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Apt with Gastro tomorrow re:celiac, ques to ask?

Discussion in 'Parents of Children with Type 1' started by chocoholicsc, Apr 9, 2012.

  1. chocoholicsc

    chocoholicsc Approved members

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    Hello everyone!

    Well it's been 3 weeks since Christopher's bloodwork came back positive for celiac and we meet tomorrow with the gastroenterologist to discuss a biopsy. I really, really don't want to have to put him through that, but I think they will make me.
    His TTG was over 100 so it seems unnecessary to me to go through having a biopsy.
    What are your thoughts and are there specific things I should ask the doctor beforehand?

    Thank you so much for any help/opinions you have!
    Candy
     
  2. dvane

    dvane Approved members

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    Ethan had an endoscopy when he was 5 to confirm celiac. I have to admit that it was the fastest proceedure I have ever heard of. It took less that 10 minutes and that included the sedation. Our gastro told us that a biopsy is the only way to actually get confirmation. Hope all goes well!
     
  3. momtojess

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    The endoscopy is really a quick, simple procedure. Only took about 15 minutes, then about 2 hours before we left. Jess literally got out of the car and stayed outside playing when we got home as if nothing was done.

    I didn't wasn't the procedure but I didn't want to commit to a life long diet change if there was even a 1% chance the blood work was incorrect. 4 yrs later, Jess still has no/very mild symptoms if she accidentally eats gluten that it makes it hard to not question the diagnosis at times. If we hadn't had the endoscopy I would really be doubtful.
     
  4. Flutterby

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    Kaylee was 5 when she had her endoscopy done. I wanted to be absolutely positive that she had celiac before I put her through a gf diet. Also for documentation for school and accomidations we needed a definite answer and for us the only was to get that answer was a biopsy. They took her back, I went to the little cafe to get a bagel and by the time I got back she was already done. We had our answer right away although most of the time I don't believe they do give you the answer right then but she had absolutely no vili, we all knew it was celiac. She went gluten free that day. About a week later we got the 'offical' results saying it was definitely celiac.
     
  5. chocoholicsc

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    Thank you so much for your replies. I cannot tell you how much it puts my mind at ease to know that if we do have to do the biopsy, it's a relatively easy procedure!:cwds: We are waiting for doc to come in now, I will post later when we are done.

    Thanks again!
    Candy
     
  6. manda81

    manda81 Approved members

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    It is a simple, quick procedure, but if you do not want to do it, you don't have to. If you are confident with the diagnosis, biopsy or not, going gluten free is the only treatment. We opted to not have the biopsy after talking with our doctors, based on our symptoms and labs.

    They can't "make" you do anything, and you shouldn't feel like you have to do it. You're their boss, and you are paying them for a service, not the other way around. :)
     
  7. chocoholicsc

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    You're absolutely right, Amanda I sometimes forget that!:cwds:


    I really did like this doctor. He pretty much said exactly what I was expecting that the scope is the only absolute way to confirm the diagnosis. In the end I guess I worry that in 10 years if Christopher were to totally rebel against the GF diet, it will be good to have done the biopsy so there is absolutely no room for doubt that it is medically necessary. So we are going to go ahead and have it done, next week. :cwds:
    It really does help to hear from other parents that have had their kids go through it, and it sounds like its really not a big deal.


    Thanks to all who responded!
    Candy
     
  8. Flutterby

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    This is true. You are the boss and don't have to do anything that they suggest. But in the case of celiac. It is considered a 'disability' and if you need accomidations for school (we use them for the food program, and snacks at school, celiac is included in her 504). You could have a dr that won't document the celiac without 'proof' in a biopsy. I do know the trend is changing and certain blood test results are proving that a biopsy may not always be necessary.
     
  9. manda81

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    That's the case for us. We (and our doctors) suspected celiac before we had our labs done, based on our youngest son having textbook symptoms, and our oldest falling off the growth chart. Once we ran the lab work, their tests were incredibly high, our oldest being the highest numbers the doctor had seen!:eek:

    Going gluten free is a lot of work, and a steep learning curve, I would HIGHLY recommend the biopsy if you have any doubt, because you need to be absolutely sure before you dedicate to the lifestyle.

    I'm glad your appointment went well, and that you have a team you trust! :) When you are ready to start the GF diet feel free to shoot me a PM. I'd be happy to help out!
     

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