There's hope for you yet!

[Posterboy]

Chris the Celiac,

An Endoscopy will show inflammation but it does not measure stomach pH usually unless you had a Pepsinogen test too with your Endoscopy.

Here is a study about it,

https://pubmed.ncbi.nlm.nih.gov/29707078/

The baking soda test is nice home test to at least confirm the suspicion that you don't have enough stomach acid.....not too much as is commonly believed...

See this online article that explain the three test (two that can be don at home) to help guide your decision process....

https://healthygut.com/articles/3-tests-for-low-stomach-acid/

Bloating/Nausea is common when you have low stomach acid....

CARBS ferment causing bloating....and when it is intense....even Nausea...

FATS will cause delayed stomach emptying which can make the bloating and nausea worse...

Try the home test of Baking Soda and you might be surprised with your test results...

When I began burping for myself.....my nausea and bloating got better....

Liquid Mag Citrate will definitely lead to electrolyte loss due to it's diarrhea effect in higher doses...

Taking it as Pill with meals....usually moderates it diarrhea affects....

No more than 200mg in the beginning with meals often is enough to get people moving...

You can always take a stool softener like Colace or Pericolace....I did it for years until I began taking Magnesium Citrate (dose to tolerance) as Ennis_Tx likes to say...when using the powdered form of Natural Calm....

And started taking BetaineHCL to help with Nausea and Bloating...

Once I treated my Low Stomach Acid being misdiagnosed as High stomach acid...my Constipation got better...

If the pH of your stomach acid was being tested you would of remembered it....you would of wore a tube (catheter up your nose)....to measure your Stomach acid pH though out the day...

See this Mayo Clinic article about this test....

https://www.mayoclinic.org/diseases-conditions/gerd/diagnosis-treatment/drc-20361959

quoting from the article...

"Ambulatory acid (pH) probe test. A monitor is placed in your esophagus to identify when, and for how long, stomach acid regurgitates there. The monitor connects to a small computer that you wear around your waist or with a strap over your shoulder. The monitor might be a thin, flexible tube (catheter) that's threaded through your nose into your esophagus, or a clip that's placed in your esophagus during an endoscopy and that gets passed into your stool after about two days."

The baking Soda Test or BetaineHCL test is much easier to do....and far less invasive IMO.

There is hope for you yet!

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

Posterboy,

[moog8]

hi Chris,

 

Just wanted to say, I used to feel like you do now too, I would actually feel like gluten would make me feel better but it would only be temporary until i felt sick and awful again, so i would the  eat more. This, i've been told since, has to do with our adrenal glands giving us a bit of adrenalin when we have eaten something poisonous to us, which can make us actually feel good for a time after eating the gluten. I am looking for my notes on this and will post a more detailed explanation asap!. It sounds to me (though I might be wrong) like you haven't stopped eating gluten for a long enough time to really see the effects? You need to give it up for at least a month to see changes, nothing is immediate especially if you are feeling as bad as you are there may be a fair bit of damage going on in your gut. I used to feel like just eating anything caused multiple reactions, it was really horrible and frustrating. I hope you start to find some answers and relief soon!!

[moog8]

17 hours ago, Chris the Celiac said:

Thank you! The only hard part with me is, I dont have symptoms when glutened, only food intolerances get worse I think😂😂

oh also, try drinking bone broth, you can buy it a brand called Kettle and Fire, or better still- make some, there are loads of recipes online to help you. Its so soothing for your gut and is nutrient dense and has collagen to help healing.

Also, you keep saying that you don't have symptoms when youv'e eaten gluten but your food intolerances get worse- That IS a symptom of gluten intolerance! The gluten causes so much damage to your gut and smalll intestine that you start reacting to anything and everything, another word for this is leaky gut syndrome. 

[GFinDC]

Hi Chris,

Maybe a little review is helpful.  This is my understanding of the events and may not be perfect.  But hopefully will help.

Day 1 Chris the Celiac is told by his doctor that he has celiac disease and to go gluten-free.

3 months later
Chris goes gluten-free and expects to feel instantly better.  But 3 months later he still is having symptoms and is not feeling perfect.  Being new to the gluten-free diet he has probably not done a perfect job of being 100% gluten-free but has instead let small amounts of gluten get into his diet.  Chris stays on his gluten-free diet but decides after 3 months that if he doesn't feel perfect that he must not have celiac disease.  Chris's doctor didn't explain to him that celiac disease is a life-time incurable condition and that you don't recover from it in a few days.  In fact you never get over celiac completely although symptoms can wane in time.  Chris isn't feeling great and decides his continued symptoms mean he should go off the gluten-free diet.

Back on gluten
2 weeks into gluten challenge  Chris thinks he feels a little better eating gluten than he felt being gluten-free.  He continues eating gluten and sees a different doctor about retesting for celiac disease.  After another week or so of eating gluten, Chris doesn't feel well after all and is sick.  This is normal for a celiac doing a gluten challenge and is not a reason to assume they are developing new food intolerances.

Today
Chris is continuing his gluten challenge for retesting and feels poorly because his body is making immune cells that attack his gut lining.  This is normal and expected for a person with celiac disease.

Tomorrow or when then gluten challenge is over.
Chris doctor does more testing and confirms Chris has celiac disease.  Chris is told to go gluten-free for life.

Chris goes gluten-free again.
Chris goes on the gluten-free diet and still doesn't feel great.  He experiences ups and downs and continuing GI symptoms.  Eventually after 6 months to a year or 2 Chris is pretty good at avoiding gluten and his immune system settles down and stops attacking his gut.  Also since his gut lining (villi) are healing his gut bacteria balance is starting to become more normal and healthier.  Chris's gut is absorbing nutrients (vitamins, minerals, fats, carbs) better and he feels better.  He has more energy and can sleep better.  He doesn't wake up covered in sweat any more and is not as tired all day.

The rest of Chris's life.
Chris is now a committed gluten-free dieter.  He has celiac disease and he knows it. Chris has mastered the gluten-free diet and seldom makes mistakes and gets glutened rarely.  Chris goes on living and eating a more basic diet of meats, veggies, eggs, nuts.  He avoids oats and dairy for a good while but may occasionally try them to see if he can tolerate them.  Chris avoids most processed foods and cooks most of his own meals at home.  Chris may learn he has some additional food intolerances over time through doing elimination diets. But that is fairly normal stuff for a celiac.

Chris becomes the first celiac president and remembers the little people who helped him along the way.  Hint hint!

Edited November 9, 2020 by GFinDC

[moog8]

2 minutes ago, GFinDC said:

Hi Chris,

Maybe a little review is helpful.  This is my understanding of the events and may not be perfect.  But hopefully will help.

Day 1 Chris the Celiac is told by his doctor that he has celiac disease and to go gluten-free.

3 months later
Chris goes gluten-free and expects to feel instantly better.  But 3 months later he still is having symptoms and is not feeling perfect.  Being new to the gluten-free diet he has probably not done a perfect job of being 100% gluten-free but has instead let small amounts of gluten get into his diet.  Chris stays on his gluten-free diet but decides after 3 months that if he doesn't feel perfect that he must not have celiac disease.  Chris's doctor didn't explain to him that celiac disease is a life-time incurable condition and that you don't recover from it in a few days.  In fact you never get over celiac completely although symptoms can wane in time.  Chris isn't feeling great and decides his continued symptoms mean he should go off the gluten-free diet.

Back on gluten
2 weeks into gluten challenge  Chris thinks he feels a little better eating gluten than he felt being gluten-free.  He continues eating gluten and sees a different doctor about retesting for celiac disease.  After another week or so of eating gluten, Chris doesn't feel well after all and is sick.  This is normal for a celiac doing a gluten challenge and is not a reason to assume they are developing new food intolerances.

Today
Chris is continuing his gluten challenge for retesting and feels poorly because his body is making immune cells that attack his gut lining.  This is normal and expected for a person with celiac disease.

Tomorrow or when then gluten challenge is over.
Chris doctor does more testing and confirms Chris has celiac disease.  Chris is told to go gluten-free for life.

Chris goes gluten-free again.
Chris goes on the gluten-free diet and still doesn't feel great.  He experiences ups and downs and continuing GI symptoms.  Eventually after 6 months to a year or 2 Chris is pretty good at avoiding gluten and his immune system settles down and stops attacking his gut.  Also since his gut lining (villi) are healing his gut bacteria balance is starting to become more normal and healthier.  Chris's gut is absorbing nutrients (vitamins, minerals, fats, carbs) better and he feels better.  He has more energy and can sleep better.  He doesn't wake up covered in sweat any more and is not as tired all day.

The rest of Chris's life.
Chris is now a committed gluten-free dieter.  He has celiac disease and he knows it. Chris has mastered the gluten-free diet and seldom makes mistakes and gets glutened rarely.  Chris goes on living and eating a more basic diet of meats, veggies, eggs, nuts.  He avoids oats and dairy for a good while but may occasionally try them to see he can tolerate them.  Chris avoids most processed foods and cooks most of his own meals at home.  Chris may learn he has some additional food intolerances over time through doing elimination diets. But that is fairly normal stuff for a celiac.

Chris becomes the first celiac president and remembers the little people who helped him along the way.  Hint hint!

This is excellent, spot on  

[Chris the Celiac]

Thanks for the advicr guys! I stayed gluten free for more than 3 months and still had weightloss, still couldnt eat anything because everything makes me sick. When I do eat gluten, It makes me feel normal and not gluteny. The only time I feel sick and absolutley just like death, is when I eat SIBO affending foods. I understand that it takes time, but I had absolutley no improvements on GFD. I feel anyways. I tried looking for intoledances, but Im down too potatoes and chicken and anything that is low fodmap, depending on what it is anyways. I still feel the exact same whether I eat gluten-free or not. Its just overwhelming because Ive been sick since March and nothing seems to help unless I dont eat any sugar or anything fodmap wise. My new doctor wnats to get an EGD done because my first doctor refuses to send the results too him. Also, when I eat anything fod map wise, I get the same exact symptoms that made me get an endoscopy in the first place, but not with gluten. Im just needing a lot of help at the moment😅 You guys are givint wonderful advice too! Im trying to hang in there!

[Chris the Celiac]

What I mean is, I dont feel as sick when I eat gluten, it doesnt bother me like other foods do. I stayed 100% strict gluten free. I wouldnt even let people who do eat glutenous items have them in my house, use the same utensils, etc. Everythint down to shampoo and toothepaste, is gluten free. I still have no improvement, Im going to the doctor to see what else could be happening. Even if it is 100% celiac, I dont care as long as I know what I can do to feel, not like death everyday😂

[Posterboy]

Chris the Celiac,

You might think about changing your name to "Chris the SIBO Celiac" if this works.

SIBO is common in Celiac's

Here is an article about it....

I just kind of recently rediscovered it....by accident....it is 15+ years old and while numbers (Pcts) might not be quite this high in the article.....it is definitely happening at clip close to 2/3 of Celiac's...

https://www.celiac.com/celiac-disease/bacterial-overgrowth-of-small-intestine-common-in-treated-celiac-disease-r791/

This is a small study that showed 3/4 of those who didn't "Feel Better" on a gluten free diet got better IE "Felt Better" after treating their underlying SIBO.

The problem is SIBO too is hard to eradicate completely....and keeps coming back (usually after 10 months approx. after being treated with an Antibiotic like Rifaximin etc). ....if you don't get too it's root cause.....which is commonly Low Stomach Acid.

Not surprisingly Celiac's have also been shown to be low in stomach acid too!

Here is the research on Celiac's and Low/NO Stomach acid and why I think my GI problems improved after treating my underlying Low Stomach acid issues despite eating gluten free.

Entitled "Gastric morphology and function in dermatitis herpetiformis and in C(o)eliac disease spelled Celiac in America...

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

I quote from the article....

In Celiac's and DH patients....."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."

This research is 30+ years old and doctor's don't associate Low or NO Stomach with GI problems any more....because they constantly are told you have TOO much....

It just isn't sooo!

Food depletes/reduces stomach acid levels....

I could go own...but this will get you looking in the right direction.

We know this is true because newer research shows PPIs use can increase your likely hood of being diagnosed as  Celiac....

Here is the abstract about the connection between PPIs use and subsequent Celiac disease risk... and Yes I believe SIBO too!

https://pubmed.ncbi.nlm.nih.gov/24035759/

Till you treat the underlying cause....the symptom's will keep coming back....and sometimes with a vengeance...... especially if you are having Stomach Acid hyper secretion from taking PPIs...

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

The PPI's don't work because they lock you into "Low Stomach Acid" going misdiagnosed.... IMHO.

The research bears it out clearly.....I don't know why I am the only one that sees it....

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

Posterboy,

[Chris the Celiac]

Ill look into low stomach acid too. To me, I think my underlying reason for sibo, if thats the case, was thid year has had too many stressors. Stress can cause Celiacs, I know that. With implementing the GFD I had abosultley no improvement to anything and still get the same exact symproms to a T if I eat anythint, except for gluten. Gluten has no symptoms on me at all, that Im aware of. Ive done countless hours of research and SIBO can commonly be mistaken for celiacs, histologically. Im just looking into different views and other opinions considering Im still at my weight at the time of diagnosis and has not improved anything. I know celiacs can be silent as well, thats why Im looking into further testing like my previous doctor has not done. So hopefully I can get helpful answers from the Docs and use the greag adivce you have all given me. It really means a lot! 

[DJFL77I]

My Mom had SIBO..  she was farting 24/7...  like literally constantly...... to the point where she couldn't even go out LOL...    if you don't have constant gas.. you probably don't have have SIBO

[Chris the Celiac]

4 minutes ago, DJFL77I said:

My Mom had SIBO..  she was farting 24/7...  like literally constantly...... to the point where she couldn't even go out LOL...    if you don't have constant gas.. you probably don't have have SIBO

Oh I do😂😂 Im so nastily bloated and constantly burp😂 

[Posterboy]

2 hours ago, Chris the Celiac said:

Ill look into low stomach acid too. To me, I think my underlying reason for sibo, if thats the case, was thid year has had too many stressors. Stress can cause Celiacs, I know that. With implementing the GFD I had abosultley no improvement to anything and still get the same exact symproms to a T if I eat anythint, except for gluten. Gluten has no symptoms on me at all, that Im aware of. Ive done countless hours of research and SIBO can commonly be mistaken for celiacs, histologically. Im just looking into different views and other opinions considering Im still at my weight at the time of diagnosis and has not improved anything. I know celiacs can be silent as well, thats why Im looking into further testing like my previous doctor has not done. So hopefully I can get helpful answers from the Docs and use the greag adivce you have all given me. It really means a lot! 

Chris the Celiac,

Your right on target!

Intense stress 6 months before is a trigger for Heartburn/GERD.

We all know STRESS Kills us right...well it maims us FIRST!

And that stress you mentioned has been studied to trigger heartburn....which is really your stomach acid getting too low!

It takes a lot of energy to make Stomach ACID...Fight or Flight/Flee right....both takes a lot of energy....and when this happens..... you take it in the Gut...the body robs Peter to pay Paul so to speak....and heartburn results from ALL the stress the body has been under for the last 6 months or even less!

Here this research on Stress 6 months before Heartburn...

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

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

If you start taking Benfotiamine and or AlliThiamine.....fat soluble B1 along with Magnesium Glycinate (easier on the stomach than Magnesium Citrate).....it should help your Constipation....

Thiamine is important for GI motility....

Here is the Hormones Matter article on how Thiamine is important for Gut Motility...

https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/

I also wrote a Posterboy blog post of why it is helpful to take Thiamine for Gut Issues...

Here it is....maybe it will help you.

A common symptom of a Thiamine and Magnesium deficiency is Fatigue and Constipation....

Magnesium Glycinate also helps muscles cramps...

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

Posterboy,

[Chris the Celiac]

Ill need to try it! I can eat potatos just fine, eggs, rice, and anything thats low fodmap. If I dont, It makes me sicker than anything. Ive been eating low fodmap for a couple days now and Im just super tired now. A lot of symptoms have gone away, its just fatigue thats getting me right now😂 I have chewable magnesium that I tale everday, but it also makes me sick to my stomach😂 I have an EGD and Colonoscopy bext thursday so hopefuly something will be found or help lead to my problem? Also, I could have a parasite🤦‍♂️ Before all this happened, my cat jumped on me and I tried to brush her off my lap. When I did, she shot something whote and goopy from her behind🤢 I didnt realize it hit my lip for about 15 minutes. It smelt absolutely horrific. Since then, this has been going on😂