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New To Board And Celiac

Guest Jordan

By Guest Jordan
in Parents, Friends and Loved Ones of Celiacs

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Guest Jordan
Guest Jordan
Posted

Hi my name is Amy and I thought I would just introduce myself. I first heard of Celiac when the GI doctor my daughter was referred to mentioned it last week at our first visit. He had bloddwork done and it came back positive, so he then scheduled an EGD, which she had Thursday. He told us Thursday after looking at the pictures to start her on a gluten-free diet because it again looked like Celiac. He then called Friday night to give us the results of the biopsy - it is Celiac. I have been an the computer it feels like non-stop since Thursday reasearching Celiac and gluten-free foods. I am still in shock because I really didn't think she had it. She had been diagnosed with "failure to thrive" but no other real symptoms, but then again she is only 16 months and can't tell me she isn't feeling well. Well anyways I just wanted to introduce myself as I have already used this site a lot these past few days and continue to learn so much (I know that there is still so much more to learn). I am sure I will have many questions down the road and am thankful to live in an age in which the internet makes so much more possible.

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Ursa Major Collaborator
Ursa Major
Posted

Hi Amy, and welcome to this board. I hope your little daughter will improve quickly, and become that healthy, happy toddler she is meant to be on the gluten-free diet!

Guest Jordan
Guest Jordan
Posted

Thanks Ursula. I have already noticed some behavioral changes in her which is making the gluten-free diet easier to adjust to, in other words it is hard at first but it is So worth it. She does seem much happier and playful, not wanting to be carried around by me all day like before. I would never of thought that in two days there would be a difference but it seems to really be so.

Nic Collaborator
Nic
Posted

Hi, you will see that you are among some of the lucky ones to get the diagnosis so early. She has not had much time to get used to "regular" food and before you know it, will be completely happy with her gluten free food. My son was diagnosed at 4 and even though he still sometimes complains about what he cannot have, is perfectly satisfied with his gluten free treats. He has adjusted well and so will she :) . Good Luck!

Nicole

GFBetsy Rookie
GFBetsy
Posted

Amy -

Depending on where you live, there are also groups like the GIG (Gluten Intolerance Group) and CSA (Celiac Sprue Association) (is that right?) that have local meetings. These local groups also provide a lot of support/encouragement to those who are new to this diet. A friend and I actually teach gluten-free cooking classes at a local grocery store here in UT. I'm not sure how many other places have similar programs, but I do know that there's a lot more information available now than there was 10 or even 5 years ago, and the people on this forum know an awful lot of that information. If you have any questions, just ask!

azmom3 Contributor
azmom3
Posted
Thanks Ursula. I have already noticed some behavioral changes in her which is making the gluten-free diet easier to adjust to, in other words it is hard at first but it is So worth it. She does seem much happier and playful, not wanting to be carried around by me all day like before. I would never of thought that in two days there would be a difference but it seems to really be so.

Hi Amy,

You're so lucky to have the diagnosis so early and also to have found this board. I have a 22 month old who had a blood positive test recently. I have been obsessed with this message board, asking a ton of questions and trying to learn as much about celiac, testing procedures, diet, etc. as I possibly can. Not only is everyone here very knowledgeable, but they go out of their way to make you feel at home, let you vent, offer help, etc. It's also very reassuring when you read people's stories and it looks like your own story...you're not alone and sometimes you can even learn from their mistakes, rather than having to make them all over again. My son is also very clingy, so I'll be anxious to see if this improves for us as well. It's tiring when you carry them everywhere and they alway want you (it's really nice sometimes, too, but you know what I mean. :rolleyes: ) His main symptom is also failure to thrive. He has some other symptoms, but doesn't seem as much in pain as a lot of other kids, so I'm thankful for that. Anyways, good luck!

Guest Jordan
Guest Jordan
Posted

I just wanted to thank everyone who responded and certainly made me feel welcomed. You all were right about everything you said. First this site had been extremely helpful and I find myself reading every post and getting answers to questions I hadn't even thought of? Also I agree with the fact that at least was diagnosed early so the gluten free diet should not be a hard transition for her to make. Lastly I am very thankful that she doesn't seem to have been nearly as sick as some of the other peolpe I have read about. We actually meant with a dietian today that our doctor had referred us to and she gave me some information about local support groups in my area so I look forward to that as well. Thanks again, Amy.

P.S. Ursula - Know exactly what you mean about the "clingyness" (Is that a word?) Still trying to find that middle ground - now she doesn't seem to want me to carry her at all and sometimes find myself missing the old clingy her - oh well - at least she seems to be feeling better!

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TCA Contributor
TCA
Posted

here is a list I started a while back for newly diagnosed. so glad she's already better. Open Original Shared Link

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    • Jy11
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      By Jy11 · Posted

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