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Celiac.com Celiac Disease & Gluten-Free Diet Forum: Sensitivity - Celiac.com Celiac Disease & Gluten-Free Diet Forum

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#1 Guest_A.L.-ergic77_*

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Posted 29 January 2009 - 09:54 AM

I'm new to this gluten diet (even though I've had celiac my whole life). I've been reading as many posts as possible. I am getting confused on one thing though, the different sensitivities people have toward gluten. I don't understand how some people are writing that a certain product doesn't bother them even though it was manufactured on equipment shared with foods that contain gluten. Or that only super sensitive people should be careful of certain products.

I guess what I'm saying is that aren't the super sensitive people the ones to go by. Because they are affected by even the smallest bits of gluten they come into contact with. I know that really nothing bothers me when i eat it, but I know I'm still allergic to it. Even the smallest particles of gluten that people come into contact with are affecting them whether they know it or not. Getting sick shouldn't be the way of judging whether you've been gluttened or not.

I guess I'm just confused about this. Do certain amounts of gluten not affect people (inside) the same way as others. Without the conflict of getting sick or not, doesn't any amount of gluten hurt all celiacs in the same way?
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#2 User is offline   brigala 

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Posted 29 January 2009 - 01:52 PM

View PostA.L.-ergic77, on Jan 29 2009, 10:54 AM, said:

Without the conflict of getting sick or not, doesn't any amount of gluten hurt all celiacs in the same way?


That's a good question. I am not sure I have a definitive answer.

I know that if I accidentally eat a small quantity of gluten (like once I was making pasta for my family and forgot I shouldn't eat a noodle to see if it was done), I don't usually have any symptoms UNLESS I then go and drink milk. I don't take that to mean that I should just eat things with small amounts of wheat in them and avoid milk afterward so I don't feel the damage. I know that the symptoms I get from milk are the result of damage caused by the gluten. I don't want to do the damage in the first place.

I won't have any symptoms if I accidentally eat something that contains a small amount of barley flavor or something. But I avoid those things anyway, based on the knowledge that I am probably doing damage whether I feel it or not.

Oats are a little different. I have, in the past (early in my gluten-free days), eaten regular non-gluten-free oatmeal and not had any symptoms. They have done controlled studies where they have done biopsies on Celiacs eating oats and Celiacs not eating oats. They find that for almost all of them, the biopsies show that oats do not do any damage. (The oats they used in the study were gluten-free oats). Even though I have not reacted to them, because I know oats are often contaminated, I now won't eat oatmeal or granola bars and such unless they're certified gluten-free. But there is supposed to be a threshold (which is probably different for different Celiacs) of gluten which can be tolerated. So, since I know I can eat oats without symptoms (even in fairly substantial servings), I am confident that OATS aren't a problem for me, but contamination of oats might be (whether I feel it or not). If there's something I want to eat that has (not gluten-free-certified) oats in the ingredient list, as long as it's not in the first few ingredients, I will allow myself to have a bite or two. My thinking is that the risk of significant contamination is pretty low. Am I right? I don't really know.

Usually, items manufactured in the same facility as wheat-based products have a pretty low level of potential contamination. Many manufacturers these days do a pretty good job of cleaning equipment between runs. The tiny quantities of gluten which may cross-contaminate are usually pretty small. From what I understand, most Celiacs probably can tolerate limited amounts of cross-contamination without doing damage to their systems. Some Celiacs will have symptoms and/or test positive for gluten antibodies even when the amount of gluten they have ingested is extremely minute. These people probably need to be even more careful, and may avoid foods which have ever been in the same vicinity as wheat.

I try to find out a little about manufacturing practices before making a decision. My local pizza place said they'd be happy to put pizza toppings in a container for me when I order a pizza for the kids, so I can bring them home and put them on my own crust. But I declined the offer... too much flour flying around the place for me to feel comfortable eating anything out of there. Trader Joe's has a manufacturing policy statement on their website that I am very comfortable with, and I don't worry at all about eating Trader Joe's brand foods even if they are manufactured in facilities that process gluten-containing ingredients. I avoid most generics because I know they often get ingredients from a variety of suppliers, and some may be better than others about cross-contamination of allergens. I try to stick with brands that have statements available concerning cross-contamination potential. So it's all case-by-case.

And... 90% of what I cook now is made from SCRATCH. We even grow most of our own meat here (I raise sheep) or trade with other farms for animals on the hoof. That way I know where they're butchered, processed, and wrapped. So the limited amount of food that I get from pre-packaged sources (I hope) shouldn't put too much cross-contaminated gluten into my diet.

So... that's my very non-expert understanding of the situation. I don't know whether it really helps or not.

-Elizabeth
gluten-free since mid-2007.
"Official" diagnosis is IBS & "Fibromyalgia-like symptoms" -- which have disappeared with the gluten-free diet. Mom & Sister have since been diagnosed Celiac through blood/biopsy tests.
Allergic to walnuts, pecans, and dates. Trouble with soy in high concentrations. OAS to many other raw fruits and vegetables. Occasional bouts of lactose intolerance, but usually dairy is ok unless I've been recently glutened.
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#3 User is offline   dilettantesteph 

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Posted 30 January 2009 - 04:59 AM

I was at the GI recently and we discussed that. They said that they think that some are more sensitive than others to small amounts, but they don't know for sure. It may be that some are just more symptomatic. Maybe the sensitive people are like the canary in the coal mine. You could go crazy trying to keep every tiny bit of gluten out of your diet. It seems easiest only to worry if you have symptoms.
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