I really hate when people make these sweeping statements. It emboldens people to gaslight and harm others and to believe they know more about other people's health issues than the patients themselves. Even in the example cited, there were 27 people who did improve when abstaining from gluten and got worse when it was reintroduced to their diet.
People who have food sensitivities are gaslit at every turn regarding their own health - and this kind of biased reporting increases the chances of abuse. Some people will intentionally sneak allergens into food they share with others when they don't believe it's a "real" ailment, and this kind of false information can be used in custody or domestic violence disputes.
I have a serious autoimmune disease that was only diagnosed last year, after more than 40 years of being dismissed and gaslit by doctors and close relatives and others. There is such a difference in care when you have a diagnosis that people "believe" in, and it transforms your quality of life, even when the disease itself cannot get better.
I also have food sensitivities and gluten is one of them. I do not have a problem with FODMAPS at all, and I don't have any negative symptoms unless I am exposed to gluten. This happens whether I am aware of the exposure or not.
Please normalize believing people about their own health problems. It is good to perform scientific investigation, but the interpretation of the results has to be done cautiously. If there is a discrepancy in some (or even most) cases between what parents report and what the data shows, that doesn't mean it applies to all cases. It's better to ask the question of why the data doesn't reflect what people are self reporting, and then investigate possible alternatives to help inform people of the underlying causes. But claiming that nobody has a sensitivity to gluten just because only 27 ppl out of hundreds did, ignores those 27 and also fails to help the other hundreds.
I wish this were the case for me, but after 5 years of suffering with IBS, every possible test (including celiac), medications, a dr convinced me to try gluten free for 30 full days. I did not believe it would do anything as I had never been able to connect eating gluten to symptoms. Also I had no desire to cut out so many wonderful foods. But right at the end of the 30 days, I started to notice major changes, and quickly it was like night and day, so much better. I also thought I could probably cheat once in a while, but now it is clear that I get quite sick whenever I eat gluten. Don’t know if there’s some other explanation, wish there was, but I’m not going back.
Eosinophilic esophagitis is food intolerance mediated. I eliminated so much stuff when we first found out, but the culprit is gluten. And I’m not celiac. I still can’t swallow well when eat gluten. It’s autoimmune based. I wish there was more and better research.
Also - why are people SO BOTHERED by another person's choice to avoid gluten? It's very weird to me that there are entire studies specifically designed to DISprove a particular food sensitivity.
It's clear that diet makes a difference in health outcomes, and it's plausible that different types of people may be best served by different diets. It's also clear that the set of *available* food is based more on money/economics than on consumer well-being. Meanwhile, the science behind how food affects hormones and chronic disease is in its infancy, so people are flying blind as they experiment with dietary choices in an effort to improve their health.
So: instead of designing studies with the goal of "shutting people up" or shaming them for trying to find their optimal diet, what if we actually did meaningful research into the relationships between various nutrients/vitamins/minerals and long-term health outcomes??
I'd say the reason people are "bothered" is that some of us actually provide hospitality for other people, and having to cater to other people's spurious dietary sensitivities is a nuisance! People like you who never cook for your fellow humans will never know that particular frustration. Quite apart from the fact that I would want to know that it's quite likely that my non coeliac gluten sensitivity is a nocebo effect... You might like to live in ignorance, I certainly don't!
Who says that I "never cook for [my] fellow humans"? Or that I've ever asked a single soul to prepare gluten-free food for me? Dang, there's just no need to be presumptuous and hostile on Substack.
I personally don't think nocebo is the right frame here. I don't think non-celiac gluten avoidance typically starts with any acute incident of (real or fake) symptoms. It's more like, people discover they've developed a hormone imbalance, or an autoimmune problem, or other health issue, and they start cutting out foods to see what will make them feel better. And because very little research exists to guide people through the specifics of this, they have no choice but to brute force it. Gluten is one of the most commonly recommended things to cut out for various purposes (see: Dr Sara Gottfried telling women under 40 with low estrogen to avoid gluten, or Dr Terry Wahls telling folks with MS to cut out gluten).
My point in the previous comment was, that instead of wasting research money trying to DISprove something, it would be much more useful to actually study what is the optimal diet for different hormone imbalances, autoimmune conditions, etc. That way, we would have scientific solutions to people's health problems.
I’m not sensitive to gluten, but I avoid it because I am highly sensitive to glyphosate according to blood tests. Perhaps glyphosate sensitivity should be considered in future studies. Would love to hear your thoughts on this.
I have RA. Gluten does not affect my gut but I GET horrible flares if I eat it. I don’t need a study to tell me it does or doesn’t bother me. I keep a journal of what I eat and when I get flares. It’s pretty obvious.
1) It sounds like these studies tested people over a very short time period, whereas it can take weeks/months for gut health to meaningfully change
2) What amount of gluten did study participants consume? While it's true that celiacs will react even to a very small amount of gluten, this wouldn't necessarily be the case for someone who is merely sensitive. It may be that a person does fine with small amounts of gluten, and only notices a difference with larger quantities (such as would be found in bread)
Thank you. SpouseMD was diagnosed with Celiac in 2011-ish and agree that the gluten-free bread options today are light years beyond what was available when he was first diagnosed.
This is an oversimplification. People with disorders like Mast Cell Activation Syndrome can become very sick from eating gluten, for instance. Some will and some won't, but it is a possible trigger. There are things other than celiac or gluten sensitivity that could make people sick when eating things with gluten and so you should believe people about their own experiences.
I really hate when people make these sweeping statements. It emboldens people to gaslight and harm others and to believe they know more about other people's health issues than the patients themselves. Even in the example cited, there were 27 people who did improve when abstaining from gluten and got worse when it was reintroduced to their diet.
People who have food sensitivities are gaslit at every turn regarding their own health - and this kind of biased reporting increases the chances of abuse. Some people will intentionally sneak allergens into food they share with others when they don't believe it's a "real" ailment, and this kind of false information can be used in custody or domestic violence disputes.
I have a serious autoimmune disease that was only diagnosed last year, after more than 40 years of being dismissed and gaslit by doctors and close relatives and others. There is such a difference in care when you have a diagnosis that people "believe" in, and it transforms your quality of life, even when the disease itself cannot get better.
I also have food sensitivities and gluten is one of them. I do not have a problem with FODMAPS at all, and I don't have any negative symptoms unless I am exposed to gluten. This happens whether I am aware of the exposure or not.
Please normalize believing people about their own health problems. It is good to perform scientific investigation, but the interpretation of the results has to be done cautiously. If there is a discrepancy in some (or even most) cases between what parents report and what the data shows, that doesn't mean it applies to all cases. It's better to ask the question of why the data doesn't reflect what people are self reporting, and then investigate possible alternatives to help inform people of the underlying causes. But claiming that nobody has a sensitivity to gluten just because only 27 ppl out of hundreds did, ignores those 27 and also fails to help the other hundreds.
Thank you
*what patients report (typo said parents)
This gochujang is supposed to be GF:
Chung Jung One O'Food Gochujang Korean Chili Sauce, Medium Hot Sauce, 7.50 oz. (Pack of 2) https://a.co/d/adF7RXw
By the way, tell me if you think it’s not GF. My wife will want to know. Thx.
thanks for this!
Always a pleasure!
I wish this were the case for me, but after 5 years of suffering with IBS, every possible test (including celiac), medications, a dr convinced me to try gluten free for 30 full days. I did not believe it would do anything as I had never been able to connect eating gluten to symptoms. Also I had no desire to cut out so many wonderful foods. But right at the end of the 30 days, I started to notice major changes, and quickly it was like night and day, so much better. I also thought I could probably cheat once in a while, but now it is clear that I get quite sick whenever I eat gluten. Don’t know if there’s some other explanation, wish there was, but I’m not going back.
Eosinophilic esophagitis is food intolerance mediated. I eliminated so much stuff when we first found out, but the culprit is gluten. And I’m not celiac. I still can’t swallow well when eat gluten. It’s autoimmune based. I wish there was more and better research.
Also - why are people SO BOTHERED by another person's choice to avoid gluten? It's very weird to me that there are entire studies specifically designed to DISprove a particular food sensitivity.
It's clear that diet makes a difference in health outcomes, and it's plausible that different types of people may be best served by different diets. It's also clear that the set of *available* food is based more on money/economics than on consumer well-being. Meanwhile, the science behind how food affects hormones and chronic disease is in its infancy, so people are flying blind as they experiment with dietary choices in an effort to improve their health.
So: instead of designing studies with the goal of "shutting people up" or shaming them for trying to find their optimal diet, what if we actually did meaningful research into the relationships between various nutrients/vitamins/minerals and long-term health outcomes??
I'd say the reason people are "bothered" is that some of us actually provide hospitality for other people, and having to cater to other people's spurious dietary sensitivities is a nuisance! People like you who never cook for your fellow humans will never know that particular frustration. Quite apart from the fact that I would want to know that it's quite likely that my non coeliac gluten sensitivity is a nocebo effect... You might like to live in ignorance, I certainly don't!
Who says that I "never cook for [my] fellow humans"? Or that I've ever asked a single soul to prepare gluten-free food for me? Dang, there's just no need to be presumptuous and hostile on Substack.
I personally don't think nocebo is the right frame here. I don't think non-celiac gluten avoidance typically starts with any acute incident of (real or fake) symptoms. It's more like, people discover they've developed a hormone imbalance, or an autoimmune problem, or other health issue, and they start cutting out foods to see what will make them feel better. And because very little research exists to guide people through the specifics of this, they have no choice but to brute force it. Gluten is one of the most commonly recommended things to cut out for various purposes (see: Dr Sara Gottfried telling women under 40 with low estrogen to avoid gluten, or Dr Terry Wahls telling folks with MS to cut out gluten).
My point in the previous comment was, that instead of wasting research money trying to DISprove something, it would be much more useful to actually study what is the optimal diet for different hormone imbalances, autoimmune conditions, etc. That way, we would have scientific solutions to people's health problems.
I’m not sensitive to gluten, but I avoid it because I am highly sensitive to glyphosate according to blood tests. Perhaps glyphosate sensitivity should be considered in future studies. Would love to hear your thoughts on this.
I have RA. Gluten does not affect my gut but I GET horrible flares if I eat it. I don’t need a study to tell me it does or doesn’t bother me. I keep a journal of what I eat and when I get flares. It’s pretty obvious.
1) It sounds like these studies tested people over a very short time period, whereas it can take weeks/months for gut health to meaningfully change
2) What amount of gluten did study participants consume? While it's true that celiacs will react even to a very small amount of gluten, this wouldn't necessarily be the case for someone who is merely sensitive. It may be that a person does fine with small amounts of gluten, and only notices a difference with larger quantities (such as would be found in bread)
Except; I have sensitivity to gluten... I break out in a rash when I eat it.
Thank you. SpouseMD was diagnosed with Celiac in 2011-ish and agree that the gluten-free bread options today are light years beyond what was available when he was first diagnosed.
This is an oversimplification. People with disorders like Mast Cell Activation Syndrome can become very sick from eating gluten, for instance. Some will and some won't, but it is a possible trigger. There are things other than celiac or gluten sensitivity that could make people sick when eating things with gluten and so you should believe people about their own experiences.
I usually substitute shiro miso and a little dark tamari for fermented soybeans. It's not....quite the same, but very close.
How do crohns/colitis sufferers fit into this. Do that have a gluten allergy like coeliacs or is it something else?
We also have GF Vegan beer now too.