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Need to Scream

Discussion in 'Parents of Children with Type 1' started by phaunt, Apr 24, 2010.

  1. phaunt

    phaunt Approved members

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    We just found out yesterday that Lilly (almost 7) has Celiac on top of T1. I had her tested LAST year and it came up negative (?), but they drew blood at her Tuesday appt and said she was almost 10x the level that qualifies you to be diagnosed as Celiac.

    I've already started reading up on how to do the switch and we will meet with a dietician ASAP, but I'm just sick to my stomach about it.

    On top of her having to worry about blood sugar, now she (and we) have to add this to the mix.

    New 504 plan, all new setup for school, all the adjustments we'll have to make. True, a lot of my emotion is selfishness but I'm also pissed that she can't just have a childhood free of medical complications.

    I just needed to vent here where I know people would understand. Thanks for listening. *sigh*
     
  2. tresmom

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    I can totally sympathise with you. I have two kids with type 1 and my dd was just dx with celiac last month. It's been hard, but I will tell you celiac so far has been way easier to deal with than diabetes (for me anyways). It takes a bit of adjusting, but once you get the hang of it then it's not so bad. I was very overwhelmed when my dd was dx. Of course dealing with both in the same child I've yet to have to deal with, but if it should happen I think I'm prepared for it now.

    My only advice would be to hold off on going gluten free until you talk to the GI doctor. If you have a referral call them up and ask them if they want you to wait or to start now. With my dd our pediatrician said her numbers were so high to just go gluten free and sure enough when we got to the GI doc he wanted to do a biopsy and needed her to go back on gluten for a little while. It would have been just easier if we had waited to go gluten free verses taking her off and then putting her back on. Anyways, hang in there. I get the need to scream, but then you kind of just have no choice but to roll with what life gives you. I'm still learning with the celiac stuff, but I'm getting there.
     
  3. bgallini

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    I'm sorry. That's got to be hard. :(
     
  4. buggle

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    I'm really sorry, Kylie.
     
  5. Flutterby

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    I totally get where you are coming from.. Kaylee was diagnosed in 08 with celiac.. it sucks.. are they going to do an endoscopy or just taking the blood work as the diagnosis? The switch to gf foods was extremely tough for us.. its now been 2 years and Kaylee is growing like a weed.. 5lbs and 3inches in the past year alone.. her attitude is better (most of the time) and we've seen a bit better bg control...

    I don't know if you know it, but there is a celiac board on here.. its not as busy as this board, but there are a lot of great and knowledgable people that are there:)
     
  6. momandwifeoftype1s

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    Kylie - I'd scream too. I'm so sorry. :(
     
  7. Darryl

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    No need to worry... avoiding gluten is a little challenging at first, then you come to realize that you're better off for all the foods you must eliminate, most of which were not healthy foods anyway. Most importantly, celiac will not impact your child's health, as will most any other disease. Can't ask for more than that!

    My 2 pieces of advice assuming the dx is confirmed:

    - Make the whole house gluten free, so the child does not need to "be careful" about what to eat at home.
    - Don't worry too much about processed GF foods. There are so many natually GF foods - meat, chicken, fish, milk, cheese, rice, corn, vegetables, yogurt, ice cream, chocolate, potatoes, juices, many types of soup, etc. Mainly it's bread, breaded foods, and thickened soups that need to be avoided.
     
  8. Sarah Maddie's Mom

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    I know that for me this would be very difficult news, I'm sorry that the test was positive.

    Yes, you will be able to manage this. And you will adapt... but it's a complicating factor nonetheless, and I'm really sorry. :(
     
  9. Flutterby

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    I have to disagree here.. we didn't go all gluten free.. the main reason.. we can't afford it! We do however make sure that most snacks ARE gluten free.. she knows what she can have and what she can't..They also each have their own school snack bin, so they know they can pick out of theirs (and it consists of snacks that they've picked out).. then of course, the fruits, yogurts, cheeses are all gf anyway.. if there are 'treats' in the house that she can't have.. we DO make sure that we have a similar treat that she CAN have.. I.E.. cookies.. However, if we can get something that is gluten free and not going to break the bank, then we do it.. we try and buy all cereals gf.. general mills is doing an AWESOME job of making their cereals gf.. chips, we make sure they are gluten free.. tortilla chips, taco shells, seasoning, that type of stuff is all gluten free..

    things that we still have in the house with gluten.. pasta.. Kaylee has her own pot and strainer to avoid cross contamination.. bread, chicken nuggets/fish sticks and baking items.. we have a matching gf item for each thing..

    Going gf is stressful and the financial aspect can be very difficult.. it isn't necessary for the whole house to go gf for it to work. Kaylee's last 3 TTGs have been negative, so I'm confident in what we are doing.

    Just thought I'd throw that out there for the OP, either way is not wrong.. if you want your whole house to go GF, then do it, but it doesn't have to be done that way.. I just wanted to let you know that. :)
     
  10. tresmom

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    Same here. I originally thought that's what we would do as well, but I am feeding a family of 8 here soon to be 9. No way no how can we afford to do all gluten free. It's expensive and trust me our food bill is high enough. What we do though is we make the base of the meal gluten free and then pastas and such we cook separate. I am doing once a month cooking at the moment so it works out okay as far as not contaminating food because I cook her stuff on different times and freeze. When we reheat I reheat in separate dishes. Also we try to do as many meals as we can that are naturally gluten free so as not to run into issues.

    Another thing I would suggest is go online and read product reviews (I like to check Amazon) before buying gluten free foods. Some of them are really good and some are just plain nasty! As expensive as they are you don't want to be buying stuff nobody will eat.
     
  11. Becky Stevens mom

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    Im sorry Kylie:(
     
  12. albasmom

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    I'm sorry. We're going through the same thing. It really sucks. :(
     
  13. kim5798

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    Hang in there. It sucks. But, it gets easier over time.

    kim
     
  14. phaunt

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    Thanks everyone.. it helps to have a place where I know people understand, even though I don't post much I read a lot and always search here for info. :)

    Luckily Lilly LIKES the idea of having special things that only she can eat, so I think we'll get away with having her have gluten free bread/chips/cookies, and just not get a lot of the other things.

    We went to Walmart today and didn't find much of anything GF except the Amy's Macaroni (Rice), so we'll try that. We live in a smaller town so there's only on health food store and the GF selection was pretty small. I'll probably head to a town near us and stock up on some stuff this week.

    This doesn't feel quite as scary as when she was diagnosed with T1, I feel a lot better today. She's taking it really well, and I know we'll figure it out.

    Thanks everyone!
     
  15. tresmom

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    Megan did not like that mac & cheese. We ordered online at Amazon the powdered cheese for Kraft Mac & cheese and use gluten free noodles and make our own. If your dd is picky like mine I can throw things that are working for us. Feel free to send me a message any time and I'll be glad to help. We are still figuring things out over here ourselves.
     
  16. tiffanie1717

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    I have a fear of this for those exact reasons - apart from the "we have enough we have to do" argument is the main reason - I just want my kids to have an easier road - not a harder one! I totally get your vent.

    I'm so sorry that you have to deal with this but I know you will find the best support here to help you on your road. ((Hugs!))
     
  17. kim5798

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    we make mac & cheese with gluten free pasta(our fav is the quinoa pasta) and velveeta cheese.

    kim
     
  18. jcanolson

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    Sorry you are having to join us "Silly Yak" moms. Are they not going to do an endoscopy to verfiy the bloodwork? From what I've read Type 1 diabetes can cause false positives.
     

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