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    Do you have questions about celiac disease or the gluten-free diet?

Nantzie

Little Miss Bottomless Pit

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I have a 3yo daughter who has the appetite of a grown person, but she is as skinny as a rail. I've always figured it had to do with growth spurts, but since finding out about celiac and nutrition deficiency presenting as hunger, I've had a nagging feeling about it.

She will eat a whole grown-up sized PB&J with chips or crackers or fruit or whatever on the side, and still be hungry for a snack an hour or two later. And she eats three times a day. The only time she doesn't have an appetite is when she's sick with a cold. It's consistently been like this for over a year. Before that she'd have ups and downs with appetite that I could point to as coinciding with growth spurts.

My dad always had what everyone said was a fast metabolism. But he ended up dying of stomach cancer, and had a lot of what I now know are symptoms of celiac. So I'm wondering if this is something that is showing up in my daughter.

She's actually always been very, very tall for her age, but for the last year or so, she hasn't grown much. I know it levels off, but a lot of the winter clothes she had last year still fit her. And the heavy winter coat she wore all last winter was one I got her the end of the season the year before when she grew out of her regular one. I ended up giving it to goodwill because I *knew* it couldn't possibly fit her for one more year. But now, I'm wondering if it would have...

Oh, and she also seems to pick up every cold that goes around. She's been sick with one cold after another since September.

I was (and am) hoping that even if my kids had the genetic markers, they wouldn't activate until they were older (if ever) and could understand what was going on.

Anyone else have really hungry kids who ended up having celiac?

Nancy

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Have you had her thyroid levels checked? It sounds like it could be hyperthyroid, You can google it to see more symptoms. I would definely have her checked out for celiacs. It is a terrible thing to go through many years of being sick only to discover you had celiacs all along.

good luck, Wendy

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Yes. My daughter was eating more food and calories at the of 11 months than I was eating. She was losing weight and continuing to slowly grow inches in height.

Laura

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Yes! My little girl always ate a ton of food before being dx'd. It was a joke in our family about how Emmie was always digging in the pantry. My 18 month old was the same way....for breaky he could eat 2 whole cereal bars, a banana and a cup of milk. Or he'd eat his entire dinner, then come to dh and I for what was on our plates.

I remember bringing Em to the pediatrician for the umpteenth time saying something was wrong......and I was asked if she ate enough. My child was digging in the diaper bag searching for more food, and this was right after breakfast.

So, I say definately get your child tested. Now that my little girl has been gluten free for 8 months, she is picky again and eats like a normal 3 year old.

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I could have written your post. I had the exact same problem with my daughter and we saw MANY specialists trying to figure out what was wrong with her. She would want to eat constantly (huge adult sized portions and even more than I could eat) and would scream when she had to get out of her highchair. She would be asking for food 1/2 hour later. She could not participate in playgroups, art classes, etc. because she would always need to go home to eat... She was moody, irritable, and just miserable to be around because she was always crying.

We had her thyroid checked, a diabetes screen, saw an endochrinologist and no one found anything wrong with her. This had been going on ever since she started eating solid foods and by the time she was two, she was so skinny with a huge distended tummy. She even started to lose her hair due to malnutrition (to the point of some balding) and has some physical developmental delays.

We were sent to a psychologist to address her behavioral problems in regard to eating and they couldn't help her so suggested we see a psychiatrist. We then decided to have her tested for celiac disease. Her blood test came back neg, but we put her on the diet anyway and have had AMAZING results. We finally have our little girl back and she is happy, healthy, and thriving in every way. We then had her tested through enterolab and she came back pos. for a gluten intolerance.

She is no longer losing her hair and more is growing in. She has made lots of progress in her gross motor development and above all else her quality of life is so much improved because she is able to play with her friends and have her thoughts consumed by how hungry she always was. Looking back on it now, she was so sick for so long and I wish we could have found this out much sooner. Her drs. refused to believe that her constant hunger could be a reaction to gluten.

I really hope you can get her checked and then if it comes back neg. I hope you try the diet anyway. The blood tests aren't 100% accurate in little kids. I hope you find some answers. I can remember so vividly how it feels and I would NEVER wish to have my baby that way again.

Good luck,

Shannon

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I saw on your signature that you ordered a genetics kit from enterolab. My daughter has a double copy of the DQ-1 gene, which is not usually a celiac gene although a small percentage of people have celiac with DQ-1. She never had a biopsy since her bloodwork was neg, but I really do believe that something would have shown up on biopsy due to her somewhat severe malnutrition. I'm not sure what else would have caused that since she was eating us out of house and home.

Just letting you know that even without the celiac genes she has been helped tremendously by the diet.

Good luck

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Thanks everybody for your replies. Yea, that's what I was afraid of. I'm definitely going to go on a gluten free diet no matter the test results. I just really believe it will help me. I also think that my dd needs to go on it too. The other day she finished a whole PB&J and then asked me for chicken nuggets. I told her no, so then she asked for pizza. I ended up giving her some fruit and some crackers because I just couldn't stand the thought of her eating a whole 'nother entree.

The good news is that there is a pediatrician who has been mentioned on this board as being a good, knowledgable, and up to date doctor as far as celiac, who is in my area. And the last time I was at their pediatrician's office, I noticed that she is in the same office as their regular pediatrician. So I know that they're going to be in good hands as far as testing.

I actually read somewhere on here that with the DQ1 genes, the complications from ingesting gluten is more neurological and physical rather than digestive. Which is what I'm more worried about as far as my family history that includes multiple sclerosis, schizophrenia, ADD, ADHD, depression, anxiety, etc. So you might want to do some searches on the board to see if you can find the posts on that. I think one of them was on gluten ataxia.

Nancy

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