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AmyandSabastian

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AmyandSabastian Explorer
AmyandSabastian
Posted

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.

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angel-jd1 Community Regular
angel-jd1
Posted

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.

flagbabyds Collaborator
flagbabyds
Posted

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

AmyandSabastian Explorer
AmyandSabastian
Posted
  • Author

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 Collaborator
flagbabyds
Posted

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 Apprentice
Boojca
Posted

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 Community Regular
angel-jd1
Posted

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

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  • 2 weeks later...
celiac3270 Collaborator
celiac3270
Posted

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

Boojca Apprentice
Boojca
Posted

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 Rookie
DawnI
Posted

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

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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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