PPI - Celiac Link - NIH Studies

[Kate333]

I was diagnosed with "probable" celiac a few months ago after 5 years of taking PPIs daily. (I quit taking them after my most recent EGD/biopsies came were essentially normal.)

Since then, I have suffered from CONSTANT daily digestive issues (D, C, gas).  My doc also thinks I may have IBS as well.

I was shocked/angered when I searched the net ("PPI - Celiac links") and found studies/reports linking long-term PPIs to later development, diagnosis of celiac, and other digestion issues!

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

These studies have been around for MANY years, so I don't know how in good conscience GI docs can possibly: 1) be unaware of, unconcerned by them; 2) not even discuss this link/issue with patients BEFORE prescribing PPIs; 3) prescribe them ONLY for very short periods of time and ONLY to heal specific EGD/biopsy-confirmed damage (e.g., esoph. ulcers), not as a "band-aid" to reduce GERD. 

I don't expect an answer because I realize my Qs are only "rhetorical" reflections of my grief, sadness, rage at the possibility that I inadvertently, unknowingly but permanently  damaged my body, triggered this serious, incurable, chronic disease by "simply (blindly) following docs orders".  It's just a shame that most we non-medically-trained "laypeople" patients are forced to spend HOURS on the internet, researching celiac/gluten issues and drug safety, then torture ourselves with worry/regret after the fact, when we see these reports because doctors so casually hand them out and often fail to even carefully monitor their LT use.  During that 5 year period when I was on PPIs, I can't recall a single PCP or GI ever asking "How are you doing?  Do you think you still need this?" before renewing the prescription.

Life is a classroom, but this is one hard "lesson" to have to learn AFTER the harm has been done!           

 

[trents]

Good stuff, Kate333. Thannks! I can understand your frustration and pain. There is so much being learned about Celiac Disease these days. We know so much more that we did 15-20 years ago when I was first diagnosed. Slowly, doctors are catching up to the research but that seems to be the way it is with most every disease.

Personally, I developed celiac disease well before I was ever on a PPI but the striking factoid of the study you cite is the escalating metrics of celiac disease diagnosis being parallel to the advent of widespread PPI therapy. But there may be other factors as well.

[Kate333]

4 minutes ago, trents said:

Good stuff, Kate333. Thannks! I can understand your frustration and pain. There is so much being learned about Celiac Disease these days. We know so much more that we did 15-20 years ago when I was first diagnosed. Slowly, doctors are catching up to the research but that seems to be the way it is with most every disease.

Personally, I developed celiac disease well before I was ever on a PPI but the striking factoid of the study you cite is the escalating metrics of celiac disease diagnosis being parallel to the advent of widespread PPI therapy. But there may be other factors as well.

 

4 minutes ago, trents said:

Good stuff, Kate333. Thannks! I can understand your frustration and pain. There is so much being learned about Celiac Disease these days. We know so much more that we did 15-20 years ago when I was first diagnosed. Slowly, doctors are catching up to the research but that seems to be the way it is with most every disease.

Personally, I developed celiac disease well before I was ever on a PPI but the striking factoid of the study you cite is the escalating metrics of celiac disease diagnosis being parallel to the advent of widespread PPI therapy. But there may be other factors as well.

Understood.  I only wish I even knew enough years ago to even ask for a celiac disease test.  Had I begun a gluten-free diet much earlier, perhaps my gut and overall health now would not be so compromised.  (I read celiac disease-related gut damage is even much more quickly healed on gluten-free diet in childhood than later adulthood.)  But you are in a better position to comment on that issue as a long-term patient.  It's just hard to spend 5 years obsessively worrying about non-existent, misdiagnosed BE for 5 years and be celebrating in relief when learning that initial diagnosis was wrong.....then--WHAM!!--only to discover I have a NEW, DIFFERENT life-threatening, hard-to-treat (possibly avoidable, medication-induced) condition/illness that affect so many body functions with no real prospect of a cure in sight.  I admit I am still pretty shocked, angry, scared, depressed about that...😖...esp. after watching helplessly as my body changes (dramatic weight/muscle loss, weakness, fatigue) before my very eyes.   Sorry for unloading...It's late and I'm tired...I will save my angst for a shrink's couch, try not to vent so much on this blog....😉

[trents]

Wow! I can feel your anger as I read your words.

I don't know the exact time in life of the onset of my celiac disease. I can trace it as far back as 37 years of age when I when I went to donate blood at the Red Cross and they turned me down because of elevated liver enzymes. I wasn't a drinker and had not practiced risky living so, feeling to be in good health, I didn't think more about it. Fast forward about 5 years and I was by that time working in a hospital and part of my benefit package was an annual CBC with blood chemistry battery included. The liver enzymes were still slightly elevated. Over the period of several more years other blood values got out of whack as well: low albumin and total protein and low iron levels. Finally, I went to my GP who ordered testing for various kinds of hepatitis and a couple of other tests but they were all negative. He was stumped. Finally, he said, "I guess your just that way. Maybe that's normal for you." I was not satisfied with that explanation and soon I scheduled an appointment with a gastro doc because the liver enzyme thing really worried me. Right away he did a blood test for celiac disease antibodies which was positive and then he did the endoscopy to confirm. That was 18-19 years ago. About that same time I was suffering from GERD with a hiatal hernia. The gastro doc put me on Protonix. I'm 69 now and trying to wean myself off or at least down from the PPI. 

Shortly after the Celiac Dx I also had some imaging done for back pain and discovered that I had osteopenia so began taking calcium supplements which I have sense discontinued as I don't think there is good evidence they really help. I also have a little scoliosis and some definite kyphosis but there is a strong history of kyphosis on my mother's side so not sure how much of that is due celiac disease and/or LT PPI use. 

Sometimes I get angry when looking back to when my primary care dock said, "I guess you're just that way." But I must remind myself back then there was very little general knowledge of celiac disease. I was blessed to have good medical benefits that allowed me to become aware that something was not right in my body and to allow me to schedule an appointment with a specialist who knew enough to check for celiac disease. I am also blessed to be able to afford to buy gluten-free food and all the supplements I need. I am in good general health and able to be active so I am thankful for those things. After I went on a gluten-free diet the liver enzymes normalized but the albumin and total protein have gotten back into the normal range only in the last few years. Two endoscopies within the first three years did not show recovery of  the villi. I suspect I was getting glutened more often than I realized as I am not a particularly sensitive Celiac so it's hard to tell unless I get a gross amount of gluten. Retirement has allowed me to be more consistent with my diet and an endoscopy done about two years ago showed the villi to be restored. That was really good news! 

My faith in Christ helps me keep a healthy perspective on the ebb and flow of life. There is so much we could all dwell on and become angry about but there is so much more to be thankful for. I am reminded of the old gospel hymn: "Count your blessings. Count them one by one. Count your many blessings and see what God hath done."

[Posterboy]

Kate333,

I am glad you brought this topic up.....I have been saying similar thing about Low Stomach acid as it relates to GI problems for years....

It is good to hear someone besides myself say it...

Here is a Posterboy blog post I wrote about it over 3 years ago.

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

Welcome to the forum!

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

Posterboy for low stomach being misdiagnosed!

I knew I wasn't alone!

Posterboy,

[Kate333]

Thanks for sharing Trents and the great advice!   You are so right....Whenever I get hopping mad/wallow in self-pity (seemingly ALWAYS these days), I need to tell myself ("What can you do to feel better/heal?" rather than "How did this @#$% happen and what did I do wrong"..."What else can go wrong in life?").  I probably need to spend less time on the Internet, consulting Dr. Google.  So easy to end up getting sucked down that depressing "rabbit-hole"...

Congrats on your villi entirely healed! You probably sensed it if you felt better/noticed better digestion before he even scoped you.  My doc scoped me (both ends) last Sept. and report said "normal...no celiac sprue...mild gastritis".  But, oddly my symptoms (bad daily D, C, cramps, gas with weight/muscle loss) do not seem to be improving much on a gluten-free diet.  I suspect much of that is due to bad stress (BIG issue in my life overall and esp. after CV). I have cut all G exposure by eating only natural (no packaged food), but I have no real way of knowing my gut's true condition, how bad the damage now (and as time goes by) because I understand docs are only able to see portion of the small intestine/villi during EGD.  I requested one of those cutting-edge "pill cams" to see the ENTIRE gut but he declined.  Too bad that's not routinely or easily done.  It would be great to be able to see pictures as healing progresses.  Are you surprised it too so long to recover your villi?  20 years sounds pretty long!  I haven't gotten spine/bone xrays yet but I do notice generalized aches/pains/muscle cramps/terrible fatigue and sometimes my hands/feet feel cold/numb.  Does that sound familiar?  BTW, I know these weird symptoms can all be caused by extreme stress, too (definitely in my life since last year).  I have been given an anti-depressant Rx but was waiting/hoping my gut "calms down" a bit before introducing ANOTHER pill. 

LIke most people over 50, I probably do have "Osteopenia" but I don't see the point of even being tested and adding ONE MORE THING to worry about/fear because it's not reversible with existing meds, most of which are useless (cannot prevent or reverse bone loss) and toxic, awful irritants to the gut (Fosamax, Boniva, for example).  I just take a multivitamin and try to do weight-bearing and other exercise.         

 

7 minutes ago, Posterboy said:

Kate333,

I am glad you brought this topic up.....I have been saying similar thing about Low Stomach acid as it relates to GI problems for years....

It is good to hear someone besides myself say it...

Here is a Posterboy blog post I wrote about it over 3 years ago.

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

Welcome to the forum!

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

Posterboy for low stomach being misdiagnosed!

I knew I wasn't alone!

Posterboy,

🙂.  Thanks Posterboy!

[Posterboy]

16 hours ago, trents said:

The liver enzymes were still slightly elevated. Over the period of several more years other blood values got out of whack as well: low albumin and total protein and low iron levels

Trents,

I was you 10+ years ago....

Low Albumin can be a sign of Refeeding Syndrome....It (Low Albumin) levels can be the trigger for diagnosing someone in a Celiac Crisis...

I recently wrote a Posterboy blog post about how Refeeding Syndrome is happening Co-Morbid in a Celiac Crisis....it might help you.

https://www.celiac.com/blogs/entry/2722-is-refeeding-syndrome-being-misdiagnosed-as-a-celiac-crisis-today-latest-research-indicates-a-celiac-crisis-could-be-refeeding-syndrome-being-misdiagnosed-instead/

AS for the elevated Liver enzymes they can be the first signs of Gastric Beri Beri....and since the doctor's don't recognize in the West anymore it goes misdiangosed or undiagnosed often until you develop a Celiac Crisis as you did when they noticed your Low Albumin levels...

I also had Low Albumin levels when I was diagnosed as a Celiac...plus other electrolyte problems like Low Potassium etc...elevated Creatine in Kidney's

I saw where you were taking Magnesium now (didn't see form....Magnesium Citrate with Meals or Magnesium Glycinate anytime is best), Riboflavin and Niacin....add Benfotiamine (a fat soluble B1 found in the Diabetic section) to that regimen and your Liver enzymes should get better in 3 months (if they haven't already)....again best will meals because it is a fat soluble form of B1 and needs Fat for best absorption...

Here is a nice study about it entitled "Elevated Lactate Secondary to Gastrointestinal Beriberi"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

quoting relevant parts for easy scanning....read it all when you get a chance...

"Initial workup revealed ..... a mildly elevated aspartate aminotransferase (AST) of 48 IU/L (normal 0–40 IU/uL..."

"Meanwhile, the patient’s liver function tests worsened to an AST of 134 and an alanine aminotransferase (ALT) of 187 IU/L by day 10" IE continue to worsen...

And now there conclusion summary

"Insufficient thiamine as a cause of elevated lactate is easily and inexpensively treated, and should be considered in cases of unexplained elevated lactate levels, especially those who concurrently present with gastrointestinal symptoms not otherwise explained.6 The described patient was difficult to diagnose due to a lack of risk factors for thiamine deficiency, the concurrent presence of a duodenal ulcer, and a lack of neurological findings besides chest tingling.12

Outcomes of delayed diagnosis of thiamine deficiency as a cause of elevated lactate and gastroenterological symptoms can lead to unnecessary tests, procedures, and even death.13,14 In this case, an initial lack of consideration of

thiamine deficiency led to the patient having an unnecessary repeat abdominal CT scan and CT angiography, and ultimately a prolonged hospital stay. While thiamine deficiency is now commonly associated with alcohol abuse, suspicion should be maintained for gastrointestinal surgery and fad diets as causes, including in the obese. Detailed surgical and dietary histories can be critical in making the correct diagnosis. When faced with elevated lactate levels in patients with and without sepsis, it is important to consider a multifactorial etiology, such as thiamine deficiency and liver dysfunction. A systematic approach to elevated lactate is essential. Failure to properly diagnose and treat similar cases will result in wasted health care expenditures, morbidity and mortality."

Including elevated AST and ALT liver enzymes going undiagnosed as the one of the first signs of Gastric Beri Beri....

Trents know I would help you in anyway if I could....

I have a visitor tonight .....so I have just tried to skim the surface in this post...so I will stop for now...

Maybe Knitty Kitty will come on here soon.....and comment....she knows a lot about Beri Beri being misdiangosed or going undiagnosed too....because we both were misdiagnosed/undiagnosed when we had similar symptom's that were missed at the time....much like yourself!

Beri beri is a great Imitator...

I hope this is medical advice.

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

2 Timothy 2:7 may God give you understanding...

Posterboy by the Grace of God,

[cristiana]

Hi Kate

My good friend who doesn't have celiac disease but does have regular bouts of gastritis was told by her doctor that half our town is taking PPIs. As a beautician she comes into daily contact with people mid-life plus and says that the amount of people taking PPIs is indeed astounding.  I think doctors probably do prescribe them and renew the prescriptions all to quickly.  But of course for some people they are an essential longer-term treatment to keep even nastier things at bay.   

I think I would have carried on taking them unquestioningly but for the fact that in my own case they do cause uncomfortable side-effects, hence I tend to try to wean myself off them as soon as I can.   As you know this time round I'm finding it a struggle because for reasons I don't understand the Nexium which is normally very effective with few side effects seems to be causing a lot of weird side effects.  But perhaps it is to do with my time of life, or the hot weather, or some bug I might have picked up along the way.

Strangely enough, I feel that omeprazole actually put me on the road to diagnosis so I can't be too cross with it!  I got severe D symptoms whilst taking a short course of omprezole in 2013 to treat a burning stomach.  Prior to that I'd had such weird Liver Function Tests and weird neuro symptoms but the doctors didn't know what it all meant.   I was convinced at the time that  the omeprazole triggered the D - but of course I'll never know.  Anyway, the D then led the blood tests in the celiac disease direction so it turned out to be a blessing.

I get very scared each time any gastro symptoms come back as I always think "What if it's this or that?"    Do you feel that too?   It is too easy to google and I feel I've acquired a lot of unhelpful knowledge these past few years which adds to the stress.  One consultant I saw for another issue convinced I was, like him, in the medical profession as he was astounded at my grasp of medical terminology!  

But on the subject of fear, the great thing about being on this forum is you can read your old posts and they can sometimes be reassuring.  I was reading my last gastritis thread of a couple of years ago and see I was complaining then about it bad back pain and shoulder pain having taken a PPI or Ranitidine, even though it had settled the burning stomach!  I'd completely forgotten that  had happened.    

Anyway, I hope you will find this forum a great help.  There are some fantastic people that have shared this journey with me - frankly I don't know what I'd have done without them.

And thanks Trents for what you posted at the end of your post - I needed to read this this morning.  

My faith in Christ helps me keep a healthy perspective on the ebb and flow of life. There is so much we could all dwell on and become angry about but there is so much more to be thankful for. I am reminded of the old gospel hymn: "Count your blessings. Count them one by one. Count your many blessings and see what God hath done."

 

[Awol cast iron stomach]

On 6/28/2020 at 7:34 PM, Kate333 said:

I was diagnosed with "probable" celiac a few months ago after 5 years of taking PPIs daily. (I quit taking them after my most recent EGD/biopsies came were essentially normal.)

Since then, I have suffered from CONSTANT daily digestive issues (D, C, gas).  My doc also thinks I may have IBS as well.

I was shocked/angered when I searched the net ("PPI - Celiac links") and found studies/reports linking long-term PPIs to later development, diagnosis of celiac, and other digestion issues!

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

These studies have been around for MANY years, so I don't know how in good conscience GI docs can possibly: 1) be unaware of, unconcerned by them; 2) not even discuss this link/issue with patients BEFORE prescribing PPIs; 3) prescribe them ONLY for very short periods of time and ONLY to heal specific EGD/biopsy-confirmed damage (e.g., esoph. ulcers), not as a "band-aid" to reduce GERD. 

I don't expect an answer because I realize my Qs are only "rhetorical" reflections of my grief, sadness, rage at the possibility that I inadvertently, unknowingly but permanently  damaged my body, triggered this serious, incurable, chronic disease by "simply (blindly) following docs orders".  It's just a shame that most we non-medically-trained "laypeople" patients are forced to spend HOURS on the internet, researching celiac/gluten issues and drug safety, then torture ourselves with worry/regret after the fact, when we see these reports because doctors so casually hand them out and often fail to even carefully monitor their LT use.  During that 5 year period when I was on PPIs, I can't recall a single PCP or GI ever asking "How are you doing?  Do you think you still need this?" before renewing the prescription.

Life is a classroom, but this is one hard "lesson" to have to learn AFTER the harm has been done!           

 

All the feelings are normal and expected. Searching for answers and asking why also is valid. I'm not saying the PPI may not be contributing to the issues of gi illness. One can't negate the genetic predisposition and potential multifactorial issues that contribute to celiac. 

There are other pharmaceutical drugs that potentially mess up the gi tract as well. In the quest to " fix " one problem it could cause another to occur. Or ultimately symptoms can be being covered up and the actual disease is not being cured merely symptoms managed.  In hindsight I can easily question 3 different prescriptions I was given over the years being thrown at what was a manifestation of a celiac symptom. Yikes! 

It is ok to have anger, frustration, or a whole spectrum of emotions. You have a life changing & life style changing diagnosis. I experienced these thoughts myself.

Part of the role of the forum is to be able to allow you to release the emotions you experience post diagnosis.

Have a good day Kate. Treat yourself lovingly and kindly today.

[trents]

There is hardly a medication that does not have potential risks. I think we need to see this as trying to correct what we know to be a problem with a remedy that we know works but we also know has the statistical potential to cause other problems and then weigh the benefit/risk ratio. I speak in general terms here, not specifically of PPIs. 

And each of us has a responsibility to research and educate ourselves on the risks involved as well as the alternatives. The advent of the Internet makes an abundance of information available to all of us and the information shared by members of this forum is proof of that. No more can we pass all the blame over to our doctors for mismanagement of medications. Each of us has the responsibility to be our own advocate.

[Kate333]

Hi Cristiana,

"I get very scared each time any gastro symptoms come back as I always think "What if it's this or that".    Do you feel that too?   It is too easy to google and I feel I've acquired a lot of unhelpful knowledge these past few years.  (One consultant I saw for a lump in my tongue was convinced I was, like him, in the medical profession as he was astounded at my grasp of medical terminology!)" 

LOL ...Your comment above comment is SPOT ON in my case!!  If I have a "mild headache"...I fear a brain tumor.  If I have a spot on my skin, I am absolutely sure it is deadly skin cancer....After my celiac disease/IBS dx, I spent DAYS on the computer, researching worst-case scenarios....and worrying: "What if my gut NEVER heals and I NEVER feel any better?" etc. etc. etc. And my tendency to obsessively consult with "Dr. Google" only worsens anxiety because, face it, MOST symptoms are either entirely stress-related or indicative of THOUSANDS of possible illnesses....So why do we torture ourselves with catastrophic thoughts/speculation?  So time-consuming and upsetting....

I am such a bloody basket-case hypochondriac!!...🤒😵  Throughout my life I have been REPEATEDLY scoped and EKG'dMRI'd/x-rayed until the cows come home and driven to ER by ambulance--all whilst being utterly certain I was on death's doorstep.  My docs all know me by my first name and love to see me because they know I easily understand their medical jargon, test results. They also know all my unnecessary, panic-driven visits will quickly pay their early retirements.  😏 

Have a great day!