New At This

[chrissy2]

Hello I am a celiac mom. This is my first entry and I have never done anything like this before. My daughter was diagnosed with Celiac Disease about 1 year ago. The Dr.s sent me to a nutritionist that knew absolutely nothing about Celiac Disease. I have since read and tried my hardest to learn everything there is to know about the Disease. I have a question for all those mothers out there with children who have celiac disease. When Sadey (my daughter) was first diagnosed with blood work I immediately went gluten free. Then when we went to the specialist they told us she had to go back on gluten for 30 days and a biopsy would have to take place. This was done about 1 year ago. Now, since she went back on the gluten I struggle everyday for her to stop eating gluten. She is now having severe pains in her bones, back, ankles, even her arms at days. I have tried to get her to see the importance of going gluten free but she doesn't understand. She is 11 years old and I am struggling horribly with her. I need to find a doctor in Southern Michigan who can help me with some of these physical effects. Does anyone know of a really, really, good doctor that would know more than I do??????

[Mother of Jibril]

Welcome to the group! Even if you find a decent doctor, I think you'll find a LOT of helpful information here.

My kids are a lot younger (three-year-old daughter, eight-month-old son), but I understand the gluten battle My daughter has a very intense personality and she LOVES gluten. It's addictive. I just learned that she definitely has at least one gluten-sensitive gene (thanks to me), so after Halloween I'm going to lay down the law. No more gluten noodles, cookies, bread, etc... This is going to take some cooperation from her school and espeically my husband He's been really good about the changes in MY diet, but he caves when my daughter begs for those foods. Last night I had a cave-in moment too. I've been experimenting with giving her gluten-free lunches (as well as mostly gluten-free dinners and snacks) and I've noticed that she's less constipated, more calm, and doesn't ask for gluten-containing foods very much when she's not getting them on a regular basis. I bet things will get easier with your daughter if you're consistent about keeping gluten out of her diet.

Since you know for sure that your daughter has celiac disease, it's really, really important to get her off gluten. Otherwise, it will cause all kinds of health problems for her (not just in her intestines).

[msmini14]

Welcome to the board =)

I do not have any children, but I had a question. What kind of gluten food does she crave the most? brownies, cookis, pizza? Whatever she craves the most, make a lot of it and put it in the freezer. I do that for myself so when I crave bread like things all I have to do is pull it out of the freezer.

I made pumpkin corn muffins and pumpkin cookies last weekend and will do brownies next so I have chocolate at my disposal lol.

Like Mother of Jibril said, you must get her off of gluten. From what you have said she is in a lot of pain. Have you found a local support group? Explain to her what this is doing to her body. She is damging herself and it is only going to get worse until she is gluten-free.

It must be so hard at her age too, I couldnt imagine. Glad you found us here, everyone is very helpful =)

[ang1e0251]

Are there other older kids who could maybe mentor her? Maybe there is a group in your area where you could ask about her meeting an older child who she might respect, that has celiac. You know at her age kids often will listen more to other kids than their parents. OK... I was one of those.

I think the advice of having really yummy substitutes for glutenny foods always on hand is right on. May be the family needs to have gluten-free household for a period of time till she adjusts her tastes to safe foods. Future health issues like cancer, etc. really aren't much of threat or incentive to a kid; they think they are invinceble. But if there are no gluten foods available and she must choose her foods from gluten-free, she may just eventually cave. Really just making light of her begging will probably soon cure it as she sees she can no longer push your buttons. It's hard on a parent but part of the teaching she needs. You really love and care for her too much to give in to unhealthy foods.

Good luck to you. It will get easier. Teens and preteens are challenging but we just have to love them through it.

[dilettantesteph]

My celiac son is 11 now and was diagnosed at 10. It helps that he was in on it all along. He was throwing up constantly, stopped when he stopped eating gluten. Started again when he ate it again and stopped again when he stopped eating it again. I think that made it easy for him to see the connection. He was super into food and loved eating at buffets so it was really hard on him.

It helps to take him shopping and letting him pick out his own foods. I have been buying him every gluten free goody there is, donuts, cookies, candy. It makes it easier, but my former skinny boy is getting fat so I am going to have to change by strategy a bit. It helped with the transition though. It helps that we have some really good stores here. I also bake from mixes a lot. He gets a lot better food at home now than he did before he was sick when we could just go out.

Your daughter needs to make that connection herself that gluten makes her sick so that she will take responsibility for not eating it herself. With all the donut parties etc. at school there is no other way. Good luck. Stubborn kids are hard to deal with.

[happygirl]

Hi Chrissy,

Welcome to the board! I hope you'll find support and help here.

It may be helpful for her to meet other Celiacs in your area, particularly kids. Here are some national groups that have branches across the country.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

https://www.celiac.com/articles/563/1/ROCK-...roup/Page1.html

[ShayFL]

She is old enough to explain "osteoporosis" to her. Being Celiac (and continuing to eat gluten) means she is not absorbing her nutrition properly. She is likely lacking in calcium, magnesium and vitamin D. It is at her age that she can do the MOST or LEAST to save her bones. Those pains are NOT a good sign (as you well know). If she drinks soda too, the bone loss will be compounded. Soda contains LOTS of phosphorus that leaches calcium from the bones. There was a recent study showing that teenaged girls that drink sodas daily have osteopenia in their early 20's and signs of osteoporosis in their early 30's. Not good!

You need to educate her. Show her pictures of osteoporosis and explain that when you have it, a simple fall can break a hip (that may not heal). You might think that she is too young to even consider such a thing, but there was a poster in here recently that said she was 23 and just dx with osteoporosis.

Also let her know that other autoimmune diseases are associated with untreated Celiac (Hashimotos Thyroiditis, Type 1 Diabetes, MS, etc). She needs to be educated even if it doesnt sink in right away.

All you can do is give her ALL if the information on how not going gluten-free can affect her health. And then hope she decides on her own to be gluten-free. Allow NO gluten foods in your home. Explain to her that you are not being a loving parent if you allow her to eat "poison" in your home. Explain that you cannot control what she eats when she is away from you, but because you love her, your home will be gluten-free.

And as a sign of solidarity, be gluten-free yourself. I know it's hard, but imagine the impression you could make on her if your entire household went gluten-free. If she sees others making sacrifices, she might be more inclined to do so herself.

And like others have said, there is no real sacrifice of goodies because for every gluten goodie, there is a gluten-free alternative.

I really hope you can get her gluten-free soon. I would hate to see her suffer the consequences.

[Darn210]

Is she cheating at home? or only away? Do you have a mixed house? Do you cook two meals - one for her and one for everyone else?

A couple of months after my daughter was diagnosed, I met up with two friends that I hadn't seen in a while. The both have daughter's with Down syndrome who both have Celiac (people with DS are more likely to have celiac disease). I thought that they have been at it for a couple of years, they'll be able to teach me alot. I was surprised at how much I knew that they didn't. It seemed like they were both cooking dual meals and buying a lot of prepackaged items. They couldn't believe that my whole family liked the gluten-free pasta. I recommended they try Tinkyada (which is not what they were using). On the other hand, I couldn't believe that they went to the trouble of making two different meals all the time.

We have a mixed household where there is a cabinet of gluten items (used mostly by my son and my husband). However, ALL of our cooked meals are gluten free. ALL of my baking is gluten free. The cabinet with gluten items contain NONE of her old favourites. In fact, in the beginning, she even had a say in what went in there. She should not have to watch someone eat something she can't have (but still wants) in her own home. For example, she never (and I mean never with attitude and a grimace on her face ) wanted frosted mini-wheats before her diagnoses so it was OK to have in the house after . . . that's one of the cereals in the cabinet. She was OK with having oreos in there because she had her comparable K-toos. You get the idea.

As far as the gluten free store bought goodies . . . besides being expensive as all get out, some aren't that great. I tell people, home-made goodies from a mix or from scratch are better than store-bought pre-made . . . whether it's gluten free or not. Almost all of our goodies are home-made and they rival any gluten goodie out there.

I don't know if you are doing much baking but if not, I would start and include your daughter. My thinking is that they (our Celiac/gluten sensitive children) are going to need to cook for themselves sooner or later and they may as well get started.

Now, a couple more questions to help us figure out the right strategy for your daughter . . . Do you think it's peer related? As in she wants to be able to eat the same food as her friends when she's with them? We can tell you/help you find out what stuff she can order at the fast food places or how to pack a "normal" looking school lunch. Do you think she is missing a particular food? We can help you with the best tasting brands or best recipes.

We've got lots of people here to offer their advice . . . welcome to the forum!!