Fda Seeks Comments From Super-Sensitive Celiacs

[U Gluten Free]

As part of the current review of proposed "gluten-free" labeling, the FDA has asked for input from celiacs who are highly-sensitive. From the Federal Register p. 46675-6:

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A couple of quotes:

We recognize that there are highly sensitive individuals with celiac disease who may not be fully protected if they consume foods containing a trace level of gluten above 0.01 ppm but below 20 ppm. Therefore, we are seeking comments on whether a ''gluten free'' claim based on a < 20 ppm threshold should be accompanied by a qualifying statement.

and

FDA is interested in receiving data and comments that will help identify the proportion of the population of individuals that may experience adverse health effects as a result of exposure at levels of gluten between 0.01 ppm and <20 ppm.

Other than some of the members of this sub-forum, does anyone have any information about the size of this minority?

[RollingAlong]

That's a toughie. The CSA, as the most conservative celiac group, might have an idea.

Is there any info on celiacs who never eat out?

[T.H.]

Other than some of the members of this sub-forum, does anyone have any information about the size of this minority?

I really wish I did. I've never found a study that looked at this exact issue. Most of the information seems to be anecdotal and observational. Just based on what I'm seeing with the people I speak to, genetics might be involved, because of the celiacs I know who are super-sensitive, if there are other celiacs in the family, there seems to be a higher percentage of THEM that will super sensitive as well. But that could simply be a product of awareness, so that some 'refractory' celiacs become 'sensitive' celiacs when they discover that changing the diet that much allows them to heal.

My daughter and I are both sensitive. My son doesn't seem to be, and neither does my brother. Father is considering it, as after 9 years gluten free, some of his symptoms refuse to go away.

In my local celiac support group, which has at least 100 people, I believe there are 4 people who are super sensitive.

However, I don't think that's going to give an accurate assessment of the numbers, either, because super sensitive folks so often end up not participating in a lot of the groups. We can't eat the gluten-free foods at the get togethers. We can't use the restaurant recommendations. We can't use the product recommendations. We can't use the recipes that everyone is sharing with each other.

Heh...we're grumpy, LOL.

Definitely wish we had more information for the FDA to explore!

[mushroom]

We can't eat the gluten-free foods at the get togethers. We can't use the restaurant recommendations. We can't use the product recommendations. We can't use the recipes that everyone is sharing with each other.

Heh...we're grumpy, LOL.

HeeHee - now ain't that the truth

People say YES!! You can eat it!! It's gluten free!!!! And we say, well, no, actually we can't eat it (for whatever reason - super sensitive, contains other allergens, cooked by someone who doesn't know about cc - what a bummer!) I have about quit eating at restaurants because if I have one more chicken caesar salad (usually made with totally non-nutritive iceberg lettuce) I will scream While I am not in the supersensitive group, the multisensitive group has much the same kinds of problems (except of course for your sourcing problems, Shauna). I order a gluten free meal on the plane and can sometimes find some non-contaminated things on the plate that I can eat, but they generally put soy in everything and tomatoes or a tomato sauce over everything, or smother the plate with mashed potatoes, or litter it with gratuitous corn kernels and peas.... sorry, off topic.

I guess in some ways we do just have to accept that there are some of us for whom the world cannot be made safe enough for our liking. Perhaps it is a miracle that there are commercial gluten free foods and restaurants at all??? And that the majority of gluten intolerant folks can eat (or eat at) them.

[dilettantesteph]

Just to clarify, the levels talked about above are mainly ones considered safe for celiacs by the Fasano study. This is the super sensitive section. Don't want to freak out the newbies or the mods. LOL

[padma]

Just to clarify, the levels talked about above are mainly ones considered safe for celiacs by the Fasano study. This is the super sensitive section. Don't want to freak out the newbies or the mods. LOL

The Fasano study eliminated the super sensitives in their statistical analysis because they couldn't finish the study they were so ill. That kind of skews the stats that the FDA/Big Food Corps is basing their numbers on.

Not trying to freak out anyone, especially the new people who are trying so hard to get well. I wish I had had someone in my first 10 years of being "gluten free" tell me maybe I should totally stop eating anything with the possibility of having gluten in it. I could have missed a few hospital visits that cost me thousands of dollars and much pain and suffering. It wasn't until I found the super sensitive section of this site last year, 10 years into being "gluten free", that I finally have months of freedom from pain.

[salexander421]

HeeHee - now ain't that the truth

People say YES!! You can eat it!! It's gluten free!!!! And we say, well, no, actually we can't eat it (for whatever reason - super sensitive, contains other allergens, cooked by someone who doesn't know about cc - what a bummer!)

Oh my gosh, I know! People think I'm just being difficult when I say I can't eat something that's gluten free for whatever reason.

[dilettantesteph]

I explain that "gluten free" actually means "gluten lite" and some of us can't eat it. That gets the message across.