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Thread: Back but with a new diagnosis!

  1. #1
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    Default Back but with a new diagnosis!

    Its been awhile since I have been on here---we are 10 1/2 years into this and my daughter just finished up her freshman year in college! The last year or so she has been having lots of symptoms--starting with severe mood changes, upset stomach, hair loss, bloated belly, etc. She also was a very late bloomer which always confused me since I was really young and my older daughter was average age for puberty. Ran tons of tests but nothing would show up. Fast forward to this year--her symptoms have been increasing and she almost always has pain in her legs every night along with looking very pale. We ran her blood work in advance of her endo appointment and her celiac test came back positive.

    ttg igA transglutaminase >100 and IgA immunoglobulin A 78 (range is 80-up)

    so.....we are probably looking at celiac

    Endo referred us to a gastro and we are waiting on getting an appointment but I have a question for those that have been through this---I'm assuming that with her results the next step will be a biopsy. If she has a positive biopsy does the gastro help with the celiac diagnosis or are you kind of on your own figuring out how to go gluten free? Does the endo help at all?

    I'm kind of used to the endo with all the diabetes help that they gave with educating us and I am under the assumption that a celiac diagnosis is another steep learning curve. Any help or sharing of your experiences would be great!

    Thanks!
    Julie (mom to Jessica 21 dx Hashimotos 12-21-10 and Erin 19 dx 2-9-07 pumping humalog in Medtronic Revel

  2. #2
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    Quote Originally Posted by 22jules View Post
    Its been awhile since I have been on here---we are 10 1/2 years into this and my daughter just finished up her freshman year in college! The last year or so she has been having lots of symptoms--starting with severe mood changes, upset stomach, hair loss, bloated belly, etc. She also was a very late bloomer which always confused me since I was really young and my older daughter was average age for puberty. Ran tons of tests but nothing would show up. Fast forward to this year--her symptoms have been increasing and she almost always has pain in her legs every night along with looking very pale. We ran her blood work in advance of her endo appointment and her celiac test came back positive.

    ttg igA transglutaminase >100 and IgA immunoglobulin A 78 (range is 80-up)

    so.....we are probably looking at celiac

    Endo referred us to a gastro and we are waiting on getting an appointment but I have a question for those that have been through this---I'm assuming that with her results the next step will be a biopsy. If she has a positive biopsy does the gastro help with the celiac diagnosis or are you kind of on your own figuring out how to go gluten free? Does the endo help at all?

    I'm kind of used to the endo with all the diabetes help that they gave with educating us and I am under the assumption that a celiac diagnosis is another steep learning curve. Any help or sharing of your experiences would be great!

    Thanks!

    after our biopsy, I think they referred us to a dietician? its been a while...but for the most part, we were on our own. They basically tell you if in doubt, don't eat it. It is so much easier now than it was years ago. The biggest thing is try & eat foods in their natural whole state, then you don't have to worry about added gluten. Fruits, veggies, meats are all good. You watch out for seasonings & now there are so many more bread options. Truthfully, Dani doesn't eat that much bread. She does corn tortillas & does eat some gluten free waffles. The big thing is eating out, you have to be careful, but you learn what you can eat & how it affects you if you get gluten by accident. Some seasonings can be an issue. I would be happy to share some info with you.

    She was telling me that she was talking to someone this past weekend regarding diabetes & celiac. She said, I told them diabetes is hard, but for her celiac is harder because she doesn't remember not being diabetic, she remembers not having celiac. She said, " I remember how soft pretzels taste!"
    Kim
    Mom to Danielle, age 18, dx'd type 1 age 3 in 2001. MM 630G pump with cgm. dx'd celiac 6/09
    She will be a sophomore at University of Utah in the fall 2017.
    Go Utes!

  3. #3
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    Quote Originally Posted by kim5798 View Post
    after our biopsy, I think they referred us to a dietician? its been a while...but for the most part, we were on our own. They basically tell you if in doubt, don't eat it. It is so much easier now than it was years ago. The biggest thing is try & eat foods in their natural whole state, then you don't have to worry about added gluten. Fruits, veggies, meats are all good. You watch out for seasonings & now there are so many more bread options. Truthfully, Dani doesn't eat that much bread. She does corn tortillas & does eat some gluten free waffles. The big thing is eating out, you have to be careful, but you learn what you can eat & how it affects you if you get gluten by accident. Some seasonings can be an issue. I would be happy to share some info with you.

    She was telling me that she was talking to someone this past weekend regarding diabetes & celiac. She said, I told them diabetes is hard, but for her celiac is harder because she doesn't remember not being diabetic, she remembers not having celiac. She said, " I remember how soft pretzels taste!"

    Thanks for responding!

    I have heard that celiac is harder than diabetes as well-but at this point I guess I just want to know what has been going on and have her feel better. Also worried about sending her back to school- she is going to be living in a suite next year and on a meal plan. I noticed your daughter is in college- how has that worked?

    And do you think that with her test results that we are definitely looking at a diagnosis?
    Julie (mom to Jessica 21 dx Hashimotos 12-21-10 and Erin 19 dx 2-9-07 pumping humalog in Medtronic Revel

  4. #4
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    "I'm assuming that with her results the next step will be a biopsy. If she has a positive biopsy does the gastro help with the celiac diagnosis or are you kind of on your own figuring out how to go gluten free? Does the endo help at all?"

    Yes, with a positive blood test, the next step will be to schedule an endoscopy (biopsy), your daughter will need to continue to eat normal (consume gluten) until the test result. If the biopsy confirms damages to her small intestine, then she will be diagnosed with celiac.

    We were immediately referred to a dietician, who were not helpful at all. She was very negative and down on the gluten free foods, and I didn't like having her telling my then 10 year old daughter that her food options will be inferior. Even though this meeting was over 3 years ago, I still remember what a horrible consultation that was.

    We have a G.I. doctor for celiac disease. Our GI doctor was young and inexperienced. Our endo is not that involved with our celiac disease. However, whenever our endo orders blood tests, I would ask her to order a celiac blood test for that same blood draw, (to see if our TTG has come down). Our endo always ordered the celiac blood tests for us. So, we don't see our G.I. doctor at all anymore.

    We learned to adopt to the gluten-free lifestyle on our own. There are lots of information out there, plus forums like this. There is a celiac forum also full of information. There is a learning curve, but just like diabetes, after a while, you will know what you are doing. Eating gluten free does add to the expense. You need to give your college kid more money.

    The good thing is, if she does have celiac, going on a gluten free diet should have her feel better and back to her normal self.
    Mom to a sweet 14 year-old child, was diagnosed at age 10 on 12/4/13
    Started with Humalog and Lantus.
    Diagnosed with Celiac on 2/18/14
    OmniPod since 3/26/14
    Dexcom G4 since 4/11/14

  5. #5

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    We were also referred to a dietitian, as well as to a class for families new to GF. It wasn't that helpful for us either. I'd already spent weeks obsessively reading about GF, and the class relied on very dated handouts that didn't even reflect recent labeling changes. Every clinic is different, though, so I hope that you have a better experience!

    I've also found over the years that when we ask the diabetes clinic dietitian about celiac, she punts and says that isn't her area, and then we get the same from the GI clinic if we ask their dietitian any thing D-related. It's very frustrating. Celiac is a disease where you absolutely have to be self-educated, probably even more than T1d.

    These days, we see the GI doc every year to 18 months for follow up, but we will probably space that out more because our dd's celiac antibodies are now in the normal range and everything is going well. I have adult family members who are celiac who don't see the GI at all anymore.

    As for college, be aware that ADA/504 require dining hall accommodations for celiac. See here: https://www.ada.gov/lesley_university_sa.htm Of course, even if the law is on your side, there's also a trust issue about how well the dining hall can implement, but assuming it's a large university, the dining hall has probably worked this out with other celiac students.

    Good luck!! The good news is that your daughter will hopefully feel much better very soon. Going GF made a world of difference for my daughter in pretty short order.
    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.

  6. #6
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    Quote Originally Posted by Snowflake View Post
    We were also referred to a dietitian, as well as to a class for families new to GF. It wasn't that helpful for us either. I'd already spent weeks obsessively reading about GF, and the class relied on very dated handouts that didn't even reflect recent labeling changes. Every clinic is different, though, so I hope that you have a better experience!

    I've also found over the years that when we ask the diabetes clinic dietitian about celiac, she punts and says that isn't her area, and then we get the same from the GI clinic if we ask their dietitian any thing D-related. It's very frustrating. Celiac is a disease where you absolutely have to be self-educated, probably even more than T1d.

    These days, we see the GI doc every year to 18 months for follow up, but we will probably space that out more because our dd's celiac antibodies are now in the normal range and everything is going well. I have adult family members who are celiac who don't see the GI at all anymore.

    As for college, be aware that ADA/504 require dining hall accommodations for celiac. See here: https://www.ada.gov/lesley_university_sa.htm Of course, even if the law is on your side, there's also a trust issue about how well the dining hall can implement, but assuming it's a large university, the dining hall has probably worked this out with other celiac students.

    Good luck!! The good news is that your daughter will hopefully feel much better very soon. Going GF made a world of difference for my daughter in pretty short order.

    Thank you! I'm sure we will figure it out and I'm looking forward to her feeling better but I,was so hoping for a thyroid diagnosis!! My older daughter has Hashimoto's and the idea of taking a pill versus a whole lifestyle change seems much more appealing- you know? I just feel like the diabetes is enough! But I know I'm preaching to the choir....

    Thanks for the response!
    Julie (mom to Jessica 21 dx Hashimotos 12-21-10 and Erin 19 dx 2-9-07 pumping humalog in Medtronic Revel

  7. #7
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    My daughter did spend more $ on things like fresh berries & gluten free flour tortillas, but overall the dining hall at Utah was pretty good. They have a section that is allergen free, so no gluten, nuts, seafood, wheat, corn. They have a grill where she could always get a chicken breast. They have salad bar & fruits & gluten free bread in the dining hall.

    As someone else said, do not go gluten free until biopsy shows positive. Once diagnosed, if you want pointers on what things are worth the $ & which aren't, myself and others can give our 2cents. If you need/want something specific we can help direct you & maybe save you some $. For the most part, its a lot easier these days. Many people eat sandwiches as lettuce wrap vs a bun; a lot more places have gluten free options when eating out.

    Dani did not have many real symptoms before diagnosis. She did notice afterward that the random headaches & stomachaches she had complained of seemed to not exist anymore. Overall she felt good. It was like she didn't realize she felt bad before.
    Kim
    Mom to Danielle, age 18, dx'd type 1 age 3 in 2001. MM 630G pump with cgm. dx'd celiac 6/09
    She will be a sophomore at University of Utah in the fall 2017.
    Go Utes!

  8. #8
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    Southern California
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    Quote Originally Posted by kim5798 View Post
    My daughter did spend more $ on things like fresh berries & gluten free flour tortillas, but overall the dining hall at Utah was pretty good. They have a section that is allergen free, so no gluten, nuts, seafood, wheat, corn. They have a grill where she could always get a chicken breast. They have salad bar & fruits & gluten free bread in the dining hall.

    As someone else said, do not go gluten free until biopsy shows positive. Once diagnosed, if you want pointers on what things are worth the $ & which aren't, myself and others can give our 2cents. If you need/want something specific we can help direct you & maybe save you some $. For the most part, its a lot easier these days. Many people eat sandwiches as lettuce wrap vs a bun; a lot more places have gluten free options when eating out.

    Dani did not have many real symptoms before diagnosis. She did notice afterward that the random headaches & stomachaches she had complained of seemed to not exist anymore. Overall she felt good. It was like she didn't realize she felt bad before.
    Thanks! I will definitely reach out for help-- really overwhelmed looking at everything and will take all the help we can get! We have an initial appointment with the gastro next week and hopefully can get the biopsy scheduled soon after so we can just move forward.
    Julie (mom to Jessica 21 dx Hashimotos 12-21-10 and Erin 19 dx 2-9-07 pumping humalog in Medtronic Revel

  9. #9
    Join Date
    Feb 2014
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    Bay Area, California
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    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.
    Mom to a sweet 14 year-old child, was diagnosed at age 10 on 12/4/13
    Started with Humalog and Lantus.
    Diagnosed with Celiac on 2/18/14
    OmniPod since 3/26/14
    Dexcom G4 since 4/11/14

  10. #10

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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.
    Ahh Cheetah-cub, your post hit me. I am an adult but it is so true trying to go into a procedure without food or a sugar treatment for 12 hours is really hard... Wish all the Drs had a clue as to how to help the Type One's do this, throughout their lives Have been doing this on my own for numerous surgeries over 40 plus years and other tests and it is hard. Sounds like you had a great Endo, mine was always missing in action for my procedures and the team on call was clueless, I woke up from surgery more than once without my pump site attached and no record of when removed etc.

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