Thx for the comment, Heather. The lines separating IBS from various food item intolerances can be indistinct. And as every gastroenterologist will admit, there are patients whom we have assigned a diagnosis of IBS whom we later realized had colitis, celiac disease, pancreatic insufficiency and other GI diseases.
I guess I don’t see this adding anything new or novel to the “to gluten or not to gluten” debate. In fact, I think it just adds another layer of expert opinion “evidence” that judgmental laypeople utilize to fuel their judgement and criticism of people who are trying anything and everything to feel better.
If you are truly concerned about the health of those who are avoiding gluten without a diagnosis (i.e., because of potential vitamin deficiencies, etc.), I think it would be constructive to provide specific education on how to mitigate those risks within their lifestyle choices with supplements and the like, even partnering with a registered dietitian who can co-author educational articles with you.
I say this because I struggled for years trying to manage multiple symptoms by adhering to a gluten-free diet, and the judgement, ignorance, and disregard I got from folks in real life was degrading and made me doubt my own experience (To be clear, the worst judgement I got was from laypeople reading articles like yours. My providers were always supportive).
I figured, why do I do this without a diagnosis when it’s so expensive, difficult, and people are so freaking rude about it? So I started a gluten challenge under the supervision of a provider at MNGI. Imagine my chagrin yet relief when my first serology on my gluten challenge was negative! Everyone was right. Never mind that my GI symptoms persisted. I have a history of PTSD. It was all in my head!
…then The Migraine. The photophobia. The phonophobia. The nauseating hyperosmia that lasted for weeks. The steroid burst required to break the status migraine and the neurologist who wanted to prescribe three other medications to manage my migraines the day she met me.
The second serology that was positive. The Marsh Type 3 changes on biopsy.
It was hell. I put myself through hell to get a diagnosis largely because of social pressure from laypeople who read articles like yours and figured a doctor must know more about what gluten does to people’s bodies than I know about what it does to my own.
I think writing like this is more likely to do harm than to help.
Dat, thanks so much for reaching out. You have very passionately expressed the frustration that you have experienced on your medical journey. Here an excerpt from my post: “ We all do stuff that we believe benefits us, even if there is no scientific support. If you feel better avoiding a food item, then of course you should do so.”. I take care of many people who have discovered that a particular food item or some other exposure causes them distress. Of course, I support the healing pathways that they have forged for themselves. Who wouldn’t? It is also true that many folks make a variety of dietary choices to promote wellness, even if the avoided items are not directly causing overt distress. And, since medicine is a scientific discipline, we should all support subjecting medical treatments including nutritional therapies to conventional scientific testing to verify efficacy. Indeed, this is how medical progress occurs. As we all have seen over the years, many medical treatments that we thought were effective or just seemed logical have been set aside after proper studies were undertaken. Once again, I appreciate your thoughtful comments.
Hi Chloe, you may be correct that I view the issue through the lens of a practicing physician. By training, I rely on data and evidence to govern my decisions realizing that many clinical circumstances have not been studies and I have to rely instead on my judgement and experience. I certainly feel that considering the wider implications of health care policy - as you suggest - is an important voice in the conversation I certainly wish you well.
Thank you for your thoughtful responses, Dr. Kirsch.
I’d like to gently return to the social implications of expert commentary—particularly how it can shape public perception of those living with “murky” or contested conditions like gluten intolerance or early celiac disease. Research from mental health, autoimmune conditions, and science communication has shown that public opinion, shaped in part by expert voices, plays a powerful role in how patients are treated—not just by doctors, but by their families, peers, and even themselves. When an expert frames gluten avoidance as largely unnecessary or faddish, it can inadvertently license others to express doubt, ridicule, or dismissal—sometimes toward people who are making that choice to mitigate very real suffering.
And the suffering required to obtain a celiac diagnosis is no small thing. The current diagnostic process depends on demonstrating physiological damage from dietary gluten exposure—often via endoscopic biopsy. This means that to get a diagnosis, a patient must eat gluten long enough to cause measurable harm to their small intestine. In practice, this can mean months or even years of debilitating symptoms: fatigue, GI distress, anemia, neurological effects, joint pain, and more. Many are forced to stop the challenge early because the impact is so severe. Others are misdiagnosed with IBS, anxiety, or functional disorders, often after years of being told their symptoms aren’t real.
While your article raises a valid concern about nutrient deficiencies or potential heavy metal exposure in a poorly designed gluten-free diet, I believe there’s another side that deserves equal attention: the nutritional and immunological cost of not removing gluten when it is causing harm. Untreated celiac disease can lead to long-term malabsorption, growth delays, bone density loss, infertility, and an elevated risk of multiple secondary autoimmune conditions, including Type 1 diabetes and autoimmune thyroid disease. The harm is real—and often invisible to those looking in from the outside.
As a practicing physician and public writer, you’re in a uniquely powerful position to address both realities. You could continue raising concerns about nutrient balance and gluten-free processed foods—while also offering clear, compassionate guidance on how to go gluten-free safely and why someone might make that choice even in the absence of a definitive diagnosis. Doing so could validate the real risks while helping readers better support loved ones who’ve chosen this path, especially when the science is still catching up to lived experience.
Thanks again for engaging. I know you didn’t set out to cause harm—but when science speaks publicly, it has more than clinical weight. It shapes stories, relationships, and care-seeking behavior. And with a few shifts in framing, it can also open doors to deeper understanding and compassion.
Hi Chloe, I have only my phone with me so my response will be more limited. I read your comment quite carefully and completely understand your well expressed viewpoints. I do my best in my practice and in my life to be open-minded and to give everyone a fair hearing. I am hopeful that I have improved in this regard with accumulated life experience. Ultimately, I support whatever measure is in the patient’s interest and delivers comfort or healing, even in the absence of scientific support. You pointed out, there is much murkiness in the medical profession. But, as I have stated, our profession must seek and be guided by medical evidence in addition to the physician’s and the patient’s personal experiences. I wish you well.
Thank you again for your thoughtful reply. I want to clarify that I’m not arguing against science—I’m asking for a broader integration of it.
I fully support evidence-based practice and agree that science should guide care. What I’m pointing to is that social sciences—fields like health communication, stigma research, and medical anthropology—also produce valuable, evidence-based insights. These help explain how public health messages are received and how stigma and social norms influence patient outcomes, especially in “murky” diagnostic territory.
My hope is to elevate the conversation, not undermine it—by encouraging synthesis across disciplines. That way, we can speak to both physiological truth and social consequence. Thank you again and I wish you well.
As a registered nurse who is a big believer in evidence based practices, I am shocked that I am seeing improvement in my likely long covid symptoms by removing gluten. I considered most gluten free promotions to be non science based, since there is no good science I could find to provide a link between gluten and my severe “allergy” symptoms. But, a Dr suggested it and I tried it. I thought she sounded like a quack, but figured I had nothing to lose.
Thx, Ann. I think that gluten intolerance and IBS have overlapping symptoms and it can be challenging to distinguish one from the other. And it's more complex since neither of these conditions have a reliable diagnostic test available. Thx for reaching out.
Thank you. It's a huge frustration to see gluten free lumped into IBS diets, and confused with FODMAPS, and just so hyped but poorly understood.
Thx for the comment, Heather. The lines separating IBS from various food item intolerances can be indistinct. And as every gastroenterologist will admit, there are patients whom we have assigned a diagnosis of IBS whom we later realized had colitis, celiac disease, pancreatic insufficiency and other GI diseases.
Directed here from Reddit.
I guess I don’t see this adding anything new or novel to the “to gluten or not to gluten” debate. In fact, I think it just adds another layer of expert opinion “evidence” that judgmental laypeople utilize to fuel their judgement and criticism of people who are trying anything and everything to feel better.
If you are truly concerned about the health of those who are avoiding gluten without a diagnosis (i.e., because of potential vitamin deficiencies, etc.), I think it would be constructive to provide specific education on how to mitigate those risks within their lifestyle choices with supplements and the like, even partnering with a registered dietitian who can co-author educational articles with you.
I say this because I struggled for years trying to manage multiple symptoms by adhering to a gluten-free diet, and the judgement, ignorance, and disregard I got from folks in real life was degrading and made me doubt my own experience (To be clear, the worst judgement I got was from laypeople reading articles like yours. My providers were always supportive).
I figured, why do I do this without a diagnosis when it’s so expensive, difficult, and people are so freaking rude about it? So I started a gluten challenge under the supervision of a provider at MNGI. Imagine my chagrin yet relief when my first serology on my gluten challenge was negative! Everyone was right. Never mind that my GI symptoms persisted. I have a history of PTSD. It was all in my head!
…then The Migraine. The photophobia. The phonophobia. The nauseating hyperosmia that lasted for weeks. The steroid burst required to break the status migraine and the neurologist who wanted to prescribe three other medications to manage my migraines the day she met me.
The second serology that was positive. The Marsh Type 3 changes on biopsy.
It was hell. I put myself through hell to get a diagnosis largely because of social pressure from laypeople who read articles like yours and figured a doctor must know more about what gluten does to people’s bodies than I know about what it does to my own.
I think writing like this is more likely to do harm than to help.
Dat, thanks so much for reaching out. You have very passionately expressed the frustration that you have experienced on your medical journey. Here an excerpt from my post: “ We all do stuff that we believe benefits us, even if there is no scientific support. If you feel better avoiding a food item, then of course you should do so.”. I take care of many people who have discovered that a particular food item or some other exposure causes them distress. Of course, I support the healing pathways that they have forged for themselves. Who wouldn’t? It is also true that many folks make a variety of dietary choices to promote wellness, even if the avoided items are not directly causing overt distress. And, since medicine is a scientific discipline, we should all support subjecting medical treatments including nutritional therapies to conventional scientific testing to verify efficacy. Indeed, this is how medical progress occurs. As we all have seen over the years, many medical treatments that we thought were effective or just seemed logical have been set aside after proper studies were undertaken. Once again, I appreciate your thoughtful comments.
Your response does not speak to the social impact that concerns me most.
Hi Chloe, you may be correct that I view the issue through the lens of a practicing physician. By training, I rely on data and evidence to govern my decisions realizing that many clinical circumstances have not been studies and I have to rely instead on my judgement and experience. I certainly feel that considering the wider implications of health care policy - as you suggest - is an important voice in the conversation I certainly wish you well.
Thank you for your thoughtful responses, Dr. Kirsch.
I’d like to gently return to the social implications of expert commentary—particularly how it can shape public perception of those living with “murky” or contested conditions like gluten intolerance or early celiac disease. Research from mental health, autoimmune conditions, and science communication has shown that public opinion, shaped in part by expert voices, plays a powerful role in how patients are treated—not just by doctors, but by their families, peers, and even themselves. When an expert frames gluten avoidance as largely unnecessary or faddish, it can inadvertently license others to express doubt, ridicule, or dismissal—sometimes toward people who are making that choice to mitigate very real suffering.
And the suffering required to obtain a celiac diagnosis is no small thing. The current diagnostic process depends on demonstrating physiological damage from dietary gluten exposure—often via endoscopic biopsy. This means that to get a diagnosis, a patient must eat gluten long enough to cause measurable harm to their small intestine. In practice, this can mean months or even years of debilitating symptoms: fatigue, GI distress, anemia, neurological effects, joint pain, and more. Many are forced to stop the challenge early because the impact is so severe. Others are misdiagnosed with IBS, anxiety, or functional disorders, often after years of being told their symptoms aren’t real.
While your article raises a valid concern about nutrient deficiencies or potential heavy metal exposure in a poorly designed gluten-free diet, I believe there’s another side that deserves equal attention: the nutritional and immunological cost of not removing gluten when it is causing harm. Untreated celiac disease can lead to long-term malabsorption, growth delays, bone density loss, infertility, and an elevated risk of multiple secondary autoimmune conditions, including Type 1 diabetes and autoimmune thyroid disease. The harm is real—and often invisible to those looking in from the outside.
As a practicing physician and public writer, you’re in a uniquely powerful position to address both realities. You could continue raising concerns about nutrient balance and gluten-free processed foods—while also offering clear, compassionate guidance on how to go gluten-free safely and why someone might make that choice even in the absence of a definitive diagnosis. Doing so could validate the real risks while helping readers better support loved ones who’ve chosen this path, especially when the science is still catching up to lived experience.
Thanks again for engaging. I know you didn’t set out to cause harm—but when science speaks publicly, it has more than clinical weight. It shapes stories, relationships, and care-seeking behavior. And with a few shifts in framing, it can also open doors to deeper understanding and compassion.
Hi Chloe, I have only my phone with me so my response will be more limited. I read your comment quite carefully and completely understand your well expressed viewpoints. I do my best in my practice and in my life to be open-minded and to give everyone a fair hearing. I am hopeful that I have improved in this regard with accumulated life experience. Ultimately, I support whatever measure is in the patient’s interest and delivers comfort or healing, even in the absence of scientific support. You pointed out, there is much murkiness in the medical profession. But, as I have stated, our profession must seek and be guided by medical evidence in addition to the physician’s and the patient’s personal experiences. I wish you well.
Thank you again for your thoughtful reply. I want to clarify that I’m not arguing against science—I’m asking for a broader integration of it.
I fully support evidence-based practice and agree that science should guide care. What I’m pointing to is that social sciences—fields like health communication, stigma research, and medical anthropology—also produce valuable, evidence-based insights. These help explain how public health messages are received and how stigma and social norms influence patient outcomes, especially in “murky” diagnostic territory.
My hope is to elevate the conversation, not undermine it—by encouraging synthesis across disciplines. That way, we can speak to both physiological truth and social consequence. Thank you again and I wish you well.
As a registered nurse who is a big believer in evidence based practices, I am shocked that I am seeing improvement in my likely long covid symptoms by removing gluten. I considered most gluten free promotions to be non science based, since there is no good science I could find to provide a link between gluten and my severe “allergy” symptoms. But, a Dr suggested it and I tried it. I thought she sounded like a quack, but figured I had nothing to lose.
I notice you don’t mention IBS. Any insight on that?
Thx, Ann. I think that gluten intolerance and IBS have overlapping symptoms and it can be challenging to distinguish one from the other. And it's more complex since neither of these conditions have a reliable diagnostic test available. Thx for reaching out.