Gastroparesis

[PME]

Background:,I’m an active 60-plus female.  I’m not an athlete, but I play pickleball almost daily and try to get to treadmill and strength training classes. I seldom sit down! I’m 5’4” and weight about 126, so I’m not overweight. My 89 yr old mom suffers from a perilous hiatal hernia. Her stomach resides in her chest cavity. She has had several close calls with it. 
 

I was told I have celiac disease back in November of 2020 following an osteoporosis dx and bloodwork that revealed high celiac number. I am very careful about gluten avoidance (though I have experienced cross contamination).  About four nights ago, After at least a month or two of mostly passing pebble-like stools, I woke at 2:30 am feeling nauseous. The feeling became mostly mild queasy-ness over the next few days, but I was always hungry despite feeling bloated and over-full. I had the sense that food was starting to back up in my system, as each morning my stomach has felt full in a higher location.  So far, thankfully, I haven’t been vomiting. At 5 am today I started researching online and have “concluded” that my symptoms match up with gastroparesis. (I know this is exactly what most MDs tell us NOT to do, but it’s scary when it’s a weekend, and you fear your insides are on a course to explode or implode!) I also fear there may be some kind of blockage. (Yes, I am admittedly a bit neurotic.) I’ve been drinking 32 oz of water on rising each day. It gives me SOME relief — pass very small amounts of light brown stool — but I still feel like my GI tract is overfull. I’ve been trying to figure out if any of my BP meds (losartin & HCTZ) or my low dose of rosuvastatin, all of which were started in February, could be causing the constipation. But I really don’t know. 

Anyway, the gastroparesis discussion here seems to have ended in 2015, and I was wondering if it could be jumpstarted to include anyone who has had a more recent experience. Many thanks in advance! 

 

 

[trents]

Welcome to the forum, PME!

First, I would l feel a need to say that you need to get this checked out as soon as possible by medical professionals. Gastroparesis, if that is actually your issue, can be a life-threatening issue. There is also the possibility of the blockage being caused by a surgical stricture (if you have ever had abdominal surgery), a kink in the bowel or even a tumor. I would not hesitate to resort to urgent care on a weekend. If this has been going on for a month you need to do something. Sometimes as celiacs we neglect to reckon with the fact that things can go wrong with our bodies that have nothing to do with celiac disease.

Having said all the scary things, have you tried a laxative or stool softener? What about an enema? Also, supplementing with magnesium can be helpful as well as a constipation preventative.

If you were diagnosed as a celiac two years ago, have you had a follow-up to check celiac antibody levels to monitor the success of your efforts to eat gluten free?

Edited June 10, 2023 by trents

[knitty kitty]

@PME,

Yes, as @trents said, seek medical attention soon!

I took the same medications and had similar results.  These medications cause certain vitamin and mineral deficiencies.  As a consequence, I had my gallbladder removed and suffered from a severe Thiamine deficiency.  Malabsorption due to Celiac Disease also contributed.  My doctors did not recognize my symptoms as Thiamine deficiency.  I became very ill indeed.

Thiazide diuretics cause a deficiency in Thiamine Vitamin B1.  Losartin causes zinc deficiency.  

Diuretic use: a risk for subclinical thiamine deficiency in elderly patients

https://pubmed.ncbi.nlm.nih.gov/10842416/

And...

Diuretics and vitamin B1: are diuretics a risk factor for thiamin malnutrition?

https://pubmed.ncbi.nlm.nih.gov/11127971/

And...

The effect of losartan and losartan/hydrochlorothiazide fixed-combination on magnesium, zinc, and nitric oxide metabolism in hypertensive patients: a prospective open-label study

https://pubmed.ncbi.nlm.nih.gov/15797654/

 

The gallbladder doesn't function well if there's a Thiamine deficiency.  It stops producing bile which gives poop its brown color.  Pale stools can be indicative of gallbladder dysfunction. 

Thiamine deficiency can cause constipation.  Thiamine deficiency can also cause diarrhea, nausea and vomiting.  You can have any combination.  I did.

Malabsorption of Thiamine due to drinking alcohol can contribute to Thiamine deficiency.  

The poor man in this study had his gallbladder removed before the doctors figured out his thiamine deficiency. 

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

 

Physical activity, especially in hot weather, uses up an increased amount of Thiamine.

A Summertime Stupor

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7306676/

 

It's important to correct Thiamine deficiency quickly to avoid permanent damage.

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

 

Praying I'm wrong.  Do seek medical attention soon.

 

[trents]

I also suggest you give some serious thought to the continued long term use of Crestor:

"Possible association between statin use and bowel dysmotility": https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3291011/

 

 

Edited June 10, 2023 by trents

[RMJ]

  On 6/10/2023 at 5:26 PM, trents said:

I also suggest you give some serious thought to the continued long term use of Crestor or any PPI med for that matter. Research the side effects of PPI's. PPI's and acid blockers increase stomach PH which has a negative effect on digestion and nutrient absorption. This can lead to, for example, osteoporosis. I was on Lipitor for years and became concerned about the long term side effects so I weaned myself off it very slowly. It was tough sledding for awhile because of acid reflux rebound. I also made some dietary and lifestyle changes (for example, elevating the head of my bed and avoiding activity that makes me bend over soon after meals) that helped with the reflux. Now, I still get some acid reflux but uses TUMS for spot coverage as needed, a much healthier remedy I believe.

Expand Quote  

Trent, I’m confused.  Crestor and Lipitor are medications to lower cholesterol, they’re not proton pump inhibitors (PPIs).

[trents]

  On 6/10/2023 at 6:11 PM, RMJ said:

Trent, I’m confused.  Crestor and Lipitor are medications to lower cholesterol, they’re not proton pump inhibitors (PPIs).

Expand Quote  

Yes, and I knew that but got those two things turned around in my mind as I was dealing with two things at once. Let me go back and clean that post up. Thank you for catching that. No wonder you were confused. My bad.

OP, note that I have  edited my original post significantly so please disregard what was quoted by RMJ. But please read the linked article in my corrected post.

Also, I think it wise to have your celiac antibody levels checked to see if you are succeeding in eating gluten free. After two years it's time and by your own admission you are getting CC'd at times. And that could be happening more than you realize, especially if the symptoms of it are sometimes not apparent.

Edited June 10, 2023 by trents

[PME]

  On 6/10/2023 at 2:27 PM, trents said:

Welcome to the forum, PME!

First, I would l feel a need to say that you need to get this checked out as soon as possible by medical professionals. Gastroparesis, if that is actually your issue, can be a life-threatening issue. There is also the possibility of the blockage being caused by a surgical stricture (if you have ever had abdominal surgery), a kink in the bowel or even a tumor. I would not hesitate to resort to urgent care on a weekend. If this has been going on for a month you need to do something. Sometimes as celiacs we neglect to reckon with the fact that things can go wrong with our bodies that have nothing to do with celiac disease.

Having said all the scary things, have you tried a laxative or stool softener? What about an enema? Also, supplementing with magnesium can be helpful as well as a constipation preventative.

If you were diagnosed as a celiac two years ago, have you had a follow-up to check celiac antibody levels to monitor the success of your efforts to eat gluten free?

Expand Quote  

Thank you so much, Trents, for this thoughtful reply. At the risk of TMI, this morning, for the first time in a while, stools were "normal." That said, I'm immediately switching to a gastroparesis diet, as best I can. Will try to eat multiple smaller meals. I've never had abdominal surgery, other than minor laparoscopic surgery many years ago for a procedure related to infertility.  

I have opted not to use a laxative or stool softener or enema at the moment, because things are moving -- albeit slowly. Thank you for the magnesium suggestion. I took a 500 mg tablet with my dinner (plain, nonfat greek yogurt with canned peaches). 

I have definitely been remiss in getting a celiac antibody follow-up. I need to do this asap.  We moved to a new state a few months after my celiac disease dx, and the medical support here is not the greatest. There are way too few doctors for the growing population. I do intend to make this a high priority on Monday. 

[PME]

  On 6/10/2023 at 5:04 PM, knitty kitty said:

@PME,

Yes, as @trents said, seek medical attention soon!

I took the same medications and had similar results.  These medications cause certain vitamin and mineral deficiencies.  As a consequence, I had my gallbladder removed and suffered from a severe Thiamine deficiency.  Malabsorption due to Celiac Disease also contributed.  My doctors did not recognize my symptoms as Thiamine deficiency.  I became very ill indeed.

Thiazide diuretics cause a deficiency in Thiamine Vitamin B1.  Losartin causes zinc deficiency.  

Diuretic use: a risk for subclinical thiamine deficiency in elderly patients

https://pubmed.ncbi.nlm.nih.gov/10842416/

And...

Diuretics and vitamin B1: are diuretics a risk factor for thiamin malnutrition?

https://pubmed.ncbi.nlm.nih.gov/11127971/

And...

The effect of losartan and losartan/hydrochlorothiazide fixed-combination on magnesium, zinc, and nitric oxide metabolism in hypertensive patients: a prospective open-label study

https://pubmed.ncbi.nlm.nih.gov/15797654/

 

The gallbladder doesn't function well if there's a Thiamine deficiency.  It stops producing bile which gives poop its brown color.  Pale stools can be indicative of gallbladder dysfunction. 

Thiamine deficiency can cause constipation.  Thiamine deficiency can also cause diarrhea, nausea and vomiting.  You can have any combination.  I did.

Malabsorption of Thiamine due to drinking alcohol can contribute to Thiamine deficiency.  

The poor man in this study had his gallbladder removed before the doctors figured out his thiamine deficiency. 

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

 

Physical activity, especially in hot weather, uses up an increased amount of Thiamine.

A Summertime Stupor

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7306676/

 

It's important to correct Thiamine deficiency quickly to avoid permanent damage.

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

 

Praying I'm wrong.  Do seek medical attention soon.

 

Expand Quote  

Knitty Kitty, thank you. I'm so sorry for all you must have gone through! I've read through all the links you provided. This medication info is indeed disturbing, especially knowing you were taking the same combo of BP meds I'm taking. I've been taking 100 mg of Losartan daily (since February) and 25 mg of HCTZ daily for at least  25 years. What medications did they substitute for you?

I haven't yet researched how to correct thiamine deficiency. I had been taking daily zinc picolinate, as well as D3 and K2, and I was concerned THEY may have been causing the constipation. 

 

 

[PME]

  On 6/10/2023 at 5:26 PM, trents said:

I also suggest you give some serious thought to the continued long term use of Crestor:

"Possible association between statin use and bowel dysmotility": https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3291011/

 

 

Expand Quote  

Trents, I resisted taking statins for at least 10 years. I finally gave in a few months ago. Cardiologist started me on Lipitor, but I didn't like the leg pains, so they switched me to Rosuvastatin (Crestor). I was taking 5 mg just 3X a week, but because my cholesterol levels were still not where cardiologist wanted them, about 6 weeks ago, she recommended adding a fourth day. I don't know if there's a correlation with the "normal" stools, but I skipped the statin yesterday, having not taken it since Wednesday. 

[PME]

  On 6/10/2023 at 6:29 PM, trents said:

Yes, and I knew that but got those two things turned around in my mind as I was dealing with two things at once. Let me go back and clean that post up. Thank you for catching that. No wonder you were confused. My bad.

OP, note that I have  edited my original post significantly so please disregard what was quoted by RMJ. But please read the linked article in my corrected post.

Also, I think it wise to have your celiac antibody levels checked to see if you are succeeding in eating gluten free. After two years it's time and by your own admission you are getting CC'd at times. And that could be happening more than you realize, especially if the symptoms of it are sometimes not apparent.

Expand Quote  

Again, thank you, Trents. I did read your revised post. I understand that It is critical to know whether I'm staying truly gluten free. I will to to get that lab work done as soon as I can.

[trents]

  On 6/10/2023 at 10:55 PM, PME said:

Trents, I resisted taking statins for at least 10 years. I finally gave in a few months ago. Cardiologist started me on Lipitor, but I didn't like the leg pains, so they switched me to Rosuvastatin (Crestor). I was taking 5 mg just 3X a week, but because my cholesterol levels were still not where cardiologist wanted them, about 6 weeks ago, she recommended adding a fourth day. I don't know if there's a correlation with the "normal" stools, but I skipped the statin yesterday, having not taken it since Wednesday. 

Expand Quote  

My PC do always talks to me about getting back on a statin but I always refuse. My total cholesterol is not particularly high but the LDL part of it is in the red. When I was taking Lipitor years ago I developed restless leg syndrome so was put on a med for that which was only partly effective. For different reasons I made the decision to stop taking the Lipitor and almost immediately my restless leg stopped. I just want to remind you that you can say "no" to your doctor about anything he/she wants to prescribe. Don't be afraid to take control of your own health management. Go to appointments well-informed and prepared to be appropriately assertive. If your doctor is too insecure to deal with that, find another one. Many of us in the celiac community suffered for many years with misdiagnosis after misdiagnosis before we finally found what was wrong. So, we have learned the hard way that most doctors aren't very knowledgeable about gluten disorders. We have had to become our own advocates to get proper testing done.

[knitty kitty]

  On 6/10/2023 at 10:35 PM, PME said:

Knitty Kitty, thank you. I'm so sorry for all you must have gone through! I've read through all the links you provided. This medication info is indeed disturbing, especially knowing you were taking the same combo of BP meds I'm taking. I've been taking 100 mg of Losartan daily (since February) and 25 mg of HCTZ daily for at least  25 years. What medications did they substitute for you?

I haven't yet researched how to correct thiamine deficiency. I had been taking daily zinc picolinate, as well as D3 and K2, and I was concerned THEY may have been causing the constipation. 

 

 

Expand Quote  

 

 

I took high dose Thiamine.  

The World Health Organization says that a thiamine deficiency can be diagnosed if improvement is seen after the person has taken 500-2000 mg of Thiamine Hydrochloride for several days.  Thiamine should be continued for several months afterwards.  

The last article I linked in my previous post has some information.  Intravenous thiamine can be used under medical supervision which may help correct Thiamine deficiency quicker.  

There are other forms of Thiamine that can be used as well.  Allithiamine (TTFD--Tetrahydrofurfuryl disulfide), and Benfotiamine.  

Vitamin and mineral deficiencies are common in newly diagnosed Celiacs.  Since the eight essential B vitamins work together, a B Complex in addition to high dose Thiamine is recommended.  Thiamine needs magnesium to function properly, so concurrent magnesium deficiency should be addressed.

Even cholesterol and lipid dysfunction correction has ties to Thiamine deficiency.  Non-Alcoholic Fatty Liver Disease can be corrected with Thiamine. 

You can read more about my experiences and research on Thiamine here...

 

I did not need any medications at all after my Thiamine Deficiency was corrected.  

[knitty kitty]

Here's a study done that shows thiamine is necessary for the regulation of cholesterol in the body.

 

Organic cation transporter 1 (OCT1) modulates multiple cardiometabolic traits through effects on hepatic thiamine content

https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.2002907

And another...

http://www.jcpsp.pk/archive/2009/Mar2009/08.pdf

 

We can have subclinical thiamine deficiency for years which goes unnoticed because early thiamine deficiency symptoms are vague.  Symptoms can fluctuate according to the amount of thiamine in the daily diet.  A 20% increase in dietary thiamine results in an 80% increase in brain function.  Thiamine demand is highest when we are physically or emotionally stressed.  Physical activity outside in hot weather, an infection, or a medical procedure demands more Thiamine.  During Covid, doctors found thiamine helped the severely ill survive.  Emotional stress such as job changes, loss of a loved one, and even happy events like a wedding uses increased amounts of Thiamine.  

In people with Celiac Disease, the small intestine is damaged and absorption of nutrients is decreased.  There's eight essential B vitamins that all work dependently together.  Most cannot be stored for much longer than a month, so we have to get them from our diet every day.  Thiamine deficiency can occur in as few as three to nine days.  Without Thiamine, the other B vitamins don't work so well either.  Our bodies start to not work so well.  

Doctors are given about twenty-five hours of instruction in nutrition during the seven years required to become a doctor.  They are taught deficiency diseases are a thing of the past, so they don't recognize the deficiency symptoms now, except maybe Wernicke's Encephalopathy (but only in alcoholics).  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/