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Thread: Back but with a new diagnosis!

  1. #11
    Join Date
    May 2008
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    Southern California
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    Quote Originally Posted by Cheetah-cub View Post
    By the way, you should ask the G.I. to schedule the earliest possible appt of the day for the endoscopy. With the endoscopy, the patient can not eat or even drink for many hours before the procedure. I remember that we can not even give juice some hours before the procedure. So, you can not go low! We were told that if we had to treat a low close the the appt, then we would have to reschedule the appt.

    Our endo did coordinate this procedure with our G.I., we were given the very first appt of the day, I remembered that we got to the hospital around 6AM. And our endo looked at my daugther's bg pattern, and adjusted our insulin dosages to run her a bit higher , so she won't go low. (We were only 3 months into our diabetes diagnoses at that time), I remembered feeding her a high protein, low carb dinner, and staying up most of the night to check her numbers the night before procedure.

    The procedure itself was only about 15 minutes long, it was pretty simple, we went home about an hour or so after.
    I am so hoping that it won't be too hard to get an early appointment quickly! I am aware of how hard it is to fast- my daughter had her wisdom teeth removed freshman year in high school and I was up most of the night with her blood sugars too low for comfort! Maybe if it can't be the first- she can stay up later-she is a college student! I just want to know as soon as possible since she will be going back to college in August and would like to help her figure some of this out before she gets thrown back into school!
    Julie (mom to Jessica 21 dx Hashimotos 12-21-10 and Erin 19 dx 2-9-07 pumping humalog in Medtronic Revel

  2. #12

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    Also, make sure the GI team knows about your child's T1D. They might want you to play with her basal settings in order to keep her a skoosh above her normal range so she doesn't go low during the procedure. (It only takes a few minutes, but they don't want to deal with anything if it can be helped.)

    As for the "celiac is harder than diabetes" feeling, I do agree... to a degree. If our family had had to rely solely on packaged food, it would've really sucked. But I was already cooking all of our meals, so it was more a matter of learning what recipes can be altered to work for us. (We tend to eat foods that are naturally GF, so that made it easier.) If you bake, I highly recommend the America's Test Kitchen cookbooks called "How Can This Be Gluten Free. -- their chocolate chip cookies are so good my gluten-eating neighbor requests them all the time. When we ate out, we gravitated to either chains that had good reputations for GF menu items, or we went to small chef-owned places where we built a relationship with the kitchen so they knew how to discuss our needs.

    Is it fun? No. Is it livable? Absolutely. And the more people who realize the benefits of eating GF, the more places that will accommodate our needs. I swear, it gets easier every year.
    Eileen
    mom of:
    ...Calder - 21 - dx'd 10/1/08 pumping as of 4/2/09; Celiac dx'd 7/23/09
    Former Animas Ping pumper, now on the Vibe since June 2015 (CGMing since September 2015)

  3. #13

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    Quote Originally Posted by Caldercup View Post
    If you bake, I highly recommend the America's Test Kitchen cookbooks called "How Can This Be Gluten Free. -- their chocolate chip cookies are so good my gluten-eating neighbor requests them all the time. .
    We've been at this for years, and I've never heard of this one. I put it in my Amazon wish list -- thanks for the recommendation!
    Snowflake
    Mom to
    DD TR, age 7. Dx-ed with T1 04/04/2012. Omnipod & Dexcom user. Dx-ed with celiac 12/23/2013.
    DS1, age 5.
    DS2, age 1.

  4. #14

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    I'm sorry she is having to go through this but hopefully she will start to feel better after you change the diet. We did not do the biopsy. Our GI doctor did not feel it was needed with her high tests. Our only symptoms, in retrospect, was some wicked and stubborn nighttime lows where we would dump juice into her with little rise in blood sugars. Those went away after we took away gluten and presumably her digestion improved although I'm only guessing at the reason. Now that she has been gluten free for over 2 years, she does have symptoms with gluten. I know this because I accidentally gave her the wrong leftover pizza while we were on vacation a couple months ago and she took just one tiny bite before I realized but threw up quite a bit a few hours later. Sigh. Major guilt on that one. We saw the GI doctor once honestly to discuss diagnosis and never saw a dietician. Our endo checks her TTG levels at every appt which is about every 3-4 months. It took close to a year to come back into normal range and we have managed to stay there since then. The diet is challenging at times. Yes there are options and I know it is much better than before but it does add a layer of difficulty to everything you do. I think it would be much easier for an older child/adult but for a 4 year old-now 6y, it has been hard. I know my daughter would prefer to give up celiac if she had a choice. That being said, you absolutely can navigate many restaurants. Cooking at home is the easiest especially if the whole house is gluten free. It will be more difficult for someone living at dorm though or even apartment with other college students as she will need to be super careful to avoid cross contamination. Good luck
    DD6 Type 1 diagnosed 11/25/13 at 3y 2m, celiac 3/15
    MDI on humalog/lantus and sometimes regular
    DD9-nonD

  5. #15
    Join Date
    May 2008
    Location
    Southern California
    Posts
    900

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    Quote Originally Posted by kail View Post
    I'm sorry she is having to go through this but hopefully she will start to feel better after you change the diet. We did not do the biopsy. Our GI doctor did not feel it was needed with her high tests. Our only symptoms, in retrospect, was some wicked and stubborn nighttime lows where we would dump juice into her with little rise in blood sugars. Those went away after we took away gluten and presumably her digestion improved although I'm only guessing at the reason. Now that she has been gluten free for over 2 years, she does have symptoms with gluten. I know this because I accidentally gave her the wrong leftover pizza while we were on vacation a couple months ago and she took just one tiny bite before I realized but threw up quite a bit a few hours later. Sigh. Major guilt on that one. We saw the GI doctor once honestly to discuss diagnosis and never saw a dietician. Our endo checks her TTG levels at every appt which is about every 3-4 months. It took close to a year to come back into normal range and we have managed to stay there since then. The diet is challenging at times. Yes there are options and I know it is much better than before but it does add a layer of difficulty to everything you do. I think it would be much easier for an older child/adult but for a 4 year old-now 6y, it has been hard. I know my daughter would prefer to give up celiac if she had a choice. That being said, you absolutely can navigate many restaurants. Cooking at home is the easiest especially if the whole house is gluten free. It will be more difficult for someone living at dorm though or even apartment with other college students as she will need to be super careful to avoid cross contamination. Good luck

    Thanks for your reply. We have the gastro scheduled for this Friday so I'm not sure what they will recommend. I think she would probably like the biopsy to confirm without a doubt but would probably be swayed by the gastro's opinion. I think there is probably no question that it is celiac because of her high ttg level plus we have seen some symptoms. She is currently eating a decent amount of gluten in preparation. It's hard for me because I have noticed lots of symptoms especially regarding the major mood swings that I would love a diagnosis but I didn't want this.

    I know that we will handle it though-just stinks cause some days the diabetes stuff is enough!
    Julie (mom to Jessica 21 dx Hashimotos 12-21-10 and Erin 19 dx 2-9-07 pumping humalog in Medtronic Revel

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