Question About Cross-Contamination

[jcfraun]

I have a 10-year-old daughter that was diagnosed with celiac about a month ago. Previously, I was gluten-free, but with no diagnosis (was tested after being gluten-free for several months), hadn't been very cautious. Now, I'm treating myself as full-blown celiac - I have spent most of my life in some sort of discomfort until going gluten-free.

So, my question is about cross-contamination. I have read some people saying that they determine whether they can eat a certain food due to cross-contamination based on whether they feel symptoms. Is that a reasonable thing to do? Will you always be able to tell if you've been glutened? It seems a daunting task if you cannot even tell if it's happened (i.e., in a restaurant or at school, etc.) .

On a related note, we are Catholic and they ordered us gluten-free hosts (or actually low-gluten, I believe). How can I tell if these are ok for her to have?

Thanks!

[pricklypear1971]

You don't always feel the effects of gluten. A good chunk of Celiacs are asymptomatic.

Some people develop gluten signals as they go along, but it isn't always reliable since it can show up days later.

Celiac disease requires a gluten free diet. Not a low gluten diet. The tiniest bit - a fraction of a teaspoon of flour, can set off an autoimmune reaction.

Sorry, forgot the wafers. You need to read the ingredients list and you should be able to tell if they contain gluten. If you're unsure just post the ingredients here.

[IrishHeart]

"Low gluten" or "Gluten light" is NOT GLUTEN FREE.

Anytime a celiac ingests gluten, it triggers the autoimmune response, whether you have explosive & immediate diarrhea or brain fog for three days or sores appear 2 days later or NOTHING. I personally, had a whole cascade of symptoms last for 3-4 weeks from

trace CC.

It's still causing damage whether people "feel it" or not.

The autoimmune inflammatory response from gluten exposure lasts months.

You may need to read about celiac disease in depth to understand the ramifications of cross contamination.

[jcfraun]

I do understand that that is the case - that cross contamination is bad no matter what. I think that's why I was confused that people seem to use their physical status as a barometer of when they've been glutened. I think in our society it is very hard to know for sure that we're avoiding cc if we aren't having a reaction. So, in short, I've decided to not get pizza at Domino's (at first I was excited for my daughter's sake, I have to admit). We do our reasearch and eat only the gluten-free options at restaurants.

I will keep taking it day-by-day. I have to trust her to do the same when I'm not with her. One serious night of pain on her 6th gluten free day after intentional ingestion of pasta did more to convince her that I ever could have (she was largely gastro symptom-free before diagnosis). She misses certain things, but overall hasn't worried too much about it. I think it helps that I consider myself the same as her and am treating myself as if I have celiac. I have a first cousin and now a daughter with it and MANY other untested relatives that are highly suspect. I'd be willing to bet money that I'm correct in my self-assessment!

Thanks for the input!

[IrishHeart]

No domino pizza. No way that is okay for a celiac.

[pricklypear1971]

  On 5/10/2012 at 11:02 PM, jcfraun said:

I do understand that that is the case - that cross contamination is bad no matter what. I think that's why I was confused that people seem to use their physical status as a barometer of when they've been glutened. I think in our society it is very hard to know for sure that we're avoiding cc if we aren't having a reaction. So, in short, I've decided to not get pizza at Domino's (at first I was excited for my daughter's sake, I have to admit). We do our reasearch and eat only the gluten-free options at restaurants.

I will keep taking it day-by-day. I have to trust her to do the same when I'm not with her. One serious night of pain on her 6th gluten free day after intentional ingestion of pasta did more to convince her that I ever could have (she was largely gastro symptom-free before diagnosis). She misses certain things, but overall hasn't worried too much about it. I think it helps that I consider myself the same as her and am treating myself as if I have celiac. I have a first cousin and now a daughter with it and MANY other untested relatives that are highly suspect. I'd be willing to bet money that I'm correct in my self-assessment!

Thanks for the input!

If you have a BJ's restaurant nearby they do a great job at gluten-free and have pizza. Against The Grain makes a FABULOUS frozen pizza. The best I've had so far - even better than fresh. Find one of those for y'all.

[IrishHeart]

  On 5/10/2012 at 11:25 PM, pricklypear1971 said:

Against The Grain makes a FABULOUS frozen pizza.

I agree!! if you cannot make your own, this one is awesome!!!

[jcfraun]

Thanks for the pizza recommendation. I found a store that carries their products and will head there this weekend! As far as the restaurant goes - no dice...they don't even have one in our state. Thanks again!

[Takala]

First, you start with either selecting a natural food such as a plain meat, vegetable, fruit, or you read the label. And you are also going to be looking at the manufacturer (reliable reputation, or not so much).

Use the kung- fu of the Google to check foods out. Say gluten free and the name of the item, and see what comes up.

Many people become more sensitive to cross contamination after a few years. Then you can tell. Sometimes I eat something that is supposed to be gluten free, but I react, (my symptoms are neurological, so they are different than a lot of people's) and there is no mistaking my reactions. I test my balance, and if it is off, there it is. And my vision is affected. Maybe I get a nice neck spasm or two, a headache. Then I end up doing a bit of sleuthing to see what could be going on, and was this product manufacturer changing the way they made this, did they change ingredients or sources, or started sharing run lines with wheat products, etc. I've had to give up a lot of (manufactured) foods that I was previously okay with, because manufacturers who are not specifically making items for the gluten free market are constantly looking for ways to cut corners and save money. (example, Hershey's chocolates moved their plant to Mexico, and at the same time they started getting cagey about disclosing all ingredients in their flavorings. A lot of people can eat plain Hersheys chocolate bars, some cannot. ) And sometimes even the "gluten free" labeled manufacturers in the USA change ingredients or sources, and if they are not testing to "x" parts per million for every batch, you can get a nasty surprise. Rare, but it happens, because we don't have the labeling standards yet, and it is all voluntary.

I don't stress if I am not always able to tell - I think I am, but this is not going to be the end of the universe. I have read that the neuro people are pretty sensitive, and I am getting there. If we don't make mistakes, we don't learn anything.

[CeliacAndCfsCrusader]

Having Celiac Disease means ZERO gluten in your diet.

I agree with the folks that say "learn everything you can about Celiac" and then teach your kid. You're on the right track.

I am hypersensitive, but I don't pretend that I haven't been c/c'd without symptoms...I assume that I have. Despite the 'chance' that I won't FEEL it, I KNOW it is poisoning my insides.

I never cheat. It's poison. Don't take chances by increasing your chances of being c/c'd.

I used to make pizzas, there is NO way they can serve you a safe, gluten-free pizza.

PS: Against the Grain makes pizza AND plain crusts. They saved my life! Truly a great product. Their baguettes are to die for too!