4 Year Old Just Diagnosed With Celiacs...lots Of Questions

[pitnlala]

First of all, thank you ahead of time to anyone that responds. I have been reading threads on this forum for a few hours now, and I am coming across alot of practical issues that I had not thought of in terms of dealing with this.

My 4 year old (Kayla) has always been small, and the last checkup showed she was in the bottom 5% height and weight for her age. This led the DR to run blood tests and an x-ray. Not all the genetic tests are back yet, but we were told she does have celiacs.

We have been instructed to set an appointment with an area specialist who will do some more lab work on her, including some type of intestinal scope. How invasive is this procedure? Is it 100% necessary? Also, we were told not to change her diet until all the lab work has been done, otherwise the results might not show the true extent of the problem or whatever.

Kayla does not seem to suffer from many of the side effects of Celiacs that I have seen discussed here. Rarely if any constipation. No sleeping issues, no sickness after eating meals loaded with gluten. Nevertheless, I hate to give my daughter food that can be harming her for another 3 weeks- when the lab work is done.

Here are some issues I have seen raised in some threads that I dont understand. Any help is appreciated.

I see talk of cross contamination. I understand the concept fine- but is it really necessary to use seperate utencils, pans, etc. I even saw a post about contaminating the oven!? Also talk of other kids contaminating her food by touching it after eating their own gluten containg food?

Ttg levels are discussed here, and I have yet to see a concise definition. Some sort of baseline I am assuming of thier gluten levels?

Arts and crafts have gluten I see. Can I find a list somewhere of art suppplies to avoid?

How do you tell a 4 year old that many of her favorite foods are off limits now?

Sorry for the long read. Disregard as needed, but any info will help, as I am absorbing as much info as possible in the hours since we found out.

Micah

[AndreaB]

We have been instructed to set an appointment with an area specialist who will do some more lab work on her, including some type of intestinal scope. How invasive is this procedure? Is it 100% necessary? Also, we were told not to change her diet until all the lab work has been done, otherwise the results might not show the true extent of the problem or whatever.

The procedure would be the biopsy. You'll find a lot of varied opinions on that. It is the only recognized way to diagnose celiac (by the majority). Some will take positive results from the diet change as proof. Whether you get the scope depends on whether you want an official diagnosis. Will an official diagnosis make it easier to stick with the diet, etc.

Kayla does not seem to suffer from many of the side effects of Celiacs that I have seen discussed here. Rarely if any constipation. No sleeping issues, no sickness after eating meals loaded with gluten. Nevertheless, I hate to give my daughter food that can be harming her for another 3 weeks- when the lab work is done.

There could be things that aren't readily recognizable as being a problem. Is she moody, easily angered, etc. It could affect her in other ways.

I see talk of cross contamination. I understand the concept fine- but is it really necessary to use seperate utencils, pans, etc. I even saw a post about contaminating the oven!? Also talk of other kids contaminating her food by touching it after eating their own gluten containg food?

I haven't heard about the oven. I wouldn't think a regular oven would be a problem unless you put gluten and gluten free bread right on the racks. You would need to use separate utensils if they are wooden or plastic. Stainless steel wouldn't be a problem. Make sure you don't double dip in nut butters, fruit spread, mayo, mustard etc. Stainless steel pans are fine, non stick are fine if they aren't scratched, but it seems most of them get scratched pretty easy. She can also get glutened by little friends who have handled their own food and then touched hers.

Arts and crafts have gluten I see. Can I find a list somewhere of art suppplies to avoid?

I'm not sure about this one....sorry.

How do you tell a 4 year old that many of her favorite foods are off limits now?

My children are home with me so I didn't have to worry about that. It's a matter of finding other favorites. What are some things she likes.....many can jump in with suitable substitutes.

Sorry for the long read. Disregard as needed, but any info will help, as I am absorbing as much info as possible in the hours since we found out.

Don't worry about a long post. This whole thing is mind boggling to start out with. Give yourself time to acclimate and know that mistakes will happen (more than likely). We are here for support and questions. There are a lot of knowledgable people on this board.

Welcome

[pitnlala]

The procedure would be the biopsy. You'll find a lot of varied opinions on that. It is the only recognized way to diagnose celiac (by the majority). Some will take positive results from the diet change as proof. Whether you get the scope depends on whether you want an official diagnosis. Will an official diagnosis make it easier to stick with the diet, etc.

There could be things that aren't readily recognizable as being a problem. Is she moody, easily angered, etc. It could affect her in other ways.

I haven't heard about the oven. I wouldn't think a regular oven would be a problem unless you put gluten and gluten free bread right on the racks. You would need to use separate utensils if they are wooden or plastic. Stainless steel wouldn't be a problem. Make sure you don't double dip in nut butters, fruit spread, mayo, mustard etc. Stainless steel pans are fine, non stick are fine if they aren't scratched, but it seems most of them get scratched pretty easy. She can also get glutened by little friends who have handled their own food and then touched hers.

I'm not sure about this one....sorry.

My children are home with me so I didn't have to worry about that. It's a matter of finding other favorites. What are some things she likes.....many can jump in with suitable substitutes.

Don't worry about a long post. This whole thing is mind boggling to start out with. Give yourself time to acclimate and know that mistakes will happen (more than likely). We are here for support and questions. There are a lot of knowledgable people on this board.

Welcome

Thanks for this first response Andrea. For a Father who wants nothing but to protect his daughter, this is a bit overwhelming right now. It just seems odd that we would go from her having a hearty dose of glutens every day, to being paranoid about another childs hands touching hers when they eat, or sitting at seperate tables to avoid cross contamination.

To make it more confusing, the wife spoke with the Dr, so I dont know what test came back positeive, or what the severity is. And they are closed to Monday. So I have another 2 days to obsess about this and come loaded with questions when I call him.

But thank you for the welcome.

Micah

[AndreaB]

Keep us posted if you will.

Love your name.....my oldest son is named Micah.

[Annie/NM]

My 4 year old was diagnosed 6 months ago and has been so awesome. I was diagnosed 2 months ago and not as positive as him. He tells people, I can't have that it has gluten when he is offered things he knows he can't have. I make him treats they freeze at is pre=school so he can have something gluten-free when the other kids have cupcakes. If you just explain to them at their level it is amazing how much they can understand. It has really helped that I have it too so I just say "we can't eat that." But I always try to have a similar gluten-free alternative available for us so we don't feel bad! Good luck to you! We are getting much better now 6 months into this!

[rez]

I highly suggest the biopsy. It's not invasive at all and it's best to confirm what's going on inside. Also, I would highly recommend Celiac Disease, A Hidden Epidemic, by Dr. Peter Green. It's the best book out there. Read it and educate yourself as you are your childs number one advocate. I would not start the diet until you find out what blood test was positive, finish the lab work, and under-go the biopsy. Once you go down the gluten free road, all testing is not reliable any more, and speaking from experience, it's not easy to turn back. Make sure your doctor ran the tTG and EMA. Those are the most specific to Celiac.

[pitnlala]

Thank you for your help everyone. Her biopsy is scheduled for the 22nd. In the mean time I am understanding the the rest of our family needs to be tested as well.

I have been directed to alot of material that is really helping, so I appreciate this. Interestingly enough, there was a good sized article in The Denver Post this week about Celiacs. I think it is still available online if anoyne wants to read it. I am finding more and more people through friends and family who are Celiacs, and they have been sharing everything from books to shopping lists.

Thank you again, and I'll be around to share, and get ideas.

Micah

[Juliet]

One of the ways we deal with our son understanding that he has to eat gluten free is to actually take him shopping, "read" labels (he's only 3 1/2 now so he's not reading yet) and discuss what has gluten and what doesn't. If there's something that looks particularly good that has gluten, I tell him that he and I will try to make it gluten free (yes, I have him in the kitchen with me already - he'll have to know how to cook when he gets older since he can't rely on Top Ramen in college, so it's good to get him started and have fun with it). I also will point out something that has gluten and explain he can't have it, then point out something he really likes that he can have and tell him that he can have this "yummy gluten free" food. He's great - he never tries to eat other people's food now, and it's been a pretty long time since he had gluten so he doesn't even remember first hand that it makes him sick. He just understands it's what he has to do.

Once you get used to it, you will be able to find gluten free versions or acceptable substitutions of most of the foods she used to be able to eat. There's even frozen gluten free chicken nuggets, tater tots, etc. But fast food, even french fries, are mostly out because of cross contamination (you have to worry about shared oil, what's in the oil, etc.)

Also, soon after he was diagnosed, we cleaned the ENTIRE kitchen. We pulled out everything from the drawings, wiped them down inside, all the counters, etc., so that there were no leftover crumbs. You'd be amazed at how much gluten you have everywhere even when you try to be clean - crumbs hide all over the place. (This was made evident when we recently stayed at a friend's house for a couple of days. She was very neat, but I found crumbs all over the place in her drawers, counters, stove, etc. I had to clean everything before I cooked stuff for him.) We also cleaned out the oven, replaced a lot of utensils, bought a new pasta strainer and flour sifter (those will never get clean enough), got rid of all the scratched pans, bought a breadmaker (investment well worth the money - and get a new one if you have one already for the gluten free bread), etc. We decided to make the house gluten free since it was just easier to not deal with the cross contamination. If we go out, we'll eat gluten if we choose, and we'll sometimes bring in take out, but we only use the paper plates for take out so nothing stays in the kitchen.

Also, make sure to check your children's medicine and vitamins. I made the mistake about the medicine (hand out from his doctor - forgot to check) about 8 months ago and paid for it by his nasty behavior.

It's definitely overwhelming, stressful, and scary at first. And you will always have to be diligent. But sooner than you think, you'll find you're more of an expert than most of the doctors you'll encounter, and the added work will become routine. I get asked all the time how I'm dealing with it, and honestly I barely recognize anymore that I have to do more than most. It's only what I have to do, not that I have to do more. You will adjust, I promise.

[momagn5]

Are you in Colorado!?

Welcome to the world of "I can't have swheats."

My daughter just turned 5--celiac since 2. She still doesn't understand why she can't have what her friends at day care are having, exactly, but she's at the stage now that she responds with: "I can't have it cause it has swheat, Mommy?"

I respond with the usual, "Yep," but add that we'd find something that she does like that is very close to what they eat. On days that the day care is having something we can't create comparably, she chooses what she wants for the day--usually Amy's mac/chz or pizza.

The best foods we found are Tinyada noodles (Mrs. Leepers is ok, but we didn't have much luck cooking it at our altitude, plus it just seemed to salty or something--cook's error), Out of the Bread box fresh baked bread/goodies and crackers (Colorado Springs, also on-line); Ian's chicken nuggets, Chebe's cheesy bread/rolls; Pamela's Favorite Bread mix, cake mixes, etc. Our only stores for shopping for baked goods are Vitamin Cottage, Whole Foods, and Wild Oats. Very few other chain stores carry the baked necessities.

You'd mentioned the pots/pans. We trashed ours right away--they needed replacing any way. Our support group informed us that non-stick pans absorb the gluten when heated, trapping it as the pan cools, then releases it again when reheated--even after washing. There was also mention about plastic storage containers (we purchased new ones as we were in need of a new set anyway), and separate toasters (this is to avoid cross-contamination.

The first few months were heart-wrenching/frustrating. My 2 oldest--teens--literally broke down in tears in the middle of the grocery aisle as I kept reading labels and saying "nope" to every one of their favorite foods. I'm sure we looked the lot--all 3 of us in tears on the floor! I still cry when I go shopping because there are no special cartoon characters like "normal" food to make eating fun for kids! (I found Tinkyada fun shaped noodles one day and bawled!!!! My kids were laughing at me at this point.)

Good luck to you...Take some time to breath as you go through this life changing experience. Ask questions...lots of questions...

[pitnlala]

Thanks for the advise from those of you who have given advice on how to explain things like this to a toddler. On the flip side though, I think it may be harder for me to explain, simply b/c she doesnt get sick from eating gluten. No side effects so far other than she is pretty small...so maybe that is my angle when we talk.

And for those that asked, I do live in Colorado (Littleton).

Thanks again for all the advice from everyone...especially the advice on replacement foods and brand names. I have heard the Vitamin Cottage is better priced than Shole fFoods. True?

Micah

[RIMom]

My 4 year old was diagnosed in December. The name of the game is substitution and being prepared. She never got really ill either, so talking about it "making her sick" doesn't work for us either. We do talk about her body not liking it even if her tongue or mouth does. The biggest confirmation you are doing the right thing is how she will act/look almost immediately. My daughter never looked "sick", but almost immediately people started talking about her skin glowing, the transparent skin she always had (I just thought it was being irish) that made her eyes look tired, changed almost immediately. She seemed happier, even when I was stressed about what to feed her. We have not gone totally gluten free as a household ( I want her sister to eat whole grains), but she has her own special things her sister can't have either. For example she has a supply of Lara bars we keep in the car and in the house for unexpected treats, she loves them, and I don't give them to her sister. As a family we have shifted out treats toward icecream rather than baked items. Although we have baked a lot as well. The Gluten Free pantry pizza flour can be used to substitute for most wheat flour in recipies. We just increase the liquid a little (ie use xl eggs rather than large). We have successfully used it in brownies, cookies, muffins etc. Her school has been fantastic about it, we keep a bag of sealed ok treats for her (Lara bars, a few candy items etc) so if cupcakes arrive for a birthday, she is all set. We also often offer to provide snack for the class, so she can have it. Most schools at this point are used to dealing with allergies (be it nuts, bees, dairy, or celiac) and are great about handling it. I try hard to be thankful for the diagnosis, rather than being angry about it. Thankful she was diagnosed so young, thankful she never got really sick, thankful that we live in an urban area where it's easy to get gluten free foods, etc. Thankful that she didn't develop any of the diseases so many do before they realize they actually have celiac. I'm not a religious person at all, so that's not what I mean, I'm just trying to appreciate that although this is a big challenge, we are lucky she is a healthy happy kid just trying to figure out how to deal with this card she was dealt. My attitude toward it really affects her. Also talking about all the other people we know who are dealing with this challenge also helps. (we have several family and friends who have celiac too, which has been really helpful).

Also, it's a very personal decision, but we did not do the endoscopy. We felt between the serology test, family history and her immediate positive response to the diet (I couldn't continue to give her foods I knew were hurting her) that was enough confirmation for us. As our doctor said that is very strong confirmation that she has it. The test is not totally safe or un-invasive as many say, there are risks with any procedure. If you are someone who needs total confirmation, you may need to do the test, or may need to do an enterolab panel. Thats a really personal decision. Ask a lot of questions and do a lot of research.

Good luck.

Sarah