My Daughter Was Just Diagnosed With Celiacs

[Emilysmomma]

My name is Lia (Leah) and my daughter Emily is 5 years old and we have just gone through the process of getting her diagnosed with Celiacs. Two of my BIL have it, so we suspected she might have it as well. She had the blood test last month and her Celiacs came back highly elevated. Her endoscopy was this past Monday, and the office called yesterday afternoon and confirmed that she does have Celiacs. This is all new to me, though I know some from my BIL's experience, I feel very unequipped to deal with all of this. I have a lot of research ahead of me. At the same time I am glad to finally have some answers to why she been having so many stomach aches, bloating all the time, and constipation.

Any insight you might have would be great!!! Not even sure where to start at changing over her diet.

[ShayFL]

Welcome - You are among kindred souls.

What is her "normal" diet like.

I personally have been a "health nut" for about 15 years, so my daughter was raised on whole foods and whole grains. So when we switched over our diet, we just replaced whole wheat (never really ate rye or barley) with gluten-free grains. I have learned to bake with the gluten-free grains. I have mostly made homemade treats for the past 15 years anyway. So though there was a learning curve for a new kind of baking, it has not been that different for us.

But everyone is different. If you let us know what she normally eats, we can help with substitutions and make sure she is getting good nutrition as well.

[Emilysmomma]

Thank you for your quick response! Her normal diet is pretty typical:

She loves cereal for breakfast, but sometimes eats waffles, and sometimes toast. She has fruit for a mid morning snack which won't be a problem, she sometimes has fruit cups (Dole) those should be okay right?

Lunch she really eats one of two things peanut butter sandwich or grilled cheese sandwich with lactaid cheese because she is also Lactose intolerant.

Dinner we eat all different things like Taco salad, spaghetti, grilled chicken, hotdogs, hamburgers, turkey burgers, lots of salad, she just likes the lettuce though, quesidillas, Fajitas

Snacks she loves her animal crackers, cheese crackers, and pretzels. She also eats popcorn

Like any kid she likes candy, but I know there will be a lot of that she can't have, and we limit it anyways to a treat every now and then.

Thanks again for you quick response!!

[ShayFL]

Here are some suggestions:

First, most celiacs are not only lactose intolerant but casien (milk protein) intolerant. Most have the best success and faster haling by removing gluten and dairy from their diet at least for the first 3 months or so until the villi heal. Once healed, you can reintroduce dairy and see if it is tolerated. Many can, but some never can. Gluten of course is a lifelong avoidance.

Bfst: My daughter likes these gluten-free waffles: Open Original Shared Link

Eggs with grits

Smoothies with fruit/dairy free milk and protein powder from rice or egg

If you dont mind cooking there are a lot of recipes for gluten-free pancakes here: Open Original Shared Link

Just select the "Gluten Free" category and type in pancakes.

My entire family LOVES his recipe for teff/peanut butter cookies.

Snacks: Fruit and nuts are very good. Rice cakes with nut butters and sliced fruit.

Dinners: You are doing fine, just switch out gluten-free pasta for what you already do. And you can dredge your meats in gluten-free flours if you want to pan fry something. We eat a lot of soups with gluten-free broth, Frozen veggies and meats. I will throw in par-boiled rice for starch.

***You will have to get very good at reading labels and look for "Gluten Free" and learn where gluten can be hidden in common ingredients:

Open Original Shared Link

And you will want to change out her haircare, toothpaste, etc for gluten-free. Dove products are gluten-free or will mark "wheat" when it is included. And Crest is gluten-free. A lot of Burt's Bees is gluten-free, but check the website for their updated gluten-free list.

***Eating out can be a challenge, but there are restaurants that have gluten-free menus.

I just got this:

Open Original Shared Link

Along with the Eseential Gluten Free Grocery Guide. The Grocery Guide is nice because it lists name brands that are safe. You will want to get the updated version every year because products change ingredients from time to time.

I know it seems overwhelming, but it gets easier the more you do it.

***It is important that your kitchen be clean and safe from "cross contamination". i.e. she need her own toaster, old teflon pans that are scratched need to be replaced, wooden spoons and cutting boards that could have traces of gluten on them.

Ask any questions. Everyone here is helpful. But this should get you going!!

[ShayFL]

Oh and sub out the flour tortillas for gluten-free corn tortillas.

They do make gluten-free hotdog and hamburger buns, but I have never eaten them.

My regular grocery store stocks a lot of gluten-free flours and products, but you can also order them online or go to a local health food store.

[Emilysmomma]

Thank you so MUCH!! That was such a big help! I am going to look that over, I also saw on another post how to make my own gluten free chicken nuggets - she LOVES those, so I will be trying that out! School lunches will likely be my biggest challenge, between what she doesn't like and can't have. She is already on a dairy free diet, that was initially what the pedi thought the issue was, when she didn't get better I pushed him to send her for more testing, so he sent us on to a pediatric gastro doc.

You are right, this is all VERY overwhelming, I'm not even really sure where to start! But you have given me some good ideas!

[ShayFL]

Oh and my favorite cookbook now "Cooking Free". The banana bread and the blueberry muffins are wonderful. Ive also made bread sticks which me and my daughter loved from this book. And some of the salad dressings. I like the Italian best from this book.

Think of it as an adventure!! And adventure that will lead to a healthy life for your daughter. And also if you or your husband have any nagging health issues, you will want to get tested. Celiac is genetic and one of you gave her the gene(s). This is not to make you feel guilty. Who can know???? I have passed on genes to my daughter too. But also have passed on some really good things too like creativity and compassion.

But if you guys test positive, then it would be a lot easier as you could all be 100% gluten-free in your house. My husband agreed to not eat gluten in the house. He eats it when he is at work. No gluten foods even come through my door.

[mstroud]

My name is Lia (Leah) and my daughter Emily is 5 years old and we have just gone through the process of getting her diagnosed with Celiacs. Two of my BIL have it, so we suspected she might have it as well. She had the blood test last month and her Celiacs came back highly elevated. Her endoscopy was this past Monday, and the office called yesterday afternoon and confirmed that she does have Celiacs. This is all new to me, though I know some from my BIL's experience, I feel very unequipped to deal with all of this. I have a lot of research ahead of me. At the same time I am glad to finally have some answers to why she been having so many stomach aches, bloating all the time, and constipation.

Any insight you might have would be great!!! Not even sure where to start at changing over her diet.

Lia,

I'm not sure I have any insight for you as my son (7) was diagnosed right before Mother's Day. I feel like I've been on a rollercoaster ride of emotions! At first the diet went well, but then he started having pain again and it almost seemed worse than before. The nutritionist and his pediatric GI suggested we take him off of all dairy for a 2-4 week trial and so far I'm seeing improvement. It is very overwhelming, but as everyone has told me ... it does get a little easier every day.

For help finding gluten free products in the grocery store I ordered a book called Cecelia's Marketplace (Open Original Shared Link) and highly recommend it. Other posters might have other suggestions for similar books. I also just ordered a book for my son in the hopes that he'll understand that he's not alone. I believe it's called the gluten-free Kid and there are others ... actually, one is called Eating Gluten-Free with Emily!

I took my son with me to Whole Foods yesterday and he enjoyed picking out snacks for his upcoming camps and being a part of choosing foods for the family. I've started making gluten free dinners and we all pretty much have individualized breakfasts and lunches. My son likes the Kinnikinnick gluten-free bread which has made packing his lunches a lot easier!

Good luck! I've found a ton of helpful ideas on this board! Margaret

[NewGFMom]

for Chicken nuggets try this:

Mix almond flour with italian seasonings salt and pepper. (You can make your own by putting almonds in the food processor).

Just beat an egg and dip raw chicken tenders into the egg and then coat well with the almond flour mixture.

Cook it up in some canola or olive oil and nobody will know you didn't use Italian breadcrumbs.

-Margaret

[Amyleigh0007]

Gluten Free For Dummies was a God-send for me. I highly recommend it.

Amy

[Darn210]

Hello Lia,

Welcome to the board. You have found a wonderful place for help and support. Lots of people here that have already been through what you are going through. Let me tell you first of all not to beat yourself up when you make a mistake. . . just part of the learning process. A little over a month into my daughter's diet, I realized that the syrup we were using had gluten in it! Uggghhh!! Also, I thought I was going to have to make just about everything from scratch or buy a bunch of (expensive) gluten-free versions of standard items, but a little research will show you that many mainstream items are gluten-free. You just need to know which brand to buy.

Here is a site that lists the names of the companies that do not hide the gluten in their labeling.

Open Original Shared Link

If wheat, rye, barley or oats is in the product they will list it. Even in the ambiguous "natural flavor", they will call it out with something like "natural flavor derived from barley" if it is in there. It's good to know this companies so that when you are in the store and realize you need something that you haven't researched yet, you can check some of these big (Kraft, ConAgra, Unilever) companies' products and just read the labels.

OK, a couple of (gluten-free specialty) favourites of my daughter:

Tinkyada brand pasta

Pamela's Pancake mix (also use this for muffins - recipe on the side of the package)

Bell & Evans Chicken nuggets or Chicken tenders (make sure it says gluten-free on the pkg, they make other kinds)

Rice Chex

Corn Crunchems (Like Corn Chex)

Glutino Pretzels

Van's Waffles (once again, make sure your pkg says gluten-free)

Pamela's Bread Mix (and made in a breadmaker)

Plenty of candy is gluten-free - you may or may not be happy to hear that - skittles, starbursts, M&M's (not the crispy ones), all tootsie roll products . . . etc.

I make gluten-free "Chex Mix". It's a big snack here (use Lea&Perrins Worcestershire sauce (in US only) and Lawry's Seasoned Salt)

Lactose intolerance is quite common for people with Celiac as the villi are damaged. Once her intestines heal, she may no longer have a problem with it.

After a little experimenting, I found that the gluten-free recipes that I liked best were my previous gluten recipes converted by using my preferred gluten-free flour mix and some additional xanthan gum, extra baking soda and baking powder.

If you are having trouble finding a gluten-free alternative for one of your daughter's favourites, please post. Someone will be able to give you a good alternative (hopefully even mainstream) or a recipe.

Oh . . . and my daughter's favourite lunch . . . peanut butter and nutella on a leftover pancake from breakfast folded in half. She calls them "PeanutButterNutellaTacos" . . . all one word

[Guest lorlyn]

My 11 year old daughter was diagnosed a year and a half ago and she is doing great on the diet. She went through a period where she would get upset at not being able to have her old food (white donuts, dorritos, worthers candy cinnamon rolls etc..) Now she understands that it will make her sick and that would interrupt her social life.LOL. She just got back from Girl Scout camp for a whole week and we did not have any problems with her food. The camp just let her bring her own food and she handels it all own her own. We just ordred donuts and cinnamon rolls on line and she just loved them both. Will be ordering more now. Just hang in there and it does get to be second nature. The hardest thing we have to remember is when she gets her hair cut alot of salon products have wheat in them. Take care and welcome to the forum.

[Emilysmomma]

Again, thank you so much!! I have taken a lot of notes from all of you!! We had our appt with the dietician yesterday, and that was very informative and helpful. We are going to join a support group that specializes in kids with Celiac. I learned a lot yesterday, we stopped at a Oriental Grocery store and bought rice flour both reg and sweet. I have a recipe for choc chip cookies that Em and I are going to make today. I have to first wash both of our aprons because we've baked with them prior to her being diagnosed, and I don't want to cross contaminate with any flour residue that might be leftover from the last time we baked. This forum has been so helpful, I have been mostly reading and not responding to other post, but I will start to contribute as I can. Thank you all so much!

For me I feel relieved to finally know why my daughter has been sick - the Celiacs affected such a big part of her life, and I am so glad to be on the road to making her well again. Growing up I had a friend with Muscular Dystrophy (sp?), when I met him he was able to walk, as we got older his muscles began to waste, and by the time we moved away when I was 9 he was not longer able to walk, he was in a wheel chair. I remember as a child realizing that as I gained more freedom, he lost his - it was so sad. He died when he was 16. So I keep that in my mind when I think about this being life long, that my Emily will live a long life, and though this will limit what she can eat, it won't be life altering for her, she will still be able to do all the things she wants to do, just with a few modifications!

[LTB159]

Again, thank you so much!! I have taken a lot of notes from all of you!! We had our appt with the dietician yesterday, and that was very informative and helpful. We are going to join a support group that specializes in kids with Celiac. I learned a lot yesterday, we stopped at a Oriental Grocery store and bought rice flour both reg and sweet. I have a recipe for choc chip cookies that Em and I are going to make today. I have to first wash both of our aprons because we've baked with them prior to her being diagnosed, and I don't want to cross contaminate with any flour residue that might be leftover from the last time we baked. This forum has been so helpful, I have been mostly reading and not responding to other post, but I will start to contribute as I can. Thank you all so much!

For me I feel relieved to finally know why my daughter has been sick - the Celiacs affected such a big part of her life, and I am so glad to be on the road to making her well again. Growing up I had a friend with Muscular Dystrophy (sp?), when I met him he was able to walk, as we got older his muscles began to waste, and by the time we moved away when I was 9 he was not longer able to walk, he was in a wheel chair. I remember as a child realizing that as I gained more freedom, he lost his - it was so sad. He died when he was 16. So I keep that in my mind when I think about this being life long, that my Emily will live a long life, and though this will limit what she can eat, it won't be life altering for her, she will still be able to do all the things she wants to do, just with a few modifications!

[LTB159]

You sound like you're doing all the right things. This is my first time writing on this forum - my daughter is 13 and was diagnosed 3 months ago. She is just starting to feel better. The whole family went gluten free even though she's the only one with Celiac. We don't know anyone else with the disease, no one in our town even, so we thought it was only fair that we all do this for her too. The best thing I did was invest in a bread machine. My daughter was a carb-lover before the diagnosis so eliminating bread was not an option. I've been using the bread machine twice a week, making gluten-free breads and experimenting with add ins. I'm not much of a cook but now I've made an effort to become a good gluten-free cook. Most of the breads have been delicious - much better than what you can buy. And someday she'll take the bread machine with her when she grows up.

Anyway, it's been tough, but a learning journey. Now we're just waiting for my daughter to grow and gain weight ! She's got a sparkle in her eyes again so I know she's getting healthy.

Good luck and remember, you are not alone! This blog has helped me tremendously by reading and reading and reading!!

[Emilysmomma]

Any bread recipes that you have for the bread machine I'd love to hear!! I am still debating weither to attempt bread without the bread machine or not. I have a recipe for white bread that came in the gluten free cookbook they gave me at the dietician appt, but it isn't for a bread machine. I need to buy a new bread machine if I do make bread that way though.

[LTB159]

Any bread recipes that you have for the bread machine I'd love to hear!! I am still debating weither to attempt bread without the bread machine or not. I have a recipe for white bread that came in the gluten free cookbook they gave me at the dietician appt, but it isn't for a bread machine. I need to buy a new bread machine if I do make bread that way though.

Any bread recipe you find - it doesn't have to be for a machine - can be made on the "gluten free" setting on my bread machine - The Breadman Pro model 875. My daughter loves the 350 gluten-free Sandwich Bread mix from Whole Foods. I also use the Brown Rice & Cranberry Bread from a great cookbook, Incredible Edible Gluten-Free Food for Kids by Sheri L. Sanderson. (If you're interested in the bread machine, I bought it at Linen's and Things - about $85.00. If you do buy the Breadman, there's a country white bread gluten-free recipe that's really good.

[CeliacMom2008]

My son likes Gluten Free Pantry's bread mix. It freezes well (I slice it and then freeze it with saran wrap between the pieces so I can pull out however many I need at a time).

How did your cookies turn out? We love Gluten Free Sensations chocolate chip cookies. EVERYONE who has tried them loves them. They always disappear at family functions (where my son is the only one who is gluten-free).

We also love Bell Evans chicken nuggets. They also have tenders and patties. I buy them at our regular grocery store.

We also love Quinoa pasta. I know a lot of others prefer other brands, but Quinoa is a healthy pasta that we love and would eat over gluten pasta any day.

We also like Mrs. Leepers dinners. They're like hamburger helper. We like stroganoff and cheesy hamburger.

Oh, and Annie's frozen mac and cheese - but be careful because they also have a lot of Annie products that are organic (and full of gluten!).

Those are my favorite "convenience" items. We do most of our cooking more from scratch, but I know that one of the hardest parts of parenting a Celiac is dealing with those meals when you're short on time.

And you may find that once she heals she can tolerate milk products again. Speaking of that, some of the above may be out because it isn't lactose free. But again, you may find that that was just a symptom of the Celiac that goes away. But research re-introducing dairy. I think you have to go slow as the body (any body I think) will have a difficult time reaccepting dairy. Your body has to start producing the enzyme. Also, when I was researching lactose issues for my son I found a lot of info on higher fat content dairy being easier to digest (which is just the opposite of what I'd have thought!). So maybe you start with whole milk, aged cheeses, etc. I'm sure there's lot of info out there somewhere on it.

Hang in there, the first few weeks are the toughest but then it truly does get much easier. We've only been gluten-free since December and outside of eating out (that's still not something we know how to do) it is no big deal around here. In fact, we eat a lot better tasting food than we used to!

[purple]

Remember to make extra foods and freeze them in small portions for a fast lunch. Cook and freeze meats too for tacos. Like taco meat- beef or chicken, bbq chicken or sloppy joes on tortillas. Just mix and match your meats with breads, pastas, waffles, tortillas and chips. It doesn't have to be traditional just creative. Add in veggies- peppers, onions, garlic, tomatoes, grated carrots, ground nuts, ground flax seed, beans, etc. (easy on the beans until she gets better) for adding vitamins, nutrients, fiber and protien. It adds flavor too. You can top waffles with anything. Just toast and top for open face or grill sandwiches and cut into little ones for Em. Get her to help decide/make food so she can learn to cook gluten free at an early age and explain what is healthy and what is not. Make miniature muffins instead of cakes, donuts and cookies save those for special occasions. Put in healthy things like p.b., nuts, raisins, berries, flax, coconut, bananas, unsweetened applesauce, craisins, carrots, pineapple, gluten-free oats, mini choc chips too, etc. Homemade waffles can have those things too and ham bits. Use sorghum flour to replace the rice flour to add extra fiber and protein when you bake. Some people don't like bean flour so don't give up if you make something with it and don't like it. Have fun with cooking b/c it will take out the headache. Think or it as a new and healthy hobby that will keep the family close. Go to the topic Gluten Free Baking and Cooking tips and read them all for alot of good cooking ideas and recipes.

[Emilysmomma]

Thank you so much, I really need to find some way to print this thread, is that an option on here, I am looking but i can't find it. You have all given me some great suggestioins! And the chocolate chip cookies I made turned out delicious, they taste just like tollhouse with a different texture. I will post the recipe sometime over the next few days. What I loved about it is it only calls for sweet rice flour and rice flour, and corn starch, everything else were things I had in the house already. I didn't get as lucky on making bread from scratch,, that turned out terrible. I think I will end up purchasing a new bread machine since there really is no way to get the flour out of my current one. Thanks again for all of the good ideas. And those meals on the run ideas will help me when school starts back up and we are on the run in the Fall!! Thanks again!!

[purple]

Thank you so much, I really need to find some way to print this thread, is that an option on here, I am looking but i can't find it. You have all given me some great suggestioins! And the chocolate chip cookies I made turned out delicious, they taste just like tollhouse with a different texture. I will post the recipe sometime over the next few days. What I loved about it is it only calls for sweet rice flour and rice flour, and corn starch, everything else were things I had in the house already. I didn't get as lucky on making bread from scratch,, that turned out terrible. I think I will end up purchasing a new bread machine since there really is no way to get the flour out of my current one. Thanks again for all of the good ideas. And those meals on the run ideas will help me when school starts back up and we are on the run in the Fall!! Thanks again!!

Sorry, I don't know how to print anything except by pen and paper and a copy machine...ha ha.

I made my 2nd loaf of bread today. It was tastey! Go to gluten free baking and cooking as I said before. Then go to the thread "very good bread recipe". I posted where to find the french bread recipe I made and others posted there too. I want to try the one Fiddlefaddle posted, it sounds like the easiest one ever. Save your bread mistakes for bread crumbs in other recipes. They say bread is the hardest thing to make so don't get upset. You know, I just had a thought...I bet we all should be washing out our fridges and freezers and all the jars and containers. I never read anything about that yet. Only the oven and other appliances. What about a child's car seat? and outdoor stuff like picnic tables, coolers and what not... They say poison ivy spreads onto your car seat. More ways to get glutened without knowing it I suppose. Keep our ears and eyes opened.