Fluctuating food sensitivities, theories?

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borko2100

Senior Member (Voting Rights)
About 1.5 years ago I started having these awful sensitivities to certain substances, there were lot's of them, but the main ones were MSG, aspartame and capsaicin. The symptoms that I almost invariably got (I did some experiments to confirm this) were severe insomnia, whole body itchiness, hot flushes and suicidal thoughts.

Then fast forward a year and a quarter and those terrible after effects are 90% gone even after eating decent amounts of the substances mentioned.

Now this is very interesting how such sensitivities can fluctuate so much. I have a few theories as to how this is possible. Just throwing one out there is that maybe a CFS crash caused my blood brain barrier to get out of whack. With the effect of those substances getting more easily to the brain where they can do damage. What mechanism there might be behind this I can only speculate. If ME/CFS is a disease originating from the cellular level, maybe the crash caused blood barrier cells to become dysfunctional / energy depleted thus making the barrier dysfunctional as well?

Do you guys think this is a plausible explanation? Any other theories or comments?
 
One possibility a dietician suggested to me (my food intolerance symptoms are dose dependant and come after a time delay, in the case of my gluten intolerance the main incapacitating symptom is a migraine that starts 24 hours after the gluten consumption, though a caffeine triggered migraine comes after 6 hours) is that the primary headline food trigger causes inflammation of the gut lining that impacts on the it’s permeability. This allows other molecules to enter the bloodstream that the gut lining would normally block. It is then these secondary molecules when reaching the brain that cause the migraine and other symptoms.

So the headline food has an impact on the gut, but only indirectly triggers the ‘neurological’ symptoms that arise because there are secondary as yet unidentified molecules passing through the gut lining, which could be from a second different food stuff (or possibly from microbial activity in the gut). So the primary food stuff may seem to have no effect if consumed without the simultaneous presence of the secondary trigger.

However, though this might explain fluctuation in symptoms, if probably would not explain the arising and then total disappearance of an intolerance.

My longest standing intolerance, gluten, seems to have been present since at least the onset of my ME, though it has got worse, for a while I could tolerate rye but not wheat, now I can not tolerate any thing with gluten. However my caffeine intolerance, though now ongoing is of more recent origin and seemed to come on after an ME relapse. I also have had issues with alcohol tolerance since the onset of my ME, but for many years it was very inconsistent and variation could relate to different drinks, so I could not be sure if it was the alcohol itself or something else in individual drink categories ( eg beer, wine, spirts, etc), however as my ME has worsened of the years, alcohol is more likely to trigger an adverse response regardless of what form, so it easiest just to avoid it completely.

I suspect I have other intolerances but have not identified the trigger food stuffs. For me to be clear of a triggering food, I need to eliminate it from my diet then reintroduce it to get a predictable response. Ongoing consumption of trigger foods gives symptoms that overlap with general ME symptoms (headaches, fatigue, IBS symptoms) and are hard if not impossible to distinguish from the ME in general.

I also suspect that my intolerances vary with the current severity of my ME, but can not be certain of that, so do wonder if partly ME related food intolerances is a hypersensitivity that fluctuates with the ME itself in the same way as my sound or light intolerance seems to.
 
I am fairly sure that I too have non-coeliac gluten intolerance, and try to avoid anything containing gluten. But having reintroduced a teaspoonful every other day of Nutrisport glutamine, supposedly free of gluten, I have started getting occasional headaches and even scintillating scotoma again, which may be caused by gluten, so I may try a different brand. (There are links to threads relating to or referring to scintillating scotoma here and on Phoenix Rising.)
 
MeSci said:
I am fairly sure that I too have non-coeliac gluten intolerance, and try to avoid anything containing gluten. But having reintroduced a teaspoonful every other day of Nutrisport glutamine, supposedly free of gluten, I have started getting occasional headaches and even scintillating scotoma again, which may be caused by gluten, so I may try a different brand. (There are links to threads relating to or referring to scintillating scotoma here and on Phoenix Rising.)
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It is frustrating there is so little good research and what I have read is so inconsistent, with estimated incidences of food intolerances associated with ME varying from 13.5% to 80%.

When I was reading up on the issue sometime ago, I ended up assuming that around 40% of us will have gluten intolerance, though Loblay and Swain* only reported a prevalence of only 22% for gluten intolerance in CFS in their study.

However I wonder if, rather like orthostatic intolerance, the more it is studied the more likely it might be that everyone with ME will be found have some degree or aspect of food intolerance.

*Note - Loblay & Swain (1990) ‘The role of food intolerance in Chronic Fatigue Syndrome’ see https://www.slhd.nsw.gov.au/rpa/allergy/research/RoleOfFoodIntoleranceInCFS.pdf for the text, and ME-pedia for details of its source https://me-pedia.org/wiki/The_Clini...ic_Encephalomyelitis/Chronic_Fatigue_Syndrome
 
Other symptoms fluctuate in response to whatever is going wrong due to exertion eg i get various degrees of sore throat from a bit croaky right up to laryngitis where I wasn’t able to talk without pain for 3 weeks. So I guess that could just be the same for food intolerance.
 
Peter Trewhitt said:
One possibility a dietician suggested to me (my food intolerance symptoms are dose dependant and come after a time delay, in the case of my gluten intolerance the main incapacitating symptom is a migraine that starts 24 hours after the gluten consumption, though a caffeine triggered migraine comes after 6 hours) is that the primary headline food trigger causes inflammation of the gut lining that impacts on the it’s permeability. This allows other molecules to enter the bloodstream that the gut lining would normally block. It is then these secondary molecules when reaching the brain that cause the migraine and other symptoms.

So the headline food has an impact on the gut, but only indirectly triggers the ‘neurological’ symptoms that arise because there are secondary as yet unidentified molecules passing through the gut lining, which could be from a second different food stuff (or possibly from microbial activity in the gut). So the primary food stuff may seem to have no effect if consumed without the simultaneous presence of the secondary trigger.
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I like this theory as it could explain why different substances (at least in my case) have similar negative effects, namely because they are indirectly triggering the damage by affecting gut permeability. Going further with this, it might be possible that ME could affect the cells that regulate gut permeability thus making it more likely for bad stuff to get into the bloodstream and trigger symptoms.

Elaborating further on this, maybe these substances getting through are simply bacterial byproducts such as LPS and others? I know they have done LPS injections on people and it can cause all kinds of nasty symptoms, including neurological ones and neuroinflammation. So yes I guess it is quite likely that the gut barrier is somehow involved in ME/CFS, probably not at the root of it, but rather as a consequence of it.
 
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Mij said:
The symptoms that @borko2100 described were my menopause symptoms. Not suicidal, but very dark moods that I never experienced in my life before meno.
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Yea quite strange considering I am not female. I've read about hot flushes being a symptom of menopause, men don't seem to get them, but with ME/CFS you can get anything really. I also get them sometimes when I am doing a diffcult task by the way. Let's say I am trying to figure out a difficult riddle or getting frustrated trying to fix something, then I get this feeling of warmth over the entire body or a wave of heat. Interestingly Whitney Dafoe also mentioned getting this. It's like the brain sending a signal that it can't handle the stress getting put on it, very interesting.
 
Niacin gave me suicidal thoughts, and hot flushes when I took an actual tablet of it. Maybe try a niacin tablet or some food rich in niacin and see whether that causes any of the symptoms.

As others have said, changes to gut permeability or microbiome could explain the responses to various foods.

As for trying to figure out exactly how one chemical might affect ME symptoms, there are likely too many possibilities. Cumin, probably from the cuminaldehyde, was amazingly effective for blocking my PEM, but I still have no idea how it managed to do that. Conjugated linoleic acids allow me to sleep longer between wakings, but how? Supplemental carnitine allowed me to eat meats without worsening symptoms, and that's probably because carnitine transports fatty acids across the mitochondrial membrane, but I don't know why excess fatty acids not being transported would cause symptoms.

If I was facing those responses to some foods, I'd keep a list of all of them, and try to think of what they all have in common.
 
Based on my understanding of salicylate intolerance, food intolerances are typically chemically intolerances, complicated by the fact that foods have many different chemicals, and two lots of the same food might have chemical differences, due to soil, processing, pesticides etc. The first line of defence is the gut biome, then the gut lining, then liver detox, then what gets through that hits your chemistry where you are weakest.

With salicylates the issue is complicated by what fats you eat, and what antioxidants you have and make. The two main enzymes affected are activated by glutathione, so glutathione status becomes important. There are mineral cofactors too.

Presuming a similar story for most cases of food intolerances (organic damage and genetics can change this) its a complex mishmash of factors. Most hypotheses about what is causing what in a specific circumstance are unprovable, though trigger foods can definitely be tested. Its even worse if you are over-reacting to a basic food chemical, such as an amino acid, as these are not detoxed in the liver.

In my case I had a problem with wheat, maybe gluten or maybe not, but at times it almost goes away. My salicylate issues are also in remission. I am not sure I would ever believe these things are cured, just the balance of my body has changed and I can now tolerate more of them. Which is good, because I love my spices. Doh, love wheat too, but eat it rarely due to other issues.

The most basic chemical intolerances are primarily to glucose and fructose. We call this type 2 diabetes if its bad enough. However we think we understand diabetes (we are still learning) so we treat it as a special case.

Creekside said:
Niacin gave me suicidal thoughts, and hot flushes when I took an actual tablet of it.
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Niacin has hot flushing as a standard side effect. Its a good sign its working. Its also not well tolerated by many people.
 
I think its the effect of the food (its nutritions) on the basal ganglia, especially on the funnel-shaped nucleus caudatus (therefore the possibly tremendous sensitivity).
 
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