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19-month Old Dd Just Diagnosed

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Posted 24 September 2004 - 10:26 AM

Hello all.

My daughter, Vicky, is 19 months old and was just diagnosed with Celiacs. My dad was diagnosed (in his 50s) about 3 years ago. Presently, the diagnosis has been through the anti-endomesial antibody blood screening and we visit a pediatric GI doc next week.

I'm sure our story is familiar, so y'all don't need the minute details. As a baby she had reflux (controlled by Prevacid) and when she transitioned to solid food, she seemed to do ok. We took her off the medication at about 12 months and she was just getting into table food. However, she was not a big eater at all and at 15 months, she had gained weight (compared to 12 months), but not along the same curve (normally the 30-40% in weight). In June/July we noticed that her eating was getting very sparse and that she was getting skinny Ė really skinny. At 18 months, she had lost weight and was down to the weight she was when she was 12 months old (20 lbs 8 oz at 12 months and 20 lbs 1 oz at 19 months). Well below the 5%.

Pediatrician thought reflux Ė particularly because she just didnít seem to be eating a lot of food at all. I reminded him about the Celiacís in my family, but he really thought reflux was the problem Ė so we re-started Prevacid and gave her 4 weeks to gain weight. In 4 weeks, she put on 9 oz Ė less than the ped wanted, but at least it was a gain. For the first 3 weeks we didnít see much increase in her appetite, but the last week she seemed to pick it up. But, we decided to run a bunch of blood tests, including the Celiacís and schedule a pediatric GI doc appt right away. Blood work came back this week and it shows positive for Celiacís antibodies.

So, here we are. We have a 3 year old son who has never showed any Celiacís symptoms Ė and can that boy eat! Vicky attends daycare full-time Ė it was a blessing for her eating previously, because she seemed to eat more when the other kids did. Now, it is going to be much harder, as she can no longer have a lot of the centerís meals. Iím sure weíll figure it out.

It is going to be very hard right now because she is not going to understand why she canít have some of her favorite things Ė she has a very limited repertoire of things she will eat as it is, changing is not going to be easy on anyone.

Man, that got longer than I expected. I hope to hang around and learn a lot from yíall Ė Iím sure there is so much I donít know and being able to talk to people who have and are going through the same things is great.

Edited to add that we have not gone gluten free - we want to talk to the GI and find out about the biopsy!

Thanks for reading.
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Posted 24 September 2004 - 10:37 AM

I know it's going to be tough to adapt your daughter to a new diet, but there are so many great gluten-free foods she will enjoy, that the transition may not be that difficult.

I agree that you need to keep her on glutens until after you visit the GI doc. Good luck to you.

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Helen Kendrick
Gluten free since 5/03/04

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