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

[CeliaCupCake]

I was biopsy diagnosed with coeliac over ten years ago and have been 100% gluten-free ever since. I was Grade 3 on the Marsh scale (that's high) and 4 months on gluten-free diet, my villi had returned to normal. 

However, despite the villi improvement, my symptoms (diarrhoea, gas, bloating, frequent toilet visits of up to 12 times per day) persists - in fact are worse than ever. This is despite taking care with FODMAP and avoiding high fibre. 

One thing that helped enormously was intermittent fasting (fasting 16-17 hours daily), but I  don't want to live like this. I hate being hungry!

Over the years I've had every test under the sun except for MRI scans. I therefore paid privately for a small bowel MRI scan  and a gynaecological pelvic one. 

The bowel scan found: 1) Cystic structure around duodenum and head of pancreas; 2) small simple cysts on liver; 3) small duodenal diverticulum (diverticulitis). 
The pelvis scan found 1) diffuse adenomyosis and 2)small fibroid near the fundus. 

I don't think any of these were considered serious enough to cause my GP to refer me to a GI consultant. The only reason she did was because I asked. 

Anyone experienced similar?  

[knitty kitty]

@CeliaCupCake,

Have you been checked for vitamin and mineral deficiencies?

Having diarrhea for an extended period of time means you are not absorbing nutrients and vitamins well.  The eight B vitamins are water soluble and lost quickly in diarrhea, constipation and vomiting.    Deficiencies in thiamine, niacin, or B12 can cause continuing digestive problems.

Thiamine deficiency in particular can cause the adenomyosis and endometriosis.  

Please talk to your doctor about checking for vitamin and mineral deficiencies as part of proper follow up care for Celiacs.  Supplementing with vitamins and minerals is warranted with malabsorption problems caused by Celiac.  

[CeliaCupCake]

Thank you, Knitty Kitty. Yes, I get my bloods checked every year and they've always been fine, though that's probably because I take vitamin and mineral supplements (including B complex), as well as probiotics. 

 

[knitty kitty]

You should be off supplements for six weeks before blood tests, otherwise you're just measuring the supplements you've taken.

 Probiotics can encourage bacteria to grow in the small intestine resulting in SIBO which can explain your ongoing symptoms.

Have you tried the Autoimmune Paleo diet? 

 

[CeliaCupCake]

I agree with you about being off supplements before blood tests, but when I suggested this to the GI coeliac specialist, he said not to bother coming off them. I did think that was a bit stupid, but did as I was told.   

I had no idea that probiotics can encourage bacteria to grow in the small intestine resulting in SIBO. I always understood them to be vital for unhealthy guts. I will certainly research that. 

Although I've tried the paleo diet, which helped as much as the intermittent fasting, I couldn't bear to stick with it. I've never tried  the Autoimmune Paleo diet though, and shall look into it. Thanks so much. 

[CeliaCupCake]

Knitty kitty, 

Considering the lack of response here, apart from your kind replies, I'm wondering if you know of another thread that relates to my topic question, please? I did do a search without much success. Thanks again. 

[Posterboy]

Celiac Cup Cake,

Here are some articles that might help answer your questions.

https://www.celiac.com/celiac-disease/a-gluten-free-diet-may-not-stop-gut-inflammation-for-all-celiac-disease-patients-r5472/page/5/?tab=comments 

 

And this article entitled "Histologic follow-up of people with celiac disease on a gluten-free diet: slow and incomplete recovery"

https://pubmed.ncbi.nlm.nih.gov/12219789/

I would look into Low/NO Stomach Acid, SIBO and eliminating Dairy if you haven't already.

I would also recommend this blog post I wrote about my journey back to health....Maybe it will help you, Lord willing.

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

Posterboy,

[Kate333]

If you haven't had an updated TTG-IGA test in awhile, get one to assess your current G antibody levels.  You could be getting G exposed and not even know it.

I'm pretty new to this diagnosis and eating gluten-free, so I'm still super finicky about buying, cooking eating only fresh food, avoiding ALL processed and packaged foods and eating out (restaurants, other homes).  That said, I can imagine how people diagnosed so long ago might easily be tempted to let their guard down a bit on maintaining 100% gluten-free diet 100% of the time, esp. after being told their gut was completely healed in 4 mos. after the initial diagnosis/beginning gluten-free diet protocol.

I urge you to follow-up with the GI consult.  GI needs to scope you to directly to get a good, closeup view of the interior of your gut and take tissue biopsies if needed.  You can't do that with an MRI.  Also, a GI doc will be able to provide better advice than a GP when it comes to possible SIBO or IBS, which might be issues.  Lastly, consider the effects of stress on your digestion.  For me, I notice that stress always affects my gut function!  A low-dose antidepressant and tips on relaxation might be helpful.  

Good luck on your healing journey!    

[CeliaCupCake]

Posterboy, 
Many thanks for your very interesting links. 

"I got lost in the forest of data….for years…going around in circles…or so it seemed at the time…"
I can totally relate to that!

"I would look into Low/NO Stomach Acid, SIBO and eliminating Dairy if you haven't already."

Thanks. Dairy doesn’t seem to bother me at all, and I have had a lactose hydrogen breath test which was negative. Likewise, I have had the glucose hydrogen breath test which showed no evidence of SIBO.
I will definitely look into Low/NO Stomach Acid though because I now see that one of the causes is the overuse of acid-suppressing medications which I happen to take for my hiatus hernia.
Thanks again!  

[CeliaCupCake]

Kate333,

Many thanks for your helpful suggestions.

Because I have always been severely symptomatic despite being 100% gluten-free, I have never waned from a gluten-free diet. However, maybe an updated TTG-IGA test would be interesting.

I am definitely going to see the GI consultant regarding my MRI scans. You are absolutely correct that the gastroscopy and colonoscopy would be beneficial. I already had those at least once, including tissue biopsies. I pushed for the MRI scans because the scopes showed nothing of significance.

I agree about the stress on digestion too and do take care to avoid it.

Thanks again.  

[knitty kitty]

Thought these might be relevant....

"Factors associated with villus atrophy in symptomatic coeliac disease patients on a gluten-free diet"

https://pubmed.ncbi.nlm.nih.gov/28220520/

 

And. ...

And....

"Combined use of SSRIs and NSAIDs increases the risk of gastrointestinal adverse effects"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1884264/

And....

"NSAIDs, PPIs, SSRIs increase risk for microscopic colitis"

https://www.healio.com/news/gastroenterology/20150220/nsaids-ppis-ssris-increase-risk-for-microscopic-colitis

 

And....

"Relationship between use of selective serotonin reuptake inhibitors and irritable bowel syndrome: A population-based cohort study"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5442087/#!po=28.0488

And...

"Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

Hope this helps

[CeliaCupCake]

11 minutes ago, knitty kitty said:

Thought these might be relevant....

 

Gosh, that's quite a lot. Thanks so much. Can't wait to read them at the first opportunity, and will let you know. 

[CeliaCupCake]

15 hours ago, knitty kitty said:

Thought these might be relevant....

"Factors associated with villus atrophy in symptomatic coeliac disease patients on a gluten-free diet"

https://pubmed.ncbi.nlm.nih.gov/28220520/

 

And. ...

And....

"Combined use of SSRIs and NSAIDs increases the risk of gastrointestinal adverse effects"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1884264/

And....

"NSAIDs, PPIs, SSRIs increase risk for microscopic colitis"

https://www.healio.com/news/gastroenterology/20150220/nsaids-ppis-ssris-increase-risk-for-microscopic-colitis

 

And....

"Relationship between use of selective serotonin reuptake inhibitors and irritable bowel syndrome: A population-based cohort study"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5442087/#!po=28.0488

And...

"Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

Hope this helps

Your links are helpful and helping me realise that I need to think twice about my PPI drug. Here's another article (there are so many pointing out the dangers to gut health) https://www.reuters.com/article/us-health-intestines-stomach-drugs-idUSKBN0U12HM20151218 .

In fact, my hiatus hernia was only spotted in the second gastroscopy after being on omeprazole (PPI drug) for a year. There was no sign of it before taking the omeprazole. I wonder if the PPI caused it? 

[Kate333]

On 4/19/2021 at 3:15 AM, CeliaCupCake said:

Your links are helpful and helping me realise that I need to think twice about my PPI drug. Here's another article (there are so many pointing out the dangers to gut health) https://www.reuters.com/article/us-health-intestines-stomach-drugs-idUSKBN0U12HM20151218 .

In fact, my hiatus hernia was only spotted in the second gastroscopy after being on omeprazole (PPI drug) for a year. There was no sign of it before taking the omeprazole. I wonder if the PPI caused it? 

That's a good Q for a GI doc. 

I've never heard of PPIs or stomach acid levels actually "causing" hiatal hernias.  I think it's more of a mechanical/structural problem where part of the stomach is literally pushed up inside the lower esophagus where it doesn't normally belong, usually due to weakened lower esophagus sphincter (opening between the stomach and esophagus).   

I've been told that obesity (excessive waist/belly weight), chronic constipation/straining, and/or advanced age are contributing factors to hiatal hernia development.  I also have and wish I could get the Fundoplication surgery to repair it (return the stomach to it's rightful place in the body, below the esophagus).  But I couldn't tolerate the pre-surgery manometry test), so I've just had to live with it.  I think it has to be really big before a surgeon will touch it.     

 

[CeliaCupCake]

16 hours ago, Kate333 said:

That's a good Q for a GI doc. 

I've never heard of PPIs or stomach acid levels actually "causing" hiatal hernias.  I think it's more of a mechanical/structural problem where part of the stomach is literally pushed up inside the lower esophagus where it doesn't normally belong, usually due to weakened lower esophagus sphincter (opening between the stomach and esophagus).   

I've been told that obesity (excessive waist/belly weight), chronic constipation/straining, and/or advanced age are contributing factors to hiatal hernia development.  I also have and wish I could get the Fundoplication surgery to repair it (return the stomach to it's rightful place in the body, below the esophagus).  But I couldn't tolerate the pre-surgery manometry test), so I've just had to live with it.  I think it has to be really big before a surgeon will touch it.     

 

Yes, I will definitely ask him that question.

So you have a hiatus hernia as well as celiac too? 

I’m not overweight and don’t suffer from constipation so I guess mine is down to age.

I can understand you not tolerating the pre-surgery manometry test. I had a look on youtube and it doesn’t look pleasant!

[knitty kitty]

Thiamine insufficiency affects the Vagus nerve.  The Vagus nerve controls your throat and digestive tract.  

Thiamine is needed for muscle contractions and nerve transmission.

Insufficient thiamine can affect the sphincter muscles not contracting properly resulting in acid reflux and hiatal hernia.

PPI's can affect thiamine absorption in the small intestine.  Damaged intestines can have difficulty absorbing thiamine and other nutrients.

[CeliaCupCake]

On 4/22/2021 at 5:36 AM, knitty kitty said:

Thiamine insufficiency affects the Vagus nerve.  The Vagus nerve controls your throat and digestive tract.  

Thiamine is needed for muscle contractions and nerve transmission.

Insufficient thiamine can affect the sphincter muscles not contracting properly resulting in acid reflux and hiatal hernia.

PPI's can affect thiamine absorption in the small intestine.  Damaged intestines can have difficulty absorbing thiamine and other nutrients.

I'm sure you're right, Knitty Kitty, but I'm probably okay for thiamine as I have taken high dose B Complex for many years. 

 

[CeliaCupCake]

On 4/18/2021 at 8:02 PM, knitty kitty said:

Thought these might be relevant....

"Factors associated with villus atrophy in symptomatic coeliac disease patients on a gluten-free diet"

https://pubmed.ncbi.nlm.nih.gov/28220520/

 

And. ...

And....

"Combined use of SSRIs and NSAIDs increases the risk of gastrointestinal adverse effects"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1884264/

And....

"NSAIDs, PPIs, SSRIs increase risk for microscopic colitis"

https://www.healio.com/news/gastroenterology/20150220/nsaids-ppis-ssris-increase-risk-for-microscopic-colitis

 

And....

"Relationship between use of selective serotonin reuptake inhibitors and irritable bowel syndrome: A population-based cohort study"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5442087/#!po=28.0488

And...

"Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

Hope this helps

Knitty KItty, 
I'd thank to thank you especially for the PPI warning. Since reducing the dose to the barest minimum over the past 5-7 days, I have been considerably better - the first time in over a year I've been well for this long. Admittedly, I've had some days over the years where I'm not so bad, but not for this long whilst eating normally (not intermittent fasting or on the Paleo). Another week or so feeling this well and I'll be sure it's down to coming off the PPI. So thanks again!  

[Posterboy]

21 minutes ago, CeliaCupCake said:

I'm sure you're right, Knitty Kitty, but I'm probably okay for thiamine as I have taken high dose B Complex for many years. 

 

 

7 minutes ago, CeliaCupCake said:

Knitty KItty, 
I'd thank to thank you especially for the PPI warning. Since reducing the dose to the barest minimum over the past 5-7 days, I have been considerably better - the first time in over a year I've been well for this long. Admittedly, I've had some days over the years where I'm not so bad, but not for this long whilst eating normally (not intermittent fasting or on the Paleo). Another week or so feeling this well and I'll be sure it's down to coming off the PPI. So thanks again!  

CeliaCupCake,

Taking PPIs will make you low in Magnesium...

This will lock up the Thiamine you have been taking....making it unavailable to the body.

See this research about it

Entitled "Aggravation of thiamine deficiency by magnesium depletion. A case report"

https://pubmed.ncbi.nlm.nih.gov/4050546/

So the PPIs can cause you to be low in Thiamine even though you have been taking Supplemental Thiamine via a B-complex....

Also the Thiamine content of B-Complex's have very low bioaviable amounts....

Try the Fat Soluble forms....Like Benfotiamine, Allithiamine, or Lipothiamine a good Magnesium form lie Magnesium Citrate or Magnesium Glycinate with meals and I think it will help you.

This thread will explain in more detail about why the form of Thiamine is important without me having to retype everything again.

Here is another research article that might  help you understand why Magnesium is import for Thiamine absorption...

Entitled "Thiamine refractory Wernickes encephalopathy reversed with magnesium therapy"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5093844/

We know PPIs will make one low in Magnesium in 6 months because their is a FDA warning on the use of PPIs warning about low Magnesium levels after 6 months of PPI use.

See this research about this connection here.....a better option would be H2 Blockers.

Entitled "Hypomagnesemia and proton-pump inhibitors (aka PPIs)...

https://pubmed.ncbi.nlm.nih.gov/23808631/

Here is the FDA Warning on Low Magnesium levels aka HypoMagnesemia...

If you would like to read it for yourself in more detail.

https://www.fda.gov/drugs/drug-safety-and-availability/fda-drug-safety-communication-low-magnesium-levels-can-be-associated-long-term-use-proton-pump

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

Posterboy,

[CeliaCupCake]

12 hours ago, Posterboy said:

 

CeliaCupCake,

Taking PPIs will make you low in Magnesium...

This will lock up the Thiamine you have been taking....making it unavailable to the body.

See this research about it

Entitled "Aggravation of thiamine deficiency by magnesium depletion. A case report"

https://pubmed.ncbi.nlm.nih.gov/4050546/

So the PPIs can cause you to be low in Thiamine even though you have been taking Supplemental Thiamine via a B-complex....

Also the Thiamine content of B-Complex's have very low bioaviable amounts....

Try the Fat Soluble forms....Like Benfotiamine, Allithiamine, or Lipothiamine a good Magnesium form lie Magnesium Citrate or Magnesium Glycinate with meals and I think it will help you.

This thread will explain in more detail about why the form of Thiamine is important without me having to retype everything again.

Here is another research article that might  help you understand why Magnesium is import for Thiamine absorption...

Entitled "Thiamine refractory Wernickes encephalopathy reversed with magnesium therapy"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5093844/

We know PPIs will make one low in Magnesium in 6 months because their is a FDA warning on the use of PPIs warning about low Magnesium levels after 6 months of PPI use.

See this research about this connection here.....a better option would be H2 Blockers.

Entitled "Hypomagnesemia and proton-pump inhibitors (aka PPIs)...

https://pubmed.ncbi.nlm.nih.gov/23808631/

Here is the FDA Warning on Low Magnesium levels aka HypoMagnesemia...

If you would like to read it for yourself in more detail.

https://www.fda.gov/drugs/drug-safety-and-availability/fda-drug-safety-communication-low-magnesium-levels-can-be-associated-long-term-use-proton-pump

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

Posterboy,

Gosh, 
I'm so glad I've decided to stop taking PPI. Thanks so much, Posterboy. They are very helpful links. 

[CeliaCupCake]

Unfortunately, after several weeks off PPI and using antacids instead, all my symptoms have returned, but now I also have the added GERD symptoms. 

Does anyone know if antacids have similar side effects as PPI? Not that the antacids are very effective for me anyway. 

I've googled to find there is also H2 Receptor Blockers. Would they be as damaging as PPIs. 

Advice would be much appreciated. Thanks. :) 

[Posterboy]

8 hours ago, CeliaCupCake said:

Unfortunately, after several weeks off PPI and using antacids instead, all my symptoms have returned, but now I also have the added GERD symptoms. 

Does anyone know if antacids have similar side effects as PPI? Not that the antacids are very effective for me anyway. 

I've googled to find there is also H2 Receptor Blockers. Would they be as damaging as PPIs. 

Advice would be much appreciated. Thanks.

Celiacupcake,

I will try and be short (as possible).....

No Antacids are usually consider safe longer term.....but they do lower stomach acid....the calcium negates the acid your are producing now again....try drinking milk....if you are  not lactose intolerant.....milk can help put out the fire (from the stomach acid) you are now producing again...

Also go Low CARB can also help....with your rebound symptom's.....until your natural stomach acid takes over....or you begin the BetaineHCL (stomach acid) replacement therapy.....see below.

I have taken BetaineHCL in the past.....but now longer need it. PTL!  But it was an important intermediary step.....

There is a recall on some H2 medicines.....so google to be sure which is safe to take right now ...

But what you should run out and get is powdered stomach aka BetaineHCL.

Always take it with couple glasses of water.....and a meal!

Usually Starting around 4 pills BetaineHCL to start with is helpful for most....

Longer term you want to start taking a B-Complex with this.....so your body can start to produce its own stomach acid again naturally...

Here is a couple of Posterboy blog post that might help you.

quoting the Posterboy from the blog on NCGS and Low Stomach Acid in case you don't get to read it right away...

"The Canadian researcher Prousky wrote about this connection 15+ years ago but still most doctors’ don’t understand this connection between about

how “Niacin treats digestive Problems”

Here is the full link so you can research it more yourself. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

And you might not after a first reading.

I didn’t believe it myself for over a year . . . but every time I thought about it – it (Low Stomach Acid) made/makes the most sense to me."

In the meantime try the home "Baking Soda Test" for low stomach acid....

I think you will be surprised by the outcome...

See this online article by Dr. Jockers

https://drjockers.com/5-ways-test-stomach-acid-levels/

That explains in detail how to test for Low Stomach acid at home.....

The details of the Baking Soda test start toward the bottom......see the graphic showing the 1, 2, 3 steps.

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

Posterboy,

[CeliaCupCake]

On 5/16/2021 at 11:43 PM, Posterboy said:

Celiacupcake,

I will try and be short (as possible).....

No Antacids are usually consider safe longer term.....but they do lower stomach acid....the calcium negates the acid your are producing now again....try drinking milk....if you are  not lactose intolerant.....milk can help put out the fire (from the stomach acid) you are now producing again...

Also go Low CARB can also help....with your rebound symptom's.....until your natural stomach acid takes over....or you begin the BetaineHCL (stomach acid) replacement therapy.....see below.

I have taken BetaineHCL in the past.....but now longer need it. PTL!  But it was an important intermediary step.....

There is a recall on some H2 medicines.....so google to be sure which is safe to take right now ...

But what you should run out and get is powdered stomach aka BetaineHCL.

Always take it with couple glasses of water.....and a meal!

Usually Starting around 4 pills BetaineHCL to start with is helpful for most....

Longer term you want to start taking a B-Complex with this.....so your body can start to produce its own stomach acid again naturally...

Here is a couple of Posterboy blog post that might help you.

quoting the Posterboy from the blog on NCGS and Low Stomach Acid in case you don't get to read it right away...

"The Canadian researcher Prousky wrote about this connection 15+ years ago but still most doctors’ don’t understand this connection between about

how “Niacin treats digestive Problems”

Here is the full link so you can research it more yourself. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

And you might not after a first reading.

I didn’t believe it myself for over a year . . . but every time I thought about it – it (Low Stomach Acid) made/makes the most sense to me."

In the meantime try the home "Baking Soda Test" for low stomach acid....

I think you will be surprised by the outcome...

See this online article by Dr. Jockers

https://drjockers.com/5-ways-test-stomach-acid-levels/

That explains in detail how to test for Low Stomach acid at home.....

The details of the Baking Soda test start toward the bottom......see the graphic showing the 1, 2, 3 steps.

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

Posterboy,

Posterboy,

Thanks very much for your time and effort which is most helpful. I will certainly give some of your suggestions as a try.

I am confused though as to why I might need BetaineHCL stomach acid replacement therapy when my problem is acid reflux (i.e. too much acid)?  I have a hiatus hernia and ulcerated oesophagus that causes the acid reflux. Doesn’t that mean I have too much acid already?

I already take high dose B-Complex which I’ve taken for years.

[Posterboy]

3 hours ago, CeliaCupCake said:

I am confused though as to why I might need BetaineHCL stomach acid replacement therapy when my problem is acid reflux (i.e. too much acid)?  I have a hiatus hernia and ulcerated oesophagus that causes the acid reflux. Doesn’t that mean I have too much acid already?

CeliaCupCake,

Did you have  a chance to read the thread I linked on Low Stomach Acid happening in Celiac's.

I will quote from it....IT basically an issue of Timeline?  When your heartburn is happening tells you if it really is too low being misdiagnosed or really to high to start with.....the baking soda test should confirm this suspicion.

Now back to (really) LOW stomach acid being diagnosed as HIGH stomach acid these days.

How can we know if it truly high or low? You’ve heard the phrase timing is everything well it is here too!

Timeline is important in any diagnosis.

quoting the Posterboy blog

"IF your stomach acid was HIGH as you often hear (everywhere) you hear take a Proton Pump Inhibitor aka acid reducer’s for heartburn/GERD (medical name for heartburn) then eating food (carbs, greasy things) wouldn’t bother you.

The acid would cut it up but if it is already low/weak then even a little acid can burn your esophagus which is not coated like the stomach to protect you from high acid.

BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight your in and things (carbs/fats) become to ferment, rancidify and cause heart burn.

Leading in time to Non-Celiac disease first and with enough injury (and time) to Marsh lesions qualifying you for diagnosis as a Celiac candidate / patient. See above link between/about PPI’s in the year preceding a Celiac diagnosis.

If you (can) be that patient and weight the xx number of years for all this damage to occur, there is a better way it is called digestion!

A virtuous cycle can replace the vicious cycle you are now in – it is caused digestion. "

If you have been taking a B-Complex for years then stop the B-Complex (go on a Sabbatical of say a month) and see if your digestion doesn't improve....

But if you have been taking PPIs all this time....I think you will notice your GERD get's worse before it get's better....from acid rebound.

If someone has been taken PPIs for all these years too.....then you DON"T have the HIGH stomach acid you think you do!

PPIs block about 95 to 99% of Stomach Acid contributing to many of your GI problems....

And in fact might of have triggered your NCGS and/or Celiac diagnosis...

See this research about it

Entitled "Use of Proton Pump Inhibitors (aka PPIs) and Subsequent Risk of Celiac Disease"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3947159/

It has been now over 7 years since this original research and still we don't realize understand these things happen when we get low in Stomach Acid....

Even worse this was studied 35+ years ago and promptly forgot or not fully understood and followed back up on.....

Low/NO Stomach is prominent in Celiac's.

See this research about it

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

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

This was not in NCGS patients but in confirmed diagnosed Celiac's....

qouting

"Antrum-sparing chronic atrophic gastritis was present in 92% of the achlorhydric patients, and hypergastrinaemia and serum parietal cell antibodies were found in most of them"

90+ Percent of Celiac's had NO Stomach Acid production at all!

And by taking PPI's you may have locked in the Vitamin/Mineral muggers....stealing your nutrients from you right under you nose.....so to speak.

Only 6 months of PPIs use will cause critically low Magnesium levels!

And why (if the Baking Soda test) confirms that you are truly low in Stomach Acid and it is not HIGH Stomach Acid is commonly thought.....then taking BetaineHCL will help you transition of the PPIs.

You don't have to believe me.....be it would be nice if you did though...

Chris Kresser has a nice 3 part article on this topic. If you want to do some more independent research about it on your own...

https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/

I have give you enough information for now....this will/should allow you to find yourself back out of the forest, Lord willing!

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

Good luck on your continued journey!

Posterboy,

[CeliaCupCake]

9 hours ago, Posterboy said:

CeliaCupCake,

Did you have  a chance to read the thread I linked on Low Stomach Acid happening in Celiac's.

I will quote from it....IT basically an issue of Timeline?  When your heartburn is happening tells you if it really is too low being misdiagnosed or really to high to start with.....the baking soda test should confirm this suspicion.

Now back to (really) LOW stomach acid being diagnosed as HIGH stomach acid these days.

How can we know if it truly high or low? You’ve heard the phrase timing is everything well it is here too!

Timeline is important in any diagnosis.

quoting the Posterboy blog

"IF your stomach acid was HIGH as you often hear (everywhere) you hear take a Proton Pump Inhibitor aka acid reducer’s for heartburn/GERD (medical name for heartburn) then eating food (carbs, greasy things) wouldn’t bother you.

The acid would cut it up but if it is already low/weak then even a little acid can burn your esophagus which is not coated like the stomach to protect you from high acid.

BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight your in and things (carbs/fats) become to ferment, rancidify and cause heart burn.

Leading in time to Non-Celiac disease first and with enough injury (and time) to Marsh lesions qualifying you for diagnosis as a Celiac candidate / patient. See above link between/about PPI’s in the year preceding a Celiac diagnosis.

If you (can) be that patient and weight the xx number of years for all this damage to occur, there is a better way it is called digestion!

A virtuous cycle can replace the vicious cycle you are now in – it is caused digestion. "

If you have been taking a B-Complex for years then stop the B-Complex (go on a Sabbatical of say a month) and see if your digestion doesn't improve....

But if you have been taking PPIs all this time....I think you will notice your GERD get's worse before it get's better....from acid rebound.

If someone has been taken PPIs for all these years too.....then you DON"T have the HIGH stomach acid you think you do!

PPIs block about 95 to 99% of Stomach Acid contributing to many of your GI problems....

And in fact might of have triggered your NCGS and/or Celiac diagnosis...

See this research about it

Entitled "Use of Proton Pump Inhibitors (aka PPIs) and Subsequent Risk of Celiac Disease"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3947159/

It has been now over 7 years since this original research and still we don't realize understand these things happen when we get low in Stomach Acid....

Even worse this was studied 35+ years ago and promptly forgot or not fully understood and followed back up on.....

Low/NO Stomach is prominent in Celiac's.

See this research about it

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

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

This was not in NCGS patients but in confirmed diagnosed Celiac's....

qouting

"Antrum-sparing chronic atrophic gastritis was present in 92% of the achlorhydric patients, and hypergastrinaemia and serum parietal cell antibodies were found in most of them"

90+ Percent of Celiac's had NO Stomach Acid production at all!

And by taking PPI's you may have locked in the Vitamin/Mineral muggers....stealing your nutrients from you right under you nose.....so to speak.

Only 6 months of PPIs use will cause critically low Magnesium levels!

And why (if the Baking Soda test) confirms that you are truly low in Stomach Acid and it is not HIGH Stomach Acid is commonly thought.....then taking BetaineHCL will help you transition of the PPIs.

You don't have to believe me.....be it would be nice if you did though...

Chris Kresser has a nice 3 part article on this topic. If you want to do some more independent research about it on your own...

https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/

I have give you enough information for now....this will/should allow you to find yourself back out of the forest, Lord willing!

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

Good luck on your continued journey!

Posterboy,

Posterboy, 

I really appreciate your help and have at the least for now (as I'm very busy and trying to find the time to research all you've given me)  done the baking soda test and did not burp at all (but then I rarely ever do). I then looked up symptoms  of low stomach acid https://www.lispine.com/blog/10-telling-signs-you-could-have-low-stomach-acid/ to see that I have 8 of the 10 symptoms, so yes, I am beginning to believe that what is perceived as high stomach acid, actually turns out to be the opposite. 

I promise to study all you have sent me at the first opportunity, but at least I did the baking soda test. 

Thanks again. 

PS I assume you have coeliac, but do you have stomach acid issues as well?