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Expectations post-diagnosis for ongoing medical support

scowt1
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scowt1 Rookie
scowt1
Posted

Hello there. I am pretty new to this forum and very glad to have found this group! 

My 10-year-old daughter was just diagnosed with Celiac Disease. We live in a major city and are very fortunate to have options for her ongoing healthcare.    There is a well-regarded private hospital with a celiac specialist that we were referred to, but there was a two-month wait. We instead went with the Children's Hospital where we got in much sooner. 

During the first meeting, the doctor asked why we were there, said she'd look at the labs later and prescribed the endoscopy. I didn't love this approach, but also got that a nuanced discussion of lab scores was a time suck. The office does run on schedule, which is much appreciated. Post-endoscopy there was a 15 minute appointment where she explained Celiac Disease to our daughter, set an appt for next month and blood work in another 5 months. I asked if we should see a dietician and she said if our daughter was having difficulty with going gluten-free, she would find one for us. Didn't seem to have a "go-to" for this request. 

Our child has sensory issues around food and our pediatrician was very concerned about her eating habits and nutrition before this diagnosis. I guess I would have liked a little more time to discuss this and wonder if a vitamin and mineral deficiency test is also needed. 

I had originally set an appointment with a doctor who specializes in celiac disease at another hospital and have yet to cancel. Are my expectations out of whack here? I do not want waste anyone's time, especially when another child could take that appointment for a much-needed diagnosis. Thoughts?

Thank you!  

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knitty kitty Grand Master
knitty kitty
Posted
(edited)

@scowt1,

Take the appointment with the Celiac Disease specialist.  

You were not happy with the first doctor.  I would not be either.  Doctors tend to brush off questions and avoid conversations about things they are not knowledgeable about.  

Run to the Celiac specialist!  

Remember, you are hiring the doctor.  If they were mechanics, which one would you let fix your car?  Shop around.

Take copies of your records with you.😼  

P.S.  Yes, nutritional deficiencies need to be addressed.  A good B Complex won't hurt if blood tests don't show outright deficiencies.  Blood tests for vitamins are not very accurate as they don't reflect how well the vitamins are being utilized inside cells.  Vitamin D and magnesium should be checked as well.  

Keep us posted on your progress!

Edited by knitty kitty
Typo correction additional information
scowt1 Rookie
scowt1
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Thank you so much for your thoughts!

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