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celiac

We just got our first celiac diagnosis today and waiting to hear on Berkeley... Julie, are you around?? I don't even know where to start!
[IMG]http://i48.tinypic.com/izn4lw.jpg[/IMG]


**Crunchy Mama to three girlies and one little guy**


*P 9.2005 * B 11.2007 * M 6.2009 * J 11.2011*

Re: celiac

  • I always secretly suspected you had it in your family.  Wink  First, take a deep breath... there's a LOT to learn, and it will take a lot of time to nail this down.  And a lot of time to heal.  Don't expect to get it right, or for her to be all better, right away.  (That's been a really hard lesson for me!)  This is hands-down the best resource I've found.  http://www.celiac.com/gluten-free/index?s=bb104d73061e4fe86a7b2b1ec20c6b4a  There's a section for parents of celiac kids too.  (You and DH are both getting tested too, right?)  And lastly, (((hugs))) to you.  It'll be okay, I promise!!

    Edit: feel free to ask anything you want.  You can PM me, FB me, email me, whatever.  I've had 4 years (with Henry) to get used to this, and a few months on the diet myself, so hopefully I can offer you some support and guidance!

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  • I kind of did too....

    I have done the dariy free, soy free, peanut, egg, etc free but I know minimal about gluten.  I am overwhelmed!!! 

    I hadn't thought to get tested, I figured we would go gluten free for the most part so we wouldn't be planning two meals.  I dunno!

    [IMG]http://i48.tinypic.com/izn4lw.jpg[/IMG]


    **Crunchy Mama to three girlies and one little guy**


    *P 9.2005 * B 11.2007 * M 6.2009 * J 11.2011*
  • julandjo!  Those aren't the kind of secrets to keep!  LOL!  Do you suspect anyone else on here?????

     

  • whole foods has a list of every item they carry that is gluten free. i know it's not much help, but it's a start!
  • image lambisami:
    whole foods has a list of every item they carry that is gluten free. i know it's not much help, but it's a start!

    YOU were who I was coming to next :)

    [IMG]http://i48.tinypic.com/izn4lw.jpg[/IMG]


    **Crunchy Mama to three girlies and one little guy**


    *P 9.2005 * B 11.2007 * M 6.2009 * J 11.2011*
  • image robynlynn83:

    I hadn't thought to get tested, I figured we would go gluten free for the most part so we wouldn't be planning two meals.  I dunno!

    Yeah, all first-degree relatives (parents, siblings and children) of a Celiac absolutely must be tested.  The thing is, even if you're asymptomatic, if you have Celiac you have to be 100% gluten free for life.  Even tiny exposures, like that in medications, lotions, shampoos, or from contaminated silverware, etc. can and will harm you.  Left untreated, Celiacs can develop all sorts of horrible problems, including cancer.  So I'm not trying to scare you, but yeah you all have to get tested.  Spend some time on that message board and just read posts.  My doctor has so little knowledge about celiac and his advice was so, so wrong.  It's sadly really common in the medical community.

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  • I read about the cancer so yeah, we will now be getting tested.  Should I test Mara this young?

    Also, what exactly do I look for in lotions, shampoos, etc so I can start weeding through our stuff before our appt?

    Also, we got an appt with the Pediatric GI Dr today, they referred us to the GI clinic at Boys Town--good, bad??

    [IMG]http://i48.tinypic.com/izn4lw.jpg[/IMG]


    **Crunchy Mama to three girlies and one little guy**


    *P 9.2005 * B 11.2007 * M 6.2009 * J 11.2011*
  • She made mention of me :) I"m asking my Dr on Thursday! I looked up the signs/symptoms on a site she gave me and I have alot of them!
    image
  • If it's with Dr. Prestridge, don't waste your time.  I've spoken with quite a few parents who were just as disappointed in her as I was.  I don't have a list of ingredients handy, but I know that all Unilever products (Suave, Dove and a few others) are very good about clearly labeling all allergens.  Hy-Vee is also really good about gluten-free stuff, and their dietician will gladly help you shop.  Don't go buy a ton of new stuff though; it's really, really common to develop secondary food intolerances once you go gluten-free.  For example, I felt awesome for about 2 weeks after my diagnosis and diet change.  Then I suddenly felt like total crap again.  I've kept a very detailed food journal and guess what?  At this point I can't eat *any* grains (corn, rice, quinoa, etc.), dairy, soy, nuts, eggs, fish, pork, tropical fruits, paprika, broccoli or mustard.  Indifferent  I know, right?!  It's ridiculous, and I never had problems with those before I went gluten-free.  Once the body is rid of that giant gluten problem, it's free to start addressing other stuff that slipped by unnoticed while it was so busy fighting the gluten.  Oh joy!

    The good news about secondary food intolerances is that once the gut has had time to heal (6-12 months or so), a lot of people are able to have some of those foods back.  I'm trying really hard to be patient and trust that things will get better!  But the point of my story is to go slowly with foods.  Try to stay away from a lot of the specialty gluten-free itmes, as they're highly processed with a lot of ingredients that may make her feel worse.  Stick as close to fresh whole foods as possible.

    As far as testing Mara, I have no idea how old they have to be.  My kids haven't been tested, because you have to have been consuming gluten for several months in order to test positive.  If they even have a serving of gluten they're uncontrollable and in physical misery... so I have no idea if or when they'll ever be tested.  No way I'm making them eat poison for months!  Good luck, and try to stay calm about it!  It's totally overwhelming at first, so go slow and take it easy on yourself!

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  • It isn't with that Dr. 

    The good thing is that we don't eat processed foods so we won't be changing much in terms of the basics--fruits, veggies, meat, dairy, etc.

     Berkeley has the screening blood draw tomorrow and thus begins the process....

     I hope you don't mind me asking a bazillion questions from here on out!

    [IMG]http://i48.tinypic.com/izn4lw.jpg[/IMG]


    **Crunchy Mama to three girlies and one little guy**


    *P 9.2005 * B 11.2007 * M 6.2009 * J 11.2011*
  • image DandR:

    julandjo!  Those aren't the kind of secrets to keep!  LOL!  Do you suspect anyone else on here?????

     

    Pretty much anyone who had MSPI, especially those with ongoing food intolerances!  Also anyone with unexplained neurological issues.  It's all tied together in ways I never dreamed.

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  • Thank God for Julie!  I'm sorry Robyn, what a totally crappy month - I hope you find some answers/clarity to all of this soon.

    Blythe, born 6/5/10, and Oscar the dog (not pictured), adopted 11/16/07
    image
  • image robynlynn83:

    image lambisami:
    whole foods has a list of every item they carry that is gluten free. i know it's not much help, but it's a start!

    YOU were who I was coming to next :)

    lol! i do know the stuff from our gluten free bakehouse is awesome. i couldn't tell it was gluten free. if ya need a sweet fix :)

    have you ever tried larabars? i am in loooove with them. they are just fruits and nuts and they make them taste like deserts. i swear i could live on them.
  • First I had to cut out ALL grains(corn, rice etc)..now i can have some in moderation-- UDI's bread is my fav so far..it was so hard to pack a lunch for work and not have a bread for sandwiches that didnt have to be frozen or anything ! Good Luck Smile
  • image saltwatercowgirl:
    First I had to cut out ALL grains(corn, rice etc)..now i can have some in moderation-- UDI's bread is my fav so far..it was so hard to pack a lunch for work and not have a bread for sandwiches that didnt have to be frozen or anything ! Good Luck Smile

    Oooh oooh!  Another celiac!!!   :)  How long did it take you to start tolerating things again??  I'm 3 months into it and I'm still finding things I have to cut.  :(  And yeah, my son LOVES Udi's bread.  Even DH said it was pretty good, and he usually shuns all things gluten-free, ha!

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