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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Daughter Won't Eat
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Do any parents of celiac teens have a problem with loss of appetite in their loved ones? We have plenty of gluten-free foods available but I can't eat for her. It worries me to know she is not getting enough nutrition to heal and is looking & feeling worse again. Any thoughts??

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I have this problem right now with myself! :o I am not really very hungry, plus I am frustrated with having to work so hard to provide food for myself! I can't just open up the cupboard or fridge and eat something! I have to practically force myself to eat and I am sort of grieving the loss of convenience foods. I am sitting here at 10:30 am, and still haven't had breakfast. I'm a little hungry, but I can't figure out what to eat, so I just don't eat. I know I need to, but...

How long has your daughter been diagnosed? If it is fairly early on in the gluten free lifestyle, then I would say it is pretty normal. If she has been gluten free for a few years, then I would say it might be good to have her talk to a doctor about why she isn't eating. It can be hard enough just being a teenager, but having to deal with such a restrictive diet, may just be too much for her.

God bless,

Mariann

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Hmmm; your reply is food for thought(pardon the pun!). She has been diagnosed since july 2003. I have been diabetic for several years and have to eat on a regular schedule whether or not I feel like it; even though sometimes I just have to think of food as medicine rather than all the enjoyable things I used to identify with it. Being a teen surely doesn't help her situation. I got her an appointment w/ the gastroenterologist that diagnosed her; hopefully she will get some good info from that source about the etiology of disease, etc. As a parent I don't want our relationship to descend into a power struggle over eating; but it is heading there. I'll also suggest to her the teen's section of this forum; hopefully she will take advantage of this great source for support. Thanks for your reply-

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ksccurrin,

I was wondering if you have celiac disease, as well? Diabetes is a related disease to Celiac, and since Celiac is genetic I was wondering if have it too.

I do hope your daughter will start eating right, but please do not force her too much. You don't want it to damage your relationship. She is almost an adult and she needs to learn to take care of herself. Just print out some info about the diet and leave it around the house. She may start picking it up and learning for herself. It may aslo help if you could find a local chapter of ROCK, or another celiac support group and meet some other people in your area who have it. She may feel very isolated and different. And I have not meet a teenager who wanted to be that different from everyone else! They like to fit in.

God bless,

Mariann

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My daughter's biggest complaint before her Celiac diagnosis was an insatiable appetite. Once gluten-free her appetite diminished. She is very thin and doesn't like her gluten-free choices so if she has a bad eating day she has an ensure plus blended with a couple of scoops of ice cream. She also eats Reeses Fastbreaks when she is out and can't find anything gluten-free. The doctor started her on 2 slices of bread a day until her next biopsy and the main side effect was the insatiable appetite again. Now we know she wasn't imagining it. SHe gained about one pound after 6 weeks gluten-free but at least she didn't lose any weight. Make sure you daughter takes her vitamins and I also suggest viactive for the calcium. My 18 year old's hair is falling out from lack of protien so warn your daughter. Hair is priority to teenage girls. Also, encourage her to prepare some of her own foods and you may find she is more agreeable about eating.

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I hope it's okay to comment on this...I don't have kids, but do identify with not being very hungry!!

Today, I did have breakfast after work since I was starving, but now, I"ve had some gluten-free cookies, chips, and more cookies. I will have a normal supper, but I sometimes feel like it's pointless to eat since I don't feel hungry. OR, I eat, get sick and then just end up eating like a piggy. *sighs*

Does it ever get better, lol :s.

-Kel

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Hi

My daughter is 5 years old we found out she had celiac disease about 2 months ago. Ronni use to have a good appetite she craved bread all the time. Since being on the gluten-free diet I have noticed she wasn't eating much her lunch would come back from school the same way I packed it. Needless to say I was very upset, well I weighed her last night and she has gained 3lbs dont ask me from what but shes getting what she needs from something. So I understand your concern the important thing is that what they are eating that is gluten-free is staying with them. I hope in time with your daughter and my own we can find things that they enjoy. Good luck

Hillary

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kscurrin,

Is your daughter not hungry, or does she just not want to eat? If she is never hungry, you may want to ask about gastroparesis as a possible problem. The GI should be able to check for it. I have the gastroparesis and I was NEVER hungry, ate often - per the doctor, and lost weight! And when I did get hungry I would be full after a small amount of food.

If she does not want to eat, here are some thoughts- maybe one will help.

Find some cooking classes that she can take with friends, you, or by herself (at her choice. Make sure gluten-free can be accomodated first. )

Find a dietician she can talk to and ask questions with or with out you present. (She may want to find out about alcohols etc.)

Sit down on a good day with her and get a list of foods she misses or wants, and then set out with her to create a gluten-free version. I miss Ho-Ho's! and I can't figure out how to make them yet :(

Maybe she is just having a really hard time getting a handle on the disease. If I hadn't been so sick, I doubt I would have taken to this diet so happily! Maybe finding a local support group would be a huge help for her?

Best of luck

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I was really worried about my youngest daughter(6) because her appetite is decreased and it didn't seem right to me...but she's is finally gaining weight! She is little, only 40 lbs, so we've always been of the mindset to keep quality foods going in to help her. The thing is, DUH, I think, is that now the food she's eating is actually doing something other than run right through. She's not as hungry because it fills her up, it fills the need. So, we have been adjusting our brains to deal with her new body needs. And my eldest daughter(17) has always been slim, not skinny but no wasted anything on her, and has always eaten like a horse. For the first time she is noticing a nice little soft pad on her body! She is also eating less, naturally, and we had to get used to her new way of being also.

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I think this comes up with both children and adults. When I was diagnosed I certainly stopped eating for a few weeks. Just coincidentally, my partner was a psychologist who specializes in eating disorders. It was very hard on her to watch me develop these bad eating habits, but at the same time, one thing was clear: Getting into a power struggle over food only made things worse.

Personally, the biggest challenge for me with celiac disease has been developing a healthy relationship with food. I think it's easy to overlook the obvious truth that when you have celiac disease, food can become your enemy. It's not difficult to feel resentful about the diet and if you're daughter is like me, she might sometimes have days where she figures "If I can't eat what I want, then I won't eat anything at all." And sometimes eating is just plain scary---you have to trust the food labels, cooks, etc. and it's so easy for something to go wrong.

So for me and the patients I treat who have celiac disease, when problems with not eating come up it often has to do with needing to feel in control of a bad situation. Everyone here knows that sticking to the diet is hard work and even when you're completely on top of it, you can still get exposed. One way that people react to feeling hopeless about or scared of food is to simply not eat. What seems to work best for me is setting up an entire week of gluten-free meals---I make sure that every meal I'll have that week is safe, easy, and tasty. By the end of that week, I feel more confident that I can control the food I eat.

I hope that's helpful...

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Reading this makes me feel way better! My little girl (10 yrs old) was just released from the hospital & newly diagnosed with Celiac Disease. She won't hardly eat anything. I don't know if she's afraid to eat or just not hungry. She's extremely picky. Refuses to eat fruits & veggies. I'm trying to find gluten free foods that taste as good as before. Worried about birthday parties, sleep overs, & going out to eat. 

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Like Marcindy3 I feel relieved to read this topic, and grateful for the wisdom, especially about not making food a battle. My son has his endo tomorrow but is so unwell he barely eats and when he does he throws it up pretty quickly. His weight has plummted, his BMI is now 12 and he skin and bone. He faints from exhaustion and spends most of his days sleeping or lying on his bed. He is afraid to eat, yet I have been making him eat gluten until his endo tomorrow. He is very enthusiastic about going gluten free and feeling better, but given how poor his appetite has always been it will be a non stop job for me to tempt him to eat.  

 

I'll work on not making it a battle. 

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8 hours ago, Midwitch said:

Like Marcindy3 I feel relieved to read this topic, and grateful for the wisdom, especially about not making food a battle. My son has his endo tomorrow but is so unwell he barely eats and when he does he throws it up pretty quickly. His weight has plummted, his BMI is now 12 and he skin and bone. He faints from exhaustion and spends most of his days sleeping or lying on his bed. He is afraid to eat, yet I have been making him eat gluten until his endo tomorrow. He is very enthusiastic about going gluten free and feeling better, but given how poor his appetite has always been it will be a non stop job for me to tempt him to eat.  

 

I'll work on not making it a battle. 

You might be pleasantly surprised. Once your son goes gluten free- he may also have an appetite and be hungry all the time. Hope he gets well quickly! 

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