9 replies to this topic

[AmyandSabastian]

Ok I am sure you all are getting tired of me. I am so sorry. D day is coming soon (Aug 1st the household is going gluten free) and I need to learn as much as possible in a little over a month. Do you suggest any good sites to visit, books to read, other support groups on line and message boards? And thing for babies? You all have been so helpful already and I thank you so much.

[angel_jd1]

Amy-
I have started a online support group/ information group. I have about 110 links to different information, research, and foods etc posted there. You are welcome to come and join, just PM me and I'll send you the address to the site. I can't put it up here, no promoting your own websites . But if you would like please come join us there. Several folks have kiddoes and I'm sure they would be a great help. It doesn't cost anything to join, just doing this for free to help others.

-Jessica


P.S. if anybody else wants the address PM me.

[flagbabyds]

You could always join a ROCK group(raising our celiac kids) It is very informational and fun for the kids.

[AmyandSabastian]

Well I called the owner of ORCK. She was great. And also told me that she doesnt have a group in La. But that is something I am looking for.

[flagbabyds]

The book "Against the Grain by Jax Peters Lowell" Is pretty good. It is an old book but it has a lot of valuable information in it

[Boojca]

First, I am in Jessica's group (SillyYaks) and it is GREAT. I highly recommend getting on that list.

Second, buy Danna Korn's book "Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children" it is really helpful.

I have a 2 1/2 year old who was just diagnosed a little over a week ago and he's already putting on weight and is a totally different kid. And the biggest help to me has been these boards and the people. I couldn't of done it without this connection! Thank GOD for the internet!

B

[angel_jd1]

USA Silly Yaks to be exact....

[celiac3270]

Research, research, research (esp. on this site).....and start keeping a binder or folder....print out good threads or photocopy things from books, various lists, print recipes or whatever.....start one central place where you can look for recipes or ingredients or food ideas....whatever.....then, even if you don't memorize all this stuff, you have it in a place where you can easily refer to it.....I haven't followed my own advice, but I just try to remember it....however, since you have multiple people that will need to refer to this info., it might make sense to have hard copies of good information.....

Second, buy Danna Korn's book "Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children" it is really helpful.

True....it's helpful for when you're starting in that it has various lists, but also good for various parenting tricks with Celiac kids....for example, what to do about birthday parties or Halloween....and then various ideas for everyday life with a Celiac kid. I was thinking of that book, but couldn't remember the title....thanks Boojca.

I, too have joined Jessica's group, although I don't post much...I have all the topics coming in via e-mail, so you don't even have to go to any sites...if you see by the subject that it's something that you're not interested in, just delete it, but if it's something that you do like, it's convenient to read.....in addition, most of the topics are things that you don't see on the board (for example, you'll be sent the article every time celiac disease appears in the news -- they even had e-mails about babyfood....not sure exactly how old your son is......

-celiac3270

[Boojca]

Amy,

Seeing celiac3270's post made me remember something else. I not only made myself a binder I also copy everything I get and have made binders for my mother, the other grandmother, our daycare provider...anyone who may care for our son for more than just a few hours. That way, they are covered whether it be for an overnight visit or when preparing for a family meal. They have been much appreciative. I also made two copies of the binder to keep in both of our vehicles. That way, no matter where we are or who has our son, my husband and I are never stranded without the list of safe/forbidden ingredients or without the list of foods we know are safe. It's quite handy!

Bridget

[DawnI]

I make binders for other people too.....my mom loves to look it over. very supportive.

my son (11) his teacher asked For one also....

daughter will also be joining the gluten-free team.....so her daycare will receive one also.
Dawn