Daughter Just Diagnosed - What Next?

[CeliacMom]

My 2 1/2 yr old was just diagnosed with celiac disease, after having no "symptoms" but not gaining weight for many, many months. My husband and I have lots of questions and the pediatric GI basically gave us the diagnosis and dismissed our questions with a quick "look on the web".

We would really like to sit down with someone who is knowledgable about celiac disease and who could patiently answer our many questions including:

1. How do we explain to our daughter that she can't have a particular food that she loves?

2. How do we deal with the issues with our 6 year old? (i.e., how it will affect her)

3. Should we all be tested? (I took the blood test which was negative, tho I was told I had it as a child and "outgrew it")

4. What happens if she is given something containing gluten inadvertently, since she had no symptoms other than not gaining weight? how will we know, and how will it affect her?

and many more...

I am interested to know if anyone recommends meeting with a regular dietician, another pediatric GI, (a shrink?). Any ideas and suggestions would be greatly appreciated. (We are in NYC). Thanks!

[tarnalberry]

1. How do we explain to our daughter that she can't have a particular food that she loves?

2. How do we deal with the issues with our 6 year old?  (i.e., how it will affect her)

3. Should we all be tested? (I took the blood test which was negative, tho I was told I had it as a child and "outgrew it")

4. What happens if she is given something containing gluten inadvertently, since she had no symptoms other than not gaining weight?  how will we know, and how will it affect her?

<{POST_SNAPBACK}>

Welcome to the board!

I don't have kids, so I can't help on that first question, but I'm sure that others can.

As for the other kid, it depends on how gluten-free you're taking the whole household. It'll take some time, but it can be just another part of their lives.

Yep - everyone should be tested, and you can't really outgrow it.

She may develop sypmtoms after being gluten-free for a time, even if subtle ones, but it might be hard to tell. Over time, however, it may negatively affect her health, and it may just be very difficult to tell when it happens.

[lovegrov]

I'd look for a perdiatric GI who knows celiac. He or she is the most likely to understand. Also, Columbia University has some world-renowned celiac experts. The top person there is Dr. Green, I believe.

Nutritionists generally seem to know little about celiac.

I wouldn't suddenly take her to a shrink. It might be rough for a while, but children are amazingly resilent. In most families, the parents have a tougher time than the children.

EVERY first-degree relative should be tested, but if you were diagnosed with celiac as a child, then it's pretty obvious where it came from. You never outgrow celiac. You might be in a type of remission, but could still be causing damage. Anybody who's diagnosed with celiac should go gluten-free for life.

richard

[Guest nini]

My daughter was dx at 3... she's adjusted pretty well, but I'm also gluten-free with her as I was dx several months before she was.

I'm sorry, but if you were dx with celiac as a child, you are always celiac... like the others said, you may be in a kind of remission, but it's still doing silent damage. Or, you may have symptoms that you are just not recognizing as celiac because you were only ever told about the digestive symptoms.

We've been gluten-free a little over 2 years now and I've found that most Dr.s know very little about Celiac. The most informed people you are going to find are the ones on this site!

With my daughter I didn't explain to her that she couldn't have something she loved, I instead focused on what she COULD have. And you will find that a lot of your daughters fave foods are easily converted to gluten-free... there are so many companies making great gluten-free products now, and again, this site is an excellent resource

I DID have to make it clear to her NOT to eat anything unless mommy or daddy have approved it first. SO if a well meaning relative offers a treat, she knows to ask me first. If I don't know, or it's not safe, I have a supply of gluten-free treats that are safe and I'll trade out with her and she can let daddy have the gluten snack!

[mommida]

Keep gluten free snacks on hand to trade for every forbidden food she gets offered. If possible, let her decide which gluten free snack she would like instead. My daughter was diagnosed at 17 months, she is 2 1/2 now. Read food labels out loud to her, since this will be a life long habit for her.

Laura

[Jnkmnky]

1. How do we explain to our daughter that she can't have a particular food that she loves? Remind her that she has Celiac Disease, that she'll get sick, and that she can have other foods now. In our house, the only celiac is our youngest. We did not all join in on the gluten free diet. The foods that were gluten free were his exclusively. This made him feel special. We made a big deal about trips to HIS store for HIS food so that he felt a sense of pride and control over his diet. At home, he had his own shelves in his own pantry. We bought a cabinet from Ikea for his food because we didn't have enough space back then. We labeled all of his food, his peanut butter, his jelly, his mayo, his cream cheese, etc... with a sharpie marker with his name and a happy face. No one could use his foods. This all felt very good to him I'm sure!

2. How do we deal with the issues with our 6 year old? (i.e., how it will affect her)

My oldest was 6 when my youngest was dx. It didn't bother him in the least. He was NOT allowed to eat his younger brother's food, though, because his younger brother couldn't taste test his food. This enforced how critical the Celiac kid's need to remain gluten free was to all the kids. I have a middle child, a girl. She was 4 when youngest was dx. All the rules applied to her the same way.

3. Should we all be tested? (I took the blood test which was negative, tho I was told I had it as a child and "outgrew it")Everyone should be tested. Maybe you had a sensitivity, but not actual Celiac. What test did they do back then to confirm? Testing is way better just in the past four years I've been doing this.

4. What happens if she is given something containing gluten inadvertently, since she had no symptoms other than not gaining weight? how will we know, and how will it affect her? It may not affect her so that you can see it, but people with Celiac run a higher risk of developing a whole host of nasty auto-immune diseases. If that isn't incentive enough to keep her 100% gluten free, I don't know what else I could say. My son has been glutened 2 times in four years. Once by dad!!! Bad dad. But this is the time to be careful, while you're learning. It may become your "life" for awhile as you become familiar with the diet. But never allow food in her that you're unsure about. It's not worth the risk. Your convictions will become her convictions. My son is so good about his diet. When he got a gumball out of a machine last year, I was looking on the paper in the machine for the ingredients list, and he was waiting for me to tell him if the stupid gumball was gluten free...well, there was no list! Usually there is... So I told him I couldn't see an ingredient list and he tossed it to his brother. Just like that, no problem. I never have a problem with him over this stuff...but he was the deadly kind of sick and I think he has a memory of it.

[Jnkmnky]

You might be interested in a book called Wheat free Worry free by Danna Korn. It's popular around her, though I haven't read it.

[robbiesmom]

Welcome to the site! I'm new also-my son Robbie (3) was diagnosed 2 weeks ago and we have been experimenting with gluten-free products. So far we have found some cookies he likes. and some crackers. We had pizza with rice/tapioca flour and it was very good. I am going to start making some bread and other baked goods to find a cheaper way of giving him some of the things toddlers tend to eat. The bread can be pricy.

Here are some things I know so far:

The only Cereal from the supermarket that is okay are fruity & cocoa pebbles, otherwise go to the health food store.

Our pediatrician who is Celiac had told us Rice Krispies, and Rice and Corn Chex were okay! Not so!

Most items with vinegar are okay if made in the US-when in doubt ask the manufacturer.

I was told Del Monte Ketchup and French's mustard are okay.

Frito Lay can be trusted-Robbie loves the Potato Stax-they are similar to Pringles

but are gluten-free-Fritos are also a good choice

As for Robbie asking about his foods he hasn't really at all. We gave him his own special lunchbox to carry his snacks for preschool in and he thinks its great! He loves M&M's! All are safe except the crispy ones. He also likes Smarties, Resee's Pieces and TRail Mix

As long as she is told why she needs to eat in a certain way she will grow up knowing what she can and cannot eat and be okay with it. Like I told my Husband, until he is 18, Robbie will have to eat what we tell him to eat after that we can't control it, he'll figure it out the first time he gets really sick!

As for genetics, I am getting tested and so is my Aunt-We think my Grandma had it and she died of Cancer of the stomach at age 78.

Good luck and if you need anything just post it and we will respond-I received 15 responses in 2 days!

Speaking of questions-has anyone check on the Great Values brand ketchup and mustard and on Sam's choice sodas with Caramel coloring-also the syrup-thanks-I haven't received a response yet from Wal-mart on this.-Sara

[Merika]

My son went on the gluten-free diet when he was 2 yrs old, a month or two after I was diagnosed and went gluten-free. My mom is also gluten-free and celiac. Kids adapt very fast, and pickup exactly what you are saying and thinking ;-)

I've always been matter-of-fact about it. If you can find a symptom she has and doesn't like and mentally tie it to gluten for her, it's simple to explain. For my ds's soy allergy, I told him that soy makes his skin itchy and the clothes tags scratchy. He hates that, and it made sense to him to avoid it (it's also true). Lack of weight gain is pretty esoteric to kids, so hunt around and see if there's anything else, maybe lack of energy?

Last winter (age 3) my ds began "reading" the labels with me at the grocery store and at home too. It became very important to him to check if something was gluten free. He's just copying my behavior - I'm always reading labels (happily, lalalala), and he does too. It is behavior that will serve him well in the future (especially once he learns to read ). But he does know to ask.

I don't have other kids, so no ideas there for you....

There are lots of yummy gluten-free things to eat out there. Best wishes,

Merika

[CeliacMom]

Thanks to everyone for all the good advice and support.

I did find some great gluten-free foods at Whole Foods; still overwhelmed by the ingredients in food not labelled gluten free, but I have been reading the lists of safe and unsafe ingredients and I'm sure in time I'll know it well.

Has anyone seen any of the 3 ped GI's at Green's Columbia center? I'd like to talk to one of them, but not sure who. Thx.

Nina

[Jnkmnky]

Open Original Shared Link

Open Original Shared Link

Here are two great sites with great foods. We're a fan of all kinnikinnick products, especially the white tapioca bread, chocolate donuts, pizza crusts, bages...

Chebe is very good. Look around here for all that people do with their chebe. It's great.

[lbsteenwyk]

My daughter started the gluten-free diet at 26 months. She is now 3 1/2. I didn't even try to explain it to her until she was 2 1/2, because I didn't feel she was ready to understand. At 2 1/2 I started saying things like: Some foods have gluten in them and it makes your tummy hurt. I also started talking about her foods being "special." I think it is best to give a very simple explanation to a child at this age. As adults we tend to feel that we must explain what we do, but children really don't question things as much at this age. If you say gluten will harm her, she will believe you. Just keep it very simple, be matter of fact about it when she can't have something and try to provide a substitute. We certainly didn't flaunt gluten containing foods in front of her, but as she got older she began to understand and accept that sometimes her food is different from ours. I can honestly say we have never had a meltdown because she wanted a food she couldn't have. Last night she saw some regular cookies in the cupboard. The first thing she said was "do those have gluten?" When I said yes, that was the end of it. We found another snack and she never asked about the cookies again.

Be thankful that your child has been diagnosed at this young age. The gluten free diet will be second nature to her. I'm guessing this transition gets much harder as kids get older!

This diet may seem overwhelming at first, but it does get much easier. You will get a lot of valuable information from this site. Welcome, and don't hesitate to ask questions as you have them.

[scaredparent]

My son was diagnosed at age 20 mo and I agree with every one else kids adapt fast. My son still likes to have cookies and I make my own. We live about 3 hrs from a health food store. So we don't have acess to any gluten-free food. I order flour once every other month and I make every thing from scratch. I have 5 children and this disease can affect everyone in the family. My advice is teach your other children what he can and can't have so that they can also help. Make them feel important, kids always like to have some control. It makes my kids proud that they can help keep their brother safe by telling someone that their brother can't have something. When we were teaching my son what he can and cant have we went to Walmart and bought a 150 piece food set and would quiz the kids. They have things like bread, hamburger helper, fresh veggies and fresh fruits. This was a great tool to help learn. This is something that your child is going to have to deal with for the rest of her life so teach her that she is special and how to cope with the differences in life. We are right now in the process of dx my 8 year old and she will have more trouble dealing with it than my 2 yr old is because she is used to eating glutten. My son at the age of 2 already knows when he is in to something that he can't have like bread. I caught my son the other day sitting under his bed with a glutten cookie. He knew he couldn't have it so he went a hid. All I said was "mommy has special cookies for you and your consiqences are going to be dh and he knew what I ment' Later he had dh and and he got blisters on his bottom with in 10 min and all I said was that is what happens when you get into bad food. About 2 days later he I was in the kitchen and he climbed on the counter and he pointed at the counter and patted his tummy and said no. He knew. The reason I told that story was because accidents will happen but use them to teach. Take one day at a time and enjoy your children they are all special. Good Luck

[ryebaby0]

I think it will be easier if you have a very positive attitude (which is hard, at the beginning). Try to focus on what she can eat. Explain to the 6yr. old that you are in this together, as a family, so her sister can be healthy. A team effort! Stress to caregivers/family that food must be checked by you first. (This will cause endless grief with non-believers. Ignore them!)

We shop at www.missrobens.com, where everything is clearly labelled and kid-friendly. I recommend Robyn Ryberg's "The Gluten Free Kitchen" as a newbie-friendly cookbook, also the Incredible Edible Gluten Free Food for Kids cookbook by Sheri Sanderson. (Save the gluten-free gourmet books for later!)

Eat simply at first, until you get the hang of it. At her age, she doesn't need a lot (my son was dx at 10, my husband at 40!) so that helps.

After being gluten free, many formerly "silent" celiacs find they do, in fact, react to gluten with diarrhea, stomach aches, cramps, or headaches. This might be true of your daughter, or she might stay "silent" and you just won't know. Try your best --and hope.

Go slow. Ask us lots of questions, we like to think we are experts!

Joanna

mom/wife to celiacs, a mostly gluten-free household since 12/03