Gastroparesis/Delayed Stomach Emptying and Colonic Inertia

[FernRhizome]

Hi folks:
I've been intending to start a thread on gastroparesis also known as "delayed stomach emptying" and on colonic inertia for awhile. Both of these GI situations are often a part of POTS and dysautonomia and mitochondrial disease and so of course, found in CFIDS as well. Not being able to eat or elminate are very difficult problems to live with and can even, when very severe as my case has been, be life-threatening.

Symptoms of GP include a feeling of fullness even on eating a tiny bite. One can have zero appetite—in my case I never even get hungry, my stomach muscle doesn't work well enough to get hungry. Or sometimes there is appetite but there may be nausea when one eats.

There is a simple test for diagnosing gastroparesis which is called the "stomach emptying test." You eat radioactive scrambled eggs and then have a series of x-rays. My stomach only worked at 7% of normal when I first became acutely ill and the situation was life threatening and I had to be on nothing but tiny amounts of liquid nutrition.

If you have severe constipation but usual remedies that work in healthy people such as increased fluids and increased fiber actually make things much worse, then you may well have a colon "motility" problem. Which means the colon's smooth muscle is not able to function well. The best simplest test for colonic inertia is called Sitz marker test. You swallow a capsule with little markers and then have a series of x-rays each day as they travel through the colon.

The gastroparesis diet which can also help with colonic inertia as well is usually high protein (because calorie restriction is so limited) and low fat (fat slows motility) and low fiber (if there is a motility problem fiber can actually SLOW motility whereas in a healthy person it would speed it up.) Often one has to be on liquid nutrition product supplements to reduce the overall quantity of food/fiber eaten.

There are various drugs that can be used for GP though all have some side effects, there is a good safe drug that can help with colonic inertia (Miralax) and a good website for further information on both of these conditions is www.gpda.org. I've been through every single GI test in the book and many experimental ones as well. Hope this info is of help to others.

 

[FernRhizome]

By the way is there any way to cross index this with the symptom category? I may move it there as it doesn't have anything to do with a particular protocol??? ~Fern

 

[Suzy]

Interesting FernRhizome,
Have you been able to pinpoint the cause of your gastropereiss ? Mineisn't as severe as yours but I suspect I have an upper motility problem as well.

Have you tried any of the motility meds such as bethenecol ?

 

[FernRhizome]

Suzy:
Gastroparesis is quite common in autonomic and mitochondrial disorders as the GI tract is muscle (so unhappy mitochondria would make it weak/slow) and the autonomic nervous system is also muscle, smooth muscle, so just the same way in CFIDS our blood circulation is impacted, so the GI tract can be impacted too. Keeping blood circulating and food moving both involve healthy functioning smooth muscle. I've been on most of the drugs at one point or another, but I don't think I've tried bethenecol.

 

[Suzy]

Bethencol is used to stimulate the parasympathetic part of the nervous system which youmention above (the autonomic nervous system).

I wish it were easier todetermine specifically *why* we have these motility disorders.

 

[FernRhizome]

In one of the XMRV abstracts from last week's SF meetings they found that XMRV was in reproductive organs and also in the GUT! So it may be XMRV in the gut which causes the gi dysmotility.....time will tell.

 

[Anika]

I was drawn to this thread because a (thankfully infrequent) symptom since CFS has been occasional stomach just stopping emptying, with nausea. I haven't been fully able to track it to a single trigger. like a particular food, although fish has triggered it on more than one occasion.

On the "other end", inertia is the opposite of my problem.

But, definitely, we share motility problems. Can the same thing result in different types of gastro problems? Why not.

 

[nanciswell]

... I had severe constipation for years.. I was up to taking 1500 mg Vit c plus a wack of magnesium and I was still having troubles.. Upon eliminating all sensitivities.. I mean all.. I am down to eating around 6 things... even watching what I put on my skin as those chemicals also go right to my liver/ gallbladder and will stuff me up..

I am also weakened with poor adrenal function, hypothroidism, and low hormones but the staying away from foods made the biggest difference. Taking phosphatidylcholine and glycine helped prior to going off the foods and i still take one PC with each meal and some glycine to support my gallbladder bile flow....

www.plantpoisonsandrottenstuff.info Those foods I am sensitive to are just like a poison.. it only takes a pinch and I will notice it..

nanci

 

[Francelle]

GP and gut inertia!

I am another ME/Fibro person who has Gastroparesis.

My Gastroparesis symptoms started the same day as my ME/CFS (what ever you want to call it) on August 3rd 2007. However after a few weeks the GP symptoms abated and it was not until October 2008 that the symptoms returned with a vengeance. I was diagnosed in January last year, 2009, after a Gastric Emptying Study. A few days later I was diagnosed with Fibromyalgia as well (by another doctor).

I am surprised that there are not more people here with GP! Dysmotilities seem to be rife in CFS/ME/Fibro patients yet little is mentioned about Gastroparesis - more about IBS.....grrr! I also now have oesphageal dysmotility (symptoms & manometry test) and I'm sure the colon is affected too as constipation seems to be a big problem despite 'thinking' fibre all day!

I am on a liquid or pureed diet apart from prawns and white fish which I can eat very tiny amounts of, in their solid state. For 'fibre' I have cooked pureed prunes (very diluted), benefibre, warm water and a few other suitable laxative products, considering that GP patients cannot have excessive fibre!

For those of you with colonic inertia how did they diagnose it?

 

[richvank]

Digestive system problems in CFS

Hi, all.

In my opinion, the gut and the brain are the two organs whose dysfunctions are the most complex in CFS, because so many things are going on that impact these organs. In both cases, I think that the vicious circle involving partial methylation cycle block, draining of folates from cells, and glutathione depletion is at the basis of the problems. Here are the factors I've identified that may be affecting the digestive system in CFS:

1. Low stomach acid production. I think this could be caused either by deficiency in certain nutrients that are needed by the parietal cells in the stomach (such as zinc) or by mitochondrial dysfunction in these cells as a result of glutathione depletion, or both.

2. Low production of digestive enzymes by the pancreas. The pancreas has been shown to be particularly sensitive to methylation deficits. Also, the pancreas requires a signal in the form of secretin, which does not get sent well if the food coming into the duodenum lacks enough acid.

3. Low production of bile and bile acids. A major part of the volume of the bile depends on glutathione in the liver. A major part of the bile acids contain taurine, which can be depleted in some cases in which there is a methylation cycle block, which impacts the entire sulfur metabolism. Also, the excretion of bile by the gall bladder requires a signal from cholecystokinin, and this is also not sent well if there is a lack of acid in the food mixture coming into the duodenum from the stomach.

4. Slow emptying of the stomach. This has been found in an Australian CFS study. I suggest that it is due to the above factors. Normally, the stomach emptying is controlled by the rate at which the food can be processed in the gut. If digestion is not going well, the food will be held up in the stomach.

5. Low production of acetylcholine. Acetylcholine is the neurotransmitter of the parasympathetic nervous system, which promotes gut motility. Choline is necessary for making this neurotransmitter. Some normally comes in from the diet, and some is made in the body by the conversion of phosphatidylethanolamine to phosphatidylcholine. This is one of the two main users of methylation in the body, so it is impacted by the partial methylation cycle block.

In my opinion there has been a misinterpretation of past research in CFS involving choline. It has been mistakenly thought that choline is elevated in CFS, rather than being deficient, because of misinterpretation of the results of magnetic resonance spectroscopy studies of the brain in CFS.

All but one of these studies evaluated the ratio of choline to creatine, and found it to be higher than normal. The error was to assume that creatine remains the same in CFS patients as in healthy normals, and thus to infer that choline must be higher than normal.

However, creatine also requires methylation for its synthesis in the body (and may be the main user of methylation), so a methylation cycle block should be expected to lower its production as well. If creatine is lowered more than choline is lowered in CFS, the choline to creatine ratio would be higher than normal, but both choline and creatine would be lower than normal.

In one study, the ratio of choline to water in a part of the brain was evaluated, and was found to be higher than normal. However, CFS patients generally suffer from diabetes insipidus (not to be confused with diabetes mellitus) and thus their bodies lose water excessively to the urine. If the drop in water in the brain exceeds the drop in choline, the ratio of choline to water will be higher than normal, but both water and choline will be lower than normal.

The only study that attempted absolute measurements of choline and creatine found both of them to be lower in CFS than normal, but with the methods used, the result was not found to be statistically significant. I'm hopeful that future studies in this area will be able to measure the absolute levels of these metabolites more precisely.

Vance Spence's group at the University of Dundee in Scotland published four papers involving acetylcholine response in CFS. They found that CFS patients had a much stronger response when acetylcholine was given through the skin than did normals. I believe this was caused by acetylcholine depletion in the CFS patients, which would have caused their population of acetylcholine receptors to rise in compensation, so that when the acetylcholine was given, they would have had a greater response to it. The authors did not consider that acetylcholine might be low in these patients, because they accepted the published conclusions from the MRS studies, which I believe were based on a misinterpretation.

There is also a Japanese paper in which it was reported that three patients were given a drug (pyridostigmine) which inhibits cholinesterase, the enzyme that normally breaks down acetylcholine. This would have had the effect of raising the level of acetylcholine. These patients were reported to have benefited from this treatment, and this has been a puzzle, because it was believed (incorrectly in my opinion) that acetylcholine is not low in CFS.

6. Abnormality in serotonin production. Serotonin also influences gut motility, and production and metabolism of serotonin is also impacted by methylation. Some studies have suggested that serotonergic effects are higher than normal in CFS.

7. Difficulty in making new enterocytes. The enterocytes that line the gut are normally replaced rapidly, compared to most other types of cells in the body. This requires DNA and RNA, and synthesis of these requires help from the folate metabolism, which is dysfunctional in CFS because of the partial methylation cycle block.

8. Inability to take out toxins from the gut at normal rates. Glutathione is important in detoxing the gut, and it is depleted.

9. Intestinal yeast infections and bacterial dysbiosis are very common in CFS. I suggest that they result from a combination of lack of stomach acid to kill the pathogens that come in with food, poor digestion of food because of low stomach acid, low bile and low digestive enzymes, which leaves food for the unhelpful bacteria, and poor gut motility (especially lack of cleansing peristaltic waves) because of the neurotransmitter problems discussed above, which leaves food in the small bowel, and leads to SIBO (small intestinal bacterial overgrowth).

10. Lowered level of secretory IgA. This results from dysfunction of the HPA axis, which I believe results in turn from glutathione depletion in the hypothalamus/pituitary.

11. The combination of the presence of the dysbiotic bacteria and the lack of enough secretory IgA and glutathione makes the gut vulnerable to developing permeability (leaky gut). This allows large molecules to enter the blood from the gut, and the immune system responds, producing food sensitivities.

12. In some cases, celiac disease or non-celiac gluten sensitivity develops, affected by genetics.

13. The dysbiotic bacteria form biofilms that protect them.

There are probably more factors that I haven't discussed here, and there are also many consequences of the gut problems that I haven't discussed, but in view of the above, it is not surprising that there are digestive system problems in CFS. I think that the root cause of these problems is the partial methylation cycle block, and that treatment must be given to lift this block, while at the same time direct efforts to correct the downstream problems in the gut must also be made.

I hope this is helpful.

Rich

 

[Sing]

I suspect the vagus nerve, which is what activates and regulates the digestive track--so, a possible neurological cause. The way the stomach sits on food, doing nothing, and nausea starts, then vomiting--the vomiting is the body's back up system for getting the food out/somewhere! instead of blowing the body up and poisoning it by just sitting there and doing nothing.

My own course was to begin in life with constipation--perpetual constipation. As a child I had bowel movements only once every five days and these were accompanied by severe cramps and painful elimination. Eventually I got hemorrhoids from the pressure. (Ugly picture, sorry!) In other words, the body applied a back up system after 5 days to blow the stuff out. So, until I got access to loads of bran and fiber once I could regulate my own diet away in college, I lived like this. Still, the constipation was always there. Until----4 years ago I had a severe gastrointestinal illness. Since then, diarrhea has been the basic action. I am prone to nausea and can go into vomiting if I eat too much too fast in the morning before my system (neurological and gastrointestinal) has fully woken up. This means most of the morning. Also have had to stop dairy and legumes , and for a long time many other foods. Now I can eat a more varied diet and have ok bowel function, except for a lot of gas still. I know that I am on a short leash and that my digestive system problems could easily progress to BLANK. I have a background fear that I will die of starvation.

 

[Sing]

When I wrote the above post, I hadn't read Rich's long, careful, analysis with his hypotheses. I would add that I agree that acetylcholine is low in our condition. I started taking a half dose of Aricept, the drug for dementia, that slows the break down of acetylcholine in the brain. This helps me cognitively, neurologically, in a number of ways. It is a boost which could be making the difference between life and death when out driving a car, for instance. And perhaps it too is helping with my current digestive function which is do-able, though, as I say, I'm on a short leash.

Sing

 

[Suzy]

Hi Rich,
This is a great summary.
I have serious gut problems. I have recently (finally!) had a normal glutathione test after about 3 months on the protocol and many months on vitamin C and tocotrienols/mixed tocopherols.

But I still have gut problems and fatigue. So, I"m looking to work on some other factors.

I am gathering everything needed for Mark Pimentels protocol and the biofilm protocol.

But in the meantime, I've been wondering about the SiGa. Mine is very low and I did not know about the HPA axis being an issue. Would there be a time dalay between teh glutathione rising and the HPA axis recuperating ?

 

[FernRhizome]

Francelle:
The simplest gold standard test for colonic inertia is called a "sitz marker" study. You swallow a capsule which has about a dozen very small plastic rings....then you start a series of x-rays, one each day for 7 or more days and they can count the rings and their locations so they figure out that way how long it takes for food to move from the beginning of the colon, out the end. It's a very easy study to get through. There are also a number of less pleasant research studies, but the sitz marker study is really helpful. ~Fern

 

[Ems]

Is this test only for adults? My son has had severe constipation, reflux and pain, yet the only tests he has had for this are barium meal and endoscopy. He takes Movicol and a proton pump inhibitor each day.

The gastroenterologist has just told us that he has to live with the condition but I would like to push for more testing. Any ideas would be much appreciated.

 

[nanciswell]

HPA axis

I am adding on to my story.. coming to get more in touch with what is happening in my gut..
Since stopping eating all the foods in my diet I am sensitive to.. my gut has improved alot.. But it still had a constant feeling of sitting there .. in my large intestine..

I started taking tyrosine.. an amino acid which affects the amount of dopamine in our bodies.. It has been a turning point.. I kind of think I am beginnning to get in tune with my body.. All this time I have been fighting these symptoms not really understanding the root of it all.

I had taken tyrosine prior to an elimination diet , and now with the lowered reactions I am more in tune with its benefits. . IT is definitely a missing link..\\Tyrosine affects the levels of dopamine, affecting the limbic system and the HPA axis.

My symptoms always mimiced on the side of parkinson symptomology which is from a lack of dopamine...

My very first sign of being ill was minor.. some burping, very mild depression and mild constipation. I had a course of antibiotics for cystitis , followed two weeks later with two courses of a heavy duty parasite drug as I had passed a round worm in my stool. after which .two days later my body crashed.. I think in retrospect I was always sensitive to foods and was on a manic high as the foods give me a manic and now depressive reaction..

My first symptoms upon my body totally crashing were a feeling like my feet/ legs felt like lead.. I was very stiff.. walked with a shuffle, incoordination with problems relating to the different sides of my body.. \ I had bad nausea.. bad air hunger These symptoms did not abait

I got on to taking coenzyme Q10 for the air hunger due to mitral valve prolapse. THen with taking extra vitamin c and magnesium my bowels improved a wee bit.. Then with stopping eating the food sensitivities my bowels went to normal. I was able to stop all hycrochloric acid, and enzymes for food digestion.

Over the years other symptoms have appeared..trouble walking got worse, trouble writing, memory problems , sweating { whereas previously I did not sweat enough]> . Feverish feeling got worse, Taking epsom salts soaks for the sulfate , and taking hydrocortisone cream helped lessen the sweats alot.

At my worse I had had a parkinson like head shake which did go away with chelating for heavy metals.


Since taking tyrosine my gut is moving better. ie I am passing alot of gas.. whereas before it would just sit around and I did not even know I had alot of gas.. It just was in such low energy level that I would be bogged down with dealing with that stress. I am walking with strength, and my mood is alot better.. I felt hopeful and back to the normal me.. After so many years of being ill it felt amazing..

I am sensitive to it but will try it again as the benefits far outweighed the side affects from the sensitivity.. It must be made from some food I am sensitive to .. ie beets .. I know taurine is made from beets and I reacted badly to that..

.

From the beginning my symptoms were predominantly gut related..with the nausea and constipation.. and I could not totally see the gut/ mind connections. .... .. http://en.wikipedia.org/wiki/Hypothalamic–pituitary–adrenal_axis

This affects the adrenals/ pituitary and hypothalamus.. and stress...

and it totally makes sense.. along with the gut/mind connection.
For me irritable bowel is how it links to my mind.. http://ibs.about.com/od/symptomsofib1/a/braingut.htm


You see in traditional chinese medicine the large intestine and the lung are related. Well since having the tyrosine I am much more aware of how I do feel in a panic..Maybe now the gas is moving .. I can have the energy to want to breath and hyperventilate.. Like now I have the reflex to have a "panic" attack.. and start to wish for more air.. Before it was a chronic condition and it just landed in my gut.. and my gut all tensed up rather than me realising I was having a panic attack.. ..

I noticed this with my stomach as well. My first symptom of stomach problems was burping.. but that symptom went away to a more chronic condition of feeling dizzy.. Upon forcing myself to purposefully relax , take time out, and purposefully burp I would get feel relief from dizziness. So that symptom had gone into a more chronic state..

I know beleive that my gut wont improve.. no matter how much probiotics, anticandida stuff I do unless it is calmed down with the pituitary / adrenal/hypothalamus {ie HPA axis} supports..


nanci

 

[Francelle]

Thankyou FernRhizome for your info regarding the colonic transit 'sitz marker" test!

One often hears about the involvement of Substance P elevations in Fibromyalgia and I have lifted the quote below from the Phoenix Rising information site. I am wondering Rich how your theory of glutathione depletion and methylation aberrations impinge on this?

"Increased levels of three-pain producing substances have been found in FM. Substance P, the most well-studied pro-pain substance is associated with increased pain, anxiety, stress, nerve damage and nausea".

If this statement is correct, vagus nerve damage or damage to the ICC's (Interstitial Cells of Cajal) as they impact the oesophagus, stomach and intestine could also be explained (cause or effect?) by increased Substance P? Could you comment?

Francelle

 

[richvank]

Thankyou FernRhizome for your info regarding the colonic transit 'sitz marker" test!

One often hears about the involvement of Substance P elevations in Fibromyalgia and I have lifted the quote below from the Phoenix Rising information site. I am wondering Rich how your theory of glutathione depletion and methylation aberrations impinge on this?

"Increased levels of three-pain producing substances have been found in FM. Substance P, the most well-studied pro-pain substance is associated with increased pain, anxiety, stress, nerve damage and nausea".

If this statement is correct, vagus nerve damage or damage to the ICC's (Interstitial Cells of Cajal) as they impact the oesophagus, stomach and intestine could also be explained (cause or effect?) by increased Substance P? Could you comment?

Francelle

Hi, Francelle.

I've heard about the elevation of Substance P in fibro. Unfortunately, I don't have a hypothesis for the pathogenesis of fibro. I wish I did. As we know, there is a big overlap, and there are many people who satisfy the diagnostic criteria for both CFS and fibro. In the clinical study that Dr. Nathan and I did, quite a few of the people who met the CFS criteria also met the fibro criteria, and the group reported a statistically significant improvement in the self-rated parameter "freedom from pain." So it seems as though the Simplified Treatment Approach that was designed to lift the methylation cycle block in CFS also helped with the pain aspect in people who were diagnosed with both CFS and fibro. But I don't have a hypothesis to explain the relationship between the two. Sorry.

Rich

 

[xchocoholic]

My gastroparesis cleared up after I'd been on this diet for awhile. IMHO, if we don't have the enzymes or acids to digest what we've eaten, it's going to sit in the stomach. I've seen this linked to celiac disease / gluten intolerance too though. Gluten is known to cause nuero problems in certain people.

I'll get a little of this again if I've gotten ahold of any gluten or if I eat too much red meat or any ground meats loaded with fats or grizzle. Betaine HCL helps me if it's from too much meat but that's the only time it helps. Otherwise, Betaine gives me really bad GERD.

Digestive enzymes may help here too.

 

[dannybex]

My gastroparesis cleared up after I'd been on this diet for awhile. IMHO, if we don't have the enzymes or acids to digest what we've eaten, it's going to sit in the stomach. I've seen this linked to celiac disease / gluten intolerance too though. Gluten is known to cause nuero problems in certain people.

I'll get a little of this again if I've gotten ahold of any gluten or if I eat too much red meat or any ground meats loaded with fats or grizzle. Betaine HCL helps me if it's from too much meat but that's the only time it helps. Otherwise, Betaine gives me really bad GERD.

Digestive enzymes may help here too.

Interesting about betaine giving you GERD unless you're eating too much meat, but that makes sense. We had a doc come speak to our support group who said that 99% of her CFS and/or Fibro patients have low stomach acid and need betaine HCL supps. Years ago I needed NINE capsules to feel any warmth, but now can't take more than 4 or 5...so I hope that suggests I'm making more of my own, on my own.

I've also found that if I drink too much water (meaning more than 8 oz) with any meal, then I'll get 'pseudo-gerd'. It's not really due to high acid levels, just too much liquid with the meal.

And digestive enzymes...yes...definitely very helpful.