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Positive antibodies for celiacs

Discussion in 'Parents of Children with Type 1' started by Williamsville mommy, Dec 16, 2013.

  1. Williamsville mommy

    Williamsville mommy Approved members

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    4 1/2 daughter had blood work done and tested positive for celiacs antibodies. Looking for any help any advice or personal experience where and what to do next. Please and thank you
     
  2. missmakaliasmomma

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    Not personally, but my sister has a gluten allergy. Theres a lot of food you can eat, it made me realize that celiac wouldnt be as bad as I once thought. A lot of stores have more and more gluten free food, where you once had to go to a whole foods store. What stinks, is that a box of quinoa costs over $3, and you can get a box or ronzoni for a buck :rolleyes:

    I know people who choose to go gluten free because it makes them feel better
     
  3. KHS22

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    Not my kid - but I'm celiac - found out when I was about 25. I was SUPER sick. So, luckily, hopefully, you found out before your daughter became too sick! Its overwhelming at the beginning, but totally do-able!

    Sorry for your news!
     
  4. Sarah Maddie's Mom

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  5. AmyJoeBut

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    My 7 year old was diagnosed with celiac about 3 months after the T1D diagnosis and I have to admit, it really threw me for a loop. I was handling the diabetes well enough, but him not being able to eat the things that he loved was tough.

    BUT, we are now about 7 months into it and, while I would never say it is easy, it is do-able. Yes, there are a lot more things in the gorcery store now, but when you are also T1D, some of those things are really high in carbs. But I promise you that you will find things that she likes to eat, that are not crazy with carbs and you will get through it! : )

    We chose to go gluten free in our house as well, which was the best decision for us personally (so that I didn't have to constantly worry about mixing up food, toasters, etc. with 7 and 10 year old boys around), and that requires a bunch of prep work to get rid of "glutened" things around the house but for us has made it easier in the long run.

    Hang in there! I know it can be tough, but you can do it.
     
  6. Williamsville mommy

    Williamsville mommy Approved members

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    Amy
    Thank you so much. I loved hearing a personal experience from people who are living it everyday.
     
  7. SarahKelly

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    Isaac has been diagnosed with Celiac Disease for 5 months now. His antibody level was 179 at dx and now is 32, so not in the "normal" range but steadily going down. For him he was so sick and wouldn't eat most typical kid foods that it hasn't impacted him as much in terms of removing foods, if anything it has opened up a world of food options that before he wouldn't eat. He had pretty much forced himself on an elimination diet of rice, fruits, veggies, oatmeal and meat.
    I am going to be totally honest with you...this has been more difficult for me than t1d was. Not because it's harder but because it causes me to have to stop more, ask more questions, look at everything differently and it has impacted social gatherings more. BUT in just 5 months he's grown over an inch gained four pounds and is so much more energetic and happy. We had our whole family and even grandparents get the celiac panel done to check for it and found that I have elevated levels but almost non existent igA so I am treating that as needing to be GF as I don't want to do a biopsy and don't mind cutting out gluten. Also, my MIL tested positive to Celiac Disease and now after decades of abdominal issues is getting relief.
    There are great apps, blogs and websites that help with finding safe foods. Because Isaac is so young we had the whole family go gluten free while at home. We have found that we can substitute for GF flours with most typical recipes with just a little tweaking through trial and error, most of my family and friends don't even notice the difference. There are definitely flours that are better for different recipes, Gluten Free Girl has a great breakdown of what flours to use in what recipes.
    Since going gluten free Isaac has had only one big "oops" with yogurt covered raisins as they were GF then the recipe changed and they no longer are - he knew right away with headache and belly pain.
    I just want you to know you're not alone, it's rough for a bit but then it becomes regular and your kiddo will feel so much better even if they weren't having typical full blown symptoms removing this helps a ton. Msg me if you have any specific q's.
    Another tip I read early on from a young woman with celiac disease is "don't miss it make it." I have taken this to heart and have found there isn't much we can't make that we really miss.
    HTH :)
    PS We love "Cooking for Isaiah" cookbook
     

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