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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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So Delicious Coconut Milk
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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.

Also, do any of you bake with coconut flour? Any good brands out there?

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Ads by Google:

I enjoy So Delicious milk, creamer, ice cream all the time and have no problems whatsoever with their products. They are certified gluten-free, free of GMOs, organic, dairy free, etc. and taste great!

from their website:

Gluten-Free

Our gluten-free products are certified by the Gluten-Free Certification Organization, a program of the Gluten Intolerance Group of North America®. To learn more, visit www.GFCO.org

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Products that are certified Kosher Parve are certified through Kehilla Kosher. To learn more, visit www.KehillaKosher.org

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Products that are processed in a plant that contains dairy are certified Kosher D.E. by Kehilla Kosher. To learn more, visit www.KehillaKosher.org

Organic CoconutMade with Organic Coconut

Products that contain organically grown and certified coconut are marked with this symbol. To learn more, visit www.OrganicCertifiers.com

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Products marked with this label contain between 70% and 94% Organic ingredients. To learn more, visit www.OrganicCertifiers.com

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Products that bear this symbol are verified by the Non-GMO Project, a non-profit collaboration of manufacturers, processors, distributors, farmers, seed companies and consumers. To learn more, visit www.NonGMOProject.org

Pas YisroelPas Yisroel

Products containing grain products that are cooked or baked with the participation of a Rabbi are marked with this symbol. To learn more, visit www.KehillaKosher.org

Certified USDA OrganicUSDA Organic

Products that are labeled "USDA Organic" are certified by Organic Certifiers and contain more than 95% Organic ingredients. To learn more, visit www.OrganicCertifiers.com

VeganVegan

All of our products are certified vegan by Vegan Action. They do not contain animal products and are not tested on animals. To learn more, visit www.Vegan.org

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Pretty sure So Delicious bothers me, but I might have to try it again to be completely sure. Tropical Tradition coconut flour is great and its never bothered me so I'd say its safe for all super sensitives. I'd recommend it to anyone.

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So Delicious ice cream was fabulous and filled that niche nicely until I could have lactose again. :D

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I noticed a reaction to So Delicious coconut milk back when I seemed to be able to tolerate things tested to below 5 ppm. I just looked it up and their products are tested to less than 10 ppm. I guess it would depend on your degree of super sensitivity.

http://www.turtlemountain.com/health/pdf/tm_glutenfree.pdf

http://gfco.org/

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I noticed a reaction to So Delicious coconut milk back when I seemed to be able to tolerate things tested to below 5 ppm. I just looked it up and their products are tested to less than 10 ppm. I guess it would depend on your degree of super sensitivity.

http://www.turtlemountain.com/health/pdf/tm_glutenfree.pdf

http://gfco.org/

What kind of reaction do (did) you get? If I might ask :)

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I noticed a reaction to So Delicious coconut milk back when I seemed to be able to tolerate things tested to below 5 ppm. I just looked it up and their products are tested to less than 10 ppm. I guess it would depend on your degree of super sensitivity.

http://www.turtlemountain.com/health/pdf/tm_glutenfree.pdf

http://gfco.org/

I looked on the chart you linked to, but I do not see where they state that about 10 ppm....can you point that out to me?

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There comes a point where we may need to just agree that "Everyone is different" in his/her reactions to low gluten levels.

Because to me, it seems like no matter WHAT product is questioned by someone on this site, and particularly in this section, someone says it gives them "a reaction".

Is it a GLUTEN reaction? What happens exactly?

How do you know it is not a reaction to something ELSE in the product??

That is significant to differentiate.

What it seems to come down to is this: if someone is so sensitive that he/she cannot tolerate any products in a package or from a factory--even a dedicated one with strictly- enforced certification policies--then he/she should never, ever use them.

At least, that seems to be the prevailing thought here.

I am extremely sensitive to trace gluten exposure--as in an accidental CC--and when I say that, I mean I get immediate neuro symptoms and various GI symptoms, insomnia, agitation, horrid BURNING muscle and skin pain and joint pain and they last for weeks. It happened only twice-- and neither was because of a packaged product with that G F circle on it.

That is what I consider being "super sensitive". Yet, I am fine with several packaged products that carry that big fat circled G F .

Dedicated facilities are about as good as it gets for us.

Posting a question like "Do any super sensitives react to....(fill in the blank)...." is going to get just two answers --(1) those who answer, "no, I do not" and (2) those who will immediately say "I did".

So sometimes, I wonder...what's the point?

There will always be someone who will say "I did."

Why? because everyone is different. :)

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I looked on the chart you linked to, but I do not see where they state that about 10 ppm....can you point that out to me?

In the second link it states that in order to get GFCO certification it must test to less than 10 ppm.

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thanks, Shroomie!

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Harrumph!

Does anybody react to XXXXX? YYYYY? ZZZZZ?

I react to water. You know, dihydrogen monoxide--H2O. When I accidentally inhale it, I have a coughing fit. OMG! I react to water--water MUST contain gluten. I KNOW it FOR SURE! :o

No matter what you ask about, there is somebody who has a problem with it--real or imagined. Doesn't mean you will.

I cannot use Kraft Zesty Italian Dressing. I know it is gluten-free--no doubt there. But something in it disagrees with me.

Believe what you choose to believe. I will believe clear scientific evidence long before I believe off-the-wall anecdotes. Your mileage may vary.

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I know a number of super-sensitives who do well with Tropical Traditions coconut products, too (re: the flour question).

So sometimes, I wonder...what's the point?

There will always be someone who will say "I did."

Why? because everyone is different. :)

I think it's not always so useful for someone coming in cold, very true. Even less useful for someone who doesn't usually ask questions in the super-sensitive section, so they have no real way of gauging whose sensitivity levels might match their own. So whether someone reacted or not may have no relevance to whether THEY might react.

I think your last sentence hits the nail on the head: we're all different. I wonder if a different format of question might provide the information people are really looking for, which I imagine is, 'will I, personally, have a problem with this food?'

Perhaps listing a couple products one can eat might help. Like saying 'I can eat Kinnickinnick and Pamela's products without issue. For others who can also eat these products, do you have any trouble with Product X?'

I wonder if encouraging that type of question might enable us to focus the answers better to provide the most relevant info.

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Does anybody react to XXXXX? YYYYY? ZZZZZ?

Am I misreading or are you mocking the fact that someone even asked this type of question? That's how it's coming across to me, honestly.

If you don't agree with the answers, or even with the idea that someone might have problems with a product, that's your prerogative, of course. But a response that mocks the person asking the question, or others who are answering, isn't exactly conducive to a productive forum, IMO. It would seem to lead to a situation where people who really need to know the information are too afraid of derision to ask a question.

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I wonder if a different format of question might provide the information people are really looking for, which I imagine is, 'will I, personally, have a problem with this food?'

Perhaps listing a couple products one can eat might help. Like saying 'I can eat Kinnickinnick and Pamela's products without issue. For others who can also eat these products, do you have any trouble with Product X?'

I wonder if encouraging that type of question might enable us to focus the answers better to provide the most relevant info.

Since so many of us have other intolerances beyond gluten, this makes a lot of sense to me.

Just because you have an adverse reaction to a product does not necessarily mean that it contains gluten. That is true of all of us, not just those who are super-sensitive. I do not consider myself to be super-sensitive. I do react to small amounts of gluten. I also react to shellfish. I would never say that that proves that lobster contains gluten. I am allergic to them, but it has nothing to do with gluten, or celiac disease.

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Am I misreading or are you mocking the fact that someone even asked this type of question? That's how it's coming across to me, honestly.

If you don't agree with the answers, or even with the idea that someone might have problems with a product, that's your prerogative, of course. But a response that mocks the person asking the question, or others who are answering, isn't exactly conducive to a productive forum, IMO. It would seem to lead to a situation where people who really need to know the information are too afraid of derision to ask a question.

It is not my intent to mock anyone. But this form of question recurs over and over. There is always someone who responds that, whatever the product is, they react to it. I annoys me when someone:

Replies to such a question saying they react, but never respond to questions about their reaction; or,

Posts once in a drive-by attack on a product and never returns.

It is my nature to be grouchy. ;)

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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.

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What kind of reaction do (did) you get? If I might ask :)

You may ask. :)

It was my typical gluten reaction. 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: http://www.fda.gov/downloads/Food/ScienceResearch/ResearchAreas/RiskAssessmentSafetyAssessment/UCM264152.pdf

I can't guarantee that it was a gluten reaction. I don't suppose that any of us can, for that matter. My doctors think so, and I agree.

My typical gluten reaction consists of blurred vision, uncontrollable diarrhea, which often doesn't take place in the toilet, depression, irritability, reflux, nausea, joint pain, heart palpitations, fatigue, brain fog, muscle weakness, and maybe some other things which I forgot to add to the list.

Fortunately, I have my diet figured out enough by now that I don't get full blown reactions very often anymore.

The reaction happened about 3 years ago when full blown reactions were still common for me. I keep track of the things that I reacted to, but I don't keep track of individual symptoms each time, I'd have my basement filled with journals by now LOL, so I'm not sure exactly to what extent I had which symptom.

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I looked on the chart you linked to, but I do not see where they state that about 10 ppm....can you point that out to me?

In the first link they say that it is certified by the organization described in the second link. Would you like me to copy the portions of the links in particular?

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You may ask. :)

Fortunately, I have my diet figured out enough by now that I don't get full blown reactions very often anymore.

The reaction happened about 3 years ago when full blown reactions were still common for me.

It appears that after three years, your body had healed itself for the most part. A good thing. :)

Considering this product is Certified Gluten Free and should not contain any hidden gluten or detectable gluten, it might be worth the go. Although, I know some people here that have trouble with coconut.

I'm game :D

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I think your last sentence hits the nail on the head: we're all different. I wonder if a different format of question might provide the information people are really looking for, which I imagine is, 'will I, personally, have a problem with this food?'

For which the answer is "who knows?" With all due respect, I do not see how that is any different than someone taking a poll of people asking "does this bother you?" The answer is still the same.

Some will say yes and some will say no.

The true answer is: Only YOU can decide what agrees with your system.

This was my whole point. I think it is IMPOSSIBLE to determine how any individual will tolerate a food item--especially if it contains MULTIPLE ingredients. Any good scientist knows too many variables will muck up the experiment and produce invalid data.

Various food intolerances and allergies and chemical sensitivities cause many symptoms that are like gluten reactions (GI, nuero, dermatological, musculoskeletal) and so, it is unfair and unwise for a newbie to draw the conclusion "Well, two people said Product X gave them gluten reactions and I felt lousy after eating it, therefore, it has gluten. Oh no, I am super sensitive."

That is faulty logic.

So, if a newly DXed celiac tries all the various G F products under the sun and wonders why they still feel like crap, having "reactions" and fearful is it the G F Product causing it, they need to consider the possibilities:

I am still healing.

or

I was glutened recently and my body is very inflamed and I am still ill.

The answer is: there is NO way to determine if it is the product, the ingredients IN the product or that they are supremely sensitive enough to have a real "gluten reaction".

It is just not possible to determine that.

If I posted a question for every moment I felt lousy and had symptoms during the last year of healing, I would have been here all day, every day. I THOUGHT everything made me sick because I WAS..... still SICK.

Recovering from long unDXed celiac takes years.

And recovering from a glutening takes a while, too.

And perhaps that is NOT the best time to try new products anyway because your system is pretty riled up.

IMO

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In the first link they say that it is certified by the organization described in the second link. Would you like me to copy the portions of the links in particular?

Not necessary, but thank you! I read all the info you provided.

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Considering this product is Certified Gluten Free and should not contain any hidden gluten or detectable gluten,

Sorry to split hairs, but as a scientist, I can't help myself. Especially as a scientist who worked in an analytical lab. or maybe it's the professor in me. :P

Since the product is tested to a detection limit of 10 ppm gluten as discussed above, and tests are available with a detection limit of 5 ppm gluten, http://farrp.unl.edu/ca/submissionsforms

your statement may not be accurate.

I agree that we have different levels of sensitivity and we need to decide for ourselves. It is just nice to have a bunch of information to help decide.

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Sorry to split hairs, but as a scientist, I can't help myself. Especially as a scientist who worked in an analytical lab. or maybe it's the professor in me. :P

Since the product is tested to a detection limit of 10 ppm gluten as discussed above, and tests are available with a detection limit of 5 ppm gluten, http://farrp.unl.edu/ca/submissionsforms

your statement may not be accurate.

I agree that we have different levels of sensitivity and we need to decide for ourselves. It is just nice to have a bunch of information to help decide.

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.

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In an interview with Dr. Alessio Fasano, (referred to as AF in the article) --considered a leading celiac doctor and researcher--- the author of the article (designated as AR) asked him the following questions. I found it interesting and relevant to the discussion:

AR: What do you know about the FDA and

the gluten- free definition?

AF: The FDA has been slowed down

tremendously by people who had unrealistic

expectations and who wanted the definition

to be zero gluten. But the FDA has just finished the final draft document on the definition and will be posting it by the end of the year for public comment. After that they will

finalize the definition.

AR: What about people who feel 20 ppm is

not a safe level of gluten, only zero is safe?

AF: In biology, zero does not exist. You

can make a zero- part- per- million product in

a facility like NASA where you have special

suits and then you will wind up with a slice

of bread that will cost $2,000. But as soon as

it comes out of the facility, it will be crosscontaminated by one or two parts of gluten.

The final study (on a safe level) is done

and it is indisputably true. Of course we know

there are people who are extremely sensitive,

but you have to make the rules for the vast

majority and I would say 20 ppm covers the

vast majority.

AR: What do you think about the possibility that gluten- free grains are cross- contaminated?

AF: That is scary. This is the responsibility of the FDA, which isn’t acting fast enough on deciding what gluten- free really is. General Mills decided to take one product that is

naturally gluten free and market it by labeling

it gluten free. They did this right. They did everything

they were supposed to to make sure it is not

cross-contaminated. They put a big check

“Gluten Free” and it is a blockbuster. But you

have to do the homework.

As usual if the rules are not clear, people

can cut corners. But when the FDA defines

gluten free and attaches a legal consequence,

trust me that will be deterrence by itself."

The entire interview can be found here:

http://www.glutenfreeliving.com/Browse/file/GFL_Fasano_interview.pdf

A wise man I know said this about shared facilities and the question of CC and how much gluten is safe etc..

"The planet Earth is a shared facility." :)

Celiacs need to figure out INDIVIDUALLY what works best to keep them from being ill.

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Sorry to split hairs, but as a scientist, I can't help myself. Especially as a scientist who worked in an analytical lab. or maybe it's the professor in me. :P

Since the product is tested to a detection limit of 10 ppm gluten as discussed above, and tests are available with a detection limit of 5 ppm gluten, http://farrp.unl.edu/ca/submissionsforms

your statement may not be accurate.

I agree that we have different levels of sensitivity and we need to decide for ourselves. It is just nice to have a bunch of information to help decide.

Certified gluten-free is as good as it gets in Celiac world but if you choose not to eat something out of fear, then do not post that certified gluten-free may not be enough. That's an opinion that does not apply to the vast majority of Celiacs.

Coconut milk is fat....healthy fat but fat none the less. If I eat too much fat anything, I get gluten like reactions, without the gluten. This would be the only warning I would give to people. It can act like a laxative.

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