Daughter Diagnosed Yesterday, Tons Of Questions

[mom2two]

After two positive blood tests, and two negative scopes in 2.5 years we just got my four year old's enderol lab results back yesterday. She was 23 for the IgA which was not surprising to me. I already know how to start cutting gluten out of her diet, thanks to many helpful messages here. What was surprising was her IgA anti-casein which was 15. It doesn't seem that high but according to them it is high enough to cut out casein. I don't even know where to start there, especially on top of the gluten! Do I cut it all out at once? What does that leave for her to eat?

Also, how do I explain to my very bright, but highly emotional four year old who LOVES food that she has celiac disease? I plan on getting some of the reccommended books for celiac kids off of Amazon but...any other advise?

Also, the gene analysis is confusing. It says she has one of the main genes that predisposes her to gluten sensitivity and celiac sprue, HLA-DQ2 or HLA-DQ8 -DQ8. (Subtype 2,7) What does that really mean? and what are people's reccomendations for the rest of the family getting tested. No one else is showing any symptoms at all. Sorry for all the questions I just don't know where to turn, and Dr. have been far from helpful.

[Ursa Major]

There IS life after gluten and dairy, trust me. Your daughter will adapt, she is little. Was she tested for soy, too? Beware of substituting with soy, it could very well be a problem, too. And soy, as well as casein and gluten, can also flatten the villi.

Just explain to her that her tests show that she will get very sick if she keeps eating normal bread, and things that have milk in them (and tell her what those are). Then tell her that you will need to work together to figure out what she should eat now, because you love her very much, and don't want her to get sick.

You could together draw pictures of food she can still eat, and take those to the store to shop. It will be fun. Tell her that you will try different breads she can still have, and cookies, and pastas, to find the ones she likes. You can buy gluten-free flours and experiment with baking cookies, all kids love baking cookies. gluten-free cookies (at least the home-baked ones) are every bit as good as the gluteny ones. Some of the store-bought ones are fairly gross, but as I said, you just have to try different brands, until you find something your daughter likes.

She can still eat all meat, fish, vegetables and fruit, as well as nuts, seeds, several gluten-free cereals and many other things. Try rice milk (not rice dream, it is not gluten-free) or almond milk with the cereal.

[AndreaB]

Hi and Welcome!

My family is gluten, soy and dairy free. My husband and I are soy intolerant and my two oldest children and I are gluten intolerant. I am mildly dairy allergic.

I've posted some recipes under the following thread if you'd like to look.....Open Original Shared Link. I am a former vegan and have lots of recipes, although many have soy or gluten in them, others do not. I haven't really looked at adapting too many yet. Haven't been spending much time baking. I used to make all my own bread and stuff.....still make my own bread using Annalise Roberts cookbook. She uses dairy and eggs but I substitute for the dairy.

You'll want to cut the food out as quickly as possibe. Kids are resilient. Mine fought tooth and nail about our diet change. My oldest has finally gotten used to meat, my next oldest is still not cooperating very well. We've been gluten free since June but were gluten light before that (since April).

[key]

I am sorry your 4 year old has this. I am possibly going through the same thing. My youngest is 2 years old and has celiac disease. I have it. We tested my oldest son thinking, because he was only in the 10th percentile he may have it too. His came back completely normal.

My now 4.5 year old was always my biggest and appeared to be the healthiest child. He was in the 95th percentile for weight and the 75th for height. Then for the past few years he dropped the the 50th and the 25th. I thought that was ok, but was concerned because he was so gassy, had become a poor eater, irritable, etc. I asked the doctor 6 months ago if he should be tested and he said he "looked" healthy to him. Oh he complained of stomach aches on and off.

Then the other day, we are going through a period of the stomach aches, so I finally got him into see a new doctor here. I was shocked to find out he had lost weight since March and had dropped to the 10th percentile for weight. He had his blood drawn day before yesterday. I am terrified that it is something else. I can't believe he would have it too. I know relatives are at higher risk, but my blood tests were borderline positive and no one has believed me. I just was so sick I stayed gluten free. I never had the biopsy, because I had already been gluten free for 2 months when tested. My other son didn't either, because we were out of town and he was so sick we just put him on the diet.

THe doctor here says my 4 year old doesn't need a biopsy if the blood work is positive. She says it is obvious with his family history. She said she just went to a convention on celiac disease. I have already started cutting out gluten from his diet, because I want him to gain weight. I am worried about him having Type 1 diabetes too. It doesn't run in our family, but I read it can cause weight loss.

I am also worried about him being upset about his diet, but I will have to just substitute everything. We don't eat meat and that makes it doubly hard. We do eat dairy though.

Right now I am just really upset that I was never diagnosed for SO many years. Everyone of my 3 kids has something. THey are normal, but my one had a birth defect with his skull and had to have major surgery, the second was my one that was ok until now, my 3rd is small, probably has a genetic disease called NF1 and celiac disease. All of them are intelligent and handsome though! So i am greatful for that, but I just feel that if I hadn't had undiagnosed celiac disease while pregnant this wouldn't have happened.

Hang in there. It takes awhile to adjust. Just wanted you to know that I have a 4 year old with this too probably.

Oh yeah, I say ALWAYS trust your mommy instinct. I have yet to be wrong! I am mad that I didn't test him six months ago. THe doctor talked me out of it, but he should have been tested "just because his brother and I have it"!

Monica

[mom2two]

Thanks for all the good advice and tips. I would be totally in the dark without this message board. I wish others we'ren't going through the same thing but it is nice to know I'm not alone. Any advice on the casein issue? SHould we cut out gluten and casein together or do one first? ALso, where do I start with the casein? I've heard I shouldn't substitute with soy but are their cheese or yogurt substitutes? My daughter loves these two foods and practically lives on them!?!

[fullofhope]

I'd start with one (gluten) and then move to dairy. All at once could be too stressful for everyone. Alas I have not found a yogurt that isn't soy or dairy, and the same with cheese- maybe someone else has some source I don't know about, though!

We use bob's red mill mixes (pancake, brownie, and choc. chip cookie), envirokids cereal, pacific rice milk, enjoy life cookies, cereal bars, etc, and food for life millet and rice breads (frozen- they toast up yummy but you'll need a dedicated gluten-free toaster so you don't cross contaminate), and tinkyada rice pasta or quinoa (keenwah) pasta. I use rice flour or millet flour for things like chicken nuggets (although Ian's red banner makes good chicken nuggets and fish sticks). I'm just beginning to realize how many mainstream brands are gluten free (I'm finally calling companies and looking at websites) and our options are opening before us.

The AiA gluten and dairy free cookbook and special diets for special kids are wonderful cookbooks, and wheat free worry free or raising our celiac kids are both great books for info and recipes too.

We told our son that it was gluten, dairy, and soy causing him to feel icky and itchy, but look at all the yummy things we can still eat. I carry his favorites with me, esp when we are eating out or at the grocery store or a friend's house where there are likely to be things he will look longingly at, so he can have his gluten-free treats too. Usually what happens is everyone gets jealous of HIM because his treats look so good.

Best wishes,

janel

[Nic]

My son was 4 when he was diagnosed. I explained to him that his body is confused and thinks that some of his favorite foods (I explained which ones) are poison and they are making him feel so sick. He understood it very well because he knew what poison was and I never had to explain it to him again. He now tells people when they offer him food that he can't eat that because it has gluten. He won't even touch food he can't have. He accidentally spilled a bowl of my nephews doritos the other day and he told my sister that he spilled them but he can't pick them up because he can't touch them. He has learned well, so will your child. Good luck.

Nicole

[Guest nini]

my daughter was dx'ed at three and now at six she is happy and healthy and thriving... focus on the things she CAN have, not on what she can't. Get the book Kids with Celiac Disease by Danna Korn, it will help A LOT. After she is gluten-free for a while she may be able to tolerate dairy again, so look at taking dairy out of her diet as a possibly temporary situation, if it turns out she isn't ever able to tolerate it, you will have gotten the hang of it by then.

In my signature there is a link to my web page, at the bottom of my web page is a link to the newbie survival kit that you can download, hopefully that will help you find some fun food choices for your daughter. It's all in how you approach it I think. If you see this dx as a good thing and that your daughter will now be healthy and you will be preventing her from a lifetime of illness it's easier to deal with than if you focus on OH NO I have to deprive this child of her favorite foods. You will find other foods that she will love. It gets easier.