FYI....Cheerios

[ldubois7]

http://abcnews.go.com/Business/general- ... d=34266537

[JLH]

http://glutendude.com/not-gluten-free/t ... os-recall/

[tex]

Typical corporate mish-mash, flim-flam, jib-jab. Typical corporate arrogance.

We’re GM.
We don’t make mistakes.
The issues must be with the consumer…not us.
We know more about celiac disease than you do.

Oh and yeah, finding a physician to have our back would be nice. But have you read these doctor horror stories? And what would a physician possibly say about eating Cheerios anyway? A doctor’s visit for a celiac usually entails “Don’t eat gluten.” Thanks doc.

Not loving his answer, I then followed up with this:
I appreciate the response. My dedication is to the celiac community so if you don’t mind, I’d love to ask you a few questions:

Why are you using mean testing instead of testing individual boxes?
Will you release your testing scores and if not, why?
Do you find it a bit…thinking of the right word here…questionable for Cheerios to pay bloggers and popular websites (UpWorthy) to promote your product?

His response? Silence. Nothing but silence. I prodded him a bit further and he simply danced around the questions, not answering any of them.

My experience was similar to the GlutenDude's, but with soy, rather than gluten.

Since I was concerned about the source of the "Vitamin E (mixed tocopherols)" in their Corn Chex, here's what I asked of them, back on September 9, 2015, and I sent it from my microscopiccolitisfoundation.org email address (in case that might matter):

Since I produce antibodies to soy, the source of the feedstock from which the mixed tocopherols on your label are produced will determine whether or not I can eat your cereals. Is the vitamin E used in your cereals made from soy?

Their response, on September 22, 2015:

Dear Mr. Persky:

Thank you for contacting General Mills concerning the ingredients in our products. As manufacturers and consumers, we understand your concern about potential allergens in the foods you eat. Our primary goal is to provide accurate information, and we believe this is best accomplished by referring to the specific ingredients listed on each product package. This is the most current information for your needs. We do not hide soy as it is an allergen and we always list when it is in the ingredients.

Our products are labeled for the top 8 allergens (peanuts, tree nuts, dairy products, eggs, soy, wheat, crustaceans and fish) plus sesame, sunflower and mollusks. We label for these allergens using CONTAINS and/or MAY CONTAIN lists located directly below the product’s ingredient list.

CONTAINS means that the allergen(s) is included in the product’s recipe. The allergen(s) will be listed in the ingredient list, and also in the CONTAINS statement just below the ingredient list.

MAY CONTAIN means that the allergen(s) is not in the product’s recipe but could be present as result of the manufacturing process regardless of our best efforts to exclude it. These allergens will not be included in the ingredient list.

Both CONTAINS and MAY CONTAIN mean that if you are sensitive to the specific allergen(s) in the list, no matter which way it is listed, you should avoid this product.

This ingredient and allergen information is for the package in hand. It is not intended for other packages of the same product. Ingredients may vary from one package to another due to product reformulation. If you have allergy concerns, please carefully read the ingredient information on each package.

We hope this information helps you. You may also want to contact the Food Allergy Research & Education (FARE) at 1-800-929-4040, or visit their web site at www.foodallergy.org. Although they cannot provide specific ingredient information regarding a particular product, they are a good resource to help in the management of your allergies and sensitivities.

We appreciate your interest. Please contact us again with any further questions or comments.

Sincerely,

Paula A. Vaughn
Consumer Services

To which I promptly responded:

Hi Paula,

While I appreciate that you went to the trouble to send me a relatively long and generic (evasive) answer, it did not address my question. I certainly recognize that General Mills would never intentionally fail to list soy on a label if it were in a product. And I understand that both academic and industry "experts" almost unanimously agree that soy proteins are removed during processing of products such as soy oil, soy lecithin, and tocopherols that are derived from soy (thus technically exempting the listing of soy as an ingredient in those cases). However, because of my engineering training and experience, I am well aware that theory and real-world experience often differ dramatically due to the fact that in the real world, no such process provides perfect separation. And as a result of those traces of residues that are transmitted during processing, the experiences of thousands of us who are sensitive to soy, clearly contradict the purity claims made about soy oil, soy lecithin, and tocopherols derived from soy. If those "experts" were sensitive to soy, their opinions would change dramatically.

Upon oral exposure to products containing derivatives of soy, our (those of us who are sensitive to soy) immune system produces IgA antibodies to soya, and those antibodies can be readily detected in stool samples by ELISA testing methods). Furthermore, the production of anti-soya antibodies leads to the proliferation of T-cell infiltration into the mucosa and the lamina propria of the intestines, resulting in a pattern of chronic inflammation typically found in the inflammatory bowel disease known as microscopic colitis. Thus the reason for my specific question:

Is the vitamin E used in your GF Chex cereals made from soy?

I would sincerely appreciate a straight and honest answer. The Gluten-Free Chex cereals are very important to those of us who have microscopic colitis, because virtually all of us are sensitive to gluten. But unfortunately, roughly 65–70 % of us are also sensitive to soy. So this is a critical issue for many of us. Please help by answering that simple question.

And in the event that at least some of the vitamin E additive used in the GF Chex products is derived from soy, please do anything within your power to try to get that defect in an otherwise great family of products corrected in future production. Many thousands of us would be eternally grateful.

And do I have your permission to post a copy of your response on my microscopic colitis discussion board? I certainly won't post it if you would rather I didn't.

And again, I sincerely appreciate your help with this.

All my best,
Wayne

Their response: Absolute silence. And since I specifically asked about permission to post the responses, and received no response at all, I am taking the liberty of assuming that by not expressly denying permission, that constitutes tacit consent to post their response.

Am I disappointed in their performance? Yes. Am I surprised? Of course not.

Tex

[ldubois7]

Our whole food system is scary! I haven't eaten anything processed in years, and when I read articles like this, I'm glad I've been fortunate enough to have the time to make my own foods. I even make my own rice flour crackers, and cereal.

Where will it end? I just don't trust the food industry anymore.....we shouldn't have to be frightened every time we put a bite of food in our mouths.....I guess we have to find reputable sources and continue to support them.

[Gabes-Apg]

The relief that I live in Aus, we have strict labelling laws and the producers of gluten free products follow correct protocols!!!

(and the ppm level of gluten in our products is way lower than USA)

[Patricia]

Linda,

Would you mind sharing your rice flour cracker recipe? I'd love to try it out. I have made plantain crackers so far. I like them but a change would be nice.

Love,
Patricia

[ldubois7]

Hi Patricia! How are you doing?

Here are two that I use:

http://www.littlehouseliving.com/make-y ... ckers.html

http://www.naturallyloriel.com/gluten-f ... -crackers/

I loved using plantain, especially making flat bread and waffles!!!! ....but it's very high oxalate.

[Patricia]

Hi Linda,

Thanks so much for the recipes! I am excited to try them!!

I am doing okay. My BMs are okay if I eat rice/potatoes/lamb/wild seafood/bananas/avocados. If I add nut butter, fruit (other than one banana a day) or sugar I get terrible bloating. The slightest change in my diet or increase in stress will result in diarrhea, pretty much immediately. And each time I have diarrhea I lose another pound. I have lost 26 pounds and would really like to stop losing weight. What still really bothers me are the joint and muscle pains. Some disappear only for new ones to pop up, some stay. I don't really understand it. I have been GF DF SF EF and more for nearly a year now...

Thanks again!

Love,
Patricia

[tex]

Patricia,

Are those joint and muscle pains always present, or do they wax and wane sometimes (for example, with the seasons, or some other schedule)?

Love,
Tex

[Patricia]

Hi Tex,

They wax and wane, mostly without rhyme or reason. It started in summer 2014, shortly before being diagnosed, with pain in both hips, followed by the right groin, then the ribs on both sides for a few months, the right foot, then the left foot, lately the wrists/tops of both hands, now the forearms. The rib pain comes back if I accidentally had soy. The right groin comes back after having had diarrhea, sometimes with the period. Most of the pains stay around for a few days/weeks/months and then they disappear. The most persistent issue has been the right leg. The right thigh often hurts and I frequently have the feeling of a sock on the right foot even if I am barefoot or a different temperature perception on the right foot. The tingling has improved tremendously, maybe because of the vitamin B6, B9, B12 that I am taking? They did a nerve conduction study/EMG on the right leg and it was normal.

The pains are usually not present 24/7. They come and go, intense at one time of the day, barely noticeable at a different time of the day, only to become intense again. One day better, one day worse, and all of a sudden they are gone and a different one appears.

It is really weird!!! I believe they are somehow connected to MC as I never had anything like that before being diagnosed. But I don't really understand the mechanism, especially since I eliminated all the offending foods.

Love,
Patricia

[Lilja]

Hi Tex,

They wax and wane, mostly without rhyme or reason. It started in summer 2014, shortly before being diagnosed, with pain in both hips, followed by the right groin, then the ribs on both sides for a few months, the right foot, then the left foot, lately the wrists/tops of both hands, now the forearms. The rib pain comes back if I accidentally had soy. The right groin comes back after having had diarrhea, sometimes with the period. Most of the pains stay around for a few days/weeks/months and then they disappear. The most persistent issue has been the right leg. The right thigh often hurts and I frequently have the feeling of a sock on the right foot even if I am barefoot or a different temperature perception on the right foot. The tingling has improved tremendously, maybe because of the vitamin B6, B9, B12 that I am taking? They did a nerve conduction study/EMG on the right leg and it was normal.

The pains are usually not present 24/7. They come and go, intense at one time of the day, barely noticeable at a different time of the day, only to become intense again. One day better, one day worse, and all of a sudden they are gone and a different one appears.

It is really weird!!! I believe they are somehow connected to MC as I never had anything like that before being diagnosed. But I don't really understand the mechanism, especially since I eliminated all the offending foods.

Love,
Patricia

Patricia,

Your post might as well have been written by me, I had the exact same experience right up till July/August this year. It is weird how we human beings just forget how bad things were, as soon as they get better.

As time has gone by, my pains have subsided more and more. I went for a long walk yesterday, and as I approached my car, my right foot started aching and I thought "Wow! I know this pain, and here it comes back! You have been gone for so long!" I had forgotten how bad it was!

I believe my pains in lower back, hip, groin and feet were/are directly connected to my digestion issues. And as my digestion has improved, the pains are less and less frequent.

I hope this will occur to you as well, Patricia. In fact, I believe it will.

Love,
Lilia

[JLH]

https://www.glutenfreewatchdog.org/news ... community/

[Grahm]

Linda,

Thanks so much for the recipes.

Love,
Connie

[tex]

Patricia and Lilia,

I've had some of those same symptoms, but in my case, they usually didn't last very long — sometimes they lasted for a few days, sometimes a few hours, and sometimes they only lasted for a few minutes. Sometimes they reoccurred, and sometimes they never happened again. I believe you're right that they're connected with MC. They're probably due to either nutritional issues caused by the malabsorption problems associated with MC, or hormonal issues, caused by the inflammation associated with MC. Or of course they could be due to a combination of factors.

The "B" vitamins, and especially B-12, have to be involved, because of the need for B-12 (and to a lesser degree, B-9 and B-6) by the central nervous system. But most of us who have these problems have a relatively high B-12 level. I'm guessing that something interferes with the ability of our bodies to utilize our B-12 supplies effectively. The B-12 is available, but our system is either unaware of it, or unable to use it.

That said, I'm sure that when my symptoms were at their worst, my B-12 level was probably low. For example, before I started taking a supplement, sometimes I could stand in a cool/cold porcelain bathtub, and as soon as I started running warm (not hot) water over my feet, the soles of my feet would feel as though they were standing on hot coals. They would give the impression that they were being severely burned. And yet when I would feel of them with my hand, they would still feel cool to the touch. And of course along with the temperature sensation, there would be the same intense pain that is associated with a burn. But after a few minutes (to maybe half an hour max) the sensation would fade away.

After I started taking sublingual B-12 and B-9, that problem mostly resolved. I say "mostly" because I still have random corrupt nerve impulses that occur occasionally, such as a pain in a finger, or foot, or hand, or arm, or leg, that has no obvious physical cause. And my B-12 level is very high now, at all times. But these symptoms are a part of peripheral neuropathy.

So apparently at some point my B-12, and possibly other vitamins, became depleted (because of malabsorption limitations), and it took too long for me to recognize the problem and begin taking supplements. So some of the damage became permanent.

And I'm convinced that some of these problems are due to methylation issues that can be helped by taking the active forms of B-12, B-9, and B-6, as both of you know. And magnesium probably helps, since a magnesium deficiency can definitely cause muscle pain.

But we're probably still overlooking something something that we may need to correct, in order to completely resolve problems of this type. And we don't know whether these issues are dosage-dependent. IOW, we don't know if too much can be just as bad (or possibly worse) as too little. This area could definitely use a lot of good, dedicated research.

Vitamin D is critically important for proper immune system functioning. But the active form of vitamin D is a hormone, and most of the real "magic" that vitamin D performs, can only happen when it is in the active form. Perhaps some of us have a problem converting vitamin D into the active form. We might have a high blood level of vitamin (because the 25[OH]D test measures the inactive form), but something is interfering with the conversion process. But what most commonly seems to happen is that the active form is available, but it is not being adequately utilized, perhaps because of a deficiency of vitamin D receptors.

We desperately need some research on the expression of vitamin D receptors to shed some light on how/why they occur, and what can prevent or limit the process. Because without adequate availability of vitamin D receptors, the active form of vitamin D is impotent, and nothing can happen. In the meantime we're just guessing.

Note that all of this post is merely ramblings, inspired by personal observations, and not based on any particular published research.

Love,
Tex

[tex]

Hmmmm. Obviously I never should have written that post, because posting it seems to have jinxed me. About half an hour after I posted that message a pain suddenly popped up near the surface of the muscle about midway up the inside of my left thigh. I thought I could walk it out, but that didn't work. It's sort of a pulsing pain that comes and goes, but it fades and then keeps coming back.

I reckon that'll teach me not to think that I'm no longer susceptible to such problems.

Love,
Tex