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New Here - 5 Year Old Suffered For 5 Years

andreamly

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andreamly Newbie
andreamly
Posted

Hi. My almost 6 year old daughter just tested positively for Celiac on her blood test and took the biopsy about a week ago. Based on all the reading I am doing here, my plan is to keep her on the gluten free diet regardless of biopsy results (even though docs are certain it will be positive), since at this point I have NOTHING to lose.

she started falling off the charts at around 6 months and 2 tests for celiac (latest being when 18 months) were negative. Therefore she was called FTT and pingponged back and forth between gastro and endo. The truth is that she is a very healthy and smart child, and the only problem she has is being incredibly short and underweight. I heard from many people that she is happy and healthy so just let it be - nothing wrong with being small, but I persisted, since it seemed so unnatural. She is shorter than anyone her age by A LOT and I am 5'6 (with 3 brothers + dad over 6 ft) and my husband is 5'9 (with 2 taller brothers).

It took a switch of doctors to reschedule a celiac blood test and i am soooooo upset that the test had not been done in past 4 years. It is clear she always had it, but a neighbor (not a doctor!) told me that it is possible when she tested negative, she just didnt have a lot of gluten in her diet at the time! I wish someone had asked me! We changed our whole healthy lifestyle around to stand on her heads to get her to gain calories - pizza, white bread, cereals - things that make me sick to eat. When she was younger we were still trying to stay healthy, but she still was not gaining at all - she ate a lot of oats. Now that it is out, I have to wean her off her favorite foods.

It is SUCH a relief to have a direction, such a relief to get rid of all that crap she has been eating. The biggest relief is that the food issue will hopefully STOP being such a power struggle since now I will just have to provide the food, she can eat if she chooses or not - her whole life until this moment was a matter of forcing calories down her throat.

The worst part is that I am not exactly ms domesticated - much more of a working woman, so the whole food situation has always been a challenge - now it will be even more so.

Anyone got some really good easy recipes. My daughter is the pickiest person EVER - only bananas occassionally, cooked carrots occassionally, nothing that looks funny, no potatoes, no cheese. Now out of pure hunger, she is beginning to open her mind to other options. Yippee.

Thanks for your help!

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Guest nini
Guest nini
Posted

Ian's has started making some gluten free kids meals, and fish sticks and chicken nuggets and mini corn dogs and such... there are some awesome gluten-free pizza crusts available by Kinnikinick that you can do so much with and Tinkyada has the best gluten-free pasta. Hormel beanies and weanies are gluten-free as well as Dinty Moore's Beef Stew available in lunch bucket size...

I have a soon to be six year old daughter that has been gluten-free since she was 3 1/2 and I have a ton of suggestions, including a newbie survival kit, a file that I can e-mail to you. If you want it e-mail me at nisla@comcast.net and put "request newbie survival kit" in the subject, that way I can hit reply and attach the file for you.

Feel free to ask me any questions, as my daughter has been doing awesome on this diet and I've worked really hard to keep her feeling "normal" and finding fun easy foods that she loves to eat. We are also on a very tight budget, so I've had to find ways to make this diet work without costing us a small fortune.

Carriefaith Enthusiast
Carriefaith
Posted

I'm glad that she finally got a positve test result. Hopefully she will start to feel better soon on the gluten-free diet. I have some recipes here on this thread that she may like:

Open Original Shared Link

Enjoy!

andreamly Newbie
andreamly
Posted
  • Author

Hi. Just to add figures to my already long winded post - My daughter now - at 5 years 10 months weighs 13.5 kilos - 29.7 pounds - has been that same weight give or take for almost a year, and is 100-101 cm tall.

Crazy right? I am so excited to see some quick movement. I hope her growth isnt permanently stunted!

oh, and we only eat Kosher food - so that limits us even more.

key Contributor
key
Posted

Glad you finally got a diagnoses. My son's blood tests were negative at 14 months also, but he had diarhea and also very fussy. Tests just aren't that accurate at a young age. We put him on the diet and he improved within three days. My son hasn't grown a ton, but has grown and is following his growth chart. I also found out I had celiac too, so be sure she is the only one in the family. I am thinking of having my four year old tested. He is my child that is gassier then normal and he used to be 95th and 75th percentile and now he is 50th and 25th percentile. It is probably just that he is following into his genetic makeup, but I want to be sure, because he seems to not eat as well lately. My oldest son, was only in the 10th percentile and so I had him tested, but he was negative.

As far as what to feed her, well I think you will find her eating alot of things she wouldn't before. My son was VERY picky before, but eats almost anything now. We don't eat meat, so have less options, but we had him dairy free for the first six months ,because alot of celiac's can't handle dairy the first six months and he was one of them.

Cheetos are gluten free, cheese's, meats, all vegetables. THere are some frozen Amy's meals. THere are gluten free breads that are actually very good I think. Gluten Free Pantry makes a wonderful bread called "Favorite Sandwich Bread" and you don't have to toast it to have it be edible. I bought a bread maker and I just have to throw it in there and it is done in two hours. I also use Kinnikinnick breads, Mini pizza crusts, chocolate covered donuts and love their English muffins, there is a great pasta called Tinkyada and it is very close to the real thing. You can order this stuff online, but I get it all at my local healthfood stores. THere is also cereal called ENvironkids that makes great kids cereals. As far as oatmeal, we were trying Bob's REdmill Mighty tasty hot cereal, but it didn't agree with me and I am not sure about my son yet. Haven't been giving it to him lately though. Also Pamela's makes a great pancake mix that we eat ALL the time and all of my kids like them.

It gets easier and you will be so happy to have her coming to ask you for food! I love hearing my son say, "I want to eat". He is only two at right now.

Ask anymore questions and stick around and read some here.

MOnica

Canadian Karen Community Regular
Canadian Karen
Posted
We changed our whole healthy lifestyle around to stand on her heads to get her to gain calories - pizza, white bread, cereals - things that make me sick to eat.

After reading this, I wondered if you had been tested also for celiac.

I am glad you found this board and there are lots of people here with lots of great info and great support for you.

Welcome!

Karen

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      I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluten free eating may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice.
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