Reacting to literally anything I ingest

[gregh286]

@gregh286 you might look into the drugs for mast cell diseases, in addition to staying away from foods that set you off. Many of us have gotten a lot of help from drugs like cromlyn sodium, ketotifen, H2 antihistamines like pepsid or zantac, benadryl, monoleukast, and stronger meds like imatinib. And supplements like quercetin, Neuroprotek, and curcumin. And the other substances in Afrin's list.

You might also want to familiarize yourself with the 2 websites I posted above which have a lot of good info.

Another angle would be to do a stool test, like Viome that could point you toward foods to avoid (likely you already know about these...), Super foods to focus on, and a customized set of digestive supplement recommendations. Or a fecal transplant.
Or other stool tests that can identify parasites, and other bad actors.

Thanks @Learner1
Have angioedema since 1994 so well versed with it
Much like cfs never same 2 triggers or any shape or form of consistency. Ketotofen pretty much the best of.them but almost impossible to override the body.

Using immodium stops at source (gut) and is proactive oppsoed to reactive.

 

[tedstark]

Thanks for all the information. I'm inclined to think that it could be MCAS as well only it seems that I don't have the classic symptoms of it ( flushing, rashes, itchiness ). Whatever is going on only seems to be affecting my cardiovascular system. The fact that this happens almost immediately after eating and that my vessels vasodilate suggest that it could be histamine or other chemicals that mast cells release. My only question would be why is it only effecting my arteries and vessels which puzzles me. I think mold could also be a trigger so I'll look into the mycotoxin test. Thanks.

Hi, this is very close to what I experience after eating. I get twitchy, brain fogged/lightheaded/dizzy, etc, and it happens within a few minutes if not seconds (long before hypoglycemica or postprandial hypotension typically kick in for most people). Bowel movements are the other significant trigger of symptoms, but the symptoms are usually more fatigue-heavy in such instances.

I've wondered if symppoms following food are related to stimulation of the vagus nerve via swallowing, or if it's a chewing-induced silent migraine or something. Does drinking water trigger anything for you?

 

[Grigor]

Bowel movements are the other significant trigger of symptoms

Interesting. I have what you have but the bowel movements or rather bloating of the sigmoid colon are really big part of the horror experience.

 

[gbells]

Basically my whole body feels like it becomes inflamed.

Are you following a low inflammation diet? That would be a good place to start.

 

[judyinthesky]

@Jwarrior77 I have a pretty similar thing I guess.
May I ask how it is when you say it effects cognition?
To me it seems that it effects my nervous system in a way that I get heart activation - like vagus nerve is activated. It also feels like some substance is released.
I find that it can also provoke pseudo panic attacks.
Have tried Ketotifen and H1 antihistamines but only helps marginally. Not sure what's going on. What helps me is, because I also have pancreatic insufficiency, to eat like a diabetic person. And to fast before eating.
It's also worse in the morning for me.
Any parallel? There is a thing called postprandial syndrome and people have suggested that vessels might play a role.
My biggest problem is that it wires up my nervous system. For you too?

 

[kangaSue]

@judyinthesky These can be the symptoms of rapid gastric emptying (RGE), something that is far more common than delayed gastric emptying (gastroparesis). RGE (more commonly known as dumping syndrome but I have seen it described as 'Gastroparesis-like Syndrome' too) is seen a lot in 'Functional Dyspepsia', and can be diagnosed by a Gastric Emptying Scintigraphy test. Having pancreatic insufficiency as well can just add to the symptoms.

(For all intents and purposes, Functional Dyspepsia and gastroparesis can be indistinguishable from each other. With dumping syndrome, undigested food enters the small intestine, which draws in too much water from surrounding blood vessels and intestinal tissue. This can cause significant bloating and bowel cramps and lead to diarrhea, nausea, and vomiting, as well as symptoms in other parts of the body, such as light-headedness, dizziness, flushing, and an irregular heart rate. Early satiety is common, and hypoglycemia can also be an issue in some cases)
https://pubmed.ncbi.nlm.nih.gov/33548234/
https://jmedicalcasereports.biomedcentral.com/articles/10.1186/1752-1947-6-132
https://franklincardiovascular.com/gastroparesis-part-3-dumping-syndrome/

There's a few things that can be tried for this. A 'grazing diet' can be effective. RGE often involves impaired gastric accommodation though which allows the food to sink too quickly to the bottom of the stomach for emptying into the duodenum before sufficient predigestion has taken place (the first image taken in a GES test may show the majority of food is already towards the bottom of the stomach - the intragastric meal distribution).

Taking a med known to improve gastric accommodation (buspirone is one)) and taking pancreatic enzymes (such as Creon) with meals can help alleviate symptoms in many cases. Some people find increasing their fibre intake also helps to slow the rate of gastric emptying.

Duodenal inflammation can be part of the pathology in Functional Dyspepsia, and involve increased eosinophil and mast cell counts in duodenum biopsies so steroids and typical mast cell activation meds can be beneficial. This is proving to be the case in gastroparesis too but these things are not routinely tested for.
https://www.tandfonline.com/doi/abs/10.1080/14728222.2020.1752181

Having a wired up nervous system feeling with it is quite possibly tied into also having orthostatic intolerance issues as well, such as POTS or Autonomic Neuropathy along with it all

 

[hb8847]

Fast forward a year later I've become intolerant to almost every food or supplement/med I ingest. Basically my whole body feels like it becomes inflamed.

In case it helps anyone this was my experience too, and it turned out I do have MCAS. And I was also put off MCAS by the fact antihistamines don't appear to do anything for me, nor do I exhibit the 'standard' reactions (such as hives, rashes etc). Mine are more CFS and body-ache related, as well as things like GI symptoms, but I can also get the sort of blood/cardiovascular symptoms you talk about.

All this is to say, I wouldn't rule out MCAS just because of a lack of a response to antihistamines. The first thing my doctor said when I told him I reacted to everything was "MCAS" and that turned out to be the case.