Gluten in Epidural?

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facetguy

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Does anyone know if the injectant for epidurals is gluten-free? I don't know why gluten would be in an epidural but gluten seems to show up everywhere these days.

I ask because I have a pregnant patient with Celiac (very reactive to gluten) who asked me if I knew whether the epidural she may get during delivery contains gluten.

Anybody seen any chunks of wheat floating around in the syringe? :)

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Personally, I think this whole gluten-free thing is the latest fad to sell books, like South Beach diet, Atkins, low trans-fat, low cholesterol, etc, etc. and will be gone in 2 years after the next one comes along. Why don't I think of this stuff and retire on my best seller?

I love how they're marketing tons of things now as "gluten-free" that never even had gluten in them to begin with.

"gluten free" water

"gluten free" epidurals

Heck, maybe my patients will come off opiates if I offer them "gluten free NSAIDs"!!!
 
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Gluten free is a pretty big deal for those with celiac sprue. I doubt anything we inject through epidurals has gluten. Even if it did, I doubt it would affect intestinal villi if injected into the epidural space.
Gluten free items for non celiac sprue patients seems gimmicky.
 
we have strictly lacto-ova epidurals, but offer a vegan option those interested.

Can I get some barley grass and sprouts with that? Freshly juiced, please.
 
Personally, I think this whole gluten-free thing is the latest fad to sell books, like South Beach diet, Atkins, low trans-fat, low cholesterol, etc, etc. and will be gone in 2 years after the next one comes along. Why don't I think of this stuff and retire on my best seller?

I love how they're marketing tons of things now as "gluten-free" that never even had gluten in them to begin with.

"gluten free" water

"gluten free" epidurals

Heck, maybe my patients will come off opiates if I offer them "gluten free NSAIDs"!!!

Gluten free is a pretty big deal for those with celiac sprue. I doubt anything we inject through epidurals has gluten. Even if it did, I doubt it would affect intestinal villi if injected into the epidural space.
Gluten free items for non celiac sprue patients seems gimmicky.

I disagree here. No doubt there's been a lot of marketing trying to take advantage of increasing gluten awareness. But there's also increasing research interest in this area and I think we'll continue to learn more and more that 'non-celiac gluten sensitivity' is its own entity and causes problems for some people.

This paper from last year demonstrated that celiac disease and gluten sensitivity differ from each other:
http://www.ncbi.nlm.nih.gov/pubmed/21392369

One of the issues has been in testing. As it stands now, standard blood testing is very good for true celiac cases but is unreliable for more subtle cases of gluten sensitivity. As testing improves, and there is movement in this direction already, I think better recognition of these more subtle cases will occur.
 
I disagree here. No doubt there's been a lot of marketing trying to take advantage of increasing gluten awareness. But there's also increasing research interest in this area and I think we'll continue to learn more and more that 'non-celiac gluten sensitivity' is its own entity and causes problems for some people.

This paper from last year demonstrated that celiac disease and gluten sensitivity differ from each other:
http://www.ncbi.nlm.nih.gov/pubmed/21392369

One of the issues has been in testing. As it stands now, standard blood testing is very good for true celiac cases but is unreliable for more subtle cases of gluten sensitivity. As testing improves, and there is movement in this direction already, I think better recognition of these more subtle cases will occur.

In the old days we used to call folks with claimed gluten sensitivity neurotic. Oh wait, I still do:)
 
I disagree here. No doubt there's been a lot of marketing trying to take advantage of increasing gluten awareness. But there's also increasing research interest in this area and I think we'll continue to learn more and more that 'non-celiac gluten sensitivity' is its own entity and causes problems for some people.

This paper from last year demonstrated that celiac disease and gluten sensitivity differ from each other:
http://www.ncbi.nlm.nih.gov/pubmed/21392369

One of the issues has been in testing. As it stands now, standard blood testing is very good for true celiac cases but is unreliable for more subtle cases of gluten sensitivity. As testing improves, and there is movement in this direction already, I think better recognition of these more subtle cases will occur.

In the old days we used to call folks with claimed gluten sensitivity neurotic. Oh wait, I still do:)

Just programmed my phone to remind me to bump this thread in exactly 2 years. Let's see if I actually do. Then we'll see if it's still all the rage.
 
Just programmed my phone to remind me to bump this thread in exactly 2 years. Let's see if I actually do. Then we'll see if it's still all the rage.

Chances are you'll have a new phone before that, but sounds like a good idea. See you in 2 years.
 
Gluten free is a pretty big deal for those with celiac sprue. I doubt anything we inject through epidurals has gluten. Even if it did, I doubt it would affect intestinal villi if injected into the epidural space.
Gluten free items for non celiac sprue patients seems gimmicky.

You guys know this better than I, but isn't there systemic absorption of injected substances? I'm thinking of epidural steroid injections altering blood glucose in diabetics. If this is the case, couldn't we see an immune reaction to gluten injected through epidurals?
 
You guys know this better than I, but isn't there systemic absorption of injected substances? I'm thinking of epidural steroid injections altering blood glucose in diabetics. If this is the case, couldn't we see an immune reaction to gluten injected through epidurals?

Dood! Your crazy patients are making you crazy. We are going to have an intervention and rescue you.
 
Dood! Your crazy patients are making you crazy. We are going to have an intervention and rescue you.

Ha! Perhaps I need a vacation.

(In my defense, this woman is very normal but also very reactive to gluten and doesn't want to deal with a major celiac flare-up while caring for her first baby.)
 
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Chances are you'll have a new phone before that, but sounds like a good idea. See you in 2 years.

What are you talking about, "phones"? "Phones", hell, even smartphones by then will be a laughably ancient relic of the past. All communications will be telepathic through the ether, if you can afford the data plan. Anyone with a "phone" by then will be considered a complete dork, like the guy down the street from me that still wears his Michael Jackson red leather jacket with tons of zippers on it! Phones. LOL
 
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this is the exact attitude that causes thousands of patients unnecessary suffering, due to symptoms that aren't being taken seriously and arrogant, know-it-all doctors who won't listen.

true story - I've always been healthy, an athlete, ate really well, etc. about a year and a half ago, I felt like my health just started deteriorating for no reason. I had just about every GI symptom you can think of, usually many, and they were relentless and sometimes very severe. I was in extreme discomfort and often pain every single day, despite how much I slept, healthy I ate, water I drank, etc etc etc. Along with this, my energy level dropped to the point where I wanted to go to bed more than do ANYTHING literally all but maybe one hour a day, and could barely make myself work out or go out with friends. I started getting headaches, my head just felt fuzzy all the time - I was miserable, and despite multiple tests and theories (mostly thyroid) from several doctors no one could find anything wrong and settled on an IBS diagnosis.

well finally, after a suggestion/success story from a coworker, I decided to cut out gluten (I had already cut out fructose, and dairy, the latter helped slightly with GI but not much else.) that was about 4 months ago, and honestly I feel better today than I ever thought I would again. what is most striking is my energy level - it's soo nice to want to do things again and not sleep my whole weekends away. I was recently tested for celiac's, but as I've been gluten-free it came back negative, as it would either way. so maybe I'm a Celiac, or maybe I'm one of hypochondriac fad-dieters that everyone is making fun of with a gluten sensitivity. but I can tell you I haven't lost one pound, don't care if I do, miss drinking beer like it's my job, and have never even thought about being vegan or doing a wheatgrass shot or any other "healthy" fad.

I do agree that "gluten-free" as a diet had become a little trendy, but if it means making gluten-free foods more accessible for those who truly need them, then I'm all about it. and as for the comment about inherently gluten-free foods being labeled as such, you would be sooo surprised how much gluten ends up where it doesn't belong, and honestly such labels are a godsend for many.

I didn't intend to write an autobiography here, but I really felt the need to offer an alternative perspective of a future doctor and also patient who has been really hurt my doctors who think the same way as many posters on here. if you guys want to be effective, compassionate doctors, you need to drop this attitude real quick and stop jumping to conclusions. obviously about way more than gluten.
 
this is the exact attitude that causes thousands of patients unnecessary suffering, due to symptoms that aren't being taken seriously and arrogant, know-it-all doctors who won't listen.

true story - I've always been healthy, an athlete, ate really well, etc. about a year and a half ago, I felt like my health just started deteriorating for no reason. I had just about every GI symptom you can think of, usually many, and they were relentless and sometimes very severe. I was in extreme discomfort and often pain every single day, despite how much I slept, healthy I ate, water I drank, etc etc etc. Along with this, my energy level dropped to the point where I wanted to go to bed more than do ANYTHING literally all but maybe one hour a day, and could barely make myself work out or go out with friends. I started getting headaches, my head just felt fuzzy all the time - I was miserable, and despite multiple tests and theories (mostly thyroid) from several doctors no one could find anything wrong and settled on an IBS diagnosis.

well finally, after a suggestion/success story from a coworker, I decided to cut out gluten (I had already cut out fructose, and dairy, the latter helped slightly with GI but not much else.) that was about 4 months ago, and honestly I feel better today than I ever thought I would again. what is most striking is my energy level - it's soo nice to want to do things again and not sleep my whole weekends away. I was recently tested for celiac's, but as I've been gluten-free it came back negative, as it would either way. so maybe I'm a Celiac, or maybe I'm one of hypochondriac fad-dieters that everyone is making fun of with a gluten sensitivity. but I can tell you I haven't lost one pound, don't care if I do, miss drinking beer like it's my job, and have never even thought about being vegan or doing a wheatgrass shot or any other "healthy" fad.

I do agree that "gluten-free" as a diet had become a little trendy, but if it means making gluten-free foods more accessible for those who truly need them, then I'm all about it. and as for the comment about inherently gluten-free foods being labeled as such, you would be sooo surprised how much gluten ends up where it doesn't belong, and honestly such labels are a godsend for many.

I didn't intend to write an autobiography here, but I really felt the need to offer an alternative perspective of a future doctor and also patient who has been really hurt my doctors who think the same way as many posters on here. if you guys want to be effective, compassionate doctors, you need to drop this attitude real quick and stop jumping to conclusions. obviously about way more than gluten.

I don't doubt that celiac disease is real. No one does. I also don't doubt that there are possibly other forms of sensitivity to this substance.

What does irritate my is the businessmen that rip people off selling books, TV shows, and new products based on telling people some new trend diagnosis is the cause of all their problems before it's proven scientifically.

One article in some magazine is not proof. One or two or more poorly done scientific studies are not proof. Even one or two very well done scientific studies can be misinterpreted.

You've been helped by a gluten free diet? Great. I don't doubt it for a second. Will many sleazy businessmen rip off lots of people by telling them gluten free is the next cure-all? Yes. It's healthy to be skeptical.
 
this is the exact attitude that causes thousands of patients unnecessary suffering, due to symptoms that aren't being taken seriously and arrogant, know-it-all doctors who won't listen.

true story - I've always been healthy, an athlete, ate really well, etc. about a year and a half ago, I felt like my health just started deteriorating for no reason. I had just about every GI symptom you can think of, usually many, and they were relentless and sometimes very severe. I was in extreme discomfort and often pain every single day, despite how much I slept, healthy I ate, water I drank, etc etc etc. Along with this, my energy level dropped to the point where I wanted to go to bed more than do ANYTHING literally all but maybe one hour a day, and could barely make myself work out or go out with friends. I started getting headaches, my head just felt fuzzy all the time - I was miserable, and despite multiple tests and theories (mostly thyroid) from several doctors no one could find anything wrong and settled on an IBS diagnosis.

well finally, after a suggestion/success story from a coworker, I decided to cut out gluten (I had already cut out fructose, and dairy, the latter helped slightly with GI but not much else.) that was about 4 months ago, and honestly I feel better today than I ever thought I would again. what is most striking is my energy level - it's soo nice to want to do things again and not sleep my whole weekends away. I was recently tested for celiac's, but as I've been gluten-free it came back negative, as it would either way. so maybe I'm a Celiac, or maybe I'm one of hypochondriac fad-dieters that everyone is making fun of with a gluten sensitivity. but I can tell you I haven't lost one pound, don't care if I do, miss drinking beer like it's my job, and have never even thought about being vegan or doing a wheatgrass shot or any other "healthy" fad.

I do agree that "gluten-free" as a diet had become a little trendy, but if it means making gluten-free foods more accessible for those who truly need them, then I'm all about it. and as for the comment about inherently gluten-free foods being labeled as such, you would be sooo surprised how much gluten ends up where it doesn't belong, and honestly such labels are a godsend for many.

I didn't intend to write an autobiography here, but I really felt the need to offer an alternative perspective of a future doctor and also patient who has been really hurt my doctors who think the same way as many posters on here. if you guys want to be effective, compassionate doctors, you need to drop this attitude real quick and stop jumping to conclusions. obviously about way more than gluten.

a collective sigh just went up across the internet.

maybe that is a bit of arrogance. or maybe, its thousands of years of combined experience in dealing with and treating patients. patients who believe anything and everything is causing their pain. i applaud your optimism, and definitely try to stay bright-eyed and bushy-tailed. it is difficult to stay that way once you have been doing this for a while. but before you comment on how docs are all know-it-alls and don't listen, get yourself into medical school. treat thousands upon thousands of patients. then you can be the best doctor in the world and you can realistically have a beef.
 
to clarify: I am not in any way saying that you need to take everything that patients say as cold hard fact - it would indeed be foolish to not approach one's interactions with patients with a healthy amount of skepticism. it is, also, just as foolish to automatically and completely dismiss anything that has not been tried and true "scientifically proven", especially with mounting anecdotal and scientific reasons to believe we might not know the whole story.

you can justify your attitude toward patients all you want, and maybe you are "justified", and maybe I will end up just like you - but that doesn't mean there's not merit in trying to understand an alternate perspective

and skepticism toward businessmen / marketing gimmicks and toward patients' symptoms are very different issues that are lacking necessary separation at times in this discussion
 
to clarify: I am not in any way saying that you need to take everything that patients say as cold hard fact - it would indeed be foolish to not approach one's interactions with patients with a healthy amount of skepticism. it is, also, just as foolish to automatically and completely dismiss anything that has not been tried and true "scientifically proven", especially with mounting anecdotal and scientific reasons to believe we might not know the whole story.

you can justify your attitude toward patients all you want, and maybe you are "justified", and maybe I will end up just like you - but that doesn't mean there's not merit in trying to understand an alternate perspective

and skepticism toward businessmen / marketing gimmicks and toward patients' symptoms are very different issues that are lacking necessary separation at times in this discussion


well stated
 
this is the exact attitude that causes thousands of patients unnecessary suffering, due to symptoms that aren't being taken seriously and arrogant, know-it-all doctors who won't listen.

true story - I've always been healthy, an athlete, ate really well, etc. about a year and a half ago, I felt like my health just started deteriorating for no reason. I had just about every GI symptom you can think of, usually many, and they were relentless and sometimes very severe. I was in extreme discomfort and often pain every single day, despite how much I slept, healthy I ate, water I drank, etc etc etc. Along with this, my energy level dropped to the point where I wanted to go to bed more than do ANYTHING literally all but maybe one hour a day, and could barely make myself work out or go out with friends. I started getting headaches, my head just felt fuzzy all the time - I was miserable, and despite multiple tests and theories (mostly thyroid) from several doctors no one could find anything wrong and settled on an IBS diagnosis.

well finally, after a suggestion/success story from a coworker, I decided to cut out gluten (I had already cut out fructose, and dairy, the latter helped slightly with GI but not much else.) that was about 4 months ago, and honestly I feel better today than I ever thought I would again. what is most striking is my energy level - it's soo nice to want to do things again and not sleep my whole weekends away. I was recently tested for celiac's, but as I've been gluten-free it came back negative, as it would either way. so maybe I'm a Celiac, or maybe I'm one of hypochondriac fad-dieters that everyone is making fun of with a gluten sensitivity. but I can tell you I haven't lost one pound, don't care if I do, miss drinking beer like it's my job, and have never even thought about being vegan or doing a wheatgrass shot or any other "healthy" fad.

I do agree that "gluten-free" as a diet had become a little trendy, but if it means making gluten-free foods more accessible for those who truly need them, then I'm all about it. and as for the comment about inherently gluten-free foods being labeled as such, you would be sooo surprised how much gluten ends up where it doesn't belong, and honestly such labels are a godsend for many.

I didn't intend to write an autobiography here, but I really felt the need to offer an alternative perspective of a future doctor and also patient who has been really hurt my doctors who think the same way as many posters on here. if you guys want to be effective, compassionate doctors, you need to drop this attitude real quick and stop jumping to conclusions. obviously about way more than gluten.

Cue the violins...
 
does anyone know what Dr. Oz thinks on the matter?

until we hear from the Wizard we will not have an answer.
 
to clarify: I am not in any way saying that you need to take everything that patients say as cold hard fact - it would indeed be foolish to not approach one's interactions with patients with a healthy amount of skepticism. it is, also, just as foolish to automatically and completely dismiss anything that has not been tried and true "scientifically proven", especially with mounting anecdotal and scientific reasons to believe we might not know the whole story.

you can justify your attitude toward patients all you want, and maybe you are "justified", and maybe I will end up just like you - but that doesn't mean there's not merit in trying to understand an alternate perspective

and skepticism toward businessmen / marketing gimmicks and toward patients' symptoms are very different issues that are lacking necessary separation at times in this discussion

when you study medicine, you will eventually learn about something called the placebo response.

the true incidence of celiac disease is probably in the 1% range in terms of percentage, but if you browse the internet, talk to people, etc., it is all the craze. just as the low carb diets were before (in terms of weight loss, of course), and the all carb diet before, and the grapefruit diet (tho in those people who vomit from grapefruit, im sure it worked), or the other fad diets and treatments and illnesses out there.

Interestingly, placebo effect is MUCH higher than the celiac disease, and is dependent on the condition, use, etc. At least a portion of patients who have no celiac sproblems that improve with gluten free diets are feeling the effects of this placebo effect.

If it works for you, go for it. no harm done, obviously. but physicians are rightfully skeptical about fad cures and new illnesses and new meds that cure everything but are not found to correlate to valid medical literature.
 
this is the exact attitude that causes thousands of patients unnecessary suffering, due to symptoms that aren't being taken seriously and arrogant, know-it-all doctors who won't listen.

true story - I've always been healthy, an athlete, ate really well, etc. about a year and a half ago, I felt like my health just started deteriorating for no reason. I had just about every GI symptom you can think of, usually many, and they were relentless and sometimes very severe. I was in extreme discomfort and often pain every single day, despite how much I slept, healthy I ate, water I drank, etc etc etc. Along with this, my energy level dropped to the point where I wanted to go to bed more than do ANYTHING literally all but maybe one hour a day, and could barely make myself work out or go out with friends. I started getting headaches, my head just felt fuzzy all the time - I was miserable, and despite multiple tests and theories (mostly thyroid) from several doctors no one could find anything wrong and settled on an IBS diagnosis.

well finally, after a suggestion/success story from a coworker, I decided to cut out gluten (I had already cut out fructose, and dairy, the latter helped slightly with GI but not much else.) that was about 4 months ago, and honestly I feel better today than I ever thought I would again. what is most striking is my energy level - it's soo nice to want to do things again and not sleep my whole weekends away. I was recently tested for celiac's, but as I've been gluten-free it came back negative, as it would either way. so maybe I'm a Celiac, or maybe I'm one of hypochondriac fad-dieters that everyone is making fun of with a gluten sensitivity. but I can tell you I haven't lost one pound, don't care if I do, miss drinking beer like it's my job, and have never even thought about being vegan or doing a wheatgrass shot or any other "healthy" fad.

I do agree that "gluten-free" as a diet had become a little trendy, but if it means making gluten-free foods more accessible for those who truly need them, then I'm all about it. and as for the comment about inherently gluten-free foods being labeled as such, you would be sooo surprised how much gluten ends up where it doesn't belong, and honestly such labels are a godsend for many.

I didn't intend to write an autobiography here, but I really felt the need to offer an alternative perspective of a future doctor and also patient who has been really hurt my doctors who think the same way as many posters on here. if you guys want to be effective, compassionate doctors, you need to drop this attitude real quick and stop jumping to conclusions. obviously about way more than gluten.

Are pre-med or Pre Chiropractic?
 
Are pre-med or Pre Chiropractic?

neither actually, I'm just a hippie philosophy major who practices yoga and acupuncture and thinks all health ailments can be cured by praying to one of my many gods. and avoiding gluten, of course. you're ridiculous.

if you guys wish to continue on making your mostly valid/uncontested points then feel free, but don't make what I said out to be intended for more than it was. the extremes and absolutes on BOTH SIDES can be detrimental. take my perspective for what it's worth and move on.
 
- unless you just graduated, when you learned in medical school about celiac disease is very outdated and likely quite incorrect, ask your local GI physician


- to answer the original question, it is highly unlikely there is any gluten in the medications used for an epidural. apart from obvious sources, it may be present in certain flavorings or thickeners, neither of which would have a place in those medications
 
I can't find anyone who will take my Irritable Doctor Syndrome seriously. The only thing that works is oxy-something and nobody will prescribe it. I can't even get a jury duty excuse.
 
Are pre-med or Pre Chiropractic?

What's that supposed to mean? Only wacky pre-chiro students would "believe" in something as crazy as gluten sensitivity?

The days of everyone being categorized as either full blown Celiac or completely normal are gone.
 
if you guys wish to continue on making your mostly valid/uncontested points then feel free, but don't make what I said out to be intended for more than it was.

please remember that the initial post that began this flame war was yours, where you categorically described the posters as "arrogant, know-it-all doctors who won't listen"and "you guys" .

this in light of posts by facetguy and Gern Blansten who obviously believe that gluten sensitivity exists...
 
when you study medicine, you will eventually learn about something called the placebo response.

the true incidence of celiac disease is probably in the 1% range in terms of percentage, but if you browse the internet, talk to people, etc., it is all the craze. just as the low carb diets were before (in terms of weight loss, of course), and the all carb diet before, and the grapefruit diet (tho in those people who vomit from grapefruit, im sure it worked), or the other fad diets and treatments and illnesses out there.

Interestingly, placebo effect is MUCH higher than the celiac disease, and is dependent on the condition, use, etc. At least a portion of patients who have no celiac sproblems that improve with gluten free diets are feeling the effects of this placebo effect.

If it works for you, go for it. no harm done, obviously. but physicians are rightfully skeptical about fad cures and new illnesses and new meds that cure everything but are not found to correlate to valid medical literature.

The power of the placebo response is undeniable. This study (http://www.ncbi.nlm.nih.gov/pubmed/22519894) indicates, however, that non-celiac gluten sensitivity patients are no different in terms of somatization personality. The two aren't exactly the same of course but related. FWIW.
 
Here are a few recent literature citations regarding the issue of gluten sensitivity (all 2012). It's obviously an issue in flux, so these aren't meant to be definitive. But the topic has legs and we'll have more answers as time marches on.

http://www.ncbi.nlm.nih.gov/pubmed/22149581
Title: "Gluten sensitivity: problems of an emerging condition separate from celiac disease"
"Gluten sensitivity appears to be emerging as a separate condition from celiac disease, yet no clear definition or diagnosis exists. As a result, patients with gluten sensitivity experience delayed diagnosis and continuing symptoms if they consume gluten."

http://www.ncbi.nlm.nih.gov/pubmed/22371218
Title: "New understanding of gluten sensitivity"
"Among gluten-related disorders, gluten sensitivity is an emerging entity that is characterized by a wide array of manifestations."
"Symptoms improve or disappear when gluten is withdrawn from the diet, and recur if gluten is reintroduced. Laboratory tests are usually unhelpful for diagnosis..."
"Further research is necessary to establish the main clinicopathological features of gluten sensitivity, thus enabling physicians to improve their management of the increasing number of patients who are sensitive to dietary gluten."

http://www.ncbi.nlm.nih.gov/pubmed/22237879
Title: "Celiac disease, wheat allergy, and gluten sensitivity: when gluten free is not a fad."
"Gluten sensitivity is a controversial subject, where patients who have neither CD nor wheat allergy have varying degrees of symptomatic improvement on the GFD."
"Defining the symptoms and biochemical markers for gluten-sensitive conditions is an important area for future investigations, and high-quality, large-scale randomized trials are needed to prove the true benefits of the GFD in this evolving field."

http://www.ncbi.nlm.nih.gov/pubmed/22313950
Title: "Spectrum of gluten-related disorders: consensus on new nomenclature and classification."
"Now we are observing another interesting phenomenon that is generating great confusion among health care professionals. The number of individuals embracing a gluten-free diet (GFD) appears much higher than the projected number of celiac disease patients"
"This trend is supported by the notion that, along with celiac disease, other conditions related to the ingestion of gluten have emerged as health care concerns. "
" This review will summarize our current knowledge about the three main forms of gluten reactions: allergic (wheat allergy), autoimmune (celiac disease, dermatitis herpetiformis and gluten ataxia) and possibly immune-mediated (gluten sensitivity)..."

http://www.ncbi.nlm.nih.gov/pubmed/22351716
Title: "Nonceliac gluten sensitivity: sense or sensibility?"
"Recent studies support the existence of a new condition, nonceliac gluten sensitivity, which manifests as intestinal or extraintestinal symptoms that improve or disappear after gluten withdrawal in individuals with normal small-bowel mucosa and negative results on serum antitransglutaminase and antiendomysial antibody testing."
 
i say we explore this...

this is the exact attitude that causes thousands of patients unnecessary suffering, due to symptoms that aren't being taken seriously and arrogant, know-it-all doctors who won't listen.

true story - I've always been healthy, an athlete, ate really well, etc. about a year and a half ago, I felt like my health just started deteriorating for no reason. I had just about every GI symptom you can think of, usually many, and they were relentless and sometimes very severe. I was in extreme discomfort and often pain every single day, despite how much I slept, healthy I ate, water I drank, etc etc etc. Along with this, my energy level dropped to the point where I wanted to go to bed more than do ANYTHING literally all but maybe one hour a day, and could barely make myself work out or go out with friends. I started getting headaches, my head just felt fuzzy all the time - I was miserable, and despite multiple tests and theories (mostly thyroid) from several doctors no one could find anything wrong and settled on an IBS diagnosis.

well finally, after a suggestion/success story from a coworker, I decided to cut out gluten (I had already cut out fructose, and dairy, the latter helped slightly with GI but not much else.) that was about 4 months ago, and honestly I feel better today than I ever thought I would again. what is most striking is my energy level - it's soo nice to want to do things again and not sleep my whole weekends away. I was recently tested for celiac's, but as I've been gluten-free it came back negative, as it would either way. so maybe I'm a Celiac, or maybe I'm one of hypochondriac fad-dieters that everyone is making fun of with a gluten sensitivity. but I can tell you I haven't lost one pound, don't care if I do, miss drinking beer like it's my job, and have never even thought about being vegan or doing a wheatgrass shot or any other "healthy" fad.

I do agree that "gluten-free" as a diet had become a little trendy, but if it means making gluten-free foods more accessible for those who truly need them, then I'm all about it. and as for the comment about inherently gluten-free foods being labeled as such, you would be sooo surprised how much gluten ends up where it doesn't belong, and honestly such labels are a godsend for many.

I didn't intend to write an autobiography here, but I really felt the need to offer an alternative perspective of a future doctor and also patient who has been really hurt my doctors who think the same way as many posters on here. if you guys want to be effective, compassionate doctors, you need to drop this attitude real quick and stop jumping to conclusions. obviously about way more than gluten.
 
Here are a few recent literature citations regarding the issue of gluten sensitivity (all 2012). It's obviously an issue in flux, so these aren't meant to be definitive. But the topic has legs and we'll have more answers as time marches on.

http://www.ncbi.nlm.nih.gov/pubmed/22149581
Title: "Gluten sensitivity: problems of an emerging condition separate from celiac disease"
"Gluten sensitivity appears to be emerging as a separate condition from celiac disease, yet no clear definition or diagnosis exists. As a result, patients with gluten sensitivity experience delayed diagnosis and continuing symptoms if they consume gluten."

http://www.ncbi.nlm.nih.gov/pubmed/22371218
Title: "New understanding of gluten sensitivity"
"Among gluten-related disorders, gluten sensitivity is an emerging entity that is characterized by a wide array of manifestations."
"Symptoms improve or disappear when gluten is withdrawn from the diet, and recur if gluten is reintroduced. Laboratory tests are usually unhelpful for diagnosis..."
"Further research is necessary to establish the main clinicopathological features of gluten sensitivity, thus enabling physicians to improve their management of the increasing number of patients who are sensitive to dietary gluten."

http://www.ncbi.nlm.nih.gov/pubmed/22237879
Title: "Celiac disease, wheat allergy, and gluten sensitivity: when gluten free is not a fad."
"Gluten sensitivity is a controversial subject, where patients who have neither CD nor wheat allergy have varying degrees of symptomatic improvement on the GFD."
"Defining the symptoms and biochemical markers for gluten-sensitive conditions is an important area for future investigations, and high-quality, large-scale randomized trials are needed to prove the true benefits of the GFD in this evolving field."

http://www.ncbi.nlm.nih.gov/pubmed/22313950
Title: "Spectrum of gluten-related disorders: consensus on new nomenclature and classification."
"Now we are observing another interesting phenomenon that is generating great confusion among health care professionals. The number of individuals embracing a gluten-free diet (GFD) appears much higher than the projected number of celiac disease patients"
"This trend is supported by the notion that, along with celiac disease, other conditions related to the ingestion of gluten have emerged as health care concerns. "
" This review will summarize our current knowledge about the three main forms of gluten reactions: allergic (wheat allergy), autoimmune (celiac disease, dermatitis herpetiformis and gluten ataxia) and possibly immune-mediated (gluten sensitivity)..."

http://www.ncbi.nlm.nih.gov/pubmed/22351716
Title: "Nonceliac gluten sensitivity: sense or sensibility?"
"Recent studies support the existence of a new condition, nonceliac gluten sensitivity, which manifests as intestinal or extraintestinal symptoms that improve or disappear after gluten withdrawal in individuals with normal small-bowel mucosa and negative results on serum antitransglutaminase and antiendomysial antibody testing."
.
 
The power of the placebo response is undeniable. This study (http://www.ncbi.nlm.nih.gov/pubmed/22519894) indicates, however, that non-celiac gluten sensitivity patients are no different in terms of somatization personality. The two aren't exactly the same of course but related. FWIW.

I have not seen or heard that placebo response to, for example, a drug had any correlation to somatization disorder or personality
 
Perhaps a random conteibution to the thread. Thoughts on a paleo diet or low simple/complex carb diet? The movie, on netflix, "Fathead" is an interesting watch.
 
The american college of rheumatology 1990 criteria for the classification of fibromyalgia
Frederick Wolfe MD1, et al.
To develop criteria for the classification of fibromyalgia, we studied 558 consecutive patients: 293 patients with fibromyalgia and 265 control patients. Interviews and examinations were performed by trained, blinded assessors. Control patients for the group with primary fibromyalgia were matched for age and sex, and limited to patients with disorders that could be confused with primary fibromyalgia. Control patients for the group with secondary-concomitant fibromyalgia were matched for age, sex, and concomitant rheumatic disorders. Widespread pain (axial plus upper and lower segment plus left- and right-sided pain) was found in 97.6% of all patients with fibromyalgia and in 69.1% of all control patients. The combination of widespread pain and mild or greater tenderness in ⩾ 11 of 18 tender point sites yielded a sensitivity of 88.4% and a specificity of 81.1%. Primary fibromyalgia patients and secondary-concomitant fibromyalgia patients did not differ statistically in any major study variable, and the criteria performed equally well in patients with and those without concomitant rheumatic conditions. The newly proposed criteria for the classification of fibromyalgia are 1) widespread pain in combination with 2) tenderness at 11 or more of the 18 specific tender point sites. No exclusions are made for the presence of concomitant radiographic or laboratory abnormalities. At the diagnostic or classification level, the distinction between primary fibromyalgia and secondary-concomitant fibromyalgia (as defined in the text) is abandoned.

Fast forward to 2008...

Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.

“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”
 

The fact that it's not settled science is why I said that it's not settled science and why I included those articles. I even said it's "obviously an issue in flux" and that the linked articles weren't meant to be definitive.

But even a cursory glance at the literature suggests there is increasing interest in this, and that was my point.
 
The american college of rheumatology 1990 criteria for the classification of fibromyalgia
Frederick Wolfe MD1, et al.
To develop criteria for the classification of fibromyalgia, we studied 558 consecutive patients: 293 patients with fibromyalgia and 265 control patients. Interviews and examinations were performed by trained, blinded assessors. Control patients for the group with primary fibromyalgia were matched for age and sex, and limited to patients with disorders that could be confused with primary fibromyalgia. Control patients for the group with secondary-concomitant fibromyalgia were matched for age, sex, and concomitant rheumatic disorders. Widespread pain (axial plus upper and lower segment plus left- and right-sided pain) was found in 97.6% of all patients with fibromyalgia and in 69.1% of all control patients. The combination of widespread pain and mild or greater tenderness in ⩾ 11 of 18 tender point sites yielded a sensitivity of 88.4% and a specificity of 81.1%. Primary fibromyalgia patients and secondary-concomitant fibromyalgia patients did not differ statistically in any major study variable, and the criteria performed equally well in patients with and those without concomitant rheumatic conditions. The newly proposed criteria for the classification of fibromyalgia are 1) widespread pain in combination with 2) tenderness at 11 or more of the 18 specific tender point sites. No exclusions are made for the presence of concomitant radiographic or laboratory abnormalities. At the diagnostic or classification level, the distinction between primary fibromyalgia and secondary-concomitant fibromyalgia (as defined in the text) is abandoned.

Fast forward to 2008...

Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.

“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”

I see your point. But the diagnostic criteria for fibromyalgia have always been very nebulous and arbitrary, with no hard diagnostic findings. With gluten-related disorders, on the other hand, we can already see descriptions in the literature of specific tissue changes, immune changes, etc. As the testing becomes more refined, objective diagnostic findings will become more readily available.
 
I have not seen or heard that placebo response to, for example, a drug had any correlation to somatization disorder or personality

There was a subtle theme developing that suggested that people who believe in or respond to a gluten-free diet may be a little...ummm....nuts.
 
okay, that makes sense. i hope that my posts were not construed in that direction, however.

not that it really matters... :)
 
There was a subtle theme developing that suggested that people who believe in or respond to a gluten-free diet may be a little...ummm....nuts.

The study quoted about somatization was under-powered and therefore very subject to type I and type II erros. Moreover, by not introducing a placebo arm and failing to blind the patients to the treatment - gluten drink - was a major design flaw. It is a study from which no conclusions can be drawn and one which, on the surface, is obviously discordant with
our collective clinical experience. Caveat emptor.

I contributed to that not so 'subtle' theme and I will stand by the insinuation. There is no way in h*ll that all of those who are now claiming to be 'gluten sensitive' are in fact measurably so. These ne'er-do-sicks are constantly shopping for a disease du jour. They read every blog out there and latch on to the latest fad, whatever it is: post-polio syndrome, IBS, CFS, FMS, IC, mild-TBI, and now gluten. And, as will occur, doctors and other salesmen pop up to reinforce their neuroses with special diets, clinic visits for testing, books, and other useless crap that reinforces the bad behavior in these folks searching for a disease to explain their dysfunction.

I appreciate your willingness to keep and open mind and to review the literature. But, cruising pubmed to find abstracts that support your thesis is not critical analysis of the literature. Your theme here is one of advocacy without evidence or clinical expertise, which I feel is enabling bad behavior. IMHO, American medicine doesn't have the time or money to waste on nebulous symptoms such as these:

" I started getting headaches, my head just felt fuzzy all the time - I was miserable, and despite multiple tests and theories (mostly thyroid) from several doctors no one could find anything wrong and settled on an IBS diagnosis."
 
Perhaps a random conteibution to the thread. Thoughts on a paleo diet or low simple/complex carb diet? The movie, on netflix, "Fathead" is an interesting watch.

it will clear your(ones) acne up... says so right there on their webpage!
 
it will clear your(ones) acne up... says so right there on their webpage!

For those not familiar with Paleo diet, Loren Cordain is well known in that community because he has done a lot of the research in this direction. He has published on the topic of diet and acne. This is one review from 2005; sorry I don't have full text:
http://www.ncbi.nlm.nih.gov/pubmed/16092796
 
The study quoted about somatization was under-powered and therefore very subject to type I and type II erros. Moreover, by not introducing a placebo arm and failing to blind the patients to the treatment - gluten drink - was a major design flaw. It is a study from which no conclusions can be drawn and one which, on the surface, is obviously discordant with
our collective clinical experience. Caveat emptor.

I contributed to that not so 'subtle' theme and I will stand by the insinuation. There is no way in h*ll that all of those who are now claiming to be 'gluten sensitive' are in fact measurably so. These ne'er-do-sicks are constantly shopping for a disease du jour. They read every blog out there and latch on to the latest fad, whatever it is: post-polio syndrome, IBS, CFS, FMS, IC, mild-TBI, and now gluten. And, as will occur, doctors and other salesmen pop up to reinforce their neuroses with special diets, clinic visits for testing, books, and other useless crap that reinforces the bad behavior in these folks searching for a disease to explain their dysfunction.

I appreciate your willingness to keep and open mind and to review the literature. But, cruising pubmed to find abstracts that support your thesis is not critical analysis of the literature. Your theme here is one of advocacy without evidence or clinical expertise, which I feel is enabling bad behavior. IMHO, American medicine doesn't have the time or money to waste on nebulous symptoms such as these:

" I started getting headaches, my head just felt fuzzy all the time - I was miserable, and despite multiple tests and theories (mostly thyroid) from several doctors no one could find anything wrong and settled on an IBS diagnosis."

I'm in no way saying that my 5 minute cruise of Pubmed proves anything; those abstracts were simply meant to point out to those who don't regularly read the gluten literature that there is indeed an evolution of thought with regard to this issue. The old ideas about celiac are changing as the understanding of the science is progressing.

There are experts in this area that do hours-long presentations on this topic. I am certainly no expert in this area, and linking 4 or 5 abstracts isn't intended to be a complete review of the science. But unless you've familiarized yourself with at least the existence of a large body of information related to this topic, I think it's disingenous to dismiss the whole thing out of hand and proclaim these patients crazy.

And a final point on the nature of the subjective complaints these patients often have. Medicine tends to be skeptical of these patients at least in part because there aren't any standardized treatments for them. In other words, medicine doesn't do well with these patients. I definitely understand your concerns that various hucksters take advantage of that; it's an unfortunate truth. But the suggestion that these people are therefore either nuts or simply improving via placebo because there's no way they could be making 'real' improvements outside of standard medical care...that's just a bit arrogant for me. This area of science is evolving, and eventually this knowledge will become a part of standard medical care. But in the meantime, I think it's unfair to label millions of people who improve their health via unconventional but reasonable means (e.g., gluten-free diet despite the absence of villous atrophy on biopsy or normal findings on current blood tests).
 
I'm in no way saying that my 5 minute cruise of Pubmed proves anything; those abstracts were simply meant to point out to those who don't regularly read the gluten literature that there is indeed an evolution of thought with regard to this issue. The old ideas about celiac are changing as the understanding of the science is progressing.

There are experts in this area that do hours-long presentations on this topic. I am certainly no expert in this area, and linking 4 or 5 abstracts isn't intended to be a complete review of the science. But unless you've familiarized yourself with at least the existence of a large body of information related to this topic, I think it's disingenous to dismiss the whole thing out of hand and proclaim these patients crazy.

And a final point on the nature of the subjective complaints these patients often have. Medicine tends to be skeptical of these patients at least in part because there aren't any standardized treatments for them. In other words, medicine doesn't do well with these patients. I definitely understand your concerns that various hucksters take advantage of that; it's an unfortunate truth. But the suggestion that these people are therefore either nuts or simply improving via placebo because there's no way they could be making 'real' improvements outside of standard medical care...that's just a bit arrogant for me. This area of science is evolving, and eventually this knowledge will become a part of standard medical care. But in the meantime, I think it's unfair to label millions of people who improve their health via unconventional but reasonable means (e.g., gluten-free diet despite the absence of villous atrophy on biopsy or normal findings on current blood tests).


Well said. Some folks here may want to consider putting away the shovel and realizing their initial posts were perhaps poorly worded albiet cathartic. If anyone should understand shades of grey it should be our speciality. If you want every pt to fit in a nice little box you will miss a lot of opportunities to help your pts. You can be open minded and empathetic w/o being naive and foolish.
 
Just programmed my phone to remind me to bump this thread in exactly 2 years. Let's see if I actually do. Then we'll see if it's still all the rage.

It hasn't been 2 years yet, but I did come across this:

http://www.nature.com/ajg/journal/vaop/ncurrent/abs/ajg2012236a.html

Non-Celiac Wheat Sensitivity Diagnosed by Double-Blind Placebo-Controlled Challenge: Exploring a New Clinical Entity

OBJECTIVES:


Non-celiac wheat sensitivity (WS) is considered a new clinical entity. An increasing percentage of the general population avoids gluten ingestion. However, the real existence of this condition is debated and specific markers are lacking. Our aim was thus to demonstrate the existence of WS and define its clinical, serologic, and histological markers.

CONCLUSIONS:


Our data confirm the existence of non-celiac WS as a distinct clinical condition. We also suggest the existence of two distinct populations of subjects with WS: one with characteristics more similar to CD and the other with characteristics pointing to food allergy.
 
i looked at the abstract, and im not impressed.

they advertise it as a double blind study in the title, but it really is a chart review. essentially, they came to the conclusion that, of those that they had already diagnosed as having wheat sensitivity, some had more celiac disease features and some had multiple hypersensitivity features. does that mean that there is a specific wheat sensitivity? or maybe those with multiple hypersensitivity have, essentially, multiple food allergies.

obviously, a defning case would be someone who exhibited only sensitivity to wheat...
 
this is the exact attitude that causes thousands of patients unnecessary suffering, due to symptoms that aren't being taken seriously and arrogant, know-it-all doctors who won't listen.

true story - I've always been healthy, an athlete, ate really well, etc. about a year and a half ago, I felt like my health just started deteriorating for no reason. I had just about every GI symptom you can think of, usually many, and they were relentless and sometimes very severe. I was in extreme discomfort and often pain every single day, despite how much I slept, healthy I ate, water I drank, etc etc etc. Along with this, my energy level dropped to the point where I wanted to go to bed more than do ANYTHING literally all but maybe one hour a day, and could barely make myself work out or go out with friends. I started getting headaches, my head just felt fuzzy all the time - I was miserable, and despite multiple tests and theories (mostly thyroid) from several doctors no one could find anything wrong and settled on an IBS diagnosis.

well finally, after a suggestion/success story from a coworker, I decided to cut out gluten (I had already cut out fructose, and dairy, the latter helped slightly with GI but not much else.) that was about 4 months ago, and honestly I feel better today than I ever thought I would again. what is most striking is my energy level - it's soo nice to want to do things again and not sleep my whole weekends away. I was recently tested for celiac's, but as I've been gluten-free it came back negative, as it would either way. so maybe I'm a Celiac, or maybe I'm one of hypochondriac fad-dieters that everyone is making fun of with a gluten sensitivity. but I can tell you I haven't lost one pound, don't care if I do, miss drinking beer like it's my job, and have never even thought about being vegan or doing a wheatgrass shot or any other "healthy" fad.

I do agree that "gluten-free" as a diet had become a little trendy, but if it means making gluten-free foods more accessible for those who truly need them, then I'm all about it. and as for the comment about inherently gluten-free foods being labeled as such, you would be sooo surprised how much gluten ends up where it doesn't belong, and honestly such labels are a godsend for many.

I didn't intend to write an autobiography here, but I really felt the need to offer an alternative perspective of a future doctor and also patient who has been really hurt my doctors who think the same way as many posters on here. if you guys want to be effective, compassionate doctors, you need to drop this attitude real quick and stop jumping to conclusions. obviously about way more than gluten.

True story: your sanctimonious diatribe bores the tits off me.

Quick ! I prescribe you 200 CCs of Dr. Oz stat.
 
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