Need Advice For 7 Year Old Daughter With Celiac

[Mom of celiac]

My 7 year old daughter was diagnosed with celiac disease in August. She does great on the diet when I can get her to actually eat. Our problem is more emotional. There is lots of information out there on food, but I'm not having a lot of luck on the emotional support I need to offer for her. Even after 4 months, she stills tires very easily and doesnt want to go anywhere or be involved in any extra curricular activities. She cries at school, even though she has wonderful teachers and lots of friends who support her. She constantly asks me if she is going to get sick, several times a day. I just wish I could get her past the emotional issues she is having and Im not sure if this is normal and will pass, or if we need to see a psychologist, even though we saw one before she was diagnosed and it was a total waste of time and a lot of money.

Do any other parents out there have any advice ? I would greatly appreciate it.

[mart]

Sorry to hear your daughter is having to deal with this. My 7 year old son was also diagnosed in August. Despite being gluten free for almost 4 months, he still complains of symptoms - one of them being very tired. I never really understood why he was such a home body before. He never liked going anywhere. He just wanted to lay on the couch. He, too, gives me a hard time about eating. Hopefully this will all improve when he heals (the doctor said 6 months to a year).

My son doesn't talk about fear of getting sick (which kind of surprises me). I've been very careful about what I've told him. I never say "Celiac Disease," I only say "Celiac, or Allergy to Gluten" in front of him. I figure the "disease" part would probably scare him to death. But I hate how his GI talks so freely about his condition in front of him. Really what the doctors tell you upon diagnosis could be very frightening for anyone to hear. Also, my son spent most of the summer in the hospital before they could figure out what was wrong with him. Being in the hospital and having tests could make you think you could be sick or dying. Could it be that your daughter's heard something like this from the doctor or perhaps she overheard one of your conversations? Also, she is at that age where children start to fear that they or their parents are going to die. This is pretty normal.

Poor baby. She needs a lot of reassurance. At this stage, I would simply tell her that she is completely normal but that she has a very serious allergy to gluten which will poison her. This alone is scary enough (my son will ask me if his new toys or clothes are gluten free). Your daughter needs to be taught that staying away from gluten is serious business, but it's best if you told her that she WILL live a long and normal life with this condition.

Question - did she always have a fear of getting sick, or did this all start after the diagnosis?

[armoorefam]

My celiac daughter is now 15. We believe that she has had celiac since infancy, but she was not diagnosed until she was 10 years old. She has been gluten free for 5 years (not counting accidental ingestions).

She still battles emotional issues from time to time. I have found that if she skips taking sublingual B's she will begin to feel depressed, focused on her health, tired, and have complaints related to tingling legs and arms. My husband, too, experiences the same things. They will find their energy and emotional state bounce back with the B's, sometimes dramatically so within 10 minutes. The difficulty in staying up on their B vitamins seems to be linked to the celiac, yet it stays even when no gluten slips in for a long period of time. I highly suggest BTotal Sublingual made by Nutraceutical Solutions, Inc. because the fruity flavor is pleasant. Sublinguals will require letting the liquid sit under the tongue for 15 seconds to 1 minute. Flavor can be essential with a 7 year old in getting that to happen. I just cannot over emphasize how essential the B's (especially B12) is for the emotional side of celiac.

Early in a diagnosis it is hard because there is a period of family and friends becoming informed and coming to accept that celiac is an accurate diagnosis. After many months to many years, friends and family no longer need to have it all explained and the focus on celiac issues can subside. This is a big help in getting a young girl's mind off of her being celiac. That first year for my daughter was pretty tough becuase Grandma and Grandpa resisted the dagnosis and literally snuck gluten in to disprove the diagnosis. That was a real challenge for all of us. Now after 5 years her Sunday School teachers all know how to accomodate her needs without fanfare. Friend's families know not to serve wheat party foods without a heads-up that Melody will need to bring a substitute. It just gets so much easier with time.

Some physical issues just don't go away even gluten free. John and Melody both have thyroid damage that will not heal completely. Though the cold doesn't seem to bother John, Melody is particularly susceptible to getting chilled and feeling cold. She is still small for her age making her mass small enough that that underactive thyroid is a real problem for her. Keeping that in consideration has helped her energy level. When she can stay warm enough she feels better emotionally and physically. When we do outdoor activities, we make sure that she is warm. Indoors, she has comfy warm lounging clothes, warm covers, and her own adjustable heat source in her room. It is more than physical comfort. There is an emotional lift when you feel cozy and know that your family loves you enough to keep you warm. If your daughter is like ours in regard to body temperature, go for several fun, 'house socks' so that she can have variety. Special bedding is fun. Have plenty of mittens so that missplaced ones will not mean that she has to go without. Let her pick out winter scarves, hats, etc that she can enjoy and that fit her personality. If your daughetr has to wait for a school bus, try to get a way for her to get there without a long wait in the cold. Once cold, it takes poor Melody forever to get back up to temp.

Tammy Moore

[Jnkmnky]

My 7 year old daughter was diagnosed with celiac disease in August. She does great on the diet when I can get her to actually eat. Our problem is more emotional. There is lots of information out there on food, but I'm not having a lot of luck on the emotional support I need to offer for her. Even after 4 months, she stills tires very easily and doesnt want to go anywhere or be involved in any extra curricular activities. She cries at school, even though she has wonderful teachers and lots of friends who support her. She constantly asks me if she is going to get sick, several times a day. I just wish I could get her past the emotional issues she is having and Im not sure if this is normal and will pass, or if we need to see a psychologist, even though we saw one before she was diagnosed and it was a total waste of time and a lot of money.

Do any other parents out there have any advice ? I would greatly appreciate it.

Well, extracurricular activities don't need to be physical. My daughter (8) takes art classes. My son (7) just finished up an acting class. My Celiac kid never had emotional issues. I'm not sure what they would center around for an extended period of time. Kids usually "move on" quickly because their attention spans are not as developed as an adult's. Is she academically suited to be in the grade she's currently in? I held my Celiac son back a year because I felt he was developmentally delayed a bit due to the leaky gut/ Peptide issues that went undxed for the first three years. Are you finding foods that replace her old favorites? Does she have cookies? We just got the chocolate chip cookies from Kinnikinnick and they are superb. One thing I never let be an issue for my Celiac was his food limitations. It was all sunshine and happiness when it came time to make a meal. Is there an ongoing dialogue of "I miss my old food."? That could perpetuate negative feelings towards the new diet. Are there any other issues your daughter faced prior to going gluten free? It seems like a very minor part of a young child's life.... food. You know, not as significant as an adult going gluten free. ..... Crimping dinner dates, social gatherings, doing all that new fangled cooking... Kids usually transition rather well. Especially with all the great new foods available. Heck, 4+ years ago when we started this diet there was LITTLE in the way of tasty gluten free food choices! ~and we had to walk 10 miles uphill in a snowstorm to get the stuff..

[ryebaby0]

Your little girl sounds very normal to me, after what she's been through. It hasn't been very long. I can't tell you what to do, only what worked for us (my son was dx at 10, after becoming critically ill and hospitalized for 2 months.)

I made him index cards of okay foods and punched a hole in them, and then put them on a ring for his backpack. His teachers also had a list of mainstream foods he could have. He had a snack box kept in his teacher's desk (to assuage his fears of tampering) and I spoke to his lunch aides (he carries) while he watched. This was all to reassure him that everyone was adequately educated. We taught him to read labels, and keep a binder where he can look things up himself. Knowledge is power, and it must be terrifying for children to suddenly feel like the world is poisonous. Your daughter is very young, but you set the example and she'll learn from you.

And then we let it go. We do not revolve around food. (My husband was subsequently dx with celiac as well) We try very hard to decide what we want to do, and then we figure out how to work the food angle. Maybe your daughter needs you to take a class with her, or start with some arts-and-crafts kit (or whatever she might find appealing), to give her more identity than just "Celiac Child" coupled with the reassurance of your company. I taught my son to cook, for example. He first walked down our driveway, then our street, then around the block with me EVERY day to rebuild his wasted muscle mass. Physical activity is always a stress reliever, too, and it gave us a chance to get out a little. But it took probably 15 months for him to recover physically. (But he was extremely sick,too) Invite girls she knows over for a tea party (serve gluten-free stuff but don't tell anyone -- we do this all the time) and dress-up party, you know -- have some fun...

I agree that a B-heavy vitamin would perhaps help, as would a zinc and iron boost. Sorry this is so long! You are a good mom to look for answers for her.

Joanna

[Mom of celiac]

Your little girl sounds very normal to me, after what she's been through. It hasn't been very long. I can't tell you what to do, only what worked for us (my son was dx at 10, after becoming critically ill and hospitalized for 2 months.)

I made him index cards of okay foods and punched a hole in them, and then put them on a ring for his backpack. His teachers also had a list of mainstream foods he could have. He had a snack box kept in his teacher's desk (to assuage his fears of tampering) and I spoke to his lunch aides (he carries) while he watched. This was all to reassure him that everyone was adequately educated. We taught him to read labels, and keep a binder where he can look things up himself. Knowledge is power, and it must be terrifying for children to suddenly feel like the world is poisonous. Your daughter is very young, but you set the example and she'll learn from you.

And then we let it go. We do not revolve around food. (My husband was subsequently dx with celiac as well) We try very hard to decide what we want to do, and then we figure out how to work the food angle. Maybe your daughter needs you to take a class with her, or start with some arts-and-crafts kit (or whatever she might find appealing), to give her more identity than just "Celiac Child" coupled with the reassurance of your company. I taught my son to cook, for example. He first walked down our driveway, then our street, then around the block with me EVERY day to rebuild his wasted muscle mass. Physical activity is always a stress reliever, too, and it gave us a chance to get out a little. But it took probably 15 months for him to recover physically. (But he was extremely sick,too) Invite girls she knows over for a tea party (serve gluten-free stuff but don't tell anyone -- we do this all the time) and dress-up party, you know -- have some fun...

I agree that a B-heavy vitamin would perhaps help, as would a zinc and iron boost. Sorry this is so long! You are a good mom to look for answers for her.

Joanna

Thanks so much for all of the advice and help that was put out there. Its comforting to know that what my daughter is going through is "normal". No matter how much you read(and I read everything I can!) the mom in me wants to "fix it" and it cant really be "fixed". My daughter finally ate today after going 2 days with barely anything.

A couple people have posted about the B vitamins. Is there a certain kind, where can I get them, and how much do I give?

We have ordered a lot of food together, and she has some favorites, but we try very hard to eat the usual foods, but make them gluten free. A lot of times, we all eat gluten free now. My other daughter doesnt mind... well, most of the time!!!

Again, thanks for the support and help!

Pam

[tarnalberry]

My 7 year old daughter was diagnosed with celiac disease in August. She does great on the diet when I can get her to actually eat. Our problem is more emotional. There is lots of information out there on food, but I'm not having a lot of luck on the emotional support I need to offer for her. Even after 4 months, she stills tires very easily and doesnt want to go anywhere or be involved in any extra curricular activities. She cries at school, even though she has wonderful teachers and lots of friends who support her. She constantly asks me if she is going to get sick, several times a day. I just wish I could get her past the emotional issues she is having and Im not sure if this is normal and will pass, or if we need to see a psychologist, even though we saw one before she was diagnosed and it was a total waste of time and a lot of money.

Do any other parents out there have any advice ? I would greatly appreciate it.

With the length of time this is continuing, I would give a second consideration to a psychologist - but like any other professional, they can be hit or miss, and you have to find one who works well for your daughter.

Perhaps talking to her, and helping her understand and take control of her own coping strategies would help. Making sure she has all the information - both about the condition, and about the food choices she has - may help her feel more in control over whether or not she gets sick. Letting her pass on some - but not all - of the social activities is also actually a good thing, as it can get wearing, ever for the most spirited of us, to constantly turn down things we want that everyone else can have.

The fact that she's still tired is somewhat troubling, and I'd make sure that she's getting all the vitamins and minerals she needs - along with plenty of exercise.

Perhaps finding a local support group or other kids her age with the same restrictions would help her?