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
      104,345
    • Total Posts
      920,489
  • Topics

  • Posts

    • I am sorry that you are sick!   Unfortunately, all celiac testing requires you to be on gluten.  😔.   Testing is usually not over until you get an actual diagnosis, but it appears that you may very well have celiac disease.    Here is more information: http://www.cureceliacdisease.org/screening/ http://theceliacmd.com/2015/06/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet-3/ in the meantime, you can eliminate dairy products temporarily.  It may provide some relief.  
    • Karen, the iodine test was a test for DH used in the 'olden' days. Iodine would be swabbed onto a spot and then it would be covered with a bandage. If someone had DH the iodined area would break out in lesions. I don't know how but we do know iodine can activate the antibodies. That is why some of us with DH have to avoid iodine in foods until the antibodies have cleared the dermis. OP, if you haven't been tested for celiac you should be and if you have active lesions a biopsy done next to a lesion by a DH knowledgable dermatologist may help in diagnosis.
    • The gluten-free diet (GFD) is the only validated treatment for celiac disease (celiac disease), but despite strict adherence, complete mucosal recovery is rarely ... View the full article
    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats of gastro in the past few months (thanks kids) which I took a lot longer than normal to recover from which looking back may have been related. Then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! I'm also still recovering from last Friday and wondering when I'm going to feel better. I've stayed off gluten and dairy since my blood result a couple of days ago but feel like I'm allergic to food in general.  Thankyou!!    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,415
    • Most Online
      1,763

    Newest Member
    Ails123
    Joined