the last few days......so I am just getting back to the forum to answer your question(s).

If you mean by antacids things like Tums and Rolaids then taking them won't hurt you....if you are only taking them until you get over your acid hypersecretion rebound you are now feeling.

What is happening with PPISs is explained here well....

People get low in Stomach Acid and then they lock themselves in by taking PPIs.

https://www.foxnews.com/health/gerd-or-nerd-new-type-of-heartburn-doesnt-respond-to-drugs

The most  horrible "fire down there" feeling you rebounding with it from Bile and not stomach acid....

The Bile is squalding your esophagus (which is uncoated) unlike your stomach with is mucus covered....

This HHMI article explains why this is so...

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

Taking the BetaineHCL  with Pepsin can help you hop over this rebound wall....

Taking a B-Complex will be helpful/important to get you over your Heartburn/GERD Long term....

When you can BURP two hours after you have finished your meal  (without bloating or Heartburn) you are now digesting Proteins again in your diet.

Here is Prousky full citation of how Niacin and /or Niacinamide (the non flushing form of Niacin aka Vitamin B3) treats low Stomach Acid.

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

You can do it with just Niacinamide but it is better to do with a B-Complex.....because you are not just low in Niacin.....you are definitely low in B1 (Thiamine), B2 (Riboflavin) and B6 etc....

Stress in the 6 months before you developed  your initial heartburn is/was the trigger.....because STRESS burns energy and we can't make energy from our food without B-Vitamins.

See this research that explains the connection....

Entitled "The effect of life stress on symptoms of heartburn"

https://pubmed.ncbi.nlm.nih.gov/15184707/ 

This was worked out 15+ years ago and because everything is a genetic disease today doctor's don't consider the role stress plays in our health today!

I wrote an (two actually) open letter about this issue to other GI sufferers still suffering....

I am sorry If I have cited before (I am not up (right now) on what I have quoted already)) and I am afraid If go back a page I might loose what I have already typed....

The 2nd Open Letter did much better than the 1st Open Letter because the 1st one educated others so the 2nd one allowed others to question and believe that like you your Low Stomach Acid issues where being diagnosed as HIGH stomach acid instead.....locking in your GI Problems and NCGS from really Low Stomach Acid....

I am not alone in this....this phenomena (Low/NO Stomach) has been studied in Celiac's and DH patients.

I consider this the "Smoking Gun" Research on the topic.

Entitled "Gastric morphology and function in dermatitis herpetiformis and in coeliac disease"

https://pubmed.ncbi.nlm.nih.gov/3992169/

At 35+ years old.....today's doctor's don't know today that Celiac disease and other GI problems like UC and Chron's and IBS is happening because we first become low in Stomach Acid (FIRST).....

I have done the research.....it is clear that Niacin and Tryptophan helps GI problems!

See this research about how Niacin helps UC etc...

Entitled "Niacin ameliorates (IE Helps) ulcerative colitis (aka UC) via prostaglandin D 2 ‐mediated D prostanoid receptor 1 activation"

See this one on IBS and Trytophan 

Entitled "Tryptophan: ‘essential’ for the pathogenesis of irritable bowel syndrome?"

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

The same role for Tryptophan ( a precursor to Niacin in the body) treats Celiac disease in the same way....

See this research entitled "Tryptophan's role in celiac pathway in mice points to treatment strategies"

https://www.eurekalert.org/pub_releases/2020-10/aaft-tri101920.php

CeliaCupCake you now know enough to understand this is from being/having Low/NO Stomach Acid to begin with.....and raising your Stomach Acid will help protect you from the Dysbiosis (Overgrowth of Bad Bacteria) like H. Pylori and SIBO etc....

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

Good luck on your continued journey!

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

If you have any particular questions you still have.....you could always PM me.

I am always glad to help those who want my help!

Posterboy by the Grace of God,

 

Posterboy, 

Many apologies for my delay in replying. I am just so pushed for time.

Thanks so much for all that information. As I said, I have already been taking high dose B Complex for many years.

I also purchased, as you suggested, Betaine HCI (this also has pepsin) but haven’t had any yet as there is a warning saying not to take if peptic ulcers are present. I have ulcerated oesophagus as well as a hiatus hernia.