Daughter Diagnosed With celiac disease And Diabetic

[xjrosie]

Hi all,

I'm new here. Kind of been lurking around for information here and decided to join.

Anyway, my daughter has been diagnosed with Celiac disease as of 12/14/11. She was diagnosed Type 1 diabetic on 6/20/09. She's turning 10 tomorrow. She is one of the smallest kids in her grade, despite being in the 80% percentile for weight/height most of her life. Since being T1 she has started to gain weight and height, and I'm sure she'll thrive even more now. Her intelligence/brain function hasn't been affected because she is well-adjusted and at the top of her grade in all subjects.

Autoimmune diseases seem to run in our family as my 14 year old has hypothyroidism.

So, my ten year old has daily bouts of sadness trying to cope with all the new adjustments. It's not even something we've been able to get her used to over time because her body is already dependent on medication to break down her carbs and if her body doesn't absorb carbs, her medicine will cause all sorts of problems.

It's crazy the things I've had to do. Separate peanut butter, jelly, mayo, margarine, cream cheese, etc. I must have about 20 pounds of different types of flour just to bake things for her.

Despite all this, she has bouts of sadness every day when we come across something else she can't have. I just tell her she can't have it RIGHT NOW, but I always try to find a workaround.

It would be one thing if she grew up only knowing a special diet, but she knows what is different about her and now feels like an outcast. Her school district has several diabetics, but she is the only one known diagnosed with celiac disease in about 900 students.

The school keeps backup snacks (that I provide) in their freezer for days when someone brings in birthday treats, and is currently working on adding some special things to the school menu so she can eat school lunch like the other kids.

Does anyone have any advice on how to transition her a little better? I hate seeing her so disappointed in her life. It hasn't been easy, for sure.

I'd have to say I've done pretty good getting on track with her new diet (cooking in separate pots/pans, or cooking her food first) and such, but also one thing she is really missing is her Boston Cream doughnuts. Does anyone know of a place who makes gluten-free doughnuts??

Thanks all. I'm looking forward to being a member here, and hopefully I might even be able to contribute more when I am more educated!

[samie]

My little girl has both to. She was diagnosed with diabetes at 3 a month before she turned 4. Then I got tested for celiac it came back positive so her doctor said she need to be test and she was positive to at 4 1/2. Now she turned 5 in Nov. It was really hard for her to though it is getting better. Since she is almost 10 can you explain a little about her celiac to her or let her ask some questions and explain the answer for her. Make sure it not to much. Maybe let her pick out some foods that she really wants and at dinner let her help with some of the food prepping. If there's something that you want to make but don't know how to do it gluten-free just ask I'm sues someone on here can help you. Also you and her family should be tested because it is hereditary. Another idea is if others are still eating gluten then let dinner time be gluten free only.

[eatmeat4good]

Kinnickkinnick makes good gluten free donuts. She might not get her Boston Creme, but it's a good donut. Udi's makes great muffins and bread. My son was bummed out at first. He was 15 though. Now he is just fine with it because he feels so much better. You are doing the right thing to be up front with her yet supportive. Sounds like you are doing a really good job of handling all the changes. She will be sad and you can be sad with her or for her. It helps if someone understands that it is sad to lose the foods you loved. The fun is in trying to find or re-create the favorites and she will have happy moments when she finds something she really likes. Hang in there as it is a big adjustment for both of you.

[rosetapper23]

Kinnickknick (or spelled something like that) makes great donuts in various flavors and different glazes. You can usually find them in the frozen food section of a healthfood store. They taste just like the donuts my mom used to make. Udi's makes really blueberry muffins and other types of muffins that have a consistency very similar to the real thing. If she misses sourdough bread, Against the Grain Gourmet makes two types of baguettes that make me not miss the old stuff. You can go on their website at www.againstthegraingourmet.com to find out where their products are sold. They also make one of the best pizzas on the market.

[xjrosie]

It was hard because she was diagnosed right before Christmas break started.

I cook well-rounded dinners (meat, veggie, starch, with a glass of milk) so she isn't missing much there. It's the breakfast (cereal, waffles) that she misses, and eating lunch like the rest of her friends. I'm racking my brain to think of different lunches (yesterday, rice spaghetti and garlic toast; today summer sausage, cheese, crackers, and a jello/fruit cup).

She is an overly emotional child who takes EVERYTHING to heart. She wants to be famous in Hollywood. 'Nuff said, right?

We found a great recipe for sugar cookies for the holiday. They taste like "normal" cookies.

Eventually, we will all be gluten free here. It's just a naturally healthy way of living and then she won't feel like the lone duck - at least not at home. I have to wait until the rest of us go through our testing first though. I think once that it's all said and done she will adjust okay.

I told her that I wish she didn't have these problems, but being Christian I also told her that God is probably getting ready to use her for something better in the future. Maybe she will be a turning point for someone in a similar situation? I can honestly say there is something about this little girl that is special - everyone who has met her has said they feel such a warmth when she's around.

Needless to say, I don't sleep much anymore. I have had to go back to testing her blood sugar twice a night because of the lows.

Thanks for the kind words. Time to keep plugging away. I'm going to find a Boston Cream doughnut if it kills me!

[psawyer]

Needless to say, I don't sleep much anymore. I have had to go back to testing her blood sugar twice a night because of the lows.

I am also a type 1. The general wisdom is to eat a combination of complex carbohydrates with protein at dinner, and supplement with a smaller, similar snack at bedtime. With celiac disease, it can be a challenge to find an appropriate carb source which is not also loaded with sugar. Glutino make some crackers which might work, combined with some hard cheese. If night lows are frequent, consider a reduction in the insulin dose taken late in the day. If she is eating well, match the insulin to the food, not the other way around.

[Roda]

My youngest son was almost 6 when he was diagnosed. He already knew what celiac was since I have it. He was really sad for awhile, but he had a great kindergarden teacher. He was made to not feel different. They had snack everyday and the parents took turns providing it. The teacher got together with all the parents with children with allergies/food restrictions and then sent a list home so we knew what was safe. We also kept a bin at school that had things for him for special occasions etc. I know this really helped him deal with it in the beginning. Now he is a champ. He still has his moments but has really grown alot in the last year.

It also helped having the home mostly gluten free(only bread/crackers/cereal for the hubby) and me already eating that way. All shared meals were made gluten free and all baking was gluten free also. I've since had a third converter in the house. My oldest son who is almost 11 went gluten free in Aug. as a trial. All his testing is negative. He is seeing improvements. He did try gluten over the holiday and decided he is going to stick with gluten free. He too is one of the smallest in his class but has started gaining weight and slighly gaining height since being gluten free.

Try having her focus on what she can have instead of what she can't. Get her involved with food choices and food preperation. Let her experiment. My youngest and I love to be in the kitchen together. He helps me make our meals and has become quite a food critic.

[mommida]

Celiac Specialties (www.celiacspecialties.com) in (Rochester and Novi) Michigan has the closest to a Krispie Creme doughnut. You would have to get the plain doughnut holes. Some private health food stores carry them in the frozen section.

If you can get the basic doughnut right, make your own custard and frosting.

So I think it is possible for you to get pretty close to boston creme.

[pricklypear1971]

Do you have a local Celiac group? Is there a kids' group also?

That would be a great way for her to meet other kids with Celiac,

[samie]

If she wants waffles Kroger sells gluten-free one brand name is van's. Its in the frozen section of the health food area. Me and my girls like them. Udi and rudi is good bread.

[Roda]

Betty Crocker gluten free Bisquik mix makes great waffles. I make several batches up at a time and freeze them. The kids will take them out, pop then into their toaster and have a warm breakfast.

I also do the same with pancakes and crepes. My kids are crazy for crepes and use them for sandwich wraps. They also like Udi's bread/bagles and Glutino english muffins.

[rosetapper23]

LOL--looks like eatmeat4good and I posted at almost the same time--and we said almost the same things!

As for cereal, Cocoa Pebbles and Fruity Pebbles are naturally gluten free, and Chex and Rice Krispies can be found in gluten-free versions. Also, there are a lot of gluten-free waffles out there.

[xjrosie]

Thanks to everyone.

Pretty much all my time on the internet now is food-hunting. I am trying to find a way to make life as easy as possible.

I have a Walmart and Meijer close to me with an even larger selection of gluten-free foods than Kroger or the higher-end markets, so that's good.

I finally found a loaf bread that she said she can "tolerate".

I came across the bakeries in Rochester and Novi the other day, and along with the one in Plymouth I think that's pretty darn good selection. Problem is that Rochester is an hour away and the other two are almost two hours from me. I'm gonna have to buy and freeze.

I have found some recipes to make gluten-free Boston Creams, and she said she wouldn't mind giving it a try. It won't be like Tim Horton's but at least it's close.

I have found a allrecipes.com, they have a lot of gluten-free recipes, and it allows me to print out the recipe in index card form so I don't have to copy/paste/reprint to get it in my recipe box.

Thank God I have an iPhone now that will let me track her favorite foods and such.

One more question:

I read in someone else's post about celiac disease and leukemia being sometimes connected. I have already had thoughts that maybe her body is slowing deteriorating. Has anyone experienced celiac disease in relation to other things? Her thyroid is okay as of this past summer, and all other regular testing comes back normal. But I'm wondering if, in a year or two, is something else going to shut down on her? I am going to ask her doctor on Thursday, but the more I've been reading on the forums, the more I want to freak out.

[mommida]

Holy crap! From your description of Rochester, Novi, and Plymouth we live somewhat near each other.

I would like to try the doughnut recipe too.

My daughter has Eosinophilic Esophagitus and Celiac. I have Hashimoto's thyroiditis and Celiac.

I think the Luekemia connection you are talking about is a later turn from ITP (I'm having a total brain fart here, and I'm sure sure I have the initials right) low platlet condition caused by auto-immune attack on blood cells.

[xjrosie]

Holy crap! From your description of Rochester, Novi, and Plymouth we live somewhat near each other.

I would like to try the doughnut recipe too.

My daughter has Eosinophilic Esophagitus and Celiac. I have Hashimoto's thyroiditis and Celiac.

I think the Luekemia connection you are talking about is a later turn from ITP (I'm having a total brain fart here, and I'm sure sure I have the initials right) low platlet condition caused by auto-immune attack on blood cells.

Mommida, I live up at the north side of Macomb County. I hate living here, but it's a great school district and we live within walking distance of the school. I have to drive for EVERYTHING, and it's annoying, but I'm used to it.

A small update: her blood sugar is starting to level out. I think she just needed time to work out the leftover inflammation. I'm giving it another week, and I have a feeling we'll be adjusting her meds to increase her insulin, as that's what we were doing during the time she was gluten free before diagnosis.

[researchmomma]

It was hard because she was diagnosed right before Christmas break started.

I cook well-rounded dinners (meat, veggie, starch, with a glass of milk) so she isn't missing much there. It's the breakfast (cereal, waffles) that she misses, and eating lunch like the rest of her friends. I'm racking my brain to think of different lunches (yesterday, rice spaghetti and garlic toast; today summer sausage, cheese, crackers, and a jello/fruit cup).

She is an overly emotional child who takes EVERYTHING to heart. She wants to be famous in Hollywood. 'Nuff said, right?

We found a great recipe for sugar cookies for the holiday. They taste like "normal" cookies.

Eventually, we will all be gluten free here. It's just a naturally healthy way of living and then she won't feel like the lone duck - at least not at home. I have to wait until the rest of us go through our testing first though. I think once that it's all said and done she will adjust okay.

I told her that I wish she didn't have these problems, but being Christian I also told her that God is probably getting ready to use her for something better in the future. Maybe she will be a turning point for someone in a similar situation? I can honestly say there is something about this little girl that is special - everyone who has met her has said they feel such a warmth when she's around.

Needless to say, I don't sleep much anymore. I have had to go back to testing her blood sugar twice a night because of the lows.

Thanks for the kind words. Time to keep plugging away. I'm going to find a Boston Cream doughnut if it kills me!

I sent you a personal note on some donut info and other stuff. Wow, I can relate to the waffle thing. My 12 yo girl is addicted to Eggos. Pamela's makes an amazing pancake and baking mix. I had friends over and they had no idea that they were gluten-free. So get some of that or Better Batter (online).

Do you have a thermos for her lunches? I make homemade soups and chilis and freeze them and heat them up for her lunches. I always have a few Healthy Choice Chicken and Rice soup (need to add a little salt) just in case I need something quickly for her. Salads are good for lunch too. We are still working on the lunch thing but it is working out OK now. Sometimes I give her a rice cake, turkey and cheese and ler her put together a 'sandwich".

I also make gluten-free Lasagna. I use rice lasagna noodles and I don't boil them before. Just layer them and bake. They turn out great and then I freeze them individually for lunches. Also chicken legs are good.

My friend gave me some good advice. She said "just get her over the shock of changing her diet. Spend a little extra to get her the gluten-free muffins in the freezer section and the Udi's White Bread (which is really good toasted). Just a note I made some really good gluten-free blueberry muffins the other day. They are GOOD.

Cereals: Chex cereals Honey Nut, Fruity Pebbles and Cocoa pebbles to name a few. Not the healthiest though but my daughter likes them.

You will get lots of great advice. You are in the right place!

Oh, and you son should be tested too if he hasn't already.

Welcome!

[nocornhouse]

I am new to celiac, but not new to diet changes and kids (we are allergic to corn, and avoid artificials). It takes time for kids to adjust, but they do. I have never tried to make all the same things as before, or as there classmates but, i try to make some special things. It is hard because they don't always fully see the links between diet adn health right away, they just want to eat the same thing as before and as their classmates. Be patient with any slip ups and food rebelling, just turn it into a learning experience for next time.

My advice is to remember that it will take you time to learn this new way of eating/shopping/cooking and give yourself time. I say that I do a maximum of one new things a week! It keeps me sane. My kids (7 and 9) get it they are patient with a lot of the same over adn over again, while I try some new things...they enjoy the successes with me, and laugh at the disasters!

[xjrosie]

Yep, she has a Thermos. It's even one of the cool ones where you can use the lid as a cup.

I'm glad I live only about ten miles from a grocery store. They don't have the best selection of gluten-free, but during the day when I'm planning dinner I think about what she can eat first. If I don't have something, I go get it. Conversely, if I happen to plan items for my other girls that I don't have for my celiac, I go get that too.

The frozen waffles are okay, but I don't like paying twice the price for half the waffles, I am indeed going to pull out my waffle iron again (and give it a good scrub down). I have a couple batters that she likes fortunately.

I think I've probably spent about $300 so far just to get a good base of gluten-free products, but I have all the different flours for scratch cooking, and stocked up my freezer with breads and other goodies from the bakery.

She's doing great. She loves her lunch today: Bagel with cream cheese (I know, not guaranteed, but taking a chance), citrus fruit, a homemade no-bake cookie (no oat sensitivity for now) and grape Kool aid. I try to send at least one lunch a week that's more fun, less nutrition. Yesterday she had summer sausage and cojack cheese with gluten-free crackers, a Cocoa Pebbles marshmallow treat, and milk.

Thank God, she's only allergic to gluten. Reading other people's posts, I think we got off easy! I feel really bad for those who have to battle multiple allergens.