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

chrissy

This Is Starting To Scare Me

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hi all, my daughter is still losing weight. she is down to 72 lbs. she will be 15 next month. she is in a really bad depression. i took her in to be assessed and we have started her on prozac. i shut myself in the bathroom the other day so that my kids couldn't see me cry. she is so unhappy and looks terribly thin. the doc says if she gets too low we can put in a feeding tube. that would be a pain, but it sure would relieve some of my worry.

christine

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Oh Chrissy, I'm so sorry to hear that. Is she depressed about the diet, or that she's not gaining any weight? I can't remember if she goes to school or is homeschooled. Are the kids at school giving her a hard time?

Are there any other dietary concerns - lactose or casein?

I don't know how to ask delicately, but is she eating much? Does she just need to increase calories?

I'm sorry I'm not much help, but here's a (((((hug))))).

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I really don't know what to say to help. Could she possibly be Anorexic along with the Celiac. There is a young member on here that used to be both. I wish I could think of her name so that you could PM her. Maybe someone else will remember. If that is not the case, then the only thing I can suggest is what I had to do when my weight dropped lower. I drank 2 Ensure Protein drinks a day plus 2 Frappachino's. I could not eat enough to gain the weight and those two items hold many calories. The Ensure Protein holds calories and vitamins. You might try that. I only liked the chocolate ones. Good Luck and please accept my BIG HUGS.

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Chrissy,

I'm so sorry about the problems your daughter is having. My oldest is 14 and I feel for you - I can't imagine how hard it would be to see my child so sick. I hope and pray that the doctors will have wisdom to figure out something that will really help her. Cyber hugs from mom to mom.

((((((((((HUGS))))))))))

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I'm so sorry!!! My daughter is turning 1 in a couple weeks and is 13-8. She's looks like a 3 mo. old. We have a feeding tube for her and it's wonderful. We keep it going all night and let her eat all that she will during the day (not much). It has literally been a lifesaver for her. I'm sure you've tried all the high fat foods, but we've been pretty creative around here with 2 underweight kids. Have you heard of MCT oil? You have to have an Rx to get it, but it has 7 cal/g as opposed to the regular oil with 4 cal/g. They prescribed it for Meg, but she couldn't tolerate it yet. You can use it in baking, but we were just mixing it in with the breast milk for her. Another thing is Polycose. It looks like Splenda, but it is a carb calorie enhancer that melts quickly and has little taste. Let me know if you want any other ideas and I'll be glad to share.

Praying for you both! :)

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Guest Robbin

I am so sorry to hear about your daughter. I think at this point a feeding tube might be a good idea until she gains some. I have a similar problem with my son-he's 13, 5'5" and down to 100 lbs. I know it's not as thin as your little girl, but I can relate to the fear. His dr. keeps insisting its anorexia, but we are awaiting his results for celiac tests. He has a lot of other food intolerances and that is not helping with gaining weight. Is your daughter able to drink dairy or soy? I bought my son boost tropical flavor -it does have milk protein, but he has lactose intolerance-not casein. He tolerates it pretty well. I have also been putting a lot of things extra in his foods, for instance in his scrambled eggs I put bacon pieces, and in his mashed potatoes I put ground up baked ham bits. He doesn't eat much, but what he does eat I try to make as calorie-laden as possible. My thoughts and prayers are with you and your daughter. It is much worse when it's your child than when it is yourself, sometimes. Keep us all posted on her recovery.

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Chrissy-

So sorry to hear about your daughter. I hope you had some people who are supporting you--that you can fall back on right now. How long has she been gluten-free?

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thanks so much for everyone's support! my girls have been gluten free since the first of january. kassie and molly are doing great. i don't think tianna's depression has to do with the celiac diet----i think she's been this way for a long time----we just didn't pick up on it. she's always been quieter and a more solemn child than her twin. she is really smart and has managed to keep a 4.0 at school----which is great, but i'd rather she was keeping her weight up. our ped gi was concerned about an eating disorder, but our local doc says he highly doubts she has one. there is only one female councelor in our area that our insurance will cover, and she is a social worker. we are going to give her a try for a little while. if it doesn't work out, our ped gi knows someone near him that he says is good-----but he is about 3 hours away. i guess once school is out i can drive her there once a week if i have to. i really hope the prozac kicks in soon and helps her.

christine

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Hi Chrissy, So sorry to hear about your daughter(((()))))) I know when I was diagnosed, the doc asked me if I were depressed or had any eating disorders like anorexia. I told him that I was only depressed from not feeling well and not being able to keep food down, it's like a viscious cycle.

About the weight loss, I had always been on the heavier side, until I realized that everytime I ate I felt pain and nausea. It is so hard for us to have this chronic illness, that it must be even more awful for a child to have it and not be able to do anything to make her feel better and make the pain and misery go away.

I too had to have a feeding tube put in on top of drinking the boost plus ( lactose free) and I gained 20lbs.!

I was so excited to gain weight ( first time in my life!)

Nobody understands though, not even the doctors, how difficult it is , it does make you "feel down" that you are in pain and when you eat it feels like a knife is being stuck in your belly. If the food doesn't stick, you can't force it . :o

Which came first the chicken or the egg ? <_<

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If your daughter is anorexic, she is going to need more than just a social worker, she will likely need inpatient care to recover from an illness that is beyond her control at this stage. I would not care about school at this point, she is in real danger (altho I realize you need to be concerned about the logistics of school in session and a 3hr drive)

Ignore a doctor who doesn't consider anorexia in any adolescent, severly underweight 4.0 girl! Yeesh! Again stressing the "if" -- "if" she is anorexic as well as celiac, you will not be able to coax, plead, cook, or cajole food into her. Prozac might ease her depression but may not help with the habits she has trained herself into and really can't overcome on her own, no matter how much she tries or you try for her.

We'll be thinking of you.

Joanna

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the councelor that the ped gi has suggested specializes in eating disorders, so, if we aren't seeing improvement before too long, i will take her there. she was just a little more talkative today when she came home from school----i am hoping this is a positive sign.

christine

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Just in case one of the things she likes is chocolate (and she can tolerate dairy)...what got my son through when he was so sick was milk with lots of ovaltine. It has vitmains in there and it goes down very easily and tastes great. You can probably mix it with soy milk too (I don't remember if there is dairy in the ovaltine...) we find it in the coffee aisle with the hot chocolate mixes.

Even if there is only one thing she will eat...give her as much as she will eat.

the councelor that the ped gi has suggested specializes in eating disorders, so, if we aren't seeing improvement before too long, i will take her there. she was just a little more talkative today when she came home from school----i am hoping this is a positive sign.

christine

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Chrissy, have you thought about her trying the Specific Carbohydrate Diet? A lot of us with Celiac who don't heal find out we are intolerant to all complex carbs (ie: all grains, starchy veg, sucrose). Take us just off gluten and we simply don't get better. In fact Celiac used to be considered a (complex) carbohydrate intolerance rather than merely a gluten intolerance!

In addition, depression is a sympton of Celiac (I get it if I don't eat right, and that includes staying away from all grains, dairy and soy, not just gluten).

If you want more info PM me, or search the board for 'specific carbohydrate diet'.

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I wanted to send you my warmest wishes...I'm a recovering anorexic, and if your daughter does in fact have an ED, I feel for you. I know the constraints of the diet can be overbearing, and it could be she is limiting her food to certain things so she doesn't have to feel like she wants the gluten-full foods she can't have. I had to go inpatient too, for 3.5 weeks, then outpatient for 3.5 weeks. It's doable...I hope the best for her and your family. If there's any questions you'd like an answer to, we'll certainly be here to help!

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