Unexplainable Major Digestive Issues - Can't Properly Eat For 15 Years And Its Getting Worse

[BearWithMe]

Please, help me.

It started when I was 13. Suddenly, I felt strong pressure in stomach, feeling of fullnes and nausea even after relatively small portions of light meals, and every food that I eated stayed in my stomach for hours and hours - like I had almost no motility at all.

It was getting progresively worse. I could handle smaller and smaller portions and there were more and more foods I was unable to handle at all, and now, 15 years later, I can eat just extremely restricted diet in portions that barely keeps me from dying.

In most recent days, it seems I can't eat even that.

Together with the digestive issues, also some other health issues started to bother me - I'm getting very excessive mucus in my throat (every doctor that looks in my throat is shocked by the amount of mucus I have there), I'm extremely tired and fatigued with some brain fog, have some sinus/hearing issues, excessive urination and consequent dehydration, sleep problems, and recently, I also have some anxiety issues.

These symptoms seems to be connected - when one get worse, all the others gets worse too - at the same time.

I spent countless days in various hospitals, I was checked by countless doctors and according to them, I'm perfectly healthy.

I'm getting massive flare-ups of my symptoms after some supplements, especially N-Acetyl Cysteine (and everything else that raises glutathione), high doses of vitamin B12, N-Acetyl Glucosamine, high doses of vitamin D, Nicotamine riboside, biotin... And I think also probiotics. The symptoms starts circa 24 hours after administration and can last for days after the supplement is discontinued. Methylfolate, zinc, boron, calcium lactate and calcium d-glucarate (only these particular forms) and some other supplements are giving me extreme insomnia.

This forum was incredibly helpful for me in past years. If you can help me decipher my symptoms, I would be grateful for the rest of my life.

 

[Thoushant]

Hey welcome,

first paragraph makes me think of the pyloric valve.


MALFUNCTIONING PYLORIC & ILEOCECAL VALVES - AND HOW TO FIX THEM - Allergies & Your Gut

 

[X3CyO]

Please, help me.

It started when I was 13. Suddenly, I felt strong pressure in stomach, feeling of fullnes and nausea even after relatively small portions of light meals, and every food that I eated stayed in my stomach for hours and hours - like I had almost no motility at all.

It was getting progresively worse. I could handle smaller and smaller portions and there were more and more foods I was unable to handle at all, and now, 15 years later, I can eat just extremely restricted diet in portions that barely keeps me from dying.

In most recent days, it seems I can't eat even that.

Together with the digestive issues, also some other health issues started to bother me - I'm getting very excessive mucus in my throat (every doctor that looks in my throat is shocked by the amount of mucus I have there), I'm extremely tired and fatigued with some brain fog, have some sinus/hearing issues, excessive urination and consequent dehydration, sleep problems, and recently, I also have some anxiety issues.

These symptoms seems to be connected - when one get worse, all the others gets worse too - at the same time.

I spent countless days in various hospitals, I was checked by countless doctors and according to them, I'm perfectly healthy.

I'm getting massive flare-ups of my symptoms after some supplements, especially N-Acetyl Cysteine (and everything else that raises glutathione), high doses of vitamin B12, N-Acetyl Glucosamine, high doses of vitamin D, Nicotamine riboside, biotin... And I think also probiotics. The symptoms starts circa 24 hours after administration and can last for days after the supplement is discontinued. Methylfolate, zinc, boron, calcium lactate and calcium d-glucarate (only these particular forms) and some other supplements are giving me extreme insomnia.

This forum was incredibly helpful for me in past years. If you can help me decipher my symptoms, I would be grateful for the rest of my life.

Does coffee work for you?
What do you usually eat?
Do liquids also cause this full feeling? Or milk?

What have you tried so far?
Fasting/Juice fasting? Psyllium?

Do you have any pain?

 

[BearWithMe]

Hi Thoushant, many thanks for your response and for a nice welcome!

Actually, I have a problem with bile backflow to my stomach (this is always the only abnormal thing in my gastroscopy results).

Just have tried the procedure, but my super-sensitive belly makes this really hard to do. I will try again later today.

The symptoms described on the page are spot on. Tinnitus, sinus problems, thirst... They even mention allergies, ashtma and migraines - I have this problems all my life, as far as I can remember.

However, the page doesn't explain very well what causes the malfunction and most importantly, how to permanently fix the underlying issue behind it. I'm already doing most of the things recommended on the page and still, my problem is worse and worse every year.

They describe the valve problems as inflammation of the valve. Why everything anti-inflammatory makes my symptoms much worse? They mention "An improper nerve supply" as one of the contributing factors, why everything neuroprotective and neuro-stimulating makes my symptoms worse?

They mention anxiety as one of the contributing factors. Could the supplements mentioned in my first post cause or worsen the anxiety?

I think this exact problem runs in my family, my mother and my grandmother have very similar symptoms, just not as bad as mine.

 

[BearWithMe]

Very interesting post X3CyO, thank you!

Does coffee work for you?

I have not drinked coffee for a few years, but I don't think it was very effective, just a small energy bump after huge dose and not much other possitive effects.

What do you usually eat?
Do liquids also cause this full feeling? Or milk?

My food is based mostly on fruits with whey protein and a bit of coconut oil right now. Liquids are MUCH MUCH MUCH worse, than solids. Actualy the drier food, the better. I'm dissolving my whey protein in as little water as possible. Even drinking pure water causes a lot of nausea.

What have you tried so far? Fasting/Juice fasting? Psyllium?

I'm scared to starve myself more, than I am. My BMI is 13.4 rigt now. Psyllium is huge no-no for me, everything with a lot of fiber makes my digestion much worse. I'm always picking foods with the smallest fiber content possible. I have tried high fiber diet and it doesn't work for me.

Do you have any pain?

Beside the stomach pain and ocasional headaches, nothing significant I think. Doctors always tells me that my spine is (inherently) abnormal - scoliosis and few other problems - but I don't feel any pain from it.

 

[DDK]

You need to find a simple source of easily digestible carbohydrate + protein. Get off of the fruit and whey, both can be very hard on your gut, as well as coconut oil. I know lots of people (even including Ray) who have serious GI reactions to coconut oil, it can be incredibly allergenic. Raw fruit fiber/acids can really irritate stomach as well. Find an easily digested, non-irritating form of carbohydrate (potatoes, white rice, white flour products - white bread, white flour pancakes, white pasta, saltine crackers, etc...) then find an easy digested source of animal protein (soft boiled/poached eggs, boiled or steamed fish filet, boiled chicken breast, etc...) Just find an easily digested starch to get about 200-300 grams carbs, and try to get about 100 grams protein from easily digested sources. Have maybe one serving of well cooked veggies, boiled/steamed until they are mush (broccoli or green beans) Have a small amount of butter or olive oil, like 1 tbsp with your meals. Maybe have a glass or two of fruit juice with meals if tolerated.

I personally tolerate white flour better than rice and potatoes, so when my digestion was bad I had white bread (French or Italian) with meat, maybe 1 potato and a serving of veggies. Point is you should be able to find a starch you can tolerate, then have some animal protein with that. If you tolerate milk or cheese you could have that instead of meat with white bread or rice or potatoes.

Also, I found certain candy like Skittles, Jelly beans, Tootsie rolls, Milk Chocolate were very easy for me to digest when I had similar issues that you seem to be having. However, gummy candy like gummy bears/worms or taffy, was a disaster for me, it sat in my stomach for days. And Dark Chocolate destroyed my gut, unlike the milk chocolate which was very easy on me.

It also sounds like you are malnourished and in need of compact calories. Vanilla Ice Cream, Milk chocolate, Angel Food Cake and Pound Cake are probably the best things to try that seem to be easy to digest and provide compact calories, without the liquid that you were concerned with.

 

[X3CyO]

Do you get like a sandpaper feeling when eating fiber?

I think its just coming down to stomach lining damage; that leads to the bacterial issues, and the liquids issues, and then the histamine. I think it could be pyloric valve issues resulting because of all that.

Have you tried taurine?
What about aspirin conditioning?
Do you also get acid reflux?

I think the hardest, but most important would be figuring out where exactly the specific issue is rooted in. Its obviously causing a systemic problem though which makes that hard to find by yourself...


I'm guessing Potatoes and rice also cause issues. If not I would move towards them since starches are mostly absorbed quite quickly. I would completely avoid resistant starch though until things are fixed. Same with milk.

I would avoid milk since it can cause flare-ups in histamine in the damaged gut... Mucus all that.

 

[lampofred]

I feel for you man it's torture

Have you tried potato juice as a source of nutrition? It's supposed to be the easiest on digestion.

 

[Ideonaut]

Maybe you need to find out who's sticking pins in your voodoo doll and make them quit!

 

[orangeUglad]

It sounds to me you may have a parasitic infection. I would highly recommend trying a parasite cleanse.

 

[Richiebogie]

Perhaps stop all supplements and just eat plain food.

Choose one of bananas, dates, orange juice, boiled potatoes etc for energy.

Let your stomach digest that before trying some meat. Eg. 50g chicken liver is quite tasty, maybe because it has nutrients I need in a readily assimilable form. I eat that raw but I'm sure you could fry it lightly if you are squeamish. You could also try tuna on another occasion!

Avoid seeds, nuts, grains, peas & beans unless they are properly fermented. They contain a myriad of anti-nutrients!

 

[Thoushant]

happy to help

However, the page doesn't explain very well what causes the malfunction and most importantly, how to permanently fix the underlying issue behind it. I'm already doing most of the things recommended on the page and still, my problem is worse and worse every year.

They describe the valve problems as inflammation of the valve. Why everything anti-inflammatory makes my symptoms much worse? They mention "An improper nerve supply" as one of the contributing factors, why everything neuroprotective and neuro-stimulating makes my symptoms worse?

They mention anxiety as one of the contributing factors. Could the supplements mentioned in my first post cause or worsen the anxiety?

I think this exact problem runs in my family, my mother and my grandmother have very similar symptoms, just not as bad as mine.

So for now, I can not say wether it's block or opening of the sphinchter causing problems.
The fullness feelings goes with block, and bile back flow with opening.
My understanding is it's autonomically controlled by parasympathetic from N. vagus to induce relaxation and stomach contraction->emptying. While sympathetic causes contraction of the sphlinchter. This is generelized, and some articles go into much greater detail, with peptides and receptor talk. (The vagal control of the pyloric motor function: a physiological and immunohistochemical study in cat and man. - PubMed - NCBI some clues to medications, you might be able to find RP approved alternatives, or insight to what supplements could be doing)
Sympathetic is from the Celiac Ganglia, which recieves and transmit input from the splanchnic nerves

-Derail from general RP consensus-
The celiac ganglia is just below the diaphragm connection to the spine(wiki). The splanchnic nerves involved comes from the thoracic segment.
The first YT clip mentions diaphrametic breathing. from the ganglia perspective, I can see how small mechanical tension here can irritiate the ganglia.
This video, just observe the general feel of where the "air" or pressure should go in a breathing.

I think thoracic immobility can exaggerate the contraction, if it's irritiating the ANS there.


it's intersting you mention the anxiety from the medication, I can not say if "personal" anxiety or "drug induced" is the same. From my personal experience, I sometimes feel guilty of being relaxed, so I can induce anxiety states, superpowers yeah..
Some members here speak fondly of "polyvagal theory" which relates ANS to social and emotional wellbeing, might be worth to look into, coupled with some form of emotional therapy.
You generally copy family in breathing patterns, movement patterns, so something that way could "transmit", else could be some emotional issue similair to what they might be going through.

Lastly: You might be surprised to find out how long emotions can become stuck,
Just yesterday I realized one of the biggest emotional luggages I'm carrying is from 17 years ago. It's just something I didn't come around to explore well yet. But if it's such a long time ago, I bet whatever it might be, you will have gained so much experience and feeling of control in that area, that it might be as simple as acknowledging it's there, and then laugh for a bit, at how odd you are carrying something you were unaware of, and something insignificant for you now , that you anyways have been dealing with and managing. Alternatively it will make you realise what your life goals are. Takes some reflection I think.

Vagal maneuver - Wikipedia
These maneuver, could try to see if it improves the feeling of fullness when it arises.
+ red heat lamp to sphinchter area a bit after eating might relax it. or lower back, where diapghragm meets the spine could help in breathing pattern.

 

[BearWithMe]

Wow. So many great responses. Thank you all!!

Do you get like a sandpaper feeling when eating fiber?

I'm shocked how spot-on your questions are. Yes, I definitely have sandpaper feeling (I have always called it "porcupine in the stomach" feeling, but I guess you are refering to the same thing). I also have this feeling after drinking pure water, but this may be due to bulking of the fiber I ate before.

Do you have similar problems yourself, X3CyO?

Have you tried taurine?

Yes! I love taurine. I'm supplementing tons of it. Taurine and bromelain are the only things that can relive my symptoms, at least to some extent.

What about aspirin conditioning?

Never heard of it, but the concept seems really interesting! Do you think it is a good idea, with my hypersensitive stomach lining?

Do you also get acid reflux?

I would say silent reflux. It doesn't burn, but I have the other symptoms of it.

I'm guessing Potatoes and rice also cause issues. If not I would move towards them since starches are mostly absorbed quite quickly. I would completely avoid resistant starch though until things are fixed. Same with milk.
I would avoid milk since it can cause flare-ups in histamine in the damaged gut... Mucus all that.

Potatoes and rice causes a lot of issues for me, but you are absolutely right with the resistant starches. I will replace the whey with easily digestible meats and try to find new carbohydrate source, along the lines of DDK's post. I will try corn and white flour products first.

 

[BearWithMe]

...
Choose one of bananas, dates, orange juice, boiled potatoes etc for energy.
...
Avoid seeds, nuts, grains, peas & beans unless they are properly fermented. They contain a myriad of anti-nutrients!

Bananas are incredibly gentle to my stomach. I love dates, but they have too much fiber for me. You are right about the antinutrients, there seems to be correlation between antinutrient content and severity of my reaction to the food. But it is really hard to get enough simple, easily-digestible carbs when avoiding grains. Does corn have a lot of antinutrients?

I feel for you man it's torture
Have you tried potato juice as a source of nutrition? It's supposed to be the easiest on digestion.

Many thanks! This means a lot to me! Have tried potatoes, but never tought of juicing them. Will look into that!

Maybe you need to find out who's sticking pins in your voodoo doll and make them quit!

Haha, will ask my friends and family if someone have voodoo doll of mine :)))

You need to find a simple source of easily digestible carbohydrate + protein.....

Awesome post with lot of great recommendations. Thank you, DDK!

 

[Richiebogie]

Hi @JanP

Corn may be a problem. This page suggests eliminating all grains and various other common problem foods. If you feel great after a month then you can test reintroducing the foods 1 at a time:

https://chriskresser.com/aip-for-ibd-the-paleo-autoimmune-protocol-and-inflammatory-bowel-disease/

 

[DDK]

Bananas are incredibly gentle to my stomach. I love dates, but they have too much fiber for me. You are right about the antinutrients, there seems to be correlation between antinutrient content and severity of my reaction to the food. But it is really hard to get enough simple, easily-digestible carbs when avoiding grains. Does corn have a lot of antinutrients?

Refined grains such as white rice and white flour do not have any antinutrients, they are removed in the refining process. So what richie is saying about grains is only true of whole grains, which is why I recommended refined white rice/white flour.

 

[DDK]

Do you get like a sandpaper feeling when eating fiber?

I would avoid milk since it can cause flare-ups in histamine in the damaged gut... Mucus all that.

Yes, milk does increase mucus formation in the stomach/intestines, and when you have a dry, inflamed, "sandpaper" like intestinal lining, this extra mucus is precisely what is needed in order to help your stomach/intestinal lining heal.

 

[X3CyO]

Yes, milk does increase mucus formation in the stomach/intestines, and when you have a dry, inflamed, "sandpaper" like intestinal lining, this extra mucus is precisely what is needed in order to help your stomach/intestinal lining heal.

I agree that milk is a great tool in reestablishing gut flora and that mucus itself is good for healing, but as someone whos gone through this same issue, milk leads to major issues including brain fog, and increased intracranial pressure which delays the ability to figure out exactly whats going on.

And gut pain. Lots of gut pain from liquids.

I think as soon as his stomach is healed he should go straight to milk or my other reccomendations, but until then its better to hold off.

Wow. So many great responses. Thank you all!!


I'm shocked how spot-on your questions are. Yes, I definitely have sandpaper feeling (I have always called it "porcupine in the stomach" feeling, but I guess you are refering to the same thing). I also have this feeling after drinking pure water, but this may be due to bulking of the fiber I ate before.

Do you have similar problems yourself, X3CyO?


Yes! I love taurine. I'm supplementing tons of it. Taurine and bromelain are the only things that can relive my symptoms, at least to some extent.


Never heard of it, but the concept seems really interesting! Do you think it is a good idea, with my hypersensitive stomach lining?


I would say silent reflux. It doesn't burn, but I have the other symptoms of it.


Potatoes and rice causes a lot of issues for me, but you are absolutely right with the resistant starches. I will replace the whey with easily digestible meats and try to find new carbohydrate source, along the lines of DDK's post. I will try corn and white flour products first.

Id use aspirin dissolved in bakingsoda (you can find the recipe somewhere on the forum) to help determine where the problem area is; id just use a very very small amount. Baby aspirin amount.


What worked for me is coffee and tobacco, and kind of what youre doing. I didnt use whey though, and stayed away from grains and essentially followed peat without milk and starch. I subscribe to the idea of keeping the intestine as clear as possible in this regards and these are two great personal stimulators of peristalsis.

Id use coffee if thats fine with you. Tobacco is a more fine tuned thing, but helps with getting in touch with your gut. That and it stinulates my appetite.

Orange juice is a great tool with all its vitamin c glory in pushing things along as well. Especially with taurine.
I eventually worked up to using a really sweet mix of two redbulls and oj concentrate, but that might not work for you. Then to pressurecooked/heavily boiled and mashed potatoes, then added in more liquids slowly.

Since liquid is an issue, try out eating OJ frozen concentrate alongside some of your safe foods. If thats an issue, then id assume the problem is in the upper part of the gut, but use the aspirin to be certain.

 

[Richiebogie]

Refined grains such as white rice and white flour do not have any antinutrients, they are removed in the refining process. So what richie is saying about grains is only true of whole grains, which is why I recommended refined white rice/white flour.

Hi DDK, Gluten remains in white flour.

This may cause issues whether you are celiac or not...

Here you can read about the evil Lord Zonulin:

Leaky Gut Syndrome - Is Gluten at the Root? | Gluten-Free Society

DDK, have you tried replacing white flour with potatoes for a few weeks?

 

[Constatine]

How many calories do you manage a day? Malnutrition damages the intestinal barrier causing lps and bacteria to leak into the bloodstream which creates a hypermetabolic state as seen in sepsis which further leads to malnutrition. You cannot heal while in such a nutritional and caloric deficit. Have you read this thread: "When A Turk's Bowels Move Less Than Three Times A Day, He Consults A Physician." . Due to a lack of motility the food you are eating is putrefying in your intestines which is progressively worsening the composition of your intestinal flora which is leading to more damage, leakiness, and lack of motility (positive feedback loop). I think unpasteurized goat milk can help with an emphasis on unpasteurized (the pasteurization process rids the milk of many beneficial components). Its more easily digestible than cows milk and any unpasteurized milk will have very beneficial effects on gut flora. Also perhaps try a fresh carrot in between each meal and see how you react to that. Cascara sagrada is another obvious one to try.