I recently had an unpleasant night with my family concerning a family member with celiacs. Where can we "ignorant" family members go to find out more information? Should we ask more questions? Or just follow someone else's lead?

I would like to hear from a parent of a celiac disease kid to see how they would like family members to handle it.

This is my first post and hope it will be helpful. I would like to have a happy meal with my family again.

This is the best place I know to get information - this message board at the associated text pages on celiac.com. Read through whatever you have time to, and do feel free to ask plenty of questions.

Those of us doing the gluten-free diet really need the support and understanding of our family members and friends, and if you need more information to support your family member, we'll do what we can to provide it! :-)

the fact that you want to be helpful means a lot.

I can tell you that one side of my family is very supportive of my daughter and the other side not so much.

It hurts her feelings when people who love her don't try to be understanding.

One thing that is really important is whenever there is a family function with food ask if there is a way to modify something you are bringing to make it gluten free, if that is too much or it can't be modified, remember what is in it and if possible bring the food ingredient labels so that the parent can double check everything.

Be an advocate for the child, if someone says something rude, jump in and defend the kid, that will mean a lot to the child and the parents.

Try to explain that this is all new for you and you are trying to learn, ask them to be patient. If they have percieved something you have done as rude apologize (even if you weren't trying to be rude) this is a stressful diet and they may try to take things out on the nearest person available, don't let them have any room for complaints with you.

As a parent of a celiac child, I want my family to:

1. know the basics: no wheat, barley, rye or oats -- even if they NEVER read a label.

2. give me a strict "gluten free" zone in their kitchen if I am visiting for more than a day. Only our food touches it.

3. NOT cook something that they are "sure" is gluten-free and insist that we eat it. Not re-use tablecloths! Oy, the crumbs!!

4. Surprise him with a gluten-free treat bought directly from a gluten-free provider (Wegman's, Miss Roben's, Whole Foods, etc.) and clearly labelled as such, or chosen from a gluten-free list

5. Ask "what would make this trip/visit easiest for you? Is there anything we can do to help?"

6. Not pity my child. It's not cancer, or MS, or a brain injury.....

I have two wonderfully supportive families -- mine and my husband's. No, they don't always get the details right, and they forget stuff, but we can see they are trying to help and try to do "the right thing". That's all I need

joanna

They know the basics: no wheat, rye, oats and barley. What I want is when they call me to ask if he can have such and such an item, and I ask for the ingredients, I want them to read ALL the ingredients to me. There was one questionable ingredient, so I said not to use it in the marinade, we would come early and bring a gluten-free version to use. The cook ended up not using the item at all, just made the marinade without it and it's a darn good thing, because after I got there, I saw the original bottle and there were three of us having a discussion and I glanced at the label and said, "You didn't say hydrolyzed plant protein when you read the list of ingredients! That's almost always wheat!".

I plan to get a pocket dictionary from my local association and give it to them so they'll always have a reference.

My family always opens a new container of marg. or butter and puts a portion of it in a covered dish with my name on it. Also they have either sugar cubes or a separate covered sugar bowl in case the 'family one' has been contaminated. Have plenty of paper towels around so that the Celiac can put paper towels or a plate on the counter to fix their food without risk of the counter having gluten contamination.

But I think the main things is ... Never tell a Celiac that they are being picky, carried away, fussy, or paranoid. The Celiac is responsible for their health, and yes, in a gluten world we are paranoid, and must be to stay healthy. But we don't need family members pointing it out when we go to visit, or they come to visit.
Thank you for being thoughtful enough to come on here and check us out! That's very special to want to learn so you don't accidently hurt your family member.