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Ennis_TX

Nightly Purge

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I used to have a issue with vomiting once or twice a week...not really vomiting to empty but just a few chunks of undigested globs of food....some times identifiable as things from breakfast or the day before formed into a hard clump.

After my last exposure it become a nightly thing same time every night somethings even from breakfast normally formed into a few globs a few that float and normally a large chunk at the end....the chunk obviously formed in my stomach as I eat a mostly blended diet right now. So about 5 weeks now of this nightly -_- It feels like gastroparesis at first 2 hours after eating dinner becoming dizzy and feeling sick then the purge and a few globs of stuff....even things from breakfast....changing diet just changes what comes up no effect in the amount or timing. I can not eat anything after or instant purge........I still have D every morning but no longer in the evening it just rebounds to this.

Unsure if there is a medical term for it but it is like a owl coughing up owl pellets of undigested food at the end of the day....its down right annoying. Going to try changing to a new digestive enzyme that is stronger....no clue what else to do. Hoping it returns to normal, I can not afford doctors right now but a nutritionist heard me out and said my antibodies could still be high from the gluten exposure causing issues with my digestive system as it is probably still under attack and hampering my digestion. They also suggested lowing my fiber intake, and stopping eating so many nuts and seeds even in meal/butter form. I have tried by lowing fat intake causes my body to canabolize my muscles...painful and annoying.

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It seems clear to me that you are having gastroparesis if you are upchucking remnants from breakfast the day before. Normally, food passes from the stomach into the duodenum/small bowel within about two hours and then makes it's way down to the colon for elimination within about 24 hr. This sounds serious and I would make every effort if I were you to identify some medical resources that will allow you explore the issue. Even for those without the means to afford good health plans there may be some state sponsored health care resources available. Please pull out all the stops and see what is available.

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You need to see a doctor. Yesterday. Contact your local Social Services if you don't have insurance and go to your local hospital's Billing Dept and see if you can get a sliding fee scale based on your income. I was able at one point when uninsured to get any blood work, X-rays and other testing done for just a few dollars. You clearly have much more than just celiac going on and it could be very serious.  You give a lot of help to folks on the board.  We wouldn't like to lose you because of something that needed conventional medical treatment.

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I agree with all the advice you have been given.  Get to a doctor.  Taking more enzymes is not the solution.  You need to find out why your stomach is not emptying properly.  Like Ravenwoodglass stated, this does not sound like celiac disease (though it could have been triggered by an autoimmune flare up from a gluten exposure).  

 

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Yeah figured as much. Diarrhea every morning, and I vomit just a few mouthfuls in the evening, globe of floating stuff, bit in between then feel better when a lump of stuff comes up...always a lump of stuff that can contain stuff mostly from the first 2 meals of the day.

I was hoping this was just a digestive issue with breaking things down and undigested foods forming a hard clump in my stomach and undigested fats floating and going rancid....like meats have always done.

I have had this happen in the past...but never had it be consistent with every night like it has been. Again I flip flopped breakfast and dinner and still only happens at night and full on rotating diet did not effect it....although I found somethings that made it worse IE onion, meats, vinegar, spices.

Will go by our local HOPE clinic and see what they have for on the sliding fee thing (Know I saw this there once)

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On 9/22/2018 at 6:16 PM, Ennis_TX said:

It feels like gastroparesis

Ennis_tx,

You have diagnosed the problem correctly I think.

But not the reason.

This inspire article deals with a lot of the questions/issues of getting off PPIs for good.

https://www.inspire.com/CAGU/journal/ppi-warning-gastroparesis-delayed-gastric-emptying-proton-pump-inhibitor/?origin=freshen

Admittly it is not easy.  It took them 3 months of horrible acid rebound before they felt better.  And full 12 months before they were off all their heartburn medicines.

Here is why this happens.

https://hsionline.com/2014/06/04/worsening-heartburn/

quoting

"Studies have shown that taking proton pump inhibitors for as little as a month — and then stopping — can cause “rebound acid hypersecretion.” That means your stomach starts making even more acid than it ever did before.

So of course, you start taking them again! And that’s just the kind of drug Big Pharma loves, the lifetime med you can never get off of."

But I think you are to the point you need to get off of them (PPIs) for good.

You are showing the signs of Amyloidosis a complication of Gastroparesis.

https://www.healthline.com/health/amyloidosis

The lose of the sensation of heat and cold in your hands is probably related to long(er) term use of PPIs.

Most of these links are in the inspire article if you have a chance to read it.

but this link explains it well entitled "The Effects of Omeprazole on Intragastric pH, Intestinal Motility, and Gastric Emptying Rate"

https://www.tandfonline.com/doi/abs/10.1080/003655299750025868

quoting their conclusion

"Conclusions: Omeprazole eliminates the temporal relationship between intragastric pH and characteristics of the migrating motor complex and induces a delay in gastric emptying of both liquid and solid. . . ."

Ennis_tx I would help if I could but this is a journey you will have to take own your own.

But the best way I know is what you are doing now with your diet going low CARB.

But I do also recommend adding adding a H2 blocker for two weeks to a month THEN follow the step down method of stepping off PPIs two weeks to a month between doses.

Continue taking the H2 blocker as you step back on the PPIs this will keep you from having a full blown over-hyper acid reaction as you step down the chain of acid reducers/PPIs till hopefully in 3 to 4 months you off the PPIs for good.

Most people can not go cold turkey because of hyper acid rebound tied to PPis

Use the H2 blockers to keep the rebound at bay. ... maybe you need a month between step downs.

the reason most people don't notice a horrible reaction to heartburn till the 2nd or 3rd days is the half life of the PPIs.

It takes that long to get it our of your system.

This article on the pharmacology of Protein Pump Inhibitors explains it well.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2855237/

the food you purge back up is called bezoars quoting webmd.

"Food in the stomach can harden into a solid collection, called a bezoar. Bezoars can cause obstructions in the stomach that keep food from passing into the small intestine."

and is a clear sign of gastroparesis.

You  have diagnosed your self correctly I believe.

Now how to get off the PPIs's that most likely is causing it . . .the easiest way is the 64K question.

I am afraid there are no easy answer's but at least I think you know which direction you must head. . . .no matter how difficult it might seem right now . . . it is possible.

And don't be afraid to use replacement stomach acid of 5 or 6 capsules of BetaineHCL (always with a meal and a couple glasses of water or unsweet tea if you prefer) to encourage gastric emptying.  It should help mitigate acid rebound and improve/keep your Bezoars from forming improving stomach emptying.

good luck on your continued journey.

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

As always “Consider what I say; and the Lord give thee understanding in all things” 2 Tim 2:7

Posterboy by the grace of God,

 

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4 minutes ago, Posterboy said:

Ennis_tx,

You have diagnosed the problem correctly I think.

But not the reason.

This inspire article deals with a lot of the questions/issues of getting off PPIs for good.

https://www.inspire.com/CAGU/journal/ppi-warning-gastroparesis-delayed-gastric-emptying-proton-pump-inhibitor/?origin=freshen

Admittly it is not easy.  It took them 3 months of horrible acid rebound before they felt better.  And full 12 months before they were off all their heartburn medicines.

Here is why this happens.

https://hsionline.com/2014/06/04/worsening-heartburn/

quoting

"Studies have shown that taking proton pump inhibitors for as little as a month — and then stopping — can cause “rebound acid hypersecretion.” That means your stomach starts making even more acid than it ever did before.

So of course, you start taking them again! And that’s just the kind of drug Big Pharma loves, the lifetime med you can never get off of."

But I think you are to the point you need to get off of them (PPIs) for good.

You are showing the signs of Amyloidosis a complication of Gastroparesis.

https://www.healthline.com/health/amyloidosis

The lose of the sensation of heat and cold in your hands is probably related to long(er) term use of PPIs.

Most of these links are in the inspire article if you have a chance to read it.

but this link explains it well entitled "The Effects of Omeprazole on Intragastric pH, Intestinal Motility, and Gastric Emptying Rate"

https://www.tandfonline.com/doi/abs/10.1080/003655299750025868

quoting their conclusion

"Conclusions: Omeprazole eliminates the temporal relationship between intragastric pH and characteristics of the migrating motor complex and induces a delay in gastric emptying of both liquid and solid. . . ."

Ennis_tx I would help if I could but this is a journey you will have to take own your own.

But the best way I know is what you are doing now with your diet going low CARB.

But I do also recommend adding adding a H2 blocker for two weeks to a month THEN follow the step down method of stepping off PPIs two weeks to a month between doses.

Continue taking the H2 blocker as you step back on the PPIs this will keep you from having a full blown over-hyper acid reaction as you step down the chain of acid reducers/PPIs till hopefully in 3 to 4 months you off the PPIs for good.

Most people can not go cold turkey because of hyper acid rebound tied to PPis

Use the H2 blockers to keep the rebound at bay. ... maybe you need a month between step downs.

the reason most people don't notice a horrible reaction to heartburn till the 2nd or 3rd days is the half life of the PPIs.

It takes that long to get it our of your system.

This article on the pharmacology of Protein Pump Inhibitors explains it well.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2855237/

the food you purge back up is called bezoars quoting webmd.

"Food in the stomach can harden into a solid collection, called a bezoar. Bezoars can cause obstructions in the stomach that keep food from passing into the small intestine."

and is a clear sign of gastroparesis.

You  have diagnosed your self correctly I believe.

Now how to get off the PPIs's that most likely is causing it . . .the easiest way is the 64K question.

I am afraid there are no easy answer's but at least I think you know which direction you must head. . . .no matter how difficult it might seem right now . . . it is possible.

And don't be afraid to use replacement stomach acid of 5 or 6 capsules of BetaineHCL (always with a meal and a couple glasses of water or unsweet tea if you prefer) to encourage gastric emptying.  It should help mitigate acid rebound and improve/keep your Bezoars from forming improving stomach emptying.

good luck on your continued journey.

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

As always “Consider what I say; and the Lord give thee understanding in all things” 2 Tim 2:7

Posterboy by the grace of God,

 

The recent gluten upset in combination could have made this worse, and slowly backing down to once daily then once every other day then skipping more down the road with the PPIs might work.

 

I do not take PPI for the standard reasons...maybe the old issues healed? I almost ODed as a kid on caffeine and broke the pumps lol, I spent a awhile with acid just pouring out of my throat. NO joke it eroded my esophagus and I had scar tissues galore there. I would spend nights with a trashcan coughing up acid and my wall next to my bed looked like a horror movie of bloody mucus and stuff that I have coughed up....I can go to my parents house and get you pictures there are still stains on the walls, and door from those issues. -_- It freaked out my doctors as I just kept on having acid coming up I was constantly burping it up, coughing it up, and hiccuping it up. So I have been taking PPI since I was like 15 twice a day.

Those HCL pills are a NOPE, I tried them before and popped a ulcer bleeding. My digestion did improve when I stopped taking them for a few months til I got glutened...so maybe a few weeks of them again could help?

Benzoar...yeah that seems about right, globs of hard to digest food matter that are not breaking down and settle in that low slump in the stomach then block/irritate it til I puke them up. I eat tons of nuts and seeds in my diet..seems like some that do not make it through the tract settle and form clumps not really huge normally...about the size of one of those puff Cheetos..but they do contain coconut, cocoa nibs, and seed meals along with some other gunk...of who knows what. If I have bit of meat they are REALLY bad and I get dizzy nauseous before they come up if I miss a day or so.

Anyway having to get some paper work together now of financial statements etc to submit to the clinic to see about the sliding fee thing, might be later this week or next week before I get in....god I miss medicaid.

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Ennis_TX,

I didn't have the research in front of me at the time and have been busy with some farm issues and some faith and family issues but I wanted to post this research now that I found it again.  I  hope it helps.

It is about how various meal types can raise our stomach acid levels at least temporarily.

While removing CARBS can alleviate bloating issues going on a high fat might be making the delayed stomach emptying (nausea etc.) worse because  high fat meals can temporarily raise you pH higher than other meal types.

Hear is  the research entitled "Regional Postprandial Differences in pH Within the Stomach and Gastroesophageal Junction"

https://link.springer.com/article/10.1007%2Fs10620-005-3048-0

quoting "We conclude that a high-volume fatty meal has the highest buffering effect on gastric pH compared to a spicy lunch or a bland breakfast."

though they don't say what a "bland breakfast" is?

nevertheless it might help you plan a little better if you do try taking some BetaineHCL again to know more is needed with more fat in your meals diet etc.

I do think taking a H2 inhibitor will help for a week or two before trying to stop the PPIs because it will act like a coffer dam and hold back 80% of the hyperacid secretion that people rebound with when trying to stop PPIs cold turkey.

Then once you have stepped back to a smaller dose 10 to 20mg every two or three weeks you can then do the same to the H2 (Rantidine akak  Zantac etc.) the same way.

You won't be able to go COLD turkey as you already know.  Stepping down with Low Carb, A H2 inhibitor to hold back the acid flood rebound and the BetHCL to help boost the acid up on high fat meals might work. . . .if too low stomach acid is really the cause of your gastroparesis symptom's.

I don't know if it will work but it is worth a try.  It will still take probably 2 or 3 months with 2 to 3 weeks steps down as you go to see if you can find a happy medium until hopefully the naturally order of strong stomach without acid rebound is reached. 

Again naturally keep in check by food instead of causing the viscous cycle your are now experiencing.

I hope this is helpful but it is not medical advice and I know you have a special case so it might not help/work for you but maybe it will help someone else if it doesn't help you.

I saw where you said you could handle a little fat and this research explains why a lot of fat could cause things to be temporarily at least worse.

As always  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,

I am going to quote the full abstract below for those who don't have time to read the full citation. Again I hope this is helpful but it is not medical advice.

Regional Postprandial Differences in pH Within the Stomach and Gastroesophageal Junction

Abstract

Our objective was to determine regional differences in intragastric pH after different types of meals. Ten normal subjects underwent 27-hr esophagogastric pH monitoring using a four-probe pH catheter. Meals were a spicy lunch, a high-fat dinner, and a typical bland breakfast. The fatty dinner had the highest postprandial buffering effect, elevating proximal and mid/distal gastric pH to 4.9 ± 0.4 and 4.0 ± 0.4, respectively, significantly (P< 0.05) higher compared to 4.2 ± 0.3 and 3.0 ± 0.4 for the spicy lunch and 3.0 ± 0.3 and 2.5 ± 0.8 for the breakfast. The buffering effect of the high-volume fatty meal to pH > 4 was also longer (150 min) compared to that of the spicy lunch (45 min) and the bland breakfast, which did not increase gastric pH to > 4 at any time. Proximal gastric acid pockets were seen between 15 and 90 min postprandially. These were located 3.4 ± 0.8 cm below the proximal LES border, extending for a length of 2.3 ± 0.8 cm, with a drop in mean pH from 4.7 ± 0.4 to 1.5 ± 0.9. Acid pockets were seen equally after the spicy lunch and fatty dinner but less frequently after the bland breakfast. We conclude that a high-volume fatty meal has the highest buffering effect on gastric pH compared to a spicy lunch or a bland breakfast. Buffering effects of meals are significantly higher in the proximal than in the mid/distal stomach. Despite the intragastric buffering effect of meals, focal areas of acidity were observed in the region of the cardia–gastroesophageal junction during the postprandial period.

Posterboy,

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Bit of a update and some solutions and issues.
Can't see a doctor for a lot longer, emergency surgery on that infection I have had for 2 years. IT is gone but took all my money, but no more fear of it killing me as it ate into my jaw.

Meals, removed Emulsifiers like gums, konjac, etc from dinner = Less floating mass as stuff does not bind to floating undigestable foods. Then removed solids and blended only from powders, butters, liquids.
Adjusted Enzymes for more of a targeted blend for breaking down fats/proteins.
Started using Veggie powders and ground dehydrated vegges, MUCH easier digestion, and no more vomiting a bunch of chunks. Now I use Dehydrated kale, moringa powder, corella tablets, etc Normally in green shots but it sometimes works in a broth, or eggs.
Dramatically cut down on cocoa nibs....benzors are VERY uncommon now...seems that made up the most of it, coconut for Sat Fats now and cocoa powder.
I found I can NOT eat Crab, Chicken, Turkey anymore in even the tiniest amounts on top of red meats or vomit comet we go...Amusingly, Collagen Powder, and bone broth powders for Beef and chicken are fine...I assume animal fat issues.


Still having the evening vomit, but only a burp up now of floating mass, I would not even call it vomiting, just more of my body skimming the oil/undested floating off the top of the soup pot.

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Well another update and potential source for my issues the past 17 weeks. My pancreas, it has been iffy the past few years, last year it started requiring me to remove all sugars/carbs or risk spiking my glucose through the roof IE 2 forks of hash browns spiked it to the 400s.
I have been taking pancreas enzymes for the past few years....so I think this helped hide the main issues of the pancreas slowly failing.
This last gluten exposure in July....it left me with daily D, it started to get more solid a week or so ago when I started quadrupling my enzymes...the vomiting slowed around this time and I started gaining weight. Well I stopped the enzymes for a day...vomiting  EVERY MEAL, diarrhea that was VERY oily....and I made the connection. I think my pancreas is dead now.
I mean everything ads up, D, vomiting, floating fat in vomit, oil in D, dry skin, zero carb tolerance with extreme glucose spikes, unable to eat meat at all, only digesting blended and mush foods with extra pancreas enzymes.
NOW how do I get this tested? I can not afford a doctor, I am thousands in debt with my family and trying to pay them off for surgery, replacing a water heater, medications etc. I am at a loss here, do I just go on the assumption it is dead and live my life with pancreas enzymes and a no carbs diet to avoid needing insulin?
Now another question is how? IT really coincide with my last ataxia attack totally knocking it out. Did it attack my pancreas directly or damage the nerve connections, or is it brain damage?

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On 11/6/2018 at 5:11 AM, Ennis_TX said:

Well another update and potential source for my issues the past 17 weeks. My pancreas, it has been iffy the past few years, last year it started requiring me to remove all sugars/carbs or risk spiking my glucose through the roof IE 2 forks of hash browns spiked it to the 400s.
I have been taking pancreas enzymes for the past few years....so I think this helped hide the main issues of the pancreas slowly failing.
This last gluten exposure in July....it left me with daily D, it started to get more solid a week or so ago when I started quadrupling my enzymes...the vomiting slowed around this time and I started gaining weight. Well I stopped the enzymes for a day...vomiting  EVERY MEAL, diarrhea that was VERY oily....and I made the connection. I think my pancreas is dead now.
I mean everything ads up, D, vomiting, floating fat in vomit, oil in D, dry skin, zero carb tolerance with extreme glucose spikes, unable to eat meat at all, only digesting blended and mush foods with extra pancreas enzymes.
NOW how do I get this tested? I can not afford a doctor, I am thousands in debt with my family and trying to pay them off for surgery, replacing a water heater, medications etc. I am at a loss here, do I just go on the assumption it is dead and live my life with pancreas enzymes and a no carbs diet to avoid needing insulin?
Now another question is how? IT really coincide with my last ataxia attack totally knocking it out. Did it attack my pancreas directly or damage the nerve connections, or is it brain damage?

You need to get to a doctor.  Go to an ER.  They can not turn you away.  You also need to find out if you can get medical insurance from the state.  I know you had issues in the past, but surely that can be overcome?  Can you find a public assistance attorney or health care advocate?  

This is probably not about celiac disease, but your Ulcerative Colitis which might need medication or surgery.  Get medical help.  You can not treat this by yourself at this stage.  

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16 minutes ago, cyclinglady said:

You need to get to a doctor.  Go to an ER.  They can not turn you away.  You also need to find out if you can get medical insurance from the state.  I know you had issues in the past, but surely that can be overcome?  Can you find a public assistance attorney or health care advocate?  

This is probably not about celiac disease, but your Ulcerative Colitis which might need medication or surgery.  Get medical help.  You can not treat this by yourself at this stage.  

I can get medicare in January for free to cover ER, no GI or normal doctors but I can get the free ER then. Lost a contract with a catering gig to another guy so I am just going to wing it til then. I should also be getting a financing and donations in spring of next year so I can get off this BS government pay and try to start my own safe business and work full time.
I do not mean to be morbid, but I accept I might die before then, and this could be something WAY worse then I am guessing. But fact is my life insurance pay out will set up my family GREAT and I can not get in debt anymore so leaving it to fate. So FIGHT on til Jan.


PS I have tried patron, and gofundme, humanity does not care about a genetically defective male in his late 20s. Darwinism.

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Ennis_Tx,

I think your acute pancreitits is a side effect of your long term use of PPIs.

Here is a study on it.

https://www.researchgate.net/publication/7397766_Acute_pancreatitis_associated_with_omeprazole

taking PPIs with acute pancretitis is not advised.

https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-017-0804-x

I understand why you take it and that your condition is not like a normal persons but you need to consider that the long term effects of your PPI use could be contributing to your symptom's.

Here is the technical reasons it could be your PPIs.

I will quote their summary/conclusion only for easy reference.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4436373/

quoting

"Lastly, the solid evidence that we provide for the H+/K+-ATPases in pancreas calls for re-evaluation of the use of PPIs as they will not only affect stomach secretion but also pancreatic secretion—contrary to what may be wished."

Ennis_Tx you know what the problem is. . .acute pancreastitis.

and if this research is to be believed your PPIs are now contributing to your acute pancretitis.

Adding Zantac to your regimen as discussed above can help you step back on your PPIs.

Give Zantac a week or two to work then you can cut your PPIs by a 1/4 step decrease in doses every two weeks.

And start at the Highest Zantac dose to begin with to give you maximum protection against acid hypersecrition as tapper back your PPIs 1/4 doses with each week to two week step down in doses of first the PPIs then finally the Zantac (if able) if not then at least you will have transitioned to a H2 inhibitor/Blocker instead. . . hopefully helping your acute pancretitis because H2 inhibitiors don't effect the pancreas in the same way as PPIs (as I understand it).

And this can be done cheaply and easily at home. . ...

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

As always “Consider what I say; and the Lord give thee understanding in all things”

2 Timothy 2: 7 

Posterboy by the grace of God,

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Hi Ennis, please go to the ER now and see what they can arrange for you. I am so sorry your health is in such a state because of how the system works.  

I hope you have good people around you. Is your crowdfunding still open ? If so maybe leave a link on this thread ? (not sure if you are allowed, if not send me the link)

You have so many solutions for your troubles and you are knowledgable and super creative, but there is a moment when you need medical help and that moment is now.

I am really sorry you are dealing with this. I am sending you good vibes!

 

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9 hours ago, Posterboy said:

Ennis_Tx,

I think your acute pancreitits is a side effect of your long term use of PPIs.

Here is a study on it.

https://www.researchgate.net/publication/7397766_Acute_pancreatitis_associated_with_omeprazole

taking PPIs with acute pancretitis is not advised.

https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-017-0804-x

I understand why you take it and that your condition is not like a normal persons but you need to consider that the long term effects of your PPI use could be contributing to your symptom's.

Here is the technical reasons it could be your PPIs.

I will quote their summary/conclusion only for easy reference.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4436373/

quoting

"Lastly, the solid evidence that we provide for the H+/K+-ATPases in pancreas calls for re-evaluation of the use of PPIs as they will not only affect stomach secretion but also pancreatic secretion—contrary to what may be wished."

Ennis_Tx you know what the problem is. . .acute pancreastitis.

and if this research is to be believed your PPIs are now contributing to your acute pancretitis.

Adding Zantac to your regimen as discussed above can help you step back on your PPIs.

Give Zantac a week or two to work then you can cut your PPIs by a 1/4 step decrease in doses every two weeks.

And start at the Highest Zantac dose to begin with to give you maximum protection against acid hypersecrition as tapper back your PPIs 1/4 doses with each week to two week step down in doses of first the PPIs then finally the Zantac (if able) if not then at least you will have transitioned to a H2 inhibitor/Blocker instead. . . hopefully helping your acute pancretitis because H2 inhibitiors don't effect the pancreas in the same way as PPIs (as I understand it).

And this can be done cheaply and easily at home. . ...

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

As always “Consider what I say; and the Lord give thee understanding in all things”

2 Timothy 2: 7 

Posterboy by the grace of God,

I do not think this is acute pancretitis as there is not pain, the pancreas just does not work seeminly. But you do have a point with the PPI and PH of the stomach hampering the enzyme functions. I will try rotating to doubling my randine and getting off the other PPI next week when I organize my pill box.

 

 

38 minutes ago, healthysquirrel said:

Hi Ennis, please go to the ER now and see what they can arrange for you. I am so sorry your health is in such a state because of how the system works.  

I hope you have good people around you. Is your crowdfunding still open ? If so maybe leave a link on this thread ? (not sure if you are allowed, if not send me the link)

You have so many solutions for your troubles and you are knowledgable and super creative, but there is a moment when you need medical help and that moment is now.

I am really sorry you are dealing with this. I am sending you good vibes!

 

We are not allowed to self promote, I did a you caring back when it was a thing a few years ago when I was having the infection issues and got nothing.
Again ER will really hurt my family with debts, I also have some other things to consider they could do that will hurt my future if I do not pay. So again first of the year I get medicare and can go then....right now just take the enzymes, and deal with the vomiting and D. Not losing any weight, I am gaining it again with the extra enzymes.

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2 minutes ago, Ennis_TX said:

I do not think this is acute pancretitis as there is not pain, the pancreas just does not work seeminly. But you do have a point with the PPI and PH of the stomach hampering the enzyme functions. I will try rotating to doubling my randine and getting off the other PPI next week when I organize my pill box.

 

 

We are not allowed to self promote, I did a you caring back when it was a thing a few years ago when I was having the infection issues and got nothing.
Again ER will really hurt my family with debts, I also have some other things to consider they could do that will hurt my future if I do not pay. So again first of the year I get medicare and can go then....right now just take the enzymes, and deal with the vomiting and D. Not losing any weight, I am gaining it again with the extra enzymes.

I am really sorry you have to wait. I am very glad you are gaining weight! I hope you have ways, like meditation or a punching bag, to deal with all this extra stress on your system. All my best! 

Keep us updated on how you are doing. Tons of peeps here are concerned.

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On 11/6/2018 at 7:11 AM, Ennis_TX said:

Well another update and potential source for my issues the past 17 weeks. My pancreas, it has been iffy the past few years, last year it started requiring me to remove all sugars/carbs or risk spiking my glucose through the roof IE 2 forks of hash browns spiked it to the 400s.
I have been taking pancreas enzymes for the past few years....so I think this helped hide the main issues of the pancreas slowly failing.
This last gluten exposure in July....it left me with daily D, it started to get more solid a week or so ago when I started quadrupling my enzymes...the vomiting slowed around this time and I started gaining weight. Well I stopped the enzymes for a day...vomiting  EVERY MEAL, diarrhea that was VERY oily....and I made the connection. I think my pancreas is dead now.
I mean everything ads up, D, vomiting, floating fat in vomit, oil in D, dry skin, zero carb tolerance with extreme glucose spikes, unable to eat meat at all, only digesting blended and mush foods with extra pancreas enzymes.
NOW how do I get this tested? I can not afford a doctor, I am thousands in debt with my family and trying to pay them off for surgery, replacing a water heater, medications etc. I am at a loss here, do I just go on the assumption it is dead and live my life with pancreas enzymes and a no carbs diet to avoid needing insulin?
Now another question is how? IT really coincide with my last ataxia attack totally knocking it out. Did it attack my pancreas directly or damage the nerve connections, or is it brain damage?

Ennis, 

I'm really sorry to hear you're still struggling with this.  

I did some research.  What I found was the usual recommendation for enzymes, which you're already doing.  Must admit I was stumped, so I kept researching and, though it feels like grasping at straws and way out on a limb, I found there's a connection between Sjögren's syndrome and pancreatic insufficiency....

https://www.ncbi.nlm.nih.gov/pubmed/21794796

....and small intestine bacterial overgrowth....

https://www.ncbi.nlm.nih.gov/pubmed/30347705

Here's Sjogren's syndrome treatment (antimalarial drugs!?!)... 

https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/diagnosis-treatment/drc-20353221

And natural remedies for SIBO...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/#!po=29.0000

I wish I had all the answers. I wish I could do more.  Squirrel is right, there's tons of people here that are concerned for you.  Your Celiac family is rooting for you.  

Sending hugs and encouragement!

Kitty

 

 

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What did you find out about your daughter ? My son is 6 and has used the exact same sentence!! He feels like there is a bubble in his throat. He has been complaining on and off for the last year and recently it seems he complains more Ans Wants me to make a doctor appt. he had reflux bad as a baby until about 2.5 and allergies to fomula Ans my milk but since then I thought that all went away. 
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