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Celiac. What to expect at my first appt w/my toddler

 
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amother




OP
 

Post Tue, Sep 13 2022, 9:21 am
My two year olds blood test came back with high indicators of celiac. My doctor said I should follow up with a specialist and gave me a referral. I’m so nervous to do the endoscopy. He’s so little.
What should I expect at the first appointment with the specialist?
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amother




Jean
 

Post Tue, Sep 13 2022, 10:21 am
My son was just diagnosed at 2. The specialist just looked over his bloodwork, asked me about his symptoms, and had me schedule the endoscopy. It was a two minute appointment. The endoscopy was definitely a little traumatic, not going to lie. But BH it was over quickly and we got the results right away.
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amother




OP
 

Post Tue, Sep 13 2022, 10:49 am
Is it possible to push it off a few weeks or is it something that can’t wait? Also what are the chances of the blood work being positive and not being celiac
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amother




Gray
 

Post Tue, Sep 13 2022, 10:56 am
amother OP wrote:
Is it possible to push it off a few weeks or is it something that can’t wait? Also what are the chances of the blood work being positive and not being celiac


Do not push it off. The longer he’s eating his inflammatory foods/allergen the worse the long term damage may be.

he’ll be put to sleep for the procedure. In my hospital they let me come into the procedure room until he was under. The hardest part was the fast but they tried to do his first thing in the morning. I had to fast along with him since I couldn’t/wouldn’t eat in front of him and they wouldn’t let me eat in the waiting room. I suggest waking up early to get a small meal in before he wakes up since it’s very hard to take care of a cranky tired fasting child when you’re fasting yourself.

My child had high numbers in his original celiac bloodwork and ended up with a non celiac gluten intolerance diagnosis. His reactions to gluten are very severe so we were all ok with him going off, including him. If your kids a non symptomatic celiac it may be harder for you to want to make him gf, but still extremely necessary. It’s a life changing thing, if you want me to list the good bad and ugly I can.
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amother




Gray
 

Post Tue, Sep 13 2022, 10:58 am
At the first visit they will ask you lots of questions regarding GI stuff, anything else that may be related, they’ll look at any previous bloodwork the child had done (make sure to bring that along), and they’ll make their recommendations based on that. In our case it was a biopsy and endoscopy.
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amother




OP
 

Post Tue, Sep 13 2022, 5:57 pm
Thanks for all the responses. So helpful!
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