How can I heal my gut when it overreacts to every substance?

[bedman]

I feel like Im trapped: Every medical substance I swallow causes severe neurological symtoms just some seconds later. This also happens when I take harmless things like zinc or fish oil which are supposed to calm down the gut. Probiotics or kefir makes things worse big time: My toilet paper is full of blood when I try them and the feeling of inflammation gets worse. A stool test confirmed that I have an inflammation in the gut.

After all Ive read this could be leaky gut? But leaky gut sufferers dont often seem to have such strong reactions? When my CFS started my gut didnt feel that bad, it worsened only after trying probiotics and other natural stuff. Nevertheless my feeling is that my gut problems are an important factor in my disease.

But how can I heal my gut when even the softest substances cause severe neurological symptoms that dont go away afterwards? Even for leaky gut you have to be able to take glutamine and so on. No MD seems to understand this problem. My CFS specialist wants me to try Ivig but since I overreact to everything and get so much worse everytime Im scared.

 

[Waverunner]

I feel like Im trapped: Every medical substance I swallow causes severe neurological symtoms just some seconds later. This also happens when I take harmless things like zinc or fish oil which are supposed to calm down the gut. Probiotics or kefir makes things worse big time: My toilet paper is full of blood when I try them and the feeling of inflammation gets worse. A stool test confirmed that I have an inflammation in the gut.

After all Ive read this could be leaky gut? But leaky gut sufferers dont often seem to have such strong reactions? When my CFS started my gut didnt feel that bad, it worsened only after trying probiotics and other natural stuff. Nevertheless my feeling is that my gut problems are an important factor in my disease.

But how can I heal my gut when even the softest substances cause severe neurological symptoms that dont go away afterwards? Even for leaky gut you have to be able to take glutamine and so on. No MD seems to understand this problem. My CFS specialist wants me to try Ivig but since I overreact to everything and get so much worse everytime Im scared.

In my eyes there is not solution to this but here are some things that help to some degree:

- Reduce stress as good as possible. As soon as the stress level declines to some degree your digestion will get better and you will tolerate more things.
- Stay away from all supplements/foods that make things worse. You know best what your body tolerates and what not. Some people might tell you that you suffer from leaky gut or gluten intolerance but in the end these are all shots into the blue. It can be true of course and you should test for it, maybe live gluten free for some months but the prevalence of gluten intolerance is highly exaggerated in my eyes. Do a test for fructose malapsorption and if positive stay away from fructose.
- Stay away from high amounts of sugar, alcohol, milk, fructose and everything where you feel that you get constant bad reactions.
- Stay away from everything that slows down gut motility because the longer the contact the higher the chance for intolerances
- Eat different foods including maybe pizza which is not as bad as you might think. There are studies that links pizza consumption to a reduced risk of certain cancers including colon cancer (I don't tolerate cheese, tomatoes etc. as single food but when these things are munched together I somehow tolerate them)
- Do not restrict your diet too much. In the end you will be down to a few foods you seem to tolerate but things will only go worse from here because you will get intolerances even to these foods. Moreover you are likely to suffer from malnutrition then because your diet lacks certain vitamins/minerals.
- Take a multi-vitamin/mineral once a week or as often as you think you profit from it but stay away from all supplement things that make things worse for you and don't take the multi-vitamin/mineral too often
- Take a probiotic every now and then but only if you found a brand that helps you

As far as I'm concerned the whole problem can be described as:

highly sensitive body caused by viral infection/autoimmune disease --> taking supplements/certain medication/certain foods --> intolerance reactions by the body --> stress which contributes to intolerances --> stronger intolerance reactions --> more stress etc.

In the end supplements and all other stuff didn't work for me (including hydroxy B12, folinic acid, Vitamin D, Gc-MAF, Fishoil other vitamins/minerals etc.). Even the best antioxidants didn't work and only made things worse. Antibiotics however often helped during the first days. Maybe a low carb diet, antihistamines etc. could be of help for you. Enzymes made things only worse for me by the way.

 

[svetoslav80]

My last water fast (8 days) did miracles with my inflamed gullet, guess it will help with inflamed gut as well. But after I finished it I started eating trash again and the problems reappeared, so don't do like me I recommend you do a 5 day water fast first(yes , that's fast only on water and nothing else). Then, please don't overeat after so long fasting because you can die, but feed yourself gradually, only with fruit juices on the first day. Then, at least 15 days, only eat things that don't irritate the gut, like boiled potatoes and rice. No salt at all. I also put a spoon of cold extracted olive oil in the potatoes cause it has antiinflammatory properties, but don't use any refined oils. I now also eat eggs and milk, but I don't know how they'll affect your gut, so be careful. I hope you recover.

 

[heapsreal]

sacchromycce bouldarri is a supplement that can help with gut inflammation and help with gut infections as well. I suggest give it a google and can get it from iherb well priced. cheers!!

 

[xchocoholic]

Blood is never a good sign and needs to be evaulated.

I can relate to how you feel. When I came down with celiac disease in 2005, everything I ate
felt like glass going into my digestive tract. Supplements would get caught in my esophagus
. Capsules would explode and the contents would come out my nose and mouth.

I ended up eating only bland easy to digest foods like boiled chicken, peas, asparagus,
peeled apples and pears. You can blend these up like baby food if needed.

Papaya, mango and pineapple contain natural digestive enzymes. You
can roast the papaya seeds and grate them into your foods. Or eat them raw.

I also used a few rice protein nutritional drinks but only the
Metagenics ultra one didn't make me feel worse.
Helios organic dairy kefir helped too.

After about 6 months, I was able to introduce more foods. That was 6 years ago and the only
time, I've had problems like that again was when I got h pylori. I eat
an all natural paleo diet / limited meat now but there's plenty to chose
from.

On the gluten intolerance, this is very real. All you need to do is google this to see just how
prevalent this is. Or you could go the the gf section of any store and ask those who are gf what impact
it's made on their lives. Of course not everyone will notice a difference.
I have celiac freinds who can eat gluten without feeling anything but
the damage is still happening. It's easier to notice symptoms once
most of your symptoms are gone too.

The fda is apparenlty owned by big pharma and other large corporations so we can't count on them to protect us. We celiacs can't even get them to SET standards for gluten in the "gf" foods. They're last
action here was to poll the public on how much gluten they thought was safe. Really ? ?

Tc .. X

 

[aprilk1869]

In the UK there was a documentary about incompetent doctors. When a patient has IBS-type symptoms and bleeding the GP is supposed to have the patient tested for bowel cancer. Only a small percentage end up being diagnosed however it's very important to rule it out. Have you ever had a colonoscopy? I don't want to alarm you but I think it's important to check these things out and not just assume it's leaky gut etc.

 

[xrunner]

I feel like Im trapped: Every medical substance I swallow causes severe neurological symtoms just some seconds later.

If that's quick, the cause isn't the gut itself but the immune system over-reacting (via the autonomic nervous system) to something it doesn't like, you're sensitive to. Sometimes it just takes one thing e.g. toxins, some food, smells, etc. to over-sensitise the whole system but it may be more than one.
Taking supps won't help, it may worsen things, until you find out what is causing the system to overreact and get rid of it or desensitise with relevant treatment.
After that the system should calm down and enable you to move forward.
That's my experience.

 

[Insomniac]

I eat chicken soup made only of chicken, pumpkin, courgette (squash?in US) and salt. No chemicals, nothing else. It's easy to digest and calms my stomach...alright I hate the taste but I have no choice.
After digesting that for a few days and letting the stomach calm down I start to introduce pure almond milk with no chemicals.
Then I introduce whatever else I can tolerate. I am on a very narrow range of foods but I have no choice as all my bowel and blood tests have come out healthy. The only test I haven't done is the sitzer marker test for colonic inertia but I am very dubious of the low variety of treatments for that. So I haven't bothered to do the test.
I'm too tired anyway.

I strongly recommend that you try chicken soup made out of boiled chicken, courgette and pumpkin. It's already been proven to have antiinflammatory effects and has been used for centuries for sick people.
Also blood on toilet paper is not IBS and must be investigated for Cancer or Chrohns.
You MUST go to a doctor for tests if you have not already done so. They usually take blood seriously.

It's good you are offered IVIG. I have similare nasty bowel symptoms and bad reactions that you have. I do not have blood on toilet paper because my diet is so limited now. I would do anything to get IVIG, but no doc will give it to me.
IVIG is administered in a hospital or clinic setting so there is someone there if there is a bad reaction.

 

[Waverunner]

I eat chicken soup made only of chicken, pumpkin, courgette (squash?in US) and salt. No chemicals, nothing else. It's easy to digest and calms my stomach...alright I hate the taste but I have no choice.
It's good you are offered IVIG. I have similare nasty bowel symptoms and bad reactions that you have. I do not have blood on toilet paper because my diet is so limited now. I would do anything to get IVIG, but no doc will give it to me.
IVIG is administered in a hospital or clinic setting so there is someone there if there is a bad reaction.

Your diet definitively is healthier than rice and chicken only for example so even if it tastes bad it still has some positive effects besides allergen avoidance. I would really like to know if people with ME/CFS and gut issues get some good improvement from IVIG.

 

[scottyaust]

Bowel Repair Program

Hi Bedman,

It is not an easy fix and I agree with xchocoholic & aprilk1869 blood is not a good sign and must be investigated for bowel cancer! Gluten intolerance is very real and as one specialist explained it to me I was not celiac BUT "Pre Celiac" meaning that I have an intolerance to it and by having gluten in my diet I am introducing a toxin into my bowel damaging the gut lining leading to leaky gut.

Have you had a complete stool DNA test done? as this will pick up Pathogenic Bacteria, Yeast/Fungi and sometimes parasites. I'm in Australia but the lab for this is Metametrix in the USA.

Now I am talking from experience here I was gluten free from when I first got sick 1999 and my inflammation markers were low in the range. 2008 while in Hospital to look for underlying infections my health program was turned 180 degrees by 4 Professors of Medicine that were (are) obtuse to ME/CFS . Their expert advice was there was no need for me to be on a gluten free diet and lead a normal life and then they advised my Mother that I have somatoform disorder. After 1 year of pushing myself following their program my inflammation markers were CRP 56, ESR 15. There plan was a fast track to a wooden box!! If I took the wrong probiotic I would be in agonising pain as some of the bad bacteria can feed off some strains of probiotics. 8 years of hard work belittled, 1 year to destroy all my gains and now 2 year program to repair the damage I hope.

Results of my DNA stool test: High Helicobacter pylori (Ulcers), High E.H.E. Coli, High Yeast and positive to an unknown Parasite. After treating the first two with antibiotics and 5 months of Nystatin with a diet eliminating all grains and sugars my blood inflammation markers were CRP 43, ESR 13.

Bowel/Liver Repair Program: After completing the repair program my CRP was 8 and ESR was 7 back into range at least. I used to do this program (a short version 21 days) once per year to keep the Candida in check. Don't expect overnight results it takes time to repair the gut. My program was 8 months last year finishing with 3 weeks bowel & 3 weeks liver repair. I am not having bad reactions to the probiotics now and I will be repeating the repair program for the full 12 weeks starting soon.

Attached is the repair program developed by a Naturopath using Metagenics UltraClear Maintain for gut and UltraClear plus for liver. Page 4 is a list of low reactive foods; try to use the ones in italics for as long as possible. "This is an old program but I found it help me so why change something that works". The only things I do change is the first 3 days I will fast using UltraClear Maintain 5 serves spread out over the day (This was in a earlier version of this program). From day 4 to 7 I have vegetable juice (Carrot, Beetroot, Ginger, cloves of Garlic and a desert spoon of physillium husks) "I start every day with this" I put one scoop of Metagenics Glutagenics 2 times per day while on program added to my juice or the UltraClear Maintain that I continue at 2 serves per day for the rest of the program. Prior to the 3 day fasting I will do a bowel purge 2 teaspoons of Epson salts in juice or water and let nature take its course.

After the repair programs then bring in probiotics and supplements slowly so any reactions can be traced back to offending ones. I agree with heapsreal sacchromycce bouldarri would be one to try.

I hope this information is useful to you regards Scott

 

[bedman]

Great answers. Ive read them all for the third time now.
Im doing a stool analysis for alpa1-antitrypsin, calprotectin and so on now. l also started to read John Paganos book on leaky gut and see what his diet will do. Unfortunately he doesnt agree with your recommendation for pizza...

What seems to help a bit is whole grain bread, maybe because of the fiber. Before I had banned bread from my menu for lowcarb but maybe this was a mistake. So celiac doesnt seem to be my problem I guess. Pineapple also seems to help, so thank you for this advice. Also linseed with joghurt feels good while fried food seems to make things worse.

The only point i disagree is the need of a colonscopy. If i cant even take simple supps I dont want to risk a narcosis. I think the blood comes propably from my anal fissure, not something like cancer (famous last words...)

 

[merylg]

Hi bedman,

Please take the bleeding seriously. My father thought he had haemorrhoids, which he did...but they also found on colonoscopy that he had bowel cancer as well. He had 18" of large bowel removed.

Because of my family history, when I saw a Gastroenterologist about ?stomach ulcer issues he recommended a colonoscopy be done at same time as gastroscopy. All under a light general anaesthetic.

He found I had a stomach ulcer caused by aspirin. Biopsy for Helicobacter was negative & Coeliac negative.
Referred me to an Immunologist to work out multiple food allergies & sensitivities.

He also found & removed a rectal polyp, which turned out to be benign.
Two follow up colonoscopies were clear.

A recent colonoscopy turned up another polyp which showed dysplastic changes. This meant that the next follow-up colonoscopy will be in two years time, intead of five. He also found some diverticular disease.

So you see they take it very seriously!!! and so do I. Bowel cancer is very common & gastroscopies & colonoscopies are routine.

 

[xchocoholic]

Just an fyi .. Gluten filled breads were my go to foods for 50 years until I developed full blown
celiac disease. And I have the dq2 gene for celiac disease. I think it's because it calmed
the acid too but it could've been the opiod cinnection too. I had ataxia, brain zaps, distorted vision, etc that disappeared
after going gf. Once things reach this point, it's not always possible to reverse the damage.

Current testing for gluten intolerance isn't the best way to find out if you have it. And some
Doctors, see theglutenfile, are saying we shouldn't be eating gluten. Paleo minded professionals are saying we shouldn't be eating
any grains.

Tc .. X

 

[LHCTom]

Just a thought based on my experience. I had awful GI problems and was sensitive to almost every food, especially with sugars or starch. I also had developed a bunch of allergy symptoms after spending my whole life without an allergy. It included hives reactions to foods, drugs and supplements. Asthma and constant sinusitis. I go diagnosed with IBS but I felt their must be an underlying cause. After much reading I found many intestinal parasites cause all these symptoms and more. Doctors like to do single stool tests but being about 25% sensitive, they almost always come back with a negative even if false. So I insisted on a trial of the anti-parasitic Flagyl and after 7 days all my symptoms were gone. Then they came back as many parasites are resistant to Flagyl since its the most drug used in the world for this. After my second Flagyl attempt, I found a lab that does a DNA/PCR stool test and they found Blastocystis Hominis. Its often considered none pathogenic but in the last 5 years the world wide research says its often a nasty pathogen and tough to get rid of. I did 30 days of Alinia and my symptoms resolved again. My GI symptoms and sensitivity to foods and hives have been gone for months. I re-ran the DNA test and its still there. The important point here is intestinal parasites are much more common than doctors would have you believe with about 30% of IBS cases actually caused by one never found. If you are suffering with GI problems, make absolutely sure you do not have a parasite. I did and suppressing it had miraculous results. Now I'm hoping it doesn't grow back and the DNA was left over from before and I had a false positive test. If not, 'll keep going after it.

 

[xchocoholic]

Good point about parasites ..

I also just learned that some parasite tests don't pick these up. I had 2 stool tests for these in the last 3
years that can back negative but I had the metamatrix
Dna test recently and it picked two. One human and one non human. We're not sure how
long they've been there.

I also tested positive for h pylori so My doc treated me with clarithromycin and metronidazole. The h pylori treatment appears to have worked, no more stomach pain, so my doc prescribed one chewable
Mebendazole for the parasites.

The treatment for h pylori was rough. Nausea for hours everyday and frequent loose stools.
Treatment for parasites just made me exhausted.
I have to retest soon to make sure we got them.

I "think" I caught the h pylori and paradites in sept and now after treating for those, I don't have any more energy than I did prior to getting these. My fatigue problems appear to be from oi and pem.

My labs also showed high gluten antibodies tho even tho I'm on the paleo diet so that's out for me ..
I intentionally ate a "gf" treat for this test too see if I was still re-acting.
Duh ..

Tc .. X

 

[Timaca]

Manuka honey might help. Do some internet searches and PUBMED searches on Manuka honey and Manuka honey and GI tract and you'll find some interesting stuff.

Best, Timaca

 

[leela]

Hey could you point me to the DNA/PCR test for parasites? What lab does it?

ETA: Oh Wait, I think I found it: Metametrics...

 

[slayadragon]

One thing that's been shown in the literature is that trichothocenes (poisonous made by some species of toxic mold, including Stachybotrys) cause intestinal permeability. See the articles below.

Even if these toxins are inhaled, they will end up in the gut (as the body tries to eliminate them).

Best, Lisa

*


Sergent T, Parys M, Garsou S, Pussemier L, Schneider YJ, Larondelle Y. Deoxynivalenol transport across human intestinal Caco-2 cells and its effects on cellular metabolism at realistic intestinal concentrations. Toxicol Lett. 2006 Jul 1;164(2):167-76. PMID: 16442754.

Li M, Cuff CF, Pestka JJ. T-2 toxin impairment of enteric reovirus clearance in the mouse associated with suppressed immunoglobulin and IFN-gamma responses. Toxicol Appl Pharmacol. 2006 Aug 1;214(3):318-25. PMID: 16504231

Kouadio JH, Dano SD, Moukha S, Mobio TA, Creppy EE. Effects of combinations of Fusarium mycotoxins on the inhibition of macromolecular synthesis, malondialdehyde levels, DNA methylation and fragmentation, and viability in Caco-2 cells. Toxicon. 2007 Mar 1;49(3):306-17. PMID: 17109910.

Moon Y, Yang H, Lee SH. Modulation of early growth response gene 1 and interleukin-8 expression by ribotoxin deoxynivalenol (vomitoxin) via ERK1/2 in human epithelial intestine 407 cells. Biochem Biophys Res Commun. 2007 Oct 19;362(2):256-62. PMID: 17707346

Van De Walle J, Romier B, Larondelle Y, Schneider YJ. Influence of deoxynivalenol on NF-kappaB activation and IL-8 secretion in human intestinal Caco-2 cells. Toxicol Lett. 2008 Apr 1;177(3):205-14. PMID: 18343055

Moon Y, Yang H, Park SH. Hypo-responsiveness of interleukin-8 production in human embryonic epithelial intestine 407 cells independent of NF-kappaB pathway: new lessons from endotoxin and ribotoxic deoxynivalenol. Toxicol Appl Pharmacol. 2008 Aug 15;231(1):94-102. PMID: 18485432

Yang H, Park SH, Choi HJ, Moon Y. Epithelial cell survival by activating transcription factor 3 (ATF3) in response to chemical ribosome-inactivating stress. Biochem Pharmacol. 2009 Mar 15;77(6):1105-15. PMID: 19101521

 

[Forebearance]

I hope you will feel better soon, bedman. I would be nervous about getting an IV, too, if I were you.

Hey, xchocoholic, I have an FYI for you!
Did you know that if you have a DQ of 2, then that also means that you have a mold-susceptible haplotype? There are only two HLA-DR haplotypes with a DQ2, and they are both mold-susceptible.

Forebearance

 

[Freddd]

I feel like Im trapped: Every medical substance I swallow causes severe neurological symtoms just some seconds later. This also happens when I take harmless things like zinc or fish oil which are supposed to calm down the gut. Probiotics or kefir makes things worse big time: My toilet paper is full of blood when I try them and the feeling of inflammation gets worse. A stool test confirmed that I have an inflammation in the gut.

After all Ive read this could be leaky gut? But leaky gut sufferers dont often seem to have such strong reactions? When my CFS started my gut didnt feel that bad, it worsened only after trying probiotics and other natural stuff. Nevertheless my feeling is that my gut problems are an important factor in my disease.

But how can I heal my gut when even the softest substances cause severe neurological symptoms that dont go away afterwards? Even for leaky gut you have to be able to take glutamine and so on. No MD seems to understand this problem. My CFS specialist wants me to try Ivig but since I overreact to everything and get so much worse everytime Im scared.

HI Bedman,

Your extreme hyper sensitivity is characteristic of mb12/methylfolate deficiencies. Perhaps some sublingual crumbs of both mb12 and Metafolin could get you started slowly and maybe give your stomach a chance to heal itself a bit. There are some mix with drink multi vitamin and mineral supplements that you could start with.