I'm starving, please help

[Zuriel]

Please advise me of any liquid nutritional supplement as I can only swallow around 4-5
spoonful of food per meal for the past week. My esophagus & stomach feel like inflammed and food "sits" in the esophagus & stomach for a long while. Taking Gaviscon before a meal is like drinking acid- it burns the throat. Dr thinks excessive H2S is producing too much acid in the stomach, hence all the pain & difficulty swallowing. I actually feel very hungry, but could not take in any more food. The sluggish passage of food & water leads to poor urine output. Wonder if it will lead to renal shutdown.

Dr refers me to a gastroenterologist, to been seen in 2 weeks time, followed by a booking for gastroscopy.

Looking for hypoallergenic liquid supplement would be very difficult as I have insulin resistance, lactose malabsorption as well as gluten, soy, eggs and yeast intolerance.
Would appreciate any suggestion if you come across one.

I would love to hear from anyone who's been through gastroscopy. Will one crash after
the procedure? It took me 5 days to recover after a blood test.

Thanks
Zuriel

 

[maddietod]

I can't help with the supplements, but I wonder if you could see the gastro immediately as an emergency patient? One week with insufficient food and liquid sounds dangerous to me, as does the perceived inflammation. I would think your doctor could arrange this by phone. Good luck!

 

[leaves]

you could try this; http://alphastore.org/alphaenf/alphaenf_nutrientvalues.htm or babyfood formulas like http://elecare.com/nutritional-information or this http://www.neocate.com/
your inflammation may be allergy related, try to not eat wheat/grains/milk/soy etc

 

[Nielk]

I agree with madietodd,

This sounds like an emergency to me. Your GI should see you right away but, if not, I would go to the emergency room
now. Definitely DON'T wait two weeks in the state that you are in!! Have you tried baby food jars? When I used to get Crohn's flare ups that's what I would eat. The vegetable ones should not contain any sugar or gluten or lactose. I would keep eating those slowly throughout the day.

Good luck,
Nielk

 

[maryb]

Zuriel so sorry to hear how bad things are with eating for you. I know I went through a terrible phase of burning sensations in my throat/oesophagus but when I was tested by Dr Myhill I had the lowest acid levels of any they'd tested. I could never work that one out, about the same time I had a endoscopy by an ENT surgeon - is that the same, a camera down into my stomach, they found nothing, I had a heavy sedation which meant I was out of it and didn't feel a thing, was fine afterwards, I hope its the same for you. I can find you a link on anaesthetics for ME patients if it would help.
If your gullet is inflamed something like yoghurt, rice pudding might help depends on whether you are intolerant to dairy etc. The others suggestion of baby foods is good, I remember the chicken and vegetable puree was very mild. I remember only being able to tolerate very small amounts. I know even water produced a lot of burning pain too.
I also read that grated apple is good for stomach problems so I have that regularly.

 

[stevenski]

Zuriel, am partly there:

YOU HAVE TO HAVE A GASTROSOPE, AM AFRAID; BUT ASK FOR SEDATION; WILL BE OK

There is a range of oesaphageal conditions u may have; food sitting in the gullet sounds like a form of dysmotility(google it!): I have that

YOU may need manometry stage test and/or ph acid 24 hour manometry testing(google again!); not pleasant but doable

Again, google "dietarY supplements"; it will be a balance of getting (just) enough nutrition and ur allergies;

U need stomach emptying test(harmless!) if food sits in ur tummy(I dont have that symptom)

As everyone has said ask for urgent referral to gastroenterologist

I use a technique, which is referenced once on the net: I burp down stuck food with peppermint tea(very hot, so TINY sips), and sparkling water ; though the latter is reputed to CAUSE acid reflux?NERD?GERD, which u may have as well.But u need to get something down u

See a dietician but one who understands ur allergies and condition; so diagnosis is CRUCIAL first

Meantime your doc mIGHT choose to put you on a Proton Pump Inhibitor(PPI) or h2 antagonist if u have acid reflux(sounds like u have); ph manometry measures too little or too much acid; but google the test first; its the only one i couldnt tolerate.

PPIs are mEANT to prevent (further) inflammation of gullet.

Hope is of use

Stevenski

P.s i didnt crash after gastroscope and i have mod to severe m.e ; ask the nurse to hold ur hand I am afraid, to be helpfully brutal, the gastroscope is more important than whether u crash or not. Sorry

 

[WillowJ]

I agree that you should seek urgent care on the grounds that you are or may become malnourished or dehydrated. Make it emergency if your "piping" is not working correctly or if you notice water retention or edema (check every day: press your thumb into your flesh by your ankle; if the thumbprint stays you have edema--phone the doctor immediately and tell them you have edema [pronounced e-DEE-muh]), or if you develop an unusual fever, unusual confusion, unusual weakness, unusual flank pain, or if you become unusually sluggish.

Or if you have a crash that seems at all severe or at all different from normal (yeah, we're sick all the time, how to tell when we're in an emergency state of illness? but really try to pay attention to anything different)

I saw some safe baby food at REI (in little squeeze packets, with ingredient lists like: "organic apple, organic carrot, organic squash") while I was shopping for Vitalyte. I'd recommend using Vitalyte--oh, it's called something else Down Under, where's Tony... Hydralyte, that's it---Hydralyte or something like that for electrolytes (if sensitive to fructose, I think there is supposed to be one flavor without, although I couldn't find one here without). They do have "natural lemon flavor" and such which can be soy; I haven't yet phoned them to ask whether it is.

and whatever you can manage for food, but baby food does sound like a good option; all mushed up already. Use Turkey for the meat, very digestable, and if you seem to need some iron, then try whatever red meat sounds good

also try peppermint tea (I think that's been mentioned, too), applesauce, rice, papaya (has digestive enzymes), and banana

 

[WillowJ]

if you can tolerate dairy, add whey protein to whatever else you're eating for added nutritional value. you can also add coconut oil (yum).

 

[insearchof]

Hi Zuriel

I am sorry to hear about the problems you are having. I know they are distressing.

I hope you have sought an emergency consult and are on your way to having these issues resolved.

With an endoscopy, here are a few ideas to help you through it:

a. ask for a prior consult with the anaethitist. It is not usual, as they generally consult you just prior to the procedure. But insist on it -even if it is a telephone consult.

Tell him or her, of your sensitivies, general medical issues (ie particularly vascular, blood pressure and heart issues if you have them) and advise them that it is acknowledged that CFS, patients have general sensitivities to certain anesthetic products which they do not respond well too and make post op hard.

I know there is a new anesthetic product out there, that is meant to be far more suitable for PWCFS and their common issues.

b. Sometimes less is more. If you are sensitive to medications it might be worth discussing with him or her, the possibility of giving you less of a dose and bumping it up slightly if it looks like your coming up out of it.


c. assuming that there are no health issues that would rule the following out, ask him/her to provide you with saline prior to, during and after the proceedure. Helps enormously with recovery and avoiding post crash. If muscle pain is an issue for you and you dont have other health problems that would make this an issue, then he/she might include magnesium in the saline drip. If you can get them to do this for you, it will help a great deal.

Looking for hypoallergenic liquid supplement would be very difficult as I have insulin resistance, lactose malabsorption as well as gluten, soy, eggs and yeast intolerance.
Would appreciate any suggestion if you come across one.

I use "ISOWHEY Complete" by Pharama Foods.

It is a high quality Whey protein drink, with vitamins, minerals and co nutrients, which is suitable as a meal replacement, if you can take whey.

Apart from your insulin difficulties which I know nothing about, the following product is, I believe gluten, soy, egg and yeast free.

If you are not lactose sensitive or intolerant, you could have it in milk and thow in a bananna etc into a blender (but it is also fine without). If you cannot have milk, try almond or rice milk.

If you have further questions you can contact the company in Sydney Australia -if your interested PM and I will give you their contact no.

You can buy it from any pharmacy.


The other product that might assist you that I have found very good is the Australian product ''Vital Greens''.

It is classified a phyto nutrient superfood, with extracts of green vegtables, fruits, vitamins, minerals, certain antioxidants, immune support, nervous system support, alkaline veg protein, herbs for liver support, digestive nutrients and enzymes AND pro and prebiotics. It contains certified organic ingredients. There are over 70 ingredients in this product. You take it in water.

I believe it is free of the substances you are concerned about and one of the substances in the product is chromium that helps stablise blood sugars.

I and others, have found this product beneficial.

If you want a sample of the product or have other questions PM me and again, I will give you their phone no.

All the best.

 

[Francelle]

Zuriel, am partly there:

YOU HAVE TO HAVE A GASTROSOPE, AM AFRAID; BUT ASK FOR SEDATION; WILL BE OK

There is a range of oesaphageal conditions u may have; food sitting in the gullet sounds like a form of dysmotility(google it!): I have that

YOU may need manometry stage test and/or ph acid 24 hour manometry testing(google again!); not pleasant but doable

Again, google "dietarY supplements"; it will be a balance of getting (just) enough nutrition and ur allergies;

U need stomach emptying test(harmless!) if food sits in ur tummy(I dont have that symptom)

As everyone has said ask for urgent referral to gastroenterologist

See a dietician but one who understands ur allergies and condition; so diagnosis is CRUCIAL first

Meantime your doc mIGHT choose to put you on a Proton Pump Inhibitor(PPI) or h2 antagonist if u have acid reflux(sounds like u have); ph manometry measures too little or too much acid; but google the test first; its the only one i couldnt tolerate.

PPIs are mEANT to prevent (further) inflammation of gullet.

Hope is of use

Stevenski

P.s i didnt crash after gastroscope and i have mod to severe m.e ; ask the nurse to hold ur hand I am afraid, to be helpfully brutal, the gastroscope is more important than whether u crash or not. Sorry

I agree with Stevenski that as well as having a Gastroscopy you probably need oesophageal manometry and gastric emptying studies. GI dysmotility happens as a neurological adjunct in M.E.

You may want to look up Oesophageal paralysis/dysmotility and Gastroparesis and see if anything fits your symptoms.

 

[ukxmrv]

I'm sorry that you are starving. This is serious. My problem was that my stomach acid was too low and not too high in the end. Even water just sat and swished around in my stomach. I lived on raw salads of few ingredients for a long time so know how awful it can be.

Sadly, not many Gastro experts I met recognised the slow stomach emptying and low acid found in ME patients.

 

[Zuriel]

Thank you very much to all who responded with very helpful infomation and heaps of encouragement.

I was rudely awaken in the night (after I posted on the forum), feeling as if there was a fire down the oesophagus and the stomach. I took peppermint tea followed by Gaviscon, which gave me a bit of relief.
Dr Myhill commented that lack of stomach acid (hypochlorhydria) is prevalent in CFS and FM patients. My CFS doctor thinks otherwise; that I suffer from excessive stomach acid secretion. Thank God, I have been
able to tolerate a few more spoonful of food these past 2 days, though it takes a long time to empty into the intestine. I think the Gaviscon helps, hopefully until I see the gastroenterologist. Still craving for more food
at every meal. At one stage my blood sugar dipped to 3.4mmol/l.

Insearchof- Can't take whey as I'm lactose intolerant. My mom purchased a 120gm bottle of Vital Greens from Chemist Warehouse this evening. Shall take it tomorrow before breakfast. Thanks for your suggestion.

Once again, many thanks to all of you for your input.

 

[ukxmrv]

Zuriel,

Not sure if this would help at all. Rich VKB (who does post to this forum) used to talk about a test for low stomach acid. Something along the lines of taking baking soda and then waiting for a burp. Please don't try this unless someone posts the real instructions AND you feel up to doing something like this.

Hope you get some help soon.

 

[Sushi]

Zuriel,
Not sure if this would help at all. Rich VKB (who does post to this forum) used to talk about a test for low stomach acid. Something along the lines of taking baking soda and then waiting for a burp. Please don't try this unless someone posts the real instructions AND you feel up to doing something like this.
Hope you get some help soon.

Zuriel,

Here is a copy of that post from Rich where he mentions the baking soda/burp test. Appologies to Rich (richvank) for reposting (but he usually doesn't mind! )


"Paradoxically, many cases of GERD are caused by low stomach acid production, rather than too much stomach acid. The idea is that if the stomach acid production is low, the signal doesn't get sent to move the food into the duodenum when it's time to do that, so it goes back into the esophagus. Also, digestion is poor, because the signal is not sent to bring in the digestive juices from the pancreas to the duodenum when it's time for that.

Stomach acid production is often low in CFS. I think the reason is that it takes a lot of ATP to operate the ion pumps that bring the hydrogen ions into the stomach, against a big concentration gradient. ATP production in the parietal cells of the stomach, which produce the acid, is hindered in CFS because of mitochondrial dysfunction, initially caused by glutathione depletion, in my hypothesis.

If you want to test to see if your stomach acid is low, you can try this simple test at home: On an empty stomach, such as first thing in the morning, drink an 8-ounce glass of water into which you have mixed one-quarter teaspoon of baking soda (sodium bicarbonate). Using a clock or watch, measure how long it is before you burp. If you have enough stomach acid, you should burp within two minutes. If you haven't burped within 5 minutes, you can stop timing.

As you know, betaine-HCl is a remedy for low stomach acid, and can be helpful until the glutathione level is corrected, which I believe will eventually happen on the methylation cycle block treatment, and stomach acid production is restored. I can't give individual treatment advice unless a licensed physician is involved, so I recommend that you check with your doctor before using betaine-HCl. Also, if you are trying the methylation cycle block treatment, the betaine may speed up what Dr. Amy Yasko calls the short-cut pathway in the methylation cycle, through betaine hydroxymethyltransferase (BHMT), too much, so this can require a compromise.

Conventional doctors tend to prescribe proton pump inhibitor drugs in cases of GERD without actually testing to see what the stomach acid level is. This will relieve the symptoms of GERD, but it doesn't help the problems with the overall digestive system, and can actually make them worse. It's better to test first to see what the situation is. There are more sophisticated tests (which also cost more and must be done by a doctor) such as the Heidelberg capsule test. There are also string-type devices that you swallow and pull back out after a while, which change color depending on the pH.
"

 

[ixchelkali]

I'm sorry you're having such problems; it must be very distressing.

When I've had problems with slow stomach emptying, magnesium seems to help. 1/4 teaspoon epsom salts gives you 100 mg of magnesium (and you shouldn't take more than 400mg in a day or it can give you diarrhea), and you can dissolve it in water to help you swallow. If you can't take it orally, you can soak in an epsom salts bath and some will be absorbed through the skin.

I can't suggest any supplements, but the baby food sounds like a good suggestion. I had ulcers when I was a kid (nearly 50 years ago) and that's what they fed me then.

When I had an endoscopy & colonoscopy it wasn't too bad. I asked for as much pain relief as they could give because of the fibromyalgia, which had to be balanced against the problem of my low blood pressure. I slept through the whole thing. I had a few days' crash just from the exersion of getting to the doctor's, etc, but it wasn't as bad as I expected. The colon cleansing prep was the worst part, and it was mostly just unpleasant. I hope yours goes as easily and that you can get some relief soon.

 

[Zuriel]

Did the low stomach acid test

Thanks, Sushi, for posting the stomach acid/ burp test instruction which I carried out this morning. It took me more than 5 mins to burp. So, I really do have low stomach acid though my doctor thought otherwise and prescribed 2 huge bottles of antacids. This only help to stop the reflux as my stomach still has trouble digesting (taking digestive enzymes) and emptying after only a few bites of food. Thankfully, my bottle of betaine hydrochloride should arrive tomorrow. My faecal analysis conducted a year and a half ago, showed extremely high level of Candida and I wonder if this could be causing the low stomach acid. I had a course of antibiotics/ probiotics 8 months ago. The doctor is unwilling to order further tests to check if the level of candida has since decreased.

This condition plus food malabsorption is putting my energy level at an all time low. Specialist treatment availability isn't as easy and efficient for someone like me who cannot afford private insurance and is dependent on the dole. The Vital Greens nutritional supplement should see me through the next couple of weeks.

Francelle-- Shall bring up the possibility of gastroparesis when I see the gastroenterologist, although I have nausea but no excessive belching or vomitting.

Thank you all for your response.

 

[kurt]

Thanks, Sushi, for posting the stomach acid/ burp test instruction which I carried out this morning. It took me more than 5 mins to burp. So, I really do have low stomach acid though my doctor thought otherwise and prescribed 2 huge bottles of antacids. This only help to stop the reflux as my stomach still has trouble digesting (taking digestive enzymes) and emptying after only a few bites of food. Thankfully, my bottle of betaine hydrochloride should arrive tomorrow. My faecal analysis conducted a year and a half ago, showed extremely high level of Candida and I wonder if this could be causing the low stomach acid. I had a course of antibiotics/ probiotics 8 months ago. The doctor is unwilling to order further tests to check if the level of candida has since decreased.

This condition plus food malabsorption is putting my energy level at an all time low. Specialist treatment availability isn't as easy and efficient for someone like me who cannot afford private insurance and is dependent on the dole. The Vital Greens nutritional supplement should see me through the next couple of weeks.

Francelle-- Shall bring up the possibility of gastroparesis when I see the gastroenterologist, although I have nausea but no excessive belching or vomitting.

Thank you all for your response.

Zuriel, I have had almost exactly what you describe, it was a terrible few weeks. I did find some help online that worked, including a self-test for HCL like Rich described, and more, but that was many years ago and I don't recall the links, sorry. Here is what I remember, I figured out that I had a combination of low stomach acid production and also some damage to the stomach and esophageal linings, and also problems with the Cardiac Sphincter valve (connects the esophagus and stomach), probably due to inflammation and being burned by stomach acid reflux. Don't know if you have all these, but this required that I be propped up during sleep or stay on my left side (puts stomach lower than esophagas in most people, a few have irregular stomach shapes and actually must stay on right side). Also I had to stay at least partly upright after eating, and take beta HCL with everything I ate. And the dose had to match the amount of food, I took parts of HCL tablets and would add one or two quarter tablets until the HCL level was high enough the food moved out of the stomach. But due to the damaged stomach lining this could be a little painful, and I had to be very careful to eat mild foods and not to take too much HCL, just the right amount to get the next valve to open (the Iliac Sphincter). My diet was reduced during this time to just two or three foods, I managed to tolerate soy tofu (probably that saved my life, the protein), some unsweetened apple sauce, a few other things. After a few weeks I was able to eat more foods, and gradually the stomach lining healed. Basically, the stomach has to have enough acid to trigger the iliac and move the food through quickly, otherwise the low level of acid just sits there for hours and will damage the stomach lining. Then you can become terribly intolerant of foods that are hard to digest (which is everything fresh). The Cardiac Sphincter took a long time to heal, but eventually it also started working again, I stopped getting acid reflux from everything.

Another food recommend I followed was nothing fresh during that time, cooked fruits and vegetables were easier to digest, mild foods, mild carbs. Maybe try drinking some soy or rice milk (you can make at home). For carbs, Brown Rice milk has all the aminos we require, it is a wonderful survival food.

Taking beta-HCL was very important for solving this in my case, I'm glad I was not fighting a doctor over this issue (had a Functional Medicine MD, a type of Integrative Med, he agreed with HCL), hope you find the right answers in your case.

Incidentally, the healing was fairly complete, after a few years I did not have to take HCl anymore with meals and do fine with digestion and absorption. But I do make sure I have plenty of chloride ions for making HCl (sea salt and mag. chloride).

 

[richvank]

Hi, Zuriel.

I think that you've received some good advice here, and it sounds as though you do have low stomach acid, which is common in ME/CFS, as Dr. Myhill wrote, and causes other problems in the digestive system. Slow gastric emptying was found in CFS in an Australian study a few years ago, and as I wrote in the piece that Sushi posted, and as Kurt described, I think this is due to low stomach acid resulting in failure to open the pyloric sphincter after the food has been sufficiently mixed and processed in the stomach.

Hopefully the betaine-HCl will be helpful for you. If the lining of your stomach (mucosa) needs to be repaired, a couple of things that have been helpful to others are aloe vera gel or deglycyrrhizinated licorice (DGL). The reason for using the DGL licorice is so that it won't affect the cortisol level (though some people with ME/CFS who have low cortisol have actually used ordinary licorice root extract in order to raise their cortisol).

The cause and effect relationship between low stomach acid and Candida is more likely in the opposite direction from what you suggested. One of the normal functions of stomach acid is to kill yeasts and bacteria that come in with the food. When the stomach acid level goes low, the gut loses this protection from the top end.

It's unfortunate that physicians tend to prescribe proton pump inhibitors when there is acid reflux, without determining what the actual stomach acid situation is. I think they have been indoctrinated by the pharmaceutical representatives, whose companies make a lot of money from these drugs. This may sound cynical, but the use of these drugs probably helps the sales of other drugs that are prescribed later in response to the range of problems that develop as a result of shutting down the stomach acid production. There are lots of them!

Best regards,

Rich

 

[Sushi]

Thanks, Sushi, for posting the stomach acid/ burp test instruction which I carried out this morning. It took me more than 5 mins to burp. So, I really do have low stomach acid though my doctor thought otherwise and prescribed 2 huge bottles of antacids. This only help to stop the reflux as my stomach still has trouble digesting (taking digestive enzymes) and emptying after only a few bites of food. Thankfully, my bottle of betaine hydrochloride should arrive tomorrow. My faecal analysis conducted a year and a half ago, showed extremely high level of Candida and I wonder if this could be causing the low stomach acid. I had a course of antibiotics/ probiotics 8 months ago. The doctor is unwilling to order further tests to check if the level of candida has since decreased.

Francelle-- Shall bring up the possibility of gastroparesis when I see the gastroenterologist, although I have nausea but no excessive belching or vomitting.

Thank you all for your response.

Hi Zuriel,

I also have low stomach acid and take Betaine HCL. There could be problem with taking too much betaine though (it could affect methylation function). If you find that you need to take a lot of Betaine HCL with each meal, you might want to look for just HCL. It is harder to find but Nutricology makes it as a liquid and, in the States anyway, it is not too expensive.

Candida does best in a low acid gut--perhaps one of the reasons many of us have a problem with it.

Another trick a friend found helpful for similiar symptoms (probably gastroparesis) was taking psyllium after each meal which sort of gets things moving through the gut without being a laxative.

Many if not most of us have hidden things going on in our guts (infections, viruses, leaky gut, bacterial imbalances) and this contributes to the problems. I hope your gastroenterologist is openminded! as most are not trained to look for the kind of gut problems we have. I've recently had thorough gut analyses and am now treating infections, malabsorption and imbalances there.

Best wishes,
Sushi

 

[ukxmrv]

Good luck Zuriel, with the Betaine HCL. It's really helped members of my family (and me), some of whom have been admitted to hospital, dx'ed with high stomach acid after little testing and then made worse with the drugs prescibed.

I was lucky enough to see a UK NHS Gstro who was open minded about this. It's so hit and miss.