My Stomach mystery

[Hindi1989]

Hi all,

I've been trying to solve my stomach issue for some time with no success. I just don't seem to pin point the root cause of it despite many tries with various supplements and drugs.

So, in brief, I don't seem to have the usual stomach issues, like bloating, gas, diarrhea/constipation, pain etc. Rather, its mostly my body reacting to whatever I eat which results in significant increase in global pain perception, fatigue, and most devastatingly, brain fog (includes low mood). It usually begins 20-40 mins after I've eating something and it doesn't seem to matter what or how much I've eaten. If it was the case of excessive blood rushing to my stomach, my symptoms should be less if i eat a small portion but it doesn't seem to be. If it's allergic reaction/mcas, then how do i explain the delay in symptoms (20-40 mins after and not within minutes). I've tried gut healing supplements like glutamine and others but to no avail. I've tried gluten free, sugar free etc. types of diet but nothing significant or noticeable. I've tried anti fungals like nystatin and others on short term but no improvements and likewise on various types of antibiotics. I've also tried increasing stomach acid though betaine hcl but no improvements

I am most functional early in the morning (not eaten anything) i would say 6/10 in my cfs score but after any food, I go down to 4/10 and I am totally useless. I usually come back up to 5/10 after several hours but never to the extent that i am in the morning.

So what's going on?

 

[Grigor]

I have problems with food and meds that start about 20 to 40 minutes. Could be because of the stomic acid. As it's histamin 2 driven. My sigmoid colon always starts cramping and producing gas around 40 minutes. Get hot flashes and stomach that burns.

 

[Wishful]

When my ME started, it seemed to be a type IV delayed food sensitivity. If I ate something not so highly processed that it lacked allergens, I'd get the symptoms you describe 48 hrs later. It was a highly precise and consistent 48 hr delay, +/ a few minutes. My temperature started rising abruptly at that time too, typically a few degrees C, but as high as 1 C on occasion. The symptoms would then taper off, IIRC within an hour or so.

It certainly matched what I read about type IV sensitivity, except that when I switched to a rotation diet, I avoided the flare-ups, but when I ate the wrong thing, my delay had abruptly switched to a precise and consistent 17.5 hrs, which didn't fit anything I'd read for type IV sensitivity. Later, I ate some fresh cherries, which gave me a very severe flare-up of symptoms, and my delay abruptly switched to 23 hrs, 35 minutes or so. A few days later, I developed food poisoning from some canned coconut milk, and the delayed sensitivity was completely gone. It took me years to realize that, because I still experienced the same flare-up of the same symptoms 20 minutes after eating something. I eventually figured out that the flare-ups were due to quickly-digested carbs, which I think increased insulin and thus tryptophan transport into my brain, which in turn caused the symptoms (probably thorough kynurenines).

My experience is that yes, we can have delayed flare-ups of our ME symptoms via several mechanisms, likely including some I haven't experienced myself. If you're experiencing a fairly long delay (many hours) and the delay is precise and consistent, it's likely involving your immune system (t-cells for long delay, not sure about IG reactions). My 20 minute delayed reaction was limited to quickly digested carbs (sugar, refined starch), and it was blocked (or delayed and spread out) if I took BCAAs with it, which points to tryptophan transport. I also experienced, for some number of months, an increase in symptom severity after eating fatty foods. I forget the delay for that, but it was hours or 'the next day'. That was blocked by taking L-acetyl-carnitine with the meal. After some months of that, the problem went away. I think the problem was specifically with palmitic acid, but I'm not 100% sure.

I suggest experimenting a bit more to see if there are differences in severity and delay with refined carbs vs slow-to-digest carbs. If yes, you could see if BCAAs block it. If you react to proteins and other foods as well, I suggest trying a rotation diet (avoiding each family of foods for 5+ days). For me, that prevented the flare-ups, though I still had baseline ME symptoms, even though I didn't know about ME at that time. If it seems worse with fatty foods, you could see if BCAAs help.

I am not going to recommend spoiled coconut milk as a treatment. The 'flushing out' part is unpleasant and messy, and one success story doesn't prove it to be a reliable treatment. However, if I had that type IV sensitivity and knew that food poisoning would cure it, I'd definitely do it. My guess is that I had some microorganism in my gut that was triggering my immune system and wasn't completely removed by antibiotics or antifungals, and the drastic flushing out removed enough that the good microbes could finally win the war against it. What I ate how soon afterwards may have been a critical factor in supplying the good microbes with what they needed, or maybe how soon I went to sleep afterwards, or whether I inhaled some new bacteria that made it to my gut. Too many possible variables.

Maybe you'll feel more hopeful if you consider me as someone who had a very similar problem (or maybe several similar problems) and who did manage to stumble across effective treatments and cures. Keep careful records of what you eat when, and how your symptoms change during the day. Recording activities helps too, since they might be affecting things. I used my thermometer frequently to verify that it was rising with my other symptoms.

If you have more questions about my specific experiences, ask here or via PM.

 

[BeADocToGoTo1]

Have you checked what your blood sugar is doing? A simple glucose meter can give you the impact of a meal for your body. Well worth checking. What are you eating and drinking? Have you kept a food diary for a while and note how you feel and whether there are correlations? Have you kept track of body composition (e.g. with a scale that can indicate weight, body fat %, body water %, muscle mass, metabolic age, bone mass, visceral fat, and basal metabolic rate)? Have you tracked calorie intake versus your personal requirement? How many grams of carbs do you eat and drink per day and per meal? How many grams of protein?

Have you done any of the following recently?

Fasting blood sugar tests: e.g. HbA1c, triglycerides, c-peptide, insulin, ketones, glucose

 

[Hindi1989]

Have you checked what your blood sugar is doing? A simple glucose meter can give you the impact of a meal for your body. Well worth checking. What are you eating and drinking? Have you kept a food diary for a while and note how you feel and whether there are correlations? Have you kept track of body composition (e.g. with a scale that can indicate weight, body fat %, body water %, muscle mass, metabolic age, bone mass, visceral fat, and basal metabolic rate)? Have you tracked calorie intake versus your personal requirement? How many grams of carbs do you eat and drink per day and per meal? How many grams of protein?

Have you done any of the following recently?

Fasting blood sugar tests: e.g. HbA1c, triglycerides, c-peptide, insulin, ketones, glucose

I've done such tests and it's all normal. I do keep a general diary but due to brain fog is hard to focus and put energy in being more thorough.

 

[Wishful]

I do keep a general diary but due to brain fog is hard to focus and put energy in being more thorough.

Dealing with ME would be so much easier if we were healthy...

 

[BeADocToGoTo1]

I've done such tests and it's all normal. I do keep a general diary but due to brain fog is hard to focus and put energy in being more thorough.

Sorry you are struggling. Have you been checked for Candida yeast overgrowth and SIBO as well?

Are you willing to share your food and drink details for a standard day and a cheat day (can be through private message if you like)? I always thought I ate healthily, but it is surprisingly easy to go astray and get too much sugar/carbs, chemicals, pesticides, etc.. It is one of the few things you have complete control over and is crucially important. 'Diets' are short term but food lifestyle changes are long term, and can take time to show results (many months in some cases).

Are you vegan or vegetarian? Eat a lot of rice and other starchy food?

Do you drink any calories? For example, it is still surprising to me how many people think that drinking juice or low fat milk is healthy for you.

Do you still eat in restaurants or cafes as there is no control on quality and ingredients that could be impacting you?

Do you ever have silent reflux or acid reflux (with heartburn feeling)?

What is the quality of your water? Are you drinking, e.g. mineral, well, tap, bottled (plastic or glass), chlorinated (all N. American tap water), fluoridated (all N. American tap water), reverse osmosis, reverse osmosis with minerals added back in, filtered (what kind?), restaurant or cafe water, etc.?

By the way 'normal' results for you can be quite different from what the lab's range of 'normal' results is. How long ago did you perform all the blood glucose tests as that can very quickly change? What is your A1c? Your symptoms really make me think about potential blood glucose control issues, hence a little monitor for at home might be worth looking into as it is a per meal and per day thing.

I am copying a few notes below from another thread in case it can help you.

Doctors sadly often overlook all this and do not have time to really dig in to underlying possible causes.

Please check for nutrient deficiencies or any malabsorption issues including pancreas function, exocrine pancreatic insufficiency (EPI), small intestinal bacterial overgrowth (SIBO), liver function, Candida yeast overgrowth, gallbladder function, stomach acid strength, Crohn's, food sensitivities, Celiac. Tests such as Genova Diagnostics FMV or Great Plains Lab Organic Acid Test (OAT) are great for an overview.

Malabsorption, Exocrine Pancreatic Insufficiency (EPI), SIBO, Candida

This thread has a lot of info on SIBO, Exocrine Pancreatic Insufficiency (EPI), Candida overgrowth, reflux, malabsorption issues:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

Tests to Consider

• Stool test pancreatic elastase
• Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)
• Comprehensive Stool test for parasites, pathogenes, dysbiosis. E.g. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.
• Stool test chymotrypsin (similar to, but not as accurate as elastase)
• Intestinal permeability. Intestinal permeability (a.k.a. leaky gut) is something that your Gastro can also test for. The one I did was: Cyrex Laboratories - Intestinal Antigenic Permeability Screen. It measures intestinal permeability to large molecules, which can cause autoimmune reactions, inflammation, food sensitivities, malabsorption, etc.
• Gallbladder function. Yet another element that is important in breaking down food and thus any gallbladder issues can cause malabsorption.
• SIBO and Candida overgrowth. With SIBO, both methane and hydrogen ones should be tested and tackled. Multi-pronged approach is needed as just antibiotics is not enough. A breath test for SIBO and something such as Genova FMV or Great Plains Lab Organic Acid Test (OAT) can be helpful here.
• Nutrient level and Organic Acid testing such as Genova FMV or Great Plains Lab Organic Acid Test (OAT)
• Fasting blood sugar tests: e.g. HbA1c, triglycerides, c-peptide, insulin, ketones, glucose
• Lactose intolerance: Have you tried dairy free for 4-6 weeks? Does it help if you add lactase pills with anything dairy?
• Food sensitivities: Any food allergy and sensitivity tests completed? What about gluten sensitivity tests?
• MRI of the abdomen with MRCP with contrast: It gives a 3D picture of the gallbladder and high resolution liver, pancreas, gallbladder, ducts, stomach intestines. Amazing test.
• Stomach acid: Is your pH low enough to start digesting food? If it is too high this will exacerbate any SIBO, candida overgrowths, and malabsorption. Are you taking antacids or PPI as these only cover symptoms, do nothing about root cause, and can make things much worse. Have you tried the following simple selftest:
  
  A simple unscientific test to approximate acid level is by drinking a quarter teaspoon of baking soda (sodium bicarbonate) mixed in a glass of water on an empty stomach in the morning. This creates bubbles within two to three minutes when mixed with the hydrochloric acid in your stomach. If after five minutes nothing happens, there is a very good chance the pH of your stomach acid is too high (i.e., low stomach acid).

This thread might be of interest where I also put a few posts regarding food:

https://forums.phoenixrising.me/threads/what-diet-do-you-follow.78920/post-2254091

 

[grapes]

Hi all,

I've been trying to solve my stomach issue for some time with no success. I just don't seem to pin point the root cause of it despite many tries with various supplements and drugs.

So, in brief, I don't seem to have the usual stomach issues, like bloating, gas, diarrhea/constipation, pain etc. Rather, its mostly my body reacting to whatever I eat which results in significant increase in global pain perception, fatigue, and most devastatingly, brain fog (includes low mood). It usually begins 20-40 mins after I've eating something and it doesn't seem to matter what or how much I've eaten. If it was the case of excessive blood rushing to my stomach, my symptoms should be less if i eat a small portion but it doesn't seem to be. If it's allergic reaction/mcas, then how do i explain the delay in symptoms (20-40 mins after and not within minutes). I've tried gut healing supplements like glutamine and others but to no avail. I've tried gluten free, sugar free etc. types of diet but nothing significant or noticeable. I've tried anti fungals like nystatin and others on short term but no improvements and likewise on various types of antibiotics. I've also tried increasing stomach acid though betaine hcl but no improvements

I am most functional early in the morning (not eaten anything) i would say 6/10 in my cfs score but after any food, I go down to 4/10 and I am totally useless. I usually come back up to 5/10 after several hours but never to the extent that i am in the morning.

So what's going on?

Another idea: When anyone eats, there is a biological spike of cortisol. It goes pretty high before it goes back down in the same way, and that's the body's way to help get carbs/blood sugar to the cells. So...if you already have high cortisol, that spike can go even higher, and there will be symptoms.

 

[Wishful]

It's more complicated than 'when anyone eats'. A quick check shows that there are times of day when a meal triggers cortisol, and times when it doesn't. Also: "Whereas carbohydrate meals had no discernible effects, high protein meals induced a large increase in both PRL and cortisol; high fat meals caused selective release of PRL." [PRL is prolactin]

I've also observed that quickly-digested carbs trigger insulin release, and therefore tryptophan transport into the brain. Then there's the vagal nerves communicating with the brain. Eating meals seems to trigger all sorts of biological changes, so it would be hard to figure out which is involved.

@Hindi1989 , if you keep records of the foods and other things you ingest, at which time of day, and when your symptoms change, maybe you can narrow down the possibilities. Then you can experiment with things that modify the possible pathways. If you suspect allergies, try some hypoallergenic foods. If you suspect transport of tryptophan into the brain, BCAAs block that. Lots of things to try. To solve a mystery, you need to gather clues.

 

[Stretched]

@Wishful ...To solve a mystery, you need to gather clues...

@Hindi1989. I've been trying to solve my stomach issue for some time with no success. I just don't seem to pin point the root cause of it despite many tries with various supplements and drugs.
Idea - maybe? No one mentioned ‘benzo belly?‘ This is a real, major condition which follows when withdrawing from benzodiazepine e.g. Klonopin or Valium. It feels like a raw, nervous stomach, more so after eating. If you like read more about it at https://fherehab.com/learning/benzo-belly and podcast https://www.benzofree.org/podcast/benzo-belly-our-gut-in-withdrawal-bfp011/

Otherwise, I subscribe to the significant theory that CFS is an immune system disorder arising from a
dysfunction in the HEPA axis. As you likely know, cortisol flow is increased into the stomach, causing distress there (and other). I feel it big time, especially in the morning and more so if there’s stress involved, adding adrenaline which amps the pain. Some supplements that allegily help are chamomile tea,
carnative and probiotics. I add a proton pump inhibitor (pantaprazol) due to comorbid acidosis.