Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Information
0

10 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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 :D . 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 :rolleyes:

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

USA Silly Yaks to be exact.... :D

0

Share this post


Link to post
Share on other sites

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 :D -- they even had e-mails about babyfood....not sure exactly how old your son is......

-celiac3270

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,116
    • Total Posts
      919,451
  • Topics

  • Posts

    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,155
    • Most Online
      1,763

    Newest Member
    AndiR
    Joined