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cruelshoes

How Do You Handle The Food At Your Support Group/rock Events?

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I think I have made the decision to start a ROCK group. I want my son to be able to share food and fun with other celiac disease kids. Now I am thinking ahead to the food aspect. I want all the kids to be able to eat all the food without worry about accidental glutening or CC. I keep a totally gluten-free house, but many do not. How do any of you that belong to support groups or ROCK groups handle the food? And what about people who have other intollerances like dairy? How do you handle that?

I know plenty of sloppy celiacs that do not do half of the label reading and research that I do before eating things. I really want this to be a safe experience for everyone. I would love to have any input.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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The only way you can truly be safe is if you cook it yourself... and I know that isn't what you want to hear :( . After the group gets going for awhile and you know who to trust, then you might be able to talk to them about splitting the cooking. What we do for the get togethers that I hold is that everyone chips in $3 or $4 and I cook. It isn't the ideal, but it is far better than being sick.


Symptoms on and off my whole life

Major symptoms starting 2005

Zero blood antibodies

Gluten free with positive dietary response since April 2007

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I lead a celiac support group. I also have 4 other food allergies, besides gluten intolerance. Many gluten-free food companies send me free samples for my group members. However those gluten-free foods often contain dairy, soy, eggs and cane sugar to which I have allergies. So when I provide free gluten-free samples to my group, I also provide literature about the ingredients of the food and mention any common allergen ingredients in the samples for other members with food allergies.

I also organized and supervised the last 2 celiac awareness walk and gluten free food fair events in my area. Only a few (3?) of the food companies sent food fair samples that I could actually eat. So I packed my 'safe' fruit and sausage lunch in case I needed food during the event. I actually didn't have time to eat lunch until after I returned home 8 hours after breakfast. Nevertheless, I never assume all gluten free foods are safe for me, because I have those 4 other food allergies.

BURDEE


Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.

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I think I have made the decision to start a ROCK group. I want my son to be able to share food and fun with other celiac disease kids. Now I am thinking ahead to the food aspect. I want all the kids to be able to eat all the food without worry about accidental glutening or CC. I keep a totally gluten-free house, but many do not. How do any of you that belong to support groups or ROCK groups handle the food? And what about people who have other intollerances like dairy? How do you handle that?

I know plenty of sloppy celiacs that do not do half of the label reading and research that I do before eating things. I really want this to be a safe experience for everyone. I would love to have any input.

A rule at our Celiac group is that all home prepared food on the table has to have at least 2 copies of the recipe (more is better so people can grab a copy). One copy goes to the group leader who collects them for a handout and one copy stays with the dish so everyone can see what's in it. And I have caught newbies out in mistakes like a crab dip using fake crab (held together with wheat starch). I've had to impress on my Mom that you can't just chow down. The purchased products have the package next to them so you can see what's in it.

I know you'd like for the kids to have one place to not worry about it but I don't know if that's actually a good idea. I know I still check ingredients in the dishes I eat at our group because you never know when a newbie (or even an old pro) will make a mistake. Also, I can tell from experience that if you have a gathering of 10 Celiac kids, you'll probably have at least 20 addiotional food issues to deal with (dairy, soy, corn, MSG, iodine, potato, tomato, onion...).

All the kids need to be able to be responsible for their own issues. Having the recipes with the dishes allows them to do that.


Karen B.

diagnosed with Celiac Nov. 2003

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