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New Dx Celiac question

Discussion in 'Parents of Children with Type 1' started by KHS22, Apr 2, 2016.

  1. KHS22

    KHS22 Approved members

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    Hi All,

    So we got the call yesterday that my daughters biopsy results showed celiac yesterday. I was kind of expecting it (i have it, she was having a lot of abode pain, erratic BGs), but still a bit shell shocked.

    Any-whoo. My main concern right now - what are her blood sugars going to do going gluten free? I'm thinking, if she wasn't absorbing, then as her gut heals, she might run higher, need more insulin? In addition - she's lost a bit of weight before the diagnosis, and is hungry all.the.time at the moment, so I'm assuming that will continue as she heals/gains back the weight?

    Just curious for any of you who have been through this - what your experiences with the transition were!

    Thanks!
     
  2. SarahKelly

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    My son was diagnosed with celiac disease weeks before he started kindergarten and we noticed right away that things started making more sense in terms of his insulin needs. We had all these weird rules for his insulin dosing that we had come up with because of how he reacted to insulin, basically there were so many foods that he had for "free" that we realized after going strictly gluten free that he no longer had those foods "free" anymore. Obviously in hindsight it was because he wasn't absorbing much. He grew 4 inches in the first 6 months being gluten free, he stopped being itchy, headaches, tummy aches, mouth sores and behavior improved. And yes insulin needs went up but they were more easy to figure out. I felt like we stopped having as much random fluctuations that were unanswerable. He also had to have a major increase in his basal rates from 9-2am due to the increase of growth hormones, but we were so happy he was finally growing again. He was super hungry before the diagnosis and for that whole kindergarten year he ate non-stop, we actually had to have in his 504 plan that he was to be able to eat as desired in order to catch up on the nutrients his body was needing. We bulked up on nutritionally dense foods and were lucky to have a teacher that made her class gluten free so that he could safely eat in class without any worry.
    I hope that helps. It has been a difficult journey with celiac disease, however my son feels so much better being GF that he won't even risk having anything that might not be celiac safe.
     
  3. KHS22

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    Thanks sarah! This is helpful! So looking forward to the poor little one feeling better! She's had so many of those symptoms - itching, tummy aches, headaches. Poor kids! About the same age as your guy too - my daughter is in kindergarten.

    I had a little LOL at the "weird rules" because we have quite a few of those too... Will be interesting to see if it improves as she heals! And hopefully some of the WTF highs or lows will improve as well! :)
     
  4. Caldercup

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    In my son's case, he was still honeymooning when the Celiac dx came through. What we saw was that, about a week after going GF, his insulin needs went up because his gut was healing and he was absorbing more nutrients (and needed more insulin.)

    About two weeks in, the erratic BGs from prior to going GF settled down, and we could accurately and consistently dose for what he ate. He had far fewer unexplained lows.

    We are now years and years into being GF (I have Celiac, too), and we feel so much better.
     
  5. KHS22

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    Just for those interested - We are now a couple weeks in. And WOW we are noticing a LOT smoother numbers since going gluten free!! Entire days in range which was virtually unheard of for us despite great effort!!! Less lows, less highs, less double up or double down arrows! Just great! Obviously what she needed.
     
  6. rgcainmd

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    Happy to hear that your daughter (and you) are doing better!
     
  7. Snowflake

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    Awesome! I know it can be an adjustment for a kid to start a new diet, but it's nice to see such concrete, quantifiable payoff, isn't it? :)
     
  8. KHS22

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    Yup! So nice to have answers and positive changes! most of the time with T1D its just more questions hahah
     

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