So Delicious Coconut Milk

[kareng]

But if a product test clean for under 10%, that is not proof that gluten can be present in 9% or less. Correct, Professor?

Oh well... I guess this discussion will be endless until there is more viable research. But, it appears that the OP has been satisfied with the responses.

And I think it's great that a company will choose to be Certified, going far beyond the 20% of what is considered safe for MOST people with Celiac to consume.

Actually...its I don't think you mean 20 percent. Its 20 parts per million. That's 0.002% if I calculated that on this wierd calculator and understand it correctly.

Also, just because it tests at less then 10 ppm as the ice cream does, that just means it has less than 10. It could have 9 or it could have 0 ppm.

I like thier products, especially the coffee creamers, but I don't think I am super sensitive so I wasn't going to say anything.

[Lisa]

Actually...its I don't think you mean 20 percent. Its 20 parts per million. That's 0.002% if I calculated that on this wierd calculator and understand it correctly.

Yes, of course ppm.

[IrishHeart]

"In biology, zero does not exist."

so if 1-4 ppms is not detected in <5ppm testing capabilities...

and someone is STILL getting "gluten reactions" from a product,

then "gluten free" products should be avoided. Does that make

sense to everyone?

For the record, skeptical hubs, a chemist, used the Gluten Tox

kits just for the hell of it (because as he says, who knows if

THOSE are reliable?) and products that other people state "have

trace gluten in them" did NOT have them. He used the ones that

"Tested for <5 ppm" and it was done with extreme care. Hubs worked

in labs for 33 years and is about as anal as it gets with testing

procedures. (you should see him brew beer Meticulous.

again.....Everyone is different.

[IrishHeart]

Of course, I can't guarantee that I react to lower levels than 10 ppm of gluten, though that has been well described in the literature: Open Original Shared Link

You always post this link to the one study done and while it is informative, it is over 50 pages long (yes, I have read it) and it would be helpful for newbies to know the conclusions of the study are based on the "data available" and it as follows:

"Last, after the evaluation of all low dose-response data available on the adverse celiac disease related health effects of gluten, the tolerable daily intake level for gluten in individuals

with celiac disease was determined in a safety assessment to be 0.4 mg gluten/day for adverse morphological effects and 0.015 mg gluten/day for adverse clinical effects. Some

evidence suggests that the possibility that the TDI for morphological effects based on a derivation that incorporated a 10-fold UF for inter-individual differences may not include

45a margin of error (or safety) that protects all individuals with celiac disease. The LOC values for gluten in food that correspond with these TDI values at the 90th percentile level of intake

are less than 1 ppm for both morphological (~0.5 ppm) and clinical (~0.02 ppm) adverse effects.

In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with celiac disease on a GFD that protects the most sensitive individuals with celiac disease and thus, also protects the most number of individuals with celiac disease from

experiencing any detrimental health effects from extended to long-term exposure to gluten."

And so, in sum, ideally ALL Celiacs would benefit from the ideal under 1 ppm gluten level.

They spent all that time and money to come to THAT conclusion? We could have told them that!

...but where on earth does <1 ppm level of gluten exist???

Under 1? --well, that would be zero.... and in biology, zero does not exist.

[dilettantesteph]

Do any super sensitives have issues with So Delicious coconut milk? I was thinking of getting some but I am super sensitive so I am not sure.

I'm amazed at the backlash from a simple reply to a simple question. I am super sensitive so I replied to a question aimed at super sensitives. Am I not supposed to do that?

[dilettantesteph]

But if a product test clean for under 10%, that is not proof that gluten can be present in 9% or less. Correct, Professor?

I'll assume you mean ppm and not %. You are incorrect. Pretty well, if we are talking whole numbers and something is under 10 ppm, it will have between zero and 9 ppm. I suppose it isn't absolute proof. There are limitations to testing procedures. It is possible that there is more than that. Is that what you meant?

[dilettantesteph]

Certified gluten-free is as good as it gets in Celiac world

Certified gluten free to 5 ppm is better than certified gluten free to 10 ppm.

if you choose not to eat something out of fear,

I don't choose not to eat things out of fear. I choose to eat things after I have tried them and found out that they make me sick. That isn't fear. That is basic human intelligence.

do not post that certified gluten-free may not be enough.

I did not post that. I just posted that I had a reaction to it. I even said that I can't guarantee that it was a gluten reaction.

[dilettantesteph]

For the record, skeptical hubs, a chemist, used the Gluten Tox

kits just for the hell of it (because as he says, who knows if

THOSE are reliable?) and products that other people state "have

trace gluten in them" did NOT have them. He used the ones that

"Tested for <5 ppm" and it was done with extreme care.

From the glutentox website: Open Original Shared Link

"How sensitive is GlutenTox Home?

You can choose the sensitivity of each test you perform: either 20ppm or 5ppm."

What test did he use that tested for <5 ppm?

[dilettantesteph]

You always post this link to the one study done

It isn't really "one study". It is a comprehensive analysis of all the relevant studies about reactions to gluten that the FDA could find which are among the 101 references in the study. I give this reference because everything is in there, plus it is interpreted for us.

Under 1? --well, that would be zero.... and in biology, zero does not exist.

????? There are many other numbers under 1 besides zero. If not in biology, than in chemical testing: 0.9, 0.8, 0.7, 0.6 ...There's that professor fantasy coming out again.

Right now test best affordable easily accessible tests only measure to 5 ppm.

It is an individual decision. Of course. Does that mean that if someone asks a question of a super sensitive about a reaction, that I shouldn't reply?

Do we have to try everything and risk getting sick to find out if we can eat something?

[peeptoad]

Forgive me because I did not read through this entire thread (just skimmed it), so someone may have already mentioned this:

Coconut milk is a high-FODMAP food (excess fructose I believe), so some people may react to that in addition to (or instead of) the trace gluten (if any). I personally cannot eat any of the coconut milk substitutes because I get EXTREME bloating and gas with only a small/medium-sized serving (may have to do with my SIBO issue since I seem to be sensitive to sugars in general). Sad, because I was hoping it would be a good replacement for ice cream and it is tasty stuff.

[IrishHeart]

It is an individual decision. Of course. Does that mean that if someone asks a question of a super sensitive about a reaction, that I shouldn't reply?

Do we have to try everything and risk getting sick to find out if we can eat something?

(1) You admit everyone's level of sensitivity is different.Right?

(2) then, you ask do "we" have to try everything and risk getting sick? (you mean gluten-free labeled foods here, I assume?)

(3) Well, if we are all different in our sensitivity levels, how on earth is your experience, or mine --or anyone else's for that matter-- an accurate indicator of what the next person's will be?

All anyone can do is try something.

Otherwise, that individual will never know.

I am not suggesting someone "should risk getting sick"; I am saying she should realistically weigh all the medical and scientific data that confirm that certified gluten-free products and naturally gluten-free foods are SAFE and do not hamper a celiac's ability to recover from this disease against the very small minority of people who are super duper sensitive and cannot handle ANY products regardless of the lowest possible ppm level.

[IrishHeart]

From the glutentox website: Open Original Shared Link

"How sensitive is GlutenTox Home?

You can choose the sensitivity of each test you perform: either 20ppm or 5ppm."

What test did he use that tested for <5 ppm?

My mistake. It was for 5ppm. My apologies for using the < sign.

(I was talking about < 5 ppms previously.)

[IrishHeart]

Forgive me because I did not read through this entire thread (just skimmed it), so someone may have already mentioned this:

Coconut milk is a high-FODMAP food (excess fructose I believe), so some people may react to that in addition to (or instead of) the trace gluten (if any). I personally cannot eat any of the coconut milk substitutes because I get EXTREME bloating and gas with only a small/medium-sized serving (may have to do with my SIBO issue since I seem to be sensitive to sugars in general). Sad, because I was hoping it would be a good replacement for ice cream and it is tasty stuff.

Thank you!--this is all I was trying to say in the first place.

It could be another food intolerance or a chemical sensitivity or some other medical condition that makes someone "react" to a product with multiple ingredients.

[IrishHeart]

It isn't really "one study". It is a comprehensive analysis of all the relevant studies about reactions to gluten that the FDA could find which are among the 101 references in the study. I give this reference because everything is in there, plus it is interpreted for us.

And the summary of the study is?

"In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with celiac disease on a GFD that protects the most sensitive individuals with celiac disease and thus, also protects the most number of individuals with celiac disease from

experiencing any detrimental health effects from extended to long-term exposure to gluten."

And so, in sum, ideally ALL Celiacs would benefit from the ideal under 1 ppm gluten level. (really? we could have told them that) OF COURSE we would LOVE to have a 100% gluten-free world. (that is not going to happen)

So, what is the absolutely safest route?

Maybe just eat plain naturally gluten-free foods. Period.

(but then, someone will suggest even THOSE are not safe ) so what is a person to do? Eat nothing?

He/she can trust the NUMEROUS studies that say that under 20 ppms are safe for celiacs to consume and the many celiacs who are in remission--or NOT.

THAT decision is up to the individual.

[RiceGuy]

Just looking to see if it goes along the same line as the not so gluten free gluten free rice dream. Thanks to those who answered.

I think the answer to this question would be different than to your first. I mean, Rice Dream is known to contain gluten, as barley is used at some point during its production. IMO, the company skirts current laws, and perhaps is taking advantage of the current lack of definition of gluten-free products in general. The allergens which must be listed on a product in the U.S.A. do not include barley, so that's perhaps another loophole.

So far as I know, the So Delicious coconut milk doesn't contain any ingredients which would normally contain gluten, nor are any gluten-containing ingredients used in processing. That's quite a different scenario than with Rice Dream.

I do happen to know someone who reacts to the product in question, but I believe it is due to the carrageenan, which many people cannot tolerate, for one reason or another.

[weluvgators]

He/she can trust the NUMEROUS studies that say that under 20 ppms are safe for celiacs to consume and the MILLIONS OF CELIACS who are in remission--or NOT.

Are there really millions of celiacs in remission?

Rough numbers: 300 million Americans

Maybe 3 million have celiac disease (1%, right?)

Are they still saying 97% are undiagnosed? (University of Chicago still reports 97%)

So, maybe 90,000 Americans are diagnosed?

I recently read (I can't remember where, but I will link to an article that seems like the one I read where this stood out) that 30% of celiacs are not responding to a "gluten free" diet. I have no idea as to the accuracy of this, but here is the link from when I tried to quickly find it again: Open Original Shared Link .

So, I am struggling to identify where these millions of celiacs in remission are. Do I have my math wrong? I haven't seen stats on world populations and celiac; do you know if they are handy? Do you have remission stats handy (I thought studies showed that celiacs typically do not fully recover their villi)?

I quit eating So Delicious products after having a seemingly gluten reaction to one of their products, testing it at home because I didn't want to believe my body, and drawing my own conclusions. I appreciate very much that they have a proactive allergy awareness program and are quite forthcoming with information.

And I further appreciate the countries in the world who are requiring lower gluten detection limits for "gluten free" food manufacturing. Of course, there are some celiacs in those populations advocating for more leniency in "gluten free" labelling. I just happen to be one of the ones advocating for the lowest detection limits possible . . . I mean, why not? Is it really *THAT* hard to get truly gluten free food? In my experience, it is, but that is hardly reason to "give up" and not demand it! Without demand, there won't be supply, right?

And about those numerous studies that advocate that 20 PPM is safe for celiacs . . . well, with 97% undiagnosed, I don't know if we can draw too many conclusions about the general celiac population yet. And we have some lengthy discussions about the concerns some of us have with those studies for 20 PPM - hopefully people will do their own research on that one too.

[RiceGuy]

Forgive me because I did not read through this entire thread (just skimmed it), so someone may have already mentioned this:

Coconut milk is a high-FODMAP food (excess fructose I believe), so some people may react to that in addition to (or instead of) the trace gluten (if any). I personally cannot eat any of the coconut milk substitutes because I get EXTREME bloating and gas with only a small/medium-sized serving (may have to do with my SIBO issue since I seem to be sensitive to sugars in general). Sad, because I was hoping it would be a good replacement for ice cream and it is tasty stuff.

Not sure about every coconut milk product, but all the ones I know of do contain sugar in one form or another. But raw coconut milk straight from a coconut doesn't generally contain high levels of sugar. Coconut water, on the other hand, does contain a notable amount of sugar, as it is from young coconuts, not mature coconuts.

You can always make your own coconut milk, and use Stevia to sweeten it, which is what I do. Homemade coconut ice cream is also fairly easy to make, though it'll turn out better with an ice cream maker. I just refrigerate it, and that's cold enough for me.

[IrishHeart]

Using the word "Millions" was perhaps an overstatement on my part.

I regret using that word to make my point about the number of patients who are in remission (i.e. responsive to the diet)

There are 20 million celiacs in the US and about 20 million in the world, according to the most recent websites and journal articles I read.

It would seem saying millions are in remission would not be far-fetched.

But for clarity, I should have used the word MANY. I will edit my post for clarification. My apologies to all readers.

It is always my intention to provide accurate information.

IH

[IrishHeart]

And I further appreciate the countries in the world who are requiring lower gluten detection limits for "gluten free" food manufacturing.

I do not disagree with you on this. Ideally, it would be best for us all.

[IrishHeart]

...There's that professor fantasy coming out again.

You put a smiley face, so you may just be joking but,

You fantasize you are a professor?

I was one and it's no fantasy job,

Too much paperwork and no $$$ in it.

Working with students was the only real reward.

[Gemini]

As usual, when certain people post to this forum, the conversation inevitably becomes downright anal and combative. There very well could be millions of Celiacs out there who are not MD diagnosed but self diagnosed and doing wonderfully on the gluten-free diet. They are not on the radar. From all I have seen and read since being diagnosed 7 years ago, there are way more Celiacs doing well on this diet than those who are not. Those who are not most likely have additional food intolerances and allergies or one of the many bowel diseases that can go along with Celiac. Or they may have emotional issues with food that affect their gut. It does happen. What I haven't seen is any proof that there is such a thing as a super sensitive Celiac. I know people whose systems were so inflamed and out of whack due to food allergies that they become super sensitive to just about anything they eat. That is usually temporary and, as they slowly heal, they can successfully add foods back in.

So Delicious Coconut Milk ice cream is safe. It doesn't contain any gluten. It is high in fat content, but good fat is the same as bad fat when it comes to your intestinal tract. It can act as a laxative and cause cramping. If I eat too much of it, that's exactly what happens. Gluten like reaction minus the gluten. You don't have to be a rocket scientist to figure this out. I am also in research so have that analytical mind but never let that get in the way of common sense. It is entirely possible to over think things to the point of obsession. This is what I see here.

For newbies, it's this simple....if you stick with certified gluten-free products and stay away from shared facilities, unless they have a good track record for keeping things separate and clean, you should be fine. If you do react to a new food, it probably is not going to be from gluten but from one of many other reasons mentioned already. You may have to heal a long while before you get to the point where you can eat without getting sick a couple of times a week. This is normal. Continuing problems should be addressed with a doctor you trust. There may be an underlying problem, common to Celiacs. Above all, relax and don't live in fear of minute amounts of gluten out there, otherwise, you'll end up like some of the posters to this forum....overly obsessive about food and life.

[dilettantesteph]

He/she can trust the NUMEROUS studies that say that under 20 ppms are safe for celiacs to consume and the many celiacs who are in remission

Can you please provide references for those NUMEROUS studies? I am only aware of this one:

Open Original Shared Link

This is what the FDA analysis said about it: (link provided above for FDA study)

"Also, it appears possible that the most sensitive celiac

patients were not considered for analysis in this latter study, because those with any

initial small intestine mucosal abnormalities after a one month pre-challenge strict GFD

period (n=4 subjects), and a few subjects that experienced acute clinical symptoms in

response to the gluten challenge, were excluded from consideration."

Pg 28 of 93.

Or, was your comment about the numerous studies an opinion rather than a fact?

By the way, I have no desire to scare people who can eat normal gluten free food.

My husband, diagnosed with celiac disease, eats that food without any issues.

But, when celiacs/gluten intolerants are having issues eating that food, they need to be made aware of the possibility that it could be a problem.

I was in that boat myself. I was unaware of that possibility for many months until my GI doctor suggested it.

Had someone on this forum suggested to me that I might be reacting to normal gluten free food, I could have improved my health many months sooner.

[Gemini]

Can you please provide references for those NUMEROUS studies? I am only aware of this one:

Open Original Shared Link

This is what the FDA analysis said about it: (link provided above for FDA study)

"Also, it appears possible that the most sensitive celiac

patients were not considered for analysis in this latter study, because those with any

initial small intestine mucosal abnormalities after a one month pre-challenge strict GFD

period (n=4 subjects), and a few subjects that experienced acute clinical symptoms in

response to the gluten challenge, were excluded from consideration."

Pg 28 of 93.

Or, was your comment about the numerous studies an opinion rather than a fact?

Considering that most of what you say on this forum is personal opinion and not fact with regards to the issue of super sensitivity, why is this important to you now?

By the way, I have no desire to scare people who can eat normal gluten free food.

My husband, diagnosed with celiac disease, eats that food without any issues.

But, when celiacs/gluten intolerants are having issues eating that food, they need to be made aware of the possibility that it could be a problem.

I was in that boat myself. I was unaware of that possibility for many months until my GI doctor suggested it.

Had someone on this forum suggested to me that I might be reacting to normal gluten free food, I could have improved my health many months sooner.

Please provide proof, Stephanie, that your reactions to certified gluten free foods were from gluten. You haven't provided any proof because there is none. There are many reasons why you may react to something other than gluten but you persist in saying it ain't so. That's really scientific....

[IrishHeart]

By the way, I have no desire to scare people who can eat normal gluten free food.

But, when celiacs/gluten intolerants are having issues eating that food, they need to be made aware of the possibility that it could be a problem.

Had someone on this forum suggested to me that I might be reacting to normal gluten free food, I could have improved my health many months sooner.

But, this is not clear at all.

What is "normal" gluten free food??

EDITED to SAY:

Sorry---NEVER MIND!! I have RE-READ what you said after someone pointed it out to me that I was misinterpreting it and you meant gluten-free products.

Forget this question! I'm sorry!!

I do understand that you cannot tolerate them and do better without them in your diet.

[RiceGuy]

There are a few posts in this thread (and perhaps countless ones on the board) stating that fat can have a laxative effect. Perhaps it does to those who get D from gluten. My typical reaction to gluten never included D, and no amount of fat I've consumed in one meal has ever done that to me whatsoever.

However, like many of the members here, when a food doesn't agree with me, the reaction can be similar to my reaction to gluten. But over time I've learned to discern the differences, thus I'm usually (though not always) pretty sure when it's gluten and when it's something else. For the times when I'm not sure, testing a few different brands of the same product, different products with a common suspect ingredient, and so forth, has always been quite useful in narrowing it down. It can take time, patience, and a few days (or weeks) of not feeling so well, but it can be very enlightening. IMHO, better to know an offender and avoid it, rather than get surprised now and then by some darn ingredient/food, and not truly get to the bottom of it.