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    Do you have questions about celiac disease or the gluten-free diet?

Haylsinator

Ok, Not To Be A Total Skeptic...

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Is this for real? 1/60th a teaspoon of wheat flour had a traceable reaction? That's crazy! Do you happen to know where this study was stated? I'd love to read about it.

I'm wondering if I should go completely unprocessed. I'll have to review what I eat and see if I can make the modifications.

Again, thank you for all of the responses. It's been an extremely interesting and educational read!

federico biagi, "a milligram of gluten a day keeps the mucosal recovery away: a case report" nutritional reviews 2004

found this in "The Gluten Effect" by Drs.Petersens

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I know it was said before, but...yeah, this is pretty much absolutely true, best we can tell.

- studies on how well cleaning works on machines in the food industry are not done for every type of protein, but rather for a generic 'best guess.' The only study I've found that was done to determine how well cleaning protocols work on our food processing machinery for specific proteins only looked at a few, and discovered that the effectiveness differs by protein. The difference was 15% or less of the protein remaining, as I recall. But I have found no studies on how effective cleaning protocols are on gluten, specifically.

- On a personal level, restaurants and shared households are more of a risk, most definitely. My own household is gluten free completely, down to our soaps, but we have some differing levels of sensitivity. I cannot use any pans, pots, or even plates that the rest of my family uses without scouring them out again, AFTER washing in the dishwasher, or about half the time I get sick off of them. I cannot eat out at restaurants without getting quite sick. My own symptoms are not gastro-intestinal but rather neurological, so they are fairly specific and easy to differentiate from my allergies as a result.

- I don't believe my own difficulties are an isolated incident. A study was published in The American Journal of Gastroenterology last year on how well celiacs are healing. Out of 241 adults, 57% of those who had strict adherence to their diets were still showing intestinal tissue damage after 5 years. (an article re: the study can be found here: http://www.healthnowmedical.com/blog/2011/04/20/why-do-some-with-celiac-disease-never-heal/ )

Personally, from my own experience, one hypothesis on why people are not healing may be that our 'gluten free' diet is not as gluten free as many of us may need it to be. Symptom free may not be 'damage free,' as it were. I do not know if this is the case, obviously, but most doctors are NOT biochemists or very knowledgeable about the food supply, and so do not realize how easily and frequently we can get gluten even on a very strict gluten free diet. As a result, a possible solution is almost never to try an even MORE gluten free diet than one has been previously on.

shauna

+1

good post.

also good to know that i'm not the only one who can't eat in resturants. i agree that symtom free is not the same as damage free, as far as we know.

i've heard bad advice on the board before that "; it's ok to eat in resturants that have gluteny kitchens, i'm soooo sensative and i do it all the time, no prob" it's frustrating to hear, when you know that just because you don't feel the damage, does'nt mean it's not occuring.

i have DH, and have read that ppl w/ DH are the most sensative (Dr. Green) , but what does that mean? doesn't it just mean that DH reacts to small amounts of gluten more noticably than other kinds of symptoms. so, is it really 'out of sight/ out of mind??'

and also, gluten is cumulative ; whats the difference between getting a 1000ppm dose and 10 100ppm doses over a few days?

we don't know, really, but i have a feeling that just farming out your gluten exposure into lots of tiny doses that you hope not to notice in the form of discomfort is'nt going to protect you from the damage, and from opening the door for cancer, or whatever else.

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- I don't believe my own difficulties are an isolated incident. A study was published in The American Journal of Gastroenterology last year on how well celiacs are healing. Out of 241 adults, 57% of those who had strict adherence to their diets were still showing intestinal tissue damage after 5 years. (an article re: the study can be found here: http://www.healthnowmedical.com/blog/2011/04/20/why-do-some-with-celiac-disease-never-heal/ )

Personally, from my own experience, one hypothesis on why people are not healing may be that our 'gluten free' diet is not as gluten free as many of us may need it to be. Symptom free may not be 'damage free,' as it were.

shauna

I agree.

Some people with celiac disease are asymptomatic--yet have completely flattened villi. They are stunned to learn they even have the disease! When hard pressed, they will say they did have headaches or some heartburn or reflux, but they did not associate it with celiac disease. Most people think it is a disease that is all about

"smelly stools." :huh:

Also, every time someone posts with symptoms and says "But I am completely gluten-free, what am I doing wrong?", I want to say because there's waaaaay more to it than just giving up gluten.Doctors do not help much in this regard. I think there are many reasons why the GUT does not heal, including those listed in the article you cited.

Most people are told "just go gluten-free"..as if that is the solution. But, in actuality, dairy is not digested well at all because of the blunted villi (the tips of the villi is where LactASE is produced and that is the enzyme necessary for digestion of lactOSE)and and frankly, without excluding lactose from the diet (at least initially) people will continue to experience GI or other symptoms. While they are not symptoms from gluten, they are similar and therefore, the person is perplexed as to why he/she continues to feel so lousy and possibly, living in the bathroom. :huh:

Other foods that are difficult to digest such as soy, beans and some fatty meats will also cause trouble simply because the GUT IS NOT HEALED yet and perhaps a lack of sufficient digestive enzymes or unbalanced gut flora (lack of sufficient good bacteria) or a small intestinal bacterial overgrowth is making digestion difficult.

Why some people who are gluten-free for 3 or 4 or more years continue to have symptoms suggests either other food intolerances, an infection, yeast, refractory sprue or non-compliance--even if it is unintentional-- because gluten sneaks in everywhere. So, yes, CC from sources at home or in a restaurant will continue the antibody production, making it harder for someone to fully heal.

The point is....there are many reasons why people continue to be "glutenized" and many reasons why a leaky gut does not heal and finding them all is key to someone's full gut recovery.

As I said earlier, either we live in a bubble :blink: and become paranoid about it :ph34r: or we simply eat as "cleanly" as we can and root out what other factors may be keeping us from healing.

Takes major detective work sometimes to figure it all out.

:blink:

But, feeling better is the reward. :)

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- I don't believe my own difficulties are an isolated incident. A study was published in The American Journal of Gastroenterology last year on how well celiacs are healing. Out of 241 adults, 57% of those who had strict adherence to their diets were still showing intestinal tissue damage after 5 years. (an article re: the study can be found here: http://www.healthnowmedical.com/blog/2011/04/20/why-do-some-with-celiac-disease-never-heal/ )

Personally, from my own experience, one hypothesis on why people are not healing may be that our 'gluten free' diet is not as gluten free as many of us may need it to be.

shauna

Thanks for this link Shauna, sounds like an interesting study - going to check it out just now. :) You've been such an inspiration to me on this forum, to always keep gluten CC down to an absolute minimum. Thanks for posting your experiences :)

My thoughts on the topic - I'm always feeling 100% when I'm eating whole foods. Then I get bold enough to start "experimenting" with packaged gluten-free cereals, biscuits etc, starting down the feeling sick road that ends in tears and an unhappy stomach :( I cut back to whole foods, and then feel better again... It's a vicious circle :P

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My thoughts on the topic - I'm always feeling 100% when I'm eating whole foods. Then I get bold enough to start "experimenting" with packaged gluten-free cereals, biscuits etc, starting down the feeling sick road that ends in tears and an unhappy stomach :( I cut back to whole foods, and then feel better again... It's a vicious circle :P

DITTO! :D

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DITTO! :D

Isn't it mildly humorous that we consider our culture evolved and more sophisticated and yet we seem to be poisoning ourselves with excess sugar, dyes, hormones, etc. All that technology just to learn that the simpler ways were safer for us all along.

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Shauna--that is a very scary article to me...I am glad I read it though--thanks. There is another guy with the same views the "Dogter" I think he is called; a vet with Celiacs. He has many interesting things to say also...I wonder if I will ever be "truly healed?" TErri O :(

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Shauna--that is a very scary article to me...I am glad I read it though--thanks. There is another guy with the same views the "Dogter" I think he is called; a vet with Celiacs. He has many interesting things to say also...I wonder if I will ever be "truly healed?" TErri O :(

I'm with you....the thought of refractory celiac scares the bee-jeepers out of me... :blink:

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