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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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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