I had a bunch of weird symptoms starting several months after I was really sick with what was maybe COVID, maybe some kind of SARS, and at least the worst flu of my life by 3 orders of magnitude. Symptoms kind of matched pericarditis, but there was no evidence of that. I wore a heart monitor for two weeks, turned up nothing either. I would occasionally get diabetes in the sense that diabetes is a symptom (excessive, unquenchable thirst), but blood glucose monitoring proved that I was, if anything, unusually healthy in that regard. I also experienced occasional vision blurriness, palpitations, and pain extending into my next and left arm. Probably some other minor things too that I’ve forgotten.
After almost a year of going to doctors and ruling things out my PCP recommended a dietitian, in part because I think he was out of ideas and dealing with a patient who had been reasonable for years but was now complaining about mystery symptoms that couldn’t be explained.
After two very expensive hours the dietitian recommended I go on an elimination diet because it was “probably gluten”. I rolled my eyes. I had eaten gluten just fine for years, no family history of gluten issues, DNA testing negative for celiac, etc.
Well one week into the elimination diet my problems cleared up. After 3 weeks I ate a loaf of bread. I was okay. I ate another loaf of bread the next day. Symptoms returned.
What’s even more annoying is trying to understand the mechanism of action. Nothing authoritative I’ve found has a good model. The best I’ve put together from scrounging forums and combining with the evidence I have is this:
At least in my case, gluten sensitivity is being caused by an allergic reaction in the villi of the small intestine. Gluten, or something that comes with gluten, locks into them and makes them swell. This causes referred pain that in my case mimics pericarditis symptoms. Because they’re swollen they can’t take up other nutrients, and if enough enough of them are swollen they can’t even process enough water for my body to be convinced it’s hydrated (in all cases of excessive thirst I was clinically fine other than some slightly lowered electrolytes from drinking so much water).
Now the weirdest part: drinking coconut water will make the symptoms go away, and I can basically eat gluten if I drink coconut water at the same time. My best guess is that the high levels of magnesium in coconut water are doing something here, but that’s really just a guess. On the model, somehow the coconut water probably gets any gluten bound to the villi and causing inflammation to release and out of my small intestine and maybe also does something to help the inflammation to go down.
I can’t find any papers documenting this sort of mechanism, though I’ll admit I might just not know enough to be able to find them, and maybe the mechanism I’ve proposed is all wrong and it’s better to just think of by body as something like a black box that has something like an threshold response to gluten where under some threshold I’m fine but then past some threshold I’ve “taken too much damage” to function normally and that I can get back under the threshold by drinking coconut water.
I just mostly avoid gluten now, but it was pretty frustrating that the only way to figure this out was to try something that we didn’t have any good evidence a priori to think was the cause, other than some vague stats that gluten sensitivity tends to develop in middle age. I’m not sure if we could have done better but man I sure wish we could.
The Mg hypothesis is easy to test: Get some MgCl or MgCO3 and take some with gluten containing food. Use a quantity similar to the Mg dose found in the amount of coconut water you found to help you. If it helps it is the a tive ingredient. If not, it may still be invloved but not sufficient.
I had eaten gluten just fine for years, no family history of gluten issues, DNA testing negative for celiac, etc.
Methods of growing and processing wheat have changed dramatically in the last few decades. Especially for pre-packaged sliced bread, buns for fast food, and anything else bought by a serious cost cutting purchaser.
i.e. The gluten found in any product you can buy for a few dollars in the U.S. or Canada is almost certainly different then the gluten any of your parents or grandparents had eaten.
This isn’t really talked about outside of industry experts and enthusiasts, and maybe some very agitated celiac adjacent folks, because there is no feasible way to go back to the old way of wheat growing and processing without bread doubling or tripling in price.
There are probably niche growers for luxury markets, and of course ‘gluten free’ bread, if you really want to eat bread regardless.
I’ve gotten the advice from a few people that I might be able to eat things made with “heritage” wheat, but realistically I’m not going to make my own bread, cakes, etc. in general to try this out.
If this pans out maybe over decades we could effect a shift to different varieties that more people can eat, but I think that’s going to require some strong evidence to get food industry players to align around the choice.
Isn’t making your own bread really easy, you just need a bread maker put a bunch of ingredients in, press the button and wait. Seems like it might be worth a try. But obviously you know more about your situation than me.
That it involves many more steps than put a thing in the microwave and pressing buttons means it’s a cooking task I’m only going to perform for special occasions, if ever. I realize others like cooking a lot more and would love an excuse to “have to” make their own bread, but not me.
I don’t know what the supposed changes in growing and processing wheat are, but a lot of that will presumably have happened by the stage it’s flour. So doing the mixing and baking yourself might not change anything.
At least if the factor involved is gluten, afaik, the heritage forms are often even higher.
I have heard anecdotally from a bunch of people that they do better on heritage flours, but I do not think gluten can be the cause of that. Notably, a bunch of people who do badly on wheat do perfectly fine when eating pure gluten (seitan), so I think they are avoiding whatever is the trigger only indirectly, and in the process, likely missing out on a lot of joy and wasting a lot of money.
But then, I also understand that anyone who has found something that works for once really no longer cares to make any experiments.
Now the weirdest part: drinking coconut water will make the symptoms go away, and I can basically eat gluten if I drink coconut water at the same time. My best guess is that the high levels of magnesium in coconut water are doing something here, but that’s really just a guess. On the model, somehow the coconut water probably gets any gluten bound to the villi and causing inflammation to release and out of my small intestine and maybe also does something to help the inflammation to go down.
How on earth did you privelege the hypothesis that coconut water helps? Is that common?
It was an accident mostly. I drank some coconut water when I had extreme thirst because I thought maybe something something electrolytes and it cleared it right up even though similar things that should have worked if it was an electrolyte imbalance didn’t.
Also, I’m not sure where you live, but where I am in the Bay Area coconut water is everywhere and a pretty common thing that lots of people drink, so it wasn’t even like I had to try very hard to find it. Before I found it had this medicinal property, I was probably already drinking coconut water several times a month just because I liked it, and drinking water from fresh coconut whenever I could get ahold of one also because I like it.
In the case of the latter, only a very small subset of people who get Epstein-Barr go on to develop MS.
Maybe your viral infection caused your immune system to produce antibodies that happened to bind to gluten along with the viral proteins they were designed for.
I think anyone with a severe diet issue should try a proper elimination diet with carefully documented reintroduction at least once, also taking into account things like food storage times (affects histamines) and processing (affects FODMAPs).
For me at least, symptoms follow about three days after I consumed the thing in question (in the form of inflammation rising and me getting severely sick), and I need to eliminate for a while for it to quiet down, and the quantity and context matter. Until I went on an elimination diet, it seemed completely random and impossible to make sense of, because too much was varying all at once, and I never actually felt okay. I also grouped together a bunch of things that were importantly different. (E.g. whether I tolerate soy depends on how it was processed. Whether I tolerate fructose depends on whether it is paired with glucose. Etc.) There were symptoms I was barely even aware of because I had never been without long enough for them to fade.
My own similar story like this:
I had a bunch of weird symptoms starting several months after I was really sick with what was maybe COVID, maybe some kind of SARS, and at least the worst flu of my life by 3 orders of magnitude. Symptoms kind of matched pericarditis, but there was no evidence of that. I wore a heart monitor for two weeks, turned up nothing either. I would occasionally get diabetes in the sense that diabetes is a symptom (excessive, unquenchable thirst), but blood glucose monitoring proved that I was, if anything, unusually healthy in that regard. I also experienced occasional vision blurriness, palpitations, and pain extending into my next and left arm. Probably some other minor things too that I’ve forgotten.
After almost a year of going to doctors and ruling things out my PCP recommended a dietitian, in part because I think he was out of ideas and dealing with a patient who had been reasonable for years but was now complaining about mystery symptoms that couldn’t be explained.
After two very expensive hours the dietitian recommended I go on an elimination diet because it was “probably gluten”. I rolled my eyes. I had eaten gluten just fine for years, no family history of gluten issues, DNA testing negative for celiac, etc.
Well one week into the elimination diet my problems cleared up. After 3 weeks I ate a loaf of bread. I was okay. I ate another loaf of bread the next day. Symptoms returned.
What’s even more annoying is trying to understand the mechanism of action. Nothing authoritative I’ve found has a good model. The best I’ve put together from scrounging forums and combining with the evidence I have is this:
At least in my case, gluten sensitivity is being caused by an allergic reaction in the villi of the small intestine. Gluten, or something that comes with gluten, locks into them and makes them swell. This causes referred pain that in my case mimics pericarditis symptoms. Because they’re swollen they can’t take up other nutrients, and if enough enough of them are swollen they can’t even process enough water for my body to be convinced it’s hydrated (in all cases of excessive thirst I was clinically fine other than some slightly lowered electrolytes from drinking so much water).
Now the weirdest part: drinking coconut water will make the symptoms go away, and I can basically eat gluten if I drink coconut water at the same time. My best guess is that the high levels of magnesium in coconut water are doing something here, but that’s really just a guess. On the model, somehow the coconut water probably gets any gluten bound to the villi and causing inflammation to release and out of my small intestine and maybe also does something to help the inflammation to go down.
I can’t find any papers documenting this sort of mechanism, though I’ll admit I might just not know enough to be able to find them, and maybe the mechanism I’ve proposed is all wrong and it’s better to just think of by body as something like a black box that has something like an threshold response to gluten where under some threshold I’m fine but then past some threshold I’ve “taken too much damage” to function normally and that I can get back under the threshold by drinking coconut water.
I just mostly avoid gluten now, but it was pretty frustrating that the only way to figure this out was to try something that we didn’t have any good evidence a priori to think was the cause, other than some vague stats that gluten sensitivity tends to develop in middle age. I’m not sure if we could have done better but man I sure wish we could.
The Mg hypothesis is easy to test: Get some MgCl or MgCO3 and take some with gluten containing food. Use a quantity similar to the Mg dose found in the amount of coconut water you found to help you. If it helps it is the a tive ingredient. If not, it may still be invloved but not sufficient.
Methods of growing and processing wheat have changed dramatically in the last few decades. Especially for pre-packaged sliced bread, buns for fast food, and anything else bought by a serious cost cutting purchaser.
i.e. The gluten found in any product you can buy for a few dollars in the U.S. or Canada is almost certainly different then the gluten any of your parents or grandparents had eaten.
This isn’t really talked about outside of industry experts and enthusiasts, and maybe some very agitated celiac adjacent folks, because there is no feasible way to go back to the old way of wheat growing and processing without bread doubling or tripling in price.
There are probably niche growers for luxury markets, and of course ‘gluten free’ bread, if you really want to eat bread regardless.
I’ve gotten the advice from a few people that I might be able to eat things made with “heritage” wheat, but realistically I’m not going to make my own bread, cakes, etc. in general to try this out.
If this pans out maybe over decades we could effect a shift to different varieties that more people can eat, but I think that’s going to require some strong evidence to get food industry players to align around the choice.
Isn’t making your own bread really easy, you just need a bread maker put a bunch of ingredients in, press the button and wait. Seems like it might be worth a try. But obviously you know more about your situation than me.
That it involves many more steps than put a thing in the microwave and pressing buttons means it’s a cooking task I’m only going to perform for special occasions, if ever. I realize others like cooking a lot more and would love an excuse to “have to” make their own bread, but not me.
I don’t know what the supposed changes in growing and processing wheat are, but a lot of that will presumably have happened by the stage it’s flour. So doing the mixing and baking yourself might not change anything.
At least if the factor involved is gluten, afaik, the heritage forms are often even higher.
I have heard anecdotally from a bunch of people that they do better on heritage flours, but I do not think gluten can be the cause of that. Notably, a bunch of people who do badly on wheat do perfectly fine when eating pure gluten (seitan), so I think they are avoiding whatever is the trigger only indirectly, and in the process, likely missing out on a lot of joy and wasting a lot of money.
But then, I also understand that anyone who has found something that works for once really no longer cares to make any experiments.
How on earth did you privelege the hypothesis that coconut water helps? Is that common?
It was an accident mostly. I drank some coconut water when I had extreme thirst because I thought maybe something something electrolytes and it cleared it right up even though similar things that should have worked if it was an electrolyte imbalance didn’t.
Also, I’m not sure where you live, but where I am in the Bay Area coconut water is everywhere and a pretty common thing that lots of people drink, so it wasn’t even like I had to try very hard to find it. Before I found it had this medicinal property, I was probably already drinking coconut water several times a month just because I liked it, and drinking water from fresh coconut whenever I could get ahold of one also because I like it.
Yeah makes sense. I sort of pictured you stopping your glutenfree diet to test this, which didn’t make any sense.
I live in Germany, coconut water is easily available, but I did not know people actually consuming that regularly.
This is kind of a crackpot theory, but I wonder if it could explain your experience:
Novel viral infections trigger the formation of new kinds of antibodies. We have strong evidence that some viruses can trigger the formation of antibodies that bind to human cells in addition to those of the virus. Two examples of this are bites from the Lone Star Tick causing red meat allergies and the Epstein-Barr virus causing multiple sclerosis.
In the case of the latter, only a very small subset of people who get Epstein-Barr go on to develop MS.
Maybe your viral infection caused your immune system to produce antibodies that happened to bind to gluten along with the viral proteins they were designed for.
I think anyone with a severe diet issue should try a proper elimination diet with carefully documented reintroduction at least once, also taking into account things like food storage times (affects histamines) and processing (affects FODMAPs).
For me at least, symptoms follow about three days after I consumed the thing in question (in the form of inflammation rising and me getting severely sick), and I need to eliminate for a while for it to quiet down, and the quantity and context matter. Until I went on an elimination diet, it seemed completely random and impossible to make sense of, because too much was varying all at once, and I never actually felt okay. I also grouped together a bunch of things that were importantly different. (E.g. whether I tolerate soy depends on how it was processed. Whether I tolerate fructose depends on whether it is paired with glucose. Etc.) There were symptoms I was barely even aware of because I had never been without long enough for them to fade.