zarfkitty

I can't claim an "official" diagnosis of celiac, either.  I don't even have the celiac genes.  But I have rock solid proof that I have an immune response to gluten: I eat gluten, I get sick.

So I call myself a celiac because that is best word to describe my body.  It's not like anybody has ever asked for my membership card!  

Please listen to yourself and your body and do what makes you healthy.  The really good news about gluten intolerance is that you don't have to get a prescription or negotiate with an insurance company for expensive treatments.  Our best and only treatment is in our own hands and that makes us lucky people compared to people with other chronic illnesses.

-Shannon

p.s. I really know the feeling of wanting validation of your concerns... Let us be that for you instead of the stupid doctor!

Our entire family eats gluten-free and attends a Lutheran church. (Lutheran = potlucks at least once a month. )

I don't have any particular ideas to add, but here are my experiences:

One woman at our church always brings the most amazing baked beans to potlucks. Because we are friends, I was able to ask her about the ingredients and the preparation process and have felt comfortable eating her dish. It is in a large container with a long spoon so I don't fear CC.

We always bring something main-dish-y that we really love to eat to share with the others. That way we are sure to get a main dish, we are sure to like it, and we're sure it's safe.

We always bring a little this-and-that from home to fill out our plates just in case no one brings fresh fruit or other safe foods. You can never tell what you are going to get at a potluck, so it's nice to have a fallback plan. The first couple potlucks after diagnosis we got some strange looks from the other members for bringing single-portion extras, but after we explained the rigidity of our diet, no one ever was bothered by it.

Lastly there is a "faction" (haha) at our church that is subversively plotting to require allergen/irritant labels on potluck foods. We're only kidding of course, but this person has celiac, that man is on a salt-restricted diet, this little girl hasn't outgrown her egg allergy yet, and that person has a nut allergy, etc. We've gotten a few good conversations started and people are beginning to realize that when a person on a restricted diet asks you detailed questions about your recipe and cooking methods, they aren't being rude, they're being safe.

I wonder if Frito-Lay products vary in safety by region.  At a support group meeting, someone told me that the products processed in the Plano, Texas plant were safer than other Frito-Lay products.  This was only her subjective opinion based on eating Frito-Lay products on road trips that had been processed at other plants.

Since I live in Austin, most of the Frito-Lay products available to me are from the Plano plant.  I have never reacted.  I do check to make sure I'm buying Plano processed product before I purchase.

I'm curious where the chips that caused reactions were processed...

Thanks to everyone for your support!  This is the best forum I've ever belonged to.

Just for the record!  I have been properly taught my manners.  The thank you note went out in the mail immediately and I absolutely know the family didn't mean anything by it.  I know that $40 is amazingly generous for a teacher gift.  I would never, ever ever ever ever express these kinds of emotions to people who don't have celiac.  I only needed to whine and cry for a minute in the presence of people who know what it's like.

Maybe in a few years I can just pass the gluten gifts along without even paying them much thought.  THIS YEAR, it feels like a cosmic conspiracy trying to make me feel worse.  For example, a huge tin of Ghirardelli MILK chocolates arrived in my mailbox today and I'm CF in addition to gluten intolerant.  

Our extended family will be cashing in on all these goodies when we go visiting... everyone in my house is Gluten-free Casein-free.  (And we'll be left out of the Christmas meal festivities for the first time ever this year too... I saw this coming and made a Gluten-free Casein-free Turkey dinner for Thanksgiving and everyone came to my house so we've already had it "our way" and they get it "their way" once too - a good compromise.)

Thanks guys.  I've realized I have a reason to celebrate: this will be the first Christmas in a very long time that won't cause me to gain 5 "holiday pounds"!