Lactaid
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If your only issue with dairy is lactose (a sugar), that might be OK. The antigenic reaction (the one most of us seem to have, measured by Enterolab by testing for IgA antibodies) - that's a reaction to casein, one of the proteins in milk.
So - no, I have not tried that! I am quite confident it would make me sick. A tiny amount of butter makes me sick (and that's why I'm postponing any trial of ghee, in case a little protein remnant might be left behind, along with the fat). I know a microscopic amount of butter will do me in... Also, though I know I react to the casein protein, I don't believe that proves there is no other component of dairy that might provoke some problem for me...
(I also believe that a lot of people who are lactose intolerant might have something bigger going on... but that is another story!)
But again, if you can eat casein, and not lactose, then this might help. If butter or cheese isn't working for you, thought - very high risk...
Sara
So - no, I have not tried that! I am quite confident it would make me sick. A tiny amount of butter makes me sick (and that's why I'm postponing any trial of ghee, in case a little protein remnant might be left behind, along with the fat). I know a microscopic amount of butter will do me in... Also, though I know I react to the casein protein, I don't believe that proves there is no other component of dairy that might provoke some problem for me...
(I also believe that a lot of people who are lactose intolerant might have something bigger going on... but that is another story!)
But again, if you can eat casein, and not lactose, then this might help. If butter or cheese isn't working for you, thought - very high risk...
Sara
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draperygoddess
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I have found that in dairy items with very little casein, I can handle a little if I take lactaid. I can get by with a light sprinkling of mozarella on my GF pizza if I take Lactaid. However, hard cheeses and milk are definitely out for me due to the casein.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Cynthia,
That is very interesting. I didn't realize there were some dairy items with lower amounts of casein than other. How do you figure out how much is in a product? I am going for N.A.E.T treatments and in the process of clearing for casein. I think I would still be nervous about trying anything with it, but perhaps something that has small amount would be OK.
Nancy
That is very interesting. I didn't realize there were some dairy items with lower amounts of casein than other. How do you figure out how much is in a product? I am going for N.A.E.T treatments and in the process of clearing for casein. I think I would still be nervous about trying anything with it, but perhaps something that has small amount would be OK.
Nancy
Well, it's super-confusing - no wonder we're confused!
I thought that soft cheeses had more *lactose* - and hard cheeses had less. But it makes sense that when there is less softness (liquid? air?), there's more 'cheeseness' - which would certainly include casein. So...
This brings me to a bee I've had in my bonnet for a while, about GF labeling. How is it possible that saying "under 20ppm" in a *product* is OK - isn't it how many total parts of gluten I'm going to ingest that matters? So if it's 19ppm in my breakfast cereal, and I eat two bowls of it, might that not be quite a lot of gluten - compared to something like a condiment, or vitamin or herbal remedy, at 19ppm - of which I'm going to take maybe 20 drops, total?
It seems to me the question is - aside from the question, "is 20ppm the right number" - is measuring things this way even useful? Because if I put together a meal from a bunch of products labeled GF, it seems to me it's the total amount of gluten in my resulting meal that will either do me in, or leave me unscathed (and in my case, I'm betting "do me in" - which is only one reason why I do not buy or eat GF products!).
And that, I hope, will be my last tangent for today ;)
Sara
I thought that soft cheeses had more *lactose* - and hard cheeses had less. But it makes sense that when there is less softness (liquid? air?), there's more 'cheeseness' - which would certainly include casein. So...
This brings me to a bee I've had in my bonnet for a while, about GF labeling. How is it possible that saying "under 20ppm" in a *product* is OK - isn't it how many total parts of gluten I'm going to ingest that matters? So if it's 19ppm in my breakfast cereal, and I eat two bowls of it, might that not be quite a lot of gluten - compared to something like a condiment, or vitamin or herbal remedy, at 19ppm - of which I'm going to take maybe 20 drops, total?
It seems to me the question is - aside from the question, "is 20ppm the right number" - is measuring things this way even useful? Because if I put together a meal from a bunch of products labeled GF, it seems to me it's the total amount of gluten in my resulting meal that will either do me in, or leave me unscathed (and in my case, I'm betting "do me in" - which is only one reason why I do not buy or eat GF products!).
And that, I hope, will be my last tangent for today ;)
Sara
Sara,
To elucidate your tangent a bit:
According to Fasano, et al., based on their 2007 research report, (link below), the 20 ppm level was selected based on experimental data that showed that 50 mg of gluten per day was safe for most celiacs. In that study, the only one ever done, by the way, (that I'm aware of), to determine a safe level of gluten tolerance for celiacs, 13 subjects were fed 50 mg of gluten per day, and another 13 were fed 10 mg/day, and another 13 received a placebo.
Note how such a profound and far-reaching judgment was made, based on so very few test subjects, and a trial of only 90 days, to say nothing of the fact that the data were mostly inconclusive.
The only patient who had a complete relapse, was one who was ingesting 10 mg/day. But they decided to just ignore that result, because that would have resulted in a 4 ppm result. 
In this trial, that one subject amounted to slightly over 4% of the participants. So we can logically expect that at least 4% of celiacs will suffer a relapse if they consume food spec'ed at the 20 ppm level.
Anyway, the point is, if you read the discussion, (part of which is quoted here), you will see that some patients improved, and some deteriorated, but the researchers arbitrarily decided that 50 mg/day was a safe dosage, and based on a 20 ppm gluten content, that would allow a total consumptom of 2500 grams of food per day, (at a constant 20 ppm). 2500 grams is about 5 and a half pounds, which they figured no one would normally exceed.
http://www.celiaccenter.org/celiac/docu ... 202007.pdf
Also note that they had to disqualify almost 10% of the original subjects, because they had major intestinal damage, (even though they were not symptomatic). IOW, they obviously weren't following a GF diet strictly enough, but never knew the difference. (Some celiacs probably choose to cheat on the diet, if they think that they are getting away with it, because they love that gluten, doncha know.)
Love,
Tex
To elucidate your tangent a bit:
According to Fasano, et al., based on their 2007 research report, (link below), the 20 ppm level was selected based on experimental data that showed that 50 mg of gluten per day was safe for most celiacs. In that study, the only one ever done, by the way, (that I'm aware of), to determine a safe level of gluten tolerance for celiacs, 13 subjects were fed 50 mg of gluten per day, and another 13 were fed 10 mg/day, and another 13 received a placebo.
Note how such a profound and far-reaching judgment was made, based on so very few test subjects, and a trial of only 90 days, to say nothing of the fact that the data were mostly inconclusive.
The only patient who had a complete relapse, was one who was ingesting 10 mg/day. But they decided to just ignore that result, because that would have resulted in a 4 ppm result. In this trial, that one subject amounted to slightly over 4% of the participants. So we can logically expect that at least 4% of celiacs will suffer a relapse if they consume food spec'ed at the 20 ppm level.Anyway, the point is, if you read the discussion, (part of which is quoted here), you will see that some patients improved, and some deteriorated, but the researchers arbitrarily decided that 50 mg/day was a safe dosage, and based on a 20 ppm gluten content, that would allow a total consumptom of 2500 grams of food per day, (at a constant 20 ppm). 2500 grams is about 5 and a half pounds, which they figured no one would normally exceed.
Anyway, my point is, look at how the FDA, (and the world, for that matter), is basing such an important decision regarding the health of all celiacs in the world, on such flimsy research data. It is, without question, a prime example of sugar-coatedThe gluten microchallenge disclosed large interpatient variability in the sensitivity to gluten traces. Some CD patients showed a clear-cut worsening of the small-intestinal architecture after ingesting only 10 mg gluten/d, whereas others had an apparent improvement in mucosal histology after the 3-mo challenge with 50 mg gluten/d (Figure 2). Furthermore, one patient challenged with 10 mg gluten/d experienced clinical symptoms after a few weeks, whereas none of the 13 subjects receiving 50 mg gluten/d had clinical evidence of relapse. Despite this wide individual variability, which must be taken into account when implementing a threshold that is safe for all patients, we showed that 50 mg gluten/d, if introduced for 3 mo, were sufficient to cause a significant decrease in the Vh/Cd index in treated CD patients. This is an important new finding that must be interpreted with caution, for several reasons. Because of the limited number of patients, we were not able to reach firm conclusions about the potential toxicity of 10 mg gluten/d, which remained a “gray”area. For ethical reasons we had to limit the duration of the micro challenge to 3 mo, but it is well known that mucosal deterioration may become manifest after a longer gluten challenge
(19).
http://www.celiaccenter.org/celiac/docu ... 202007.pdf
Also note that they had to disqualify almost 10% of the original subjects, because they had major intestinal damage, (even though they were not symptomatic). IOW, they obviously weren't following a GF diet strictly enough, but never knew the difference. (Some celiacs probably choose to cheat on the diet, if they think that they are getting away with it, because they love that gluten, doncha know.)
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well, when the FDA realizes that I plan to undermine the food industry's profits singlehandedly by *never buying any of that stuff* - they'll have another think coming!
I think I'd have no more success persuading the gluten-sensitive community to avoid this crap than I've had so far 'suggesting' to symptomatic friends & family that a few weeks off from gluten might help, and couldn't hurt. But that would make 'em sit up and take notice! What's actually going to happen? A whole lot of people can be made unnecessarily sicker, while thinking they're safer. Not for me, thanks.
It's such a betrayal of a vulnerable population. But then, wasn't it the FDA who decided it would be so very bad for the food industry not to be able to add yellow coloring, that it was important for that practice to continue despite those "sensitive individuals" who were adversely affected? Just in case we ever forget whose interests they're there to protect.
It might actually be possible to devise a test (an expensive, inconvenient, series of tests, more likely) to let gluten-sensitive individuals know their personal (current) level of sensitivity, so they could judge how careful they need to be. That will never happen - it's so important for medicine to treat the stats, not the individuals, these days.
Thanks for fanning those flames
!
Love,
Sara
I think I'd have no more success persuading the gluten-sensitive community to avoid this crap than I've had so far 'suggesting' to symptomatic friends & family that a few weeks off from gluten might help, and couldn't hurt. But that would make 'em sit up and take notice! What's actually going to happen? A whole lot of people can be made unnecessarily sicker, while thinking they're safer. Not for me, thanks.
It's such a betrayal of a vulnerable population. But then, wasn't it the FDA who decided it would be so very bad for the food industry not to be able to add yellow coloring, that it was important for that practice to continue despite those "sensitive individuals" who were adversely affected? Just in case we ever forget whose interests they're there to protect.
It might actually be possible to devise a test (an expensive, inconvenient, series of tests, more likely) to let gluten-sensitive individuals know their personal (current) level of sensitivity, so they could judge how careful they need to be. That will never happen - it's so important for medicine to treat the stats, not the individuals, these days.
Thanks for fanning those flames
!Love,
Sara
The courts have ruled, for example, that police agencies have no obligation whatsoever, to protect any individual citizen or citizens - they are only obligated to protect "society", as a whole. Therefore, that ruling would surely extend to other aspects of life, as well, including medicine, and regulating the production of food and drugs.Sara wrote:That will never happen - it's so important for medicine to treat the stats, not the individuals, these days.
Anytime. I always thoroughly enjoy a good rant.Sara wrote:Thanks for fanning those flames
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.