FDA labeling

[JLH]

http://www.huffingtonpost.com/sasha-cag ... 49985.html

[tex]

Well, I realize that her intentions were good, but that article is so full of ridiculous errors that it does a grave disservice to the cause, IMO. The author obviously doesn't know what she's talking about, as far as the physical details of the disease are concerned, which makes it very difficult to trust anything else that she says. For example:

Gluten causes a celiac's intestine to attack itself and destroy the villi, which are tiny hairs that reach out to absorb food.

Gluten definitely does not cause a celiac's intestine to attack itself. It cause a celiac's immune system to attack it. Furthermore, villi are not tiny hairs. They resemble hairs, (in that they are tiny), but they most definitely are not hairs, and they do not reach out to absorb food, (they don't reach anywhere - the food comes to them).

and then a stomach biopsy -- confirmed that I have celiac too.

Oh really? I don't think so. A small intestinal biopsy, maybe, but not a stomach biopsy.

Celiac explained the anemia. (I wasn't getting enough iron because my stomach couldn't properly absorb food.)

The stomach doesn't absorb any food. The only "nutrient" that the stomach is capable of absorbing is alcohol.

By the time I got to that point, I had lost all interest, so I don't know if the article went on to display any redeeming values, or not.

I was kind of amazed that the Huffington Post would publish an article so riddled with major errors, and then I remembered that AOL recently bought it.

Tex

[sarkin]

I agree, Tex - but I think most people don't pay attention to the science as much as the 'story' of a person, and for that matter, most people couldn't tell their stomach from the small intestine with a map. (Lucky them - that means they don't need to know - it's striking how much more I understand about digestive anatomy since mine went awry.)

I don't mean to say that all publicity is good publicity, I'm just feeling good today and in a Pollyanna-ish mood. (That's really going to slow me down on my 'snappy comebacks' project.) Maybe, despite the shocking lack of attention to reality, some good will come of this, if people can grasp that "even a bread crumb" could make someone ill, and maybe try a little harder to accommodate - or at least believe that when someone says 'I cannot eat X,' the chances are great that the speaker knows what they're talking about.

Back to decontaminating my waffle iron - I have a vision of waffle-ized mashed potatoes dancing through my head... and I'm optimistic that if I feed the first few to my guinea-pig (er, husband), it will be sufficiently detoxed for safe GF/*F cooking.

Love,
Sara

[Stanz]

Tex,

I know I've been guilty of stating things as fact that are technically wrong, as I'm not a doctor, and it drives my husband crazy. The author of this article, Sasha Cagen, isn't a doctor either. Few of us here have the knowledge you have accumulated in your years of research and you SHOULD have been a doctor, as you clearly know more about this than most GI docs. However, I have to say that I agree with the sentiment that Sara/Sarkin posted. Clearly more people need to become aware that what we eat can kill us and I don't see this HuffPo article as having no value by not being technically correct.

Misinformation about GS is everywhere and here is another example. I've tried to find a link to the article quoted here on the Good Housekeeping site, since it was just last month, but cannot find it: http://shine.yahoo.com/channel/health/g ... od-2467355

This article really ticked me off, the "title" printed in the magazine edition said this:
"Should you try a gluten free diet? It may be the trend du jour. But it can also hurt your health---and waistline"

Love that we are the "trend du jour". Not a job goes by when I do not encounter yet another person who has become aware that they cannot digest gluten. If this article helps to make even one more person aware, then it's of some value. Hopefully future articles will become more accurate as this issue becomes more a part of consciousness.

Can we agree that signing a petition for accurate food labeling is a no-brainer? The % of celiacs in the US is nearly the same as those with tree nut allergies. There are entire schools now that do not allow children to even bring peanut butter sandwiches into the school because of ONE student with an allergy. I know that anaphylaxis is a rapidly progressing, life-threatening allergic reaction and GS just slowly kills us, but where's the line?

My 17 month old grandson just got his results back from Enterolab. He got my 501 and another GS gene from his Dad's side. Just learned that 3 sisters that I know, oldest - 42 - twins - 38 - inherited the breast cancer gene from their Dad's side. The twins only had mammograms because their older sister was dx w/cancer. One of them has cancer, the other has what will likely be cancer, so they have some hard choices to make. IMO, everyone should be genetically tested to see what their future health issues may be, but I don't see that happening in the US unless we get Universal Healthcare and have a system built around curing illness instead of treating it.

[tex]

Hi Connie,

I appreciate your viewpoint, and I certainly agree that the article might help to improve public awareness of these issues, but I'm a firm believer in personal freedoms, and one of the freedoms that I believe in is the freedom to trust the accuracy of what we read in a national publication, especially one that's specifically written to "educate" people. True the author is not a doctor. That's all the more reason why she should have taken the time to check her facts, before submitting that article for publication. This is not rocket science. All of that information is readily available, and 5 minutes on Google could have done wonders for her accuracy. If she had just bothered to read her pathology report, she would have at least realized that she wasn't diagnosed by means of a stomach biopsy.

If she had just been expressing her personal opinion, I wouldn't have said a word. But she wasn't expressing her opinion - she was describing the details of a disease, and she totally blew it, because she was too lazy, (or maybe too arrogant), to do a little research to learn the truth about what she was describing. She wrote fiction, and celiac disease is not a fictitious disease. If she had been writing an article in her local celiac chapter newsletter, it wouldn't matter much, but if she's going to write for a national publication, I don't see any reason to cut her much slack for sloppy writing. It's her job to get it right. That's what she gets paid for. Right?

By the way, how in the world have you been doing? Well, I hope. You work too hard. Long time no see.

Tex

[Stanz]

Hi Tex,
You are right, of course, that she should have done her homework instead of writing things that are inaccurate. I don't know how long or how much she has investigated the facts that we know, she sounded rather evangelistic - something I am guilty of too often, but at least she used whatever pull she had to get a story out there about this - accurate or not, that means something to me.

Anyway, I am fine, thank you for asking, still working too much but love my people and what I do and have a short break here before I start another job. Still trying to get more people in my family to be tested and as I said above, my 17 month old grandson did the Enterolab tests and is GS and while it is daunting for my daughter, she is also GF and at least they know. Other grandkids are great, husband left his stressful job last Fall and spent the next several months consumed with his father's health and eventual death in Feb. and things are just settling down with all of that now and it's nice to have him back. Oldest daughter just got a full ride scholarship to nursing school.

Still doing well with my health issues and will be gluten free for 2 years in August. My weight has stabilized at about 124 lbs. and I'm getting used to it. People say I look great and probably the biggest visual change is my skin/coloring. I've gotten to where I can now literally see GS in people and since I am the one who feeds them, I am also the one who hears just how fast knowledge of GS is spreading. Out of an average crew size of 30, there are usually 6 or 7 people who KNOW they are GS now. Last August I stopped taking the L-Glutamine and am down to 1 probiotic and often forget to take it. Still taking Vit D, B6&12, and all the other stuff I take for the joint damage done before I went GF. Have found that I now can tolerate dairy in small portions, which my ND says is often the case if you go GF. But - that said - if I get glutened - even a small bit - the D returns w/a vengeance until the poison is out of me. It is an immediate reaction. How we all lived with this for so long is pretty amazing, isn't it?

I continue to hope that more people will try L-Glutamine before going the steroid route, it worked amazingly fast for me, but I had already been GF for 4 months when I started it.

So, how are YOU? I do check in here often and am tickled to see that Gabes and Joe have met and Joe is moving to Oz now, and it's good to see the core group still keeping on keeping on. Some day I will have the time to contribute more here. I think of you every day.

Connie

[Polly]

Connie!

Good to see you here! I always enjoy your perspective. Enjoy your break, and good luck in your next job.

Love,

Polly

P.S. FDA labelling requirements are only the beginning for people like me with multiple sensitivities. I avoid most of the big 8 allergens anyway. But I need to know a much greater level of detail........ for example, exactly what the "natural flavoring/coloring" is made from - even if it is carrot, celery, beet, etc. I find that many manufacturers now hide behind the statement that there is no way they could ever know everything in their products, because they get so many ingredients from other distributors and therefore can't be expected to know what's in everything. I find this attitude scary. Do you think we'll ever get to the point when every ingredient must be on the label?

[tex]

Connie,

I'm glad to "hear" that you're doing well, and congratulations to your daughter for the nursing school scholarship. That's great!

That's an interesting observation about the number of people you encounter who are aware that they're gluten-sensitive. That's 20% or better. I wonder if people involved in the performing arts are more aware of this issue than the general population, or if that percentage apples to the general population as well, but no one is aware of it. Dr. Fine's research has shown that 29% of normal volunteers show gluten-sensitivity in stool tests, so 20% awareness is certainly not an unrealistic number. It's kind of surprising how fast this "awareness movement" is catching on, despite the best efforts of celiac doctors, and "do-gooders" in general, who are valiantly trying to discourage everyone from adopting the diet, without a diagnosis.

Of course, since the classic celiac diagnostic criteria are only capable of diagnosing a small percentage of people who are gluten-sensitive, I consider those who try to discourage the adoption of the diet, to be very self-serving, and inconsiderate of the health of others. If they expect people to wait until they are officially diagnosed, before adopting the diet, then the guys in the white coats need to learn how to properly diagnose gluten-sensitivity. They shouldn't expect their patients to meekly suffer in silence, simply because the existing diagnostic tests are so insensitive.

I agree that L-Glutamine might be beneficial, in conjunction with the diet, for some people. It has some unique properties.

As for me - I'm doing OK. Thanks. No real complaints. Looking forward to the day when you can do a lot more posting.

Love,
Tex

[tex]

I find that many manufacturers now hide behind the statement that there is no way they could ever know everything in their products, because they get so many ingredients from other distributors and therefore can't be expected to know what's in everything. I find this attitude scary. Do you think we'll ever get to the point when every ingredient must be on the label?

That's a lame excuse, and I predict that some day, (admittedly, probably a long way in the future), that obstacle will fall by the wayside. When you consider that we can analyze a sample of beef, for example, and quickly and inexpensively determine the area in the world where it was produced, with virtual 100% accuracy, it seems ludicrous that accurate ingredient labeling is held hostage by such a lame excuse.

Why on earth would a manufacturer buy inputs for finished products that they are willing to print their name on, without requiring the supplier to provide an accurate certification of all ingredients? After thinking about this for a while, the obvious answer is, "because they don't want to know". There's no other logical reason. If the supplier actually doesn't know what the ingredients are, then why on earth would anyone seriously consider buying such a "pig in a poke"? The liability risks alone, rule out that option. That brings us back to the real answer - they just don't want to know, or they don't care, (which still means that they just don't want to know).

At least that's how I see it.

Love,
Tex

[Zizzle]

Connie,
I have an old jar of L-Glutamine powder sitting in my cupboard. I bought it last year but I never really figured out how or when to use it. What's your regimen?

[sarkin]

Polly,

I think we'll get to the point where some manufacturers will disclose, and control, in order to market to people with multiple sensitivities... once the word gets out that those people will simply not buy mystery mixes any longer. In fact, I think this whole 'gluten-free is a fad' backlash is precisely the alarm bell of resistance to some long-overdue diligence. They don't know what's in their products? Why the heck not??? I see that Tex is already chiming in along these lines - haven't even read it yet, my friend, but I agree ALL THE WAY!

I'm already there (no info = no purchase), and I don't even know what my intolerances are yet - if I'm going to take a chance, it won't be on 'flavor' or 'color' but on 'yumyumyum' like the smoothie I made this morning - maybe moving a little fast into new territory, but I know exactly what made it delicious... and therefore, if something goes wrong, I know what to do about it.* It takes more time than using packaged foods, but I've lost so much time being sick, it still seems like I'm coming out ahead in the end. I do appreciate your research on products, and will probably be more adventuresome with convenience foods when I know more clearly what to avoid.

Connie,

I'm going to go back and read your L-Glutamine experience from past posts. Thanks for that thought, and best to you till you have time to post again.

*cashew milk/cream, raw cacao nibs, banana, frozen blueberries, and unsweetened shredded coconut - that last being the new ingredient...

[sarkin]

Tex, I agree even more rabidly now that I've read what you said.

Why, indeed, would *anyone* buy such a pig in a poke - you don't have to be GS to be harmed by suspect ingredients from suppliers (who are being driven hard to keep their prices low by these same manufacturers, I'd guess). Nothing could make it more clear that the entire motivator of their choice of suppliers is moneymoneymoney, and if they can get it cheaper, they will, no matter what falls by the wayside. Most especially the health of a 'susceptible' few, whom they can write off as rare, or as cranks who suspect ghosts behind labels that they would like to pretend aren't there.

Kelly's cosmetics research has turned up manufacturers who say 'sometimes we use x ingredient derived from soy, and sometimes we get that same ingredient derived from something else' - that is fair and clear. But they're not pretending it would be impossible to answer that question. If they knew for sure they had a strong SF market, willing to pay either a higher pricer or a fluctuating price for a product that was certain not to contain soy, they might rethink that. I'm not saying that should be their mission... but I do appreciate their willingness to communicate. And it inspires confidence that when they say a product is GF/SF, they know what they're talking about. I may even buy myself a lipstick just to reward that sort of behavior.

Harumph.

Love,
Sara

[Stanz]

Connie!


P.S. FDA labelling requirements are only the beginning for people like me with multiple sensitivities. I avoid most of the big 8 allergens anyway. But I need to know a much greater level of detail........ for example, exactly what the "natural flavoring/coloring" is made from - even if it is carrot, celery, beet, etc. I find that many manufacturers now hide behind the statement that there is no way they could ever know everything in their products, because they get so many ingredients from other distributors and therefore can't be expected to know what's in everything. I find this attitude scary. Do you think we'll ever get to the point when every ingredient must be on the label?

I don't think we'll ever get to the point of full disclosure unless it is made law and being a conspiracy nut, it's all about money, IMO. They just don't care and never will unless it effects their bottom line.

Your remission was a great inspiration to me, BTW, speak of it often.

Zizzle & Sarkin, Here is a link to my protocol as of Nov. '09: http://www.perskyfarms.com/phpBB2/viewt ... ght=#68897

I only took the Immodium until the D stopped and it stopped in less than 3 wks, as I recall, but I had already been GF for over 4 months at that time and that is a biggie, IMO, as I didn't get my Enterolab results until after I'd been using the L-G for about a month.

Tex, I have been on jobs where 1 in 3 people were GS/GF, on one job this included the dog. It has been truly interesting to see how much more aware people are about what they eat and this experience has completely changed my business and what I feed my crews. People are very appreciative to be served food that is as close to natural as possible. I rarely buy packaged foods anymore. I make salad rolls, lettuce wraps, fish tacos, soups, Yumm bowls, etc. now and let people build their own according to what they can eat, rather than adding cheese, soy or meats in advance. It can be a bit tedious to have 10 bowls of "ingredients", but they really love knowing what they are eating and that makes me happy. I don't know if being in the performing arts arena makes them more aware, maybe the actors, but crew people/clients vastly outnumber the talent on a shoot and we don't need to be pretty.

Couldn't agree more about this: "They shouldn't expect their patients to meekly suffer in silence, simply because the existing diagnostic tests are so insensitive. " Have just been through this with my grandson/daughter. He immediately began exhibiting signs of GS as soon as he started eating crackers/pasta and baby foods that contained gluten. They had him into the ER on more than one occasion because of D and at no time did anyone suggest diet as a cause. The doctors, including her pediatrician, had pretty well decided that he had Crohn's, which is when I ordered the Enterolab tests for him. It truly is just shocking to me how ignorant western med is on this. GS is now on my medical record, at least my MD did that for me. Would still love to throttle the Head of Rheumatology at OHSU who wanted to put me on methotrexate for my "arthritis".

I'm glad to hear you have no real complaints, Tex, I hope you continue to do well.

I am going to start a new thread about L-Glutamine, as it has been such a lifesaver for me.