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An Update

e&j0304

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e&j0304 Enthusiast
e&j0304
Posted

I just want to let you all know that Ella is doing extremely well on the gluten-free diet and I want to thank you all for your advice and support. You were all so kind and encouraging, not to mention full of very useful information!

Ella has been gluten-free for an entire week and the changes in her are nothing short of a miracle. She is playing and is happy. She is choosing to play with her friends rather than eat. She is not asking for food every 5 minutes all day long and she is no longer clingy and irritable. Her stools are "normal" and her tummy seems less bloated. She just seems to feel so much better. Food is no longer controlling Ella. She actually left food on her plate tonight at dinner and said she was full!!! That was at 5:45 and she played all night without one mention of food and went to sleep at 9:00. She is a totally different child and I cannot believe how quickly the changes have taken place.

I am so happy, but part of me is also very angry that she suffered for so long when all we had to do was remove something from her diet. Her doctors wanted to drug her before trying this diet....I will never understand that. We are in the midst of switching pediatricians in the hopes of finding one who will work with us to help Ella.

I just wanted to let you know how well she was doing and again thank you for all your help. This is such a wonderful resource for people. You should all feel so good about all you do to help others.

Thanks again and I'll definitely be sticking around here!

Shannon

Ella 1/15/03 Finally feeling better :)

Jack 11/23/04

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Canadian Karen Community Regular
Canadian Karen
Posted

Wow Shannon! That is wonderful news! Sounds like you are definitely on the right path......

I love to hear success stories! They just make my day!

Hugs to Ella,

Karen

KaitiUSA Enthusiast
KaitiUSA
Posted

That's wonderful! I hope she continues to improve on the diet :D

jenvan Collaborator
jenvan
Posted

Shannon--so glad to hear Ella is good. That is great! We can relate to the anger--use it to spur you on to tell others about celiac disease and promote awareness :D

lbsteenwyk Explorer
lbsteenwyk
Posted

Shannon- this is such wonderful news! It is so difficult to see your child suffering; I know you must be so happy to see such a rapid improvement. Keep us posted on Ella's progress!

Matilda Enthusiast
Matilda
Posted

..

Carriefaith Enthusiast
Carriefaith
Posted

I'm glad to hear that she is doing well :)

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Guest taweavmo3
Guest taweavmo3
Posted

That is such awesome news! I am so glad little Ella is on the mend, it's so great to watch them transform into the happy, carefree babies they should have been all along. Alot of Emmie's behaviors, we had thought were normal, until we started her on the diet. I still remember the first night she actually just played with her toys for more than a few minutes. And the first time I could take a shower w/out her screaming outside the shower door, now that was heaven! It's the small changes like that, that really make a world of difference.

Good luck, and keep us posted on her progress!

tarnalberry Community Regular
tarnalberry
Posted

Congrats!! That's fabulous!

Guest nini
Guest nini
Posted

YAYYYYYYYYYYY!!!!!!!!! I am soooo glad to hear it! I ended up switching Cheyenne to my Dr.s office. It is a family practice and since they KNOW that I have celiac, they are so much more aware with her. They have been so incredibly helpful with supporting me in keeping her Gluten Free without a conclusive blood test. Just based on her improvements on the diet and how healthy she is now.

Merika Contributor
Merika
Posted

Wheeeeeee :) :) :) :) :) That's great news!

Merika

key Contributor
key
Posted

Shannon,

I am so happy for you and Ella. It is such a huge relief to finally figure out what is going on. YOu will enjoy watching Ella every moment from now on. I think I enjoy my little celiac son twice as much, because he was sick and fussy for so long! He is now happy and healthy and thriving!

I know you must be so frustrated with what your experience was with your pediatrician and the ped GI. I read where you mentioned her hair falling out and it didn't concern him. THat is a huge sign she wasn't getting all her nutrients!

She will grow and thrive more each day and you can pat yourself on the back for following your mommy instincts! Good for you!

I hope your ped GI is more aware in the future of the varied symptoms of celiac.

I would at least let him know.

Congratulations!

MOnica

e&j0304 Enthusiast
e&j0304
Posted
  • Author

Thank you all so much for your words of encouragement. Ella is still doing remarkably well and we are so happy to see her playing and happy. Of course we still have our ups and downs a little bit, but it is undeniable that she is much, much better than she was prior to being gluten-free.

I called the ped. GI office yesterday and spoke with the doctor's nurse and she stated that Ella's tests showed she had, "No levels" whatever that means and that it was very unlikely that she had Celiac. She wondered if maybe Ella is allergic to something else and by removing the things we did from her diet that it may be making the difference that we see. The thing is that I only removed gluten from her diet! So how could it be anything else?? She did say that if it were her daughter and she was seeing the change that we are seeing, she would have a hard time giving her gluten again. She said that sometimes, "the proof is in the pudding." I guess I'll have to go with that. I am going to speak with Ella's new pediatrician next week hopefully to discuss what's going on with Ella without Ella in the room. I want her to know the story before she meets Ella for the first time.

Overall, we're all doing well. I have my ups and downs. A big part of me REALLY wanted some test to show something so that we had an actual, definite diagnosis. That would make following the diet and getting everyone else to understand it so much easier. As it stands, I hope that I don't continually second guess myself and what I'm doing every time there's a setback. I definitely would never want to deprive Ella of all kinds of "kid foods" for no reason, but I also never want her to go back to the way she was....

I know you all understand what I'm going through and most other people probably don't, so that's for listening. I hope you all have a fabulous weekend!

Shannon and Ella

Guest nini
Guest nini
Posted

by going gluten free you will not be depriving her of all the kid foods... Trust me on this one! Chey and I have found just about anything you could desire for a kid... Anytime you have any questions, feel free to e-mail me and I will gladly share ideas of any kid friendly goodies that are gluten-free. You don't need to second guess yourself either, as you have a test result of sorts! You tested her by removing the offending food from her diet and the results of that test was a dramatic improvement!

Kasey'sMom Enthusiast
Kasey'sMom
Posted

I know you must have mixed emotions with the test results. I'm glad Ella is doing well on the gluten-free diet. :)

My daughter had inconclusive blood results. After going completely gluten-free, our immediate family could tell a huge difference in my dd as well. At that point we started getting more support and people would actually pick up gluten-free treats for her. Over the last few months we've also had two adults in our family that have been diag. with celiac disease. We did find other food allergies and intolerances that also helped her body to heal. I'm really glad I followed my heart because we spent a long time trying to come up a Dr.'s diagnosis. Since we've gone gluten-free I've find several people in my community that have chosen to go wheat free or gluten-free for a many different reasons. A few of the mothers noticed a change in their child's behavior and one of the moms found that her sons eczema was being triggered by wheat. :)

Take care and over time....you may find the "downs" don't come quite as often!! :wub:

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