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

[DDK]

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?

I don't believe in any of the anti-wheat/gluten propaganda, I have only seen benefits from white flour. However, I have seen tremendous damage in myself and others from whole grains. Yes, gluten remains in white flour, but you said anti-nutrients in your first post; most of those substances lie in the bran.

Yes, I do fine with both potatoes and white flour. I have eaten just potatoes as my only starch as well as white flour, I tolerate both fine; at the moment I am eating both. White flour however is more versatile (Bread, Pancakes, Pasta, Pizza, Cookies, Cake Donuts, Brownies, Waffles, etc...) I make all of this homemade with good ingredients BTW.

 

[BearWithMe]

I don't believe in any of the anti-wheat/gluten propaganda, I have only seen benefits from white flour. However, I have seen tremendous damage in myself and others from whole grains. Yes, gluten remains in white flour, but you said anti-nutrients in your first post; most of those substances lie in the bran.
....

I was a huge beliver in this "whole grain is always healthier" dogma most of my life. But the more I read and the more I experiment with various forms of various foods, the more I tend to agree with you. I don't know if gluten is unhealthy or not, but I do think antinutrients is much bigger problem. At least for me.

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. ... 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.

I also think there are multiple problems/issues contributing to my poor digestion and that gut microbioma plays huge role in this. Also, the progressive worsening of my issue would support the possitive feedback loop theory. Then prokinetic drugs might be the good way to break the vicious cycle I think? Unfortunately, I react poorly to probiotics and never seen any benefits from them.
Trough precise fine-tuning of my food choices and timing, I was able to get up to 1600-1700 kcal a day, sometimes more. But it was at the cost of incredible nausea and pain every single day. And I feel that very soon, I wouldn't be able to eat even that. I'm 6.5 feet tall man.
Unfortunatelly, goat's milk is prohibitively expensive in the area where I live.

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
....

So many great tips. Thank you very much! What do you think was the single most effective thing that helped you to heal? What made the most difference? Congratulations btw!

 

[EIRE24]

I don't believe in any of the anti-wheat/gluten propaganda, I have only seen benefits from white flour. However, I have seen tremendous damage in myself and others from whole grains. Yes, gluten remains in white flour, but you said anti-nutrients in your first post; most of those substances lie in the bran.

Yes, I do fine with both potatoes and white flour. I have eaten just potatoes as my only starch as well as white flour, I tolerate both fine; at the moment I am eating both. White flour however is more versatile (Bread, Pancakes, Pasta, Pizza, Cookies, Cake Donuts, Brownies, Waffles, etc...) I make all of this homemade with good ingredients BTW.

Do you use the unenriched white flour?

 

[DDK]

Do you use the unenriched white flour?

Yes, I use King Arthur Organic AP Flour, Hodgson Mill AP Flour, Whole Foods 365 Organic AP Flour, Bob's Red Mill Organic AP Flour and Simple Truth Organic AP Flour. All of these are unenriched, unbleached, and unbromated.

 

[EIRE24]

Yes, I use King Arthur Organic AP Flour, Hodgson Mill AP Flour, Whole Foods 365 Organic AP Flour, Bob's Red Mill Organic AP Flour and Simple Truth Organic AP Flour. All of these are unenriched, unbleached, and unbromated.

Nice. I must try and find some unenriched flour, I think it could be a decent source of calories with little to no problem digesting.

 

[BearWithMe]

...
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
...

Now this might be the most important post of the whole thread. For the last two years, I'm getting very strange pains in the very upper abdomen, exactly in the solar plexus area. It is pain unlike any other pain I have ever expirienced. It is VERY different from the usual "digestive" pains or stomach pains.

This pain gets triggered by eating (not always, though), by abdominal muscle contractions (moving heavy stuff, shouting loudly, getting up from the bed, laughing, and after "number two" - always) and from stretching (bending over, trying to reach for something placed really high, laing on the back - always).

When I have this pain, my digestion is ALWAYS the worst.

Do I have nerve damage?

Was this the pain you were refering to, @X3CyO?

 

[EIRE24]

Now this might be the most important post of the whole thread. For the last two years, I'm getting very strange pains in the very upper abdomen, exactly in the solar plexus area. It is pain unlike any other pain I have ever expirienced. It is VERY different from the usual "digestive" pains or stomach pains.

This pain gets triggered by eating (not always, though), by abdominal muscle contractions (moving heavy stuff, shouting loudly, getting up from the bed, laughing, and after "number two" - always) and from stretching (bending over, trying to reach for something placed really high, laing on the back - always).

When I have this pain, my digestion is ALWAYS the worst.

Do I have nerve damage?

Was this the pain you were refering to, @X3CyO?

I get a similar thing and a tight feeling around my throat acconpanies it.

 

[Constatine]

I also think there are multiple problems/issues contributing to my poor digestion and that gut microbioma plays huge role in this. Also, the progressive worsening of my issue would support the possitive feedback loop theory. Then prokinetic drugs might be the good way to break the vicious cycle I think? Unfortunately, I react poorly to probiotics and never seen any benefits from them.
Trough precise fine-tuning of my food choices and timing, I was able to get up to 1600-1700 kcal a day, sometimes more. But it was at the cost of incredible nausea and pain every single day. And I feel that very soon, I wouldn't be able to eat even that. I'm 6.5 feet tall man.
Unfortunatelly, goat's milk is prohibitively expensive in the area where I live.

Yes the gut microbiome is the original cause of the issue and a huge factor but it is not separate from malnutrition as malnutrition greatly alters the intestinal immune system and hence microbiome regulation. But obviously you need to improve your gut function somewhat before you can start eating again. Have you tried turmeric for this purpose? It seems to improve the intestinal barrier function while modulating intestinal flora. It also doubles intestinal alkaline phosphate which is very important for intestinal detoxification.

 

[Blossom]

I'm not trying to promote drugs but cyproheptadine (1 mg with meals) was a game changer for me while healing from celiac disease and malnutrition. From what I've read the gut can take up to four years to completely heal and I must say in my case that was true. It progressively improved but took years for me to feel like I had rock solid digestion with no problems. Even to this day if I under-eat for a few days due to long shifts at work things start to revert back to experiencing nausea, bloating and discomfort again though I can get back on track fairly easily.
Famotidine can help with particularly difficult reflux and zofran with nausea. Perhaps you have a doctor you could speak with about some of these meds if you're interested. The whole idea is to use them as temporary tools to help you consistently get adequate nourishment.
This is just my experience. I wish you the best - it's a hard thing to have to deal with for years on end. Ultimately though food you can tolerate is going to be your best medicine.

 

[Remedy]

This is almost certainly mercury toxicity. Look into the Cutler Protocol:

Adult Stories
Cutler protocol - OnibasuWiki
Index to posts by Andy Cutler

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.

Particularly, this -- all the symptoms coming on at the same time, NAC especially provoking it -- sounds like issues with thiols, of which NAC is a straight source, that are typical in the mercury toxic:

Explanation of some symptoms, and the days long recovery:

Re: cysteine/sulfur, low immunity, allergies, ALA

If you are sensitive you go through about a 4 day to 1 week cycle EACH
TIME you eat the stuff - so you'll never figure it out if you don't
stay off them for a week before making ONE trial of something.

You typically get a couple of hours of feeling good, energized, happy,
and then libidinous, then you feel tired, draggy and depressed, which
goes on for a day to a week. Of course if you are eating sulfur foods
at each meal these all get stacked up and you can never figure out
what is happening.

Explanation of why all the symptoms increase together. The symptoms, in addition to being those of high thiols, are also the general symptoms of mercury toxicity -- brain fog, tiredness, urination, sleep problems, anxiety and so forth -- aggravated by the thiols. Also note that high thiols cause immune overreaction, and might play a role in the mucus:

Yahoo! Groups

People with too many thiols running around stir up their heavy metal
burdens and are in essence more poisoned than they have to be given
the amount of metal present.

High thiols also activate the allergic part of the immune system.

Read more about thiols here:

Cysteine status - OnibasuWiki
Index to posts by Andy Cutler

 

[Remedy]

Also, I should add that I suspect the way mercury is causing a lot of your issues is by causing yeast overgrowth, which it does by inducing immune problems. Yeast issues are my worst symptom, and I couldn't even begin to catalogue the endless bizarre effects I've experienced from them -- all your digestive pains and sensations are well within what I know is possible.

 

[BearWithMe]

Median arcuate ligament syndrome

"The median arcuate ligament syndrome (...) is a condition characterized by abdominal pain attributed to compression of the celiac artery and possibly the celiac ganglia by the median arcuate ligament. (...) Patients with MALS reportedly experience abdominal pain, particularly in the epigastrium, which may be associated with eating and which may result in anorexia and weight loss.The pain can be in the left or right side, but usually where the ribs meet. Other signs are persistent nausea, lassitude (especially after a heavy meal) and exercise intolerance. Diarrhea is a common symptom, some experience constipation. While some experience vomiting, not everyone does. Exercise or certain postures can aggravate the symptoms."

The Celiac ganglion (artery) compression syndrome (CGCS)

"(...)The typical patient is a young girl or woman with slender constitution and deep hollow back. The lordosis can be estimated by the attempt to push the hand between the patient’s back and the examination couch. Many afflicted patients have no contact to the bed with their central parts of the lumbar spine while lying supine.(...)So morphometric data of the vertebral column support the clinical observation that tall, slender adolescent girls with lax ligaments and weak rump muscles are at the highest risk to develop lordosis related vascular compression syndromes, celiac artery (ganglion) compression syndrome(...)Many patients complain of a variety of vegetative symptoms that emanate from the ganglion. These are dizziness, vertigo, anorexia, (near)-fainting, diarrheal bouts, gastric fullness soon after starting to eat, nausea, shortness of breath [32]. In animal experiments even eclamptic seizures could be produced by irritating the CG [41]. Difficulties in breathing are often confused with exertional asthma, since many patients complain about shortness of breath in sport activities."

Beside the fact I'm not a girl, this description fits me 100%. I was treated for asthma since I was 4, and I have already mentioned my spinal abnormalities in this thread. Wow. I feel like all the puzzle pieces are now falling into place.

Thank you a million, Thoushant !!!!!!!!

 

[Richiebogie]

Hi @JanP. Is stretching the best treatment for MALS and CGCS?

Thanks @DDK. I find my foot rashes and chest pain go away when I avoid wheat. They come back when I eat bread. This doesn't happen with potatoes or fruit. I haven't tried making my own bread from organic unenriched flour however!

 

[DDK]

Hi @JanP. Is stretching the best treatment for MALS and CGCS?

Thanks @DDK. I find my foot rashes and chest pain go away when I avoid wheat. They come back when I eat bread. This doesn't happen with potatoes or fruit. I haven't tried making my own bread from organic unenriched flour however!

I certainly wasn't trying to push wheat on you or anyone, if bread bothers you then you shouldn't eat it. A diet of potatoes, vegetables and fruits is probably a good diet for a lot of people. However, the issues you are having with bread may be from the yeast in the bread and not the wheat itself. And that's assuming that you are talking about good quality white bread like a French or Italian loaf and not Wonder Bread. I have seen people eat wonder bread and tell me that they can't eat wheat or react badly to wheat, it's the 30 ingredients in wonder bread that cause the issues not the wheat; heck of the 30 ingredients in wonder bread, refined white flour is the least harmful. And for these people I have instructed them to make homemade white bread with unenriched, refined white flour, yeast, salt and water. Most of them tolerated it fine and were amazed, only a couple people I know didn't tolerate the homemade bread well, but it was because of the yeast. I instead had them make homemade pancakes with the flour or homemade pound cake (butter, sugar, eggs, white flour) and then those people, who didn't tolerate the bread, tolerated wheat fine.

 

[InChristAlone]

That's a tough place to be for so long. I'm sorry for your suffering. Can you recall any events before this all started? Any trauma? Parents divorce? Moved? Surgery? Any history of abuse?

I agree with the suggestion of cyproheptadine, it helped me a lot too. Not necessarily with speed of digestion but it is an appetite stimulant. Ice cream was essential for me when I couldn't eat enough.

 

[SOMO]

Try vinegar with meals.

Also have you tried a gentle laxative like magnesium citrate/oxide?

I would also try 4 tablespoons of raw potato starch (Bob's Red Mill.)
The high starch (it has to be 4 tablespoons) produces butyrate which helps with digestive contractions as well as relaxes the intestine. Potato Starch is extremely cheap and found in all grocery stores, so I'd pick up a bag next time.

 

[Thoushant]

Now this might be the most important post of the whole thread. For the last two years, I'm getting very strange pains in the very upper abdomen, exactly in the solar plexus area. It is pain unlike any other pain I have ever expirienced. It is VERY different from the usual "digestive" pains or stomach pains.

This pain gets triggered by eating (not always, though), by abdominal muscle contractions (moving heavy stuff, shouting loudly, getting up from the bed, laughing, and after "number two" - always) and from stretching (bending over, trying to reach for something placed really high, laing on the back - always).

When I have this pain, my digestion is ALWAYS the worst.

Do I have nerve damage?

Was this the pain you were refering to, @X3CyO?

Dang dude, actually this reminds me of a chiropractor I follow on youtube. He has a lot of patients with hiatal hernia: the stomach creeps the diaphraghm through a hole meant for the oesophagus.
houston chiropractic hiatal hernia - YouTube
Try to see the pain level and symptoms, lots of patients.
for example

Median arcuate ligament syndrome


The Celiac ganglion (artery) compression syndrome (CGCS)


Beside the fact I'm not a girl, this description fits me 100%. I was treated for asthma since I was 4, and I have already mentioned my spinal abnormalities in this thread. Wow. I feel like all the puzzle pieces are now falling into place.

Thank you a million, Thoushant !!!!!!!!

Wow, great find! I doubt surgery is the only option as the articles suggests.
I'm really happy it applies, hope you find relief soon.
I'm now curious how your posture is, besides the scoliosis.
slender adolescent girls with lax ligaments and weak rump muscles are at the highest risk to develop lordosis related vascular compression syndromes

So in essence you should work your butt. :p Said jokingly, but really weak glutes makes you lordosis worse to compensate.

If you have flared ribs it indicates that your diaphrahm is tense(and compressing the artery), you are in "inhale". In my experience, exhale was hard, because I had a lot of sadness to come through, which I felt when my "ZOA" was good. If you search most books on emotion-mind-body connection, they say digestive issues is "keep holding on to emotional issues" or something to that manner. But I think a chiropractor can do some good work too, in case you get it confirmed!

 

[BearWithMe]

That's a tough place to be for so long. I'm sorry for your suffering. Can you recall any events before this all started? Any trauma? Parents divorce? Moved? Surgery? Any history of abuse?

I agree with the suggestion of cyproheptadine, it helped me a lot too. Not necessarily with speed of digestion but it is an appetite stimulant. Ice cream was essential for me when I couldn't eat enough.

Thank you for your kind words, Janelle!

My whole childhood and adolescence was one big and constant emotional pain. Due to poor family relationships, I have witnessed a lot of abuse and violence. It is true that when my health issues started, some pretty unusual stuff happened, even for my standards.

I have always tought it was a coincidence.

I love food, I love eating and I would eat all the time if I could! I would say my appetite is well above average. Even more appetite would probably kill me

...
Also have you tried a gentle laxative like magnesium citrate/oxide?
...

High quality magnesium supplement is staple in my supplements regimen and it is helping a ton!

 

[Regina]

Hey welcome,

first paragraph makes me think of the pyloric valve.


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

That's cool.

 

[BearWithMe]

Today I have realized that all the foods that's making me nauseous are very "sticky", and all the foods I can tolerate are are not sticky at all.

There is very clear correlation between the food's "stickyness" and my digestive issues after eating it.

Even different forms of the same food can make night and day difference - I can tolerate wheat pasta (which is not very sticky), but I can't tolerate pure wheat porridge (which is very sticky). Drinking water after something like thick wheat porridge is absolute disaster for my digestion.

The same goes for rice - I can't handle regular rice, but the "glass" rice noodles are fine.

It seems it is more the form and mechanical properities of the food that is triggering my nausea, not the food itself.