Freaking Out

[brookepalacio]

I am in need of some serious support. Two months ago my daughter had allergy testing and is allergic to dairy, eggs and peanuts. After going to soy milk her typical three a day poop got worse so now she is soy intolerant. I finally got someone to listen to me (her nutritionist) about her constant diarreha. So she went to a gastrointerologist and now she may have Celiac Disease. She goes for her diagnostic testing as soon as they call for a date to go. WHAT IS MY CHILD GOING TO EAT NOW???? I feel so sorry for my little girl she gone a 1 1/2 with constant poops (2-3 a day). Her peditrician said I was giving her too much juice. I feel like sticking my foot in his butt. Is there anyone out there with all these diet restrictions? Or some of these at least? Thanks.

[Guest jhmom]

My 8 year old daughter and I both have gluten sensitivity. It was an adjustment at first but after I noticed the improvement in her health it was all worth it. Of course we only have the gluten sensitivity and "some" dairy problems (if we eat too much too close together).

I am sure someone with more diet restrictions will be along soon to offer suggestions/help. I just wanted to let you know you are not alone and it does get easier!

[tarnalberry]

I don't have all those food allergies, having only been diagnosed (based on dietary results) with gluten intolerance. But I often avoid dairy, and don't always eat peanuts or eggs. I think the key - particularly for multiple food allergies - is to cook, cook from scratch, and get creative with cooking from scratch. :-)

When you make everything from whole foods, you know exactly what goes into what you're eating. And when you start doing that, you start searching out other types of foods that you might never have known about before.

For example, she's allergic to peanuts, but what about tree nuts? If that's alright, she could have almond butter on rice cakes (or, at her age, rice crackers). Are you sure that the soy milk you tried her on was gluten-free? Not all of them are. If it was a gluten-free brand, and she does truely have a soy allergy (though I'd get her tested for it, to be sure), then there is rice milk and almond milk that can serve for that liquid.

There are plenty of muffins that can be made without milk, eggs, or nuts, and getting creative with that can be fun. Of course, she can still have gluten-free pasta, and using nuts on it, or vegetables, or a bit of olive oil can be good. Bread is doable, but I've mostly not bothered with baked bread. I've gotten myself a dehydrator and make crackers/flatbread with nut meal (almond, again) and honey and quinoa flakes. (The one in there right now is made with pumpkin too.)

Basically, sticking to whole foods, and anything you make yourself, makes it a fair amount easier. I certainly don't feel deprived, and probably eat a greater variety of foods than people with NO dietary restrictions.

[ryebaby0]

My son was dx with celiac (which rules out dairy for the time being) and in hospital we discovered an egg allergy as well. He is 10, however, which makes it a little easier.

On a typical day he eats: gluten-free cinnamon toast, or EnviroKids Gorilla munch, or gluten-free toaster waffles and maple syrup PLUS a serving of some fruit and a glass of Pacific brand Rice Milk.

For lunch it's gluten-free grilled cheese (go get yourself something called RiceSlice -- lots of grocer's carry it now!) or a hamburger, or gluten-free chili, or a gluten-free hotdog (Oscar Mayer) with a serving of veggies, a little fruit maybe; some glutino pretzels, basmati rice with veggies, a baked potato, leftover gluten-free pizza (We like Ms. Roben's pizza crust mix).

For dinner he has what the rest of us eat, usually -- potatos, veggies, chicken, whatever, or we have pasta and I just make his separate (Rizopia is what they sell in stores here; I don't like the corn pasta but the brown rice/bran is good). For snacks he eats fruit or gluten-free brownies or popcorn or PhillySwirl bars. EnviroKids Koala Crunch (like cocokrispies) makes a nice snack too, or applesauce or mandarin oranges or Quaker Apple Rice Cakes.

Does that help? Isn't it awful at first? I felt like my head was going to explode, you have to grieve, and relearn all your cooking, and 80% of the "specialty" gluten-free breads STILL have egg in them. Egg Replacer works for some things, but we just gave up on bread. Miss Roben's has the easiest site for searching for multiple allergies -- www.missrobens.com

Good luck -- you can do this! It will get better! (And my son was, before and during hospitalization, having between 8 and 12 bms a DAY! )

[Mom22]

Our four year old daughter is also allergic to peanuts which can make things a little more challenging, but there are foods out there. I started with a basic diet and have gradually added new items once I found out they were gluten-free and nut free. She eats alot of whole foods. I would caution you that are many of the gluten free cereals that have nuts in the ingredients, as well as, the flours that have pecan meal in them. I just purchase flour at our health food store that doesn't have it and also get alot from the Gluten Free Pantry on line. Avoid soy as that is in the same food family as nuts. I also have the peanut allergy, as well, and it is life threatening for me. I don't have celiac just alot of foods allergies. It is overwhelming at first, however, it will eventually become second hand.

Mom 2 2 celiac children and husband is in process of being diagnosed.

[mat4mel]

Well, if she hasn't had the blood work done for Celiac yet, I wouldn't despair just yet. Food allergies can cause diarrhea as well. She could have celiac, yes, but first I would try doing a very very careful elimination diet of all of the foods you said that bother her (dairy, eggs, peanuts, and soy). Many people that cannot tolerate or are allergic to dairy can not tolerate soy either. You need to be very careful about checking labels. There are several places online that have lists of ingredients that could have hidden dairy, soy, eggs. Some very unlikely places can have dairy, like some lunch meats. If you aren't sure about an ingredient, I would skip it. Eat at home as much as you can so you are sure about the ingredients. This could take a few weeks to show improvement, so that her intestines have time to heal. In the meantime, you might try cutting out all fruit juices except for white grape juice, because they can aggravate diarrhea too. Once you get the hang on checking ingredients and figuring out what your dd likes, it *really* isn't that bad. If it is just allergies, she will likely outgrow some if not all of them. Hang in there!

Mel

[plantime]

I have celiac and food allergies. While most people are totally shocked at the extent of what I can not have, there really is a lot of what I can have. I use flours made from potato, quinoa, tapioca, beans, and corn; eggs for baking are replaced with ground flax or Ener-G's egg replacer; I just plain avoid all nuts; and when I was dairy-free, there was rice milk. Peanuts and soybeans are related, so an allergy to one often translates into an allergy to the other; same with eggs and chicken/turkey. I eat beef and pork for meat, with potatoes and veggies, and fruit for snacks.

I do agree with you doctor that juice is too much for a child with diarhhea. It causes the stool to be soft, which she does not have a problem with. As she is so young, she is still trying "new" foods. This is good, because you can just give her the foods she can have, and she will grow up eating right for herself. She will eventually try the foods she has not been able to have, and if they make her sick, she will know for herself what Mom was talking about!

[brookepalacio]

Thanks for the suggestions! But I think I didn't make myself clear on my last post. My daughter has had the blood test done. 2 out of 3 came back abnormal. We are now going to do some diagnostic testing (biopsy) next Friday. Her doctor is from England and is very familiar with the disease. I'm relieved to find so many people with the same questions. And so many people with intelligent answers. But to answer some questions: No, she can't have any tree nuts. Unless I shell them. And all of the rice cheeses I have came across have Casien (a milk protein) in them. Plus I believe Oscar Mayer hot dogs are a no no also. They have a milk by product in them as well. But thank you all for your help..I am sure I will have more questions.

[mat4mel]

Brooke,

Let us know how the biopsy goes.

Mel

[dana-g]

Brooke, my (gluten-free) heart goes out to you and your family...it just plain sucks, but the good news is that your dughter has an affliction that can be helped by dietary changes, not chemo, surgery, etc, and it helps to bear that in mind. My 11-year-old daughter and I are both celiac disease, and it appears as if my not being diagnosed until I was 46 has possibly damaged my liver, which has made me incredibly grateful that my daughter has been diagnosed early. Even though the gluten-free diet is a pain in the a** for a kid. And all her friends seem to be eating take-out pizza 24/7. And she's lost a half-dozen costly insulated lunch boxes since bringing her gluten-free lunch to school every day. And I need to get a part-time job to keep her in gluten-free chocolate chip cookies (they are so expensive!)

But the up side is that the younger your child is when Dx'd, the easier it is to steer them toward gluten-free/CF foods because they won't know anything else. And if the variety doesn't exactly resemble a Vegas-style buffet, don't panic. You'll get there

eventually. There are many cookbooks geared toward kids--google gluten free cookbooks.

Also bear in mind that there are parents of diabetic kids with celiac and autistic kids on gluten-free diets who also face a more demanding lifestyle than being gluten-free. I have gotten a lot of inspiration from these incredible people.

One thing that has really saved me is Danna Korn's book, Wheat Free, Worry Free. She also has a book called Kids with Celiac Disease. Her son was desperately ill as an eighteen month old. She offers the best advice I've ever heard on how to not just survive this, but THRIVE!

Again, Brooke, let me say I really sympathize with you...gluten-free is hard enough without CF and heaven knows what else. When you're the mom you are used to taking care of business! It's overwhelming to suddenly be put into a position where you feel like you can't even feed your kid, the most basic of all needs, and you can't take care of it! But once the shock of all this wears off, you'll find that there are plenty of resources out there. This website has a gluten-free safe foods list, and here is another:

Open Original Shared Link

Keep in touch and keep asking questions! Hang in there!

[dana-g]

Brooke, one more suggestion--this website has a link to support groups. There is an organization called R.O.C.K.: Raising Our Celiac Kids, that may have a group in your area and could really help you get a handle on this. You are not alone, by any means!

[coldkelly]

It is so much a matter of your frame of reference. I have 3 daughters that are diabetic- 2 have been on insulin since 20 months of age. One has just been diagnosed with celiac disease. Yes, it's inconvenient and I feel badly that she now has 2 issues to contend with, but I'm just grateful that it's not something worse and glad it can be managed thru' diet alone. I just wish her diabetes could be as well!!

[dana-g]

Right on about that! You have an admirable attitude! I am celiac disease, my 11-year old daughter is celiac disease, and my nine year-old son has a visual disability that required four surgeries and homeschooling...I figure my situation can always be worse than it currently is, my son could have been diagnosed with celiac disease, too! That would have really been a blow! You just have play the cards you are dealt. As Danna Korn says, "Don"t dwell on it, deal with it."

[brookepalacio]

Sincerest thanks for all the support again, guys. I feel a little more in control. I will let everyone know how the biopsy turns out. I need your prayers though. I still freaking out about the whole "putting her under" thing. I'm will try to pysch myself up until Friday. Brooke

[brookepalacio]

Hi everyone! Lola had her biopsy today and everything went great. Her doctor said her bowel looked normal but he is still waiting for the biopsy results for the complete diagnosis. Then he wants to make sure his colleague (sp?) agrees with his diagnosis. I thought that was cool. He is getting a second opinion for me. That's one thing good about living in Jacksonville..being real close to Nemours Childrens Clinic. He even gave me pictures of her stomach, bowel and rectum. All nice and pink...but pretty gross. I will touch base with you all when I find out the results on Thursday.

Brooke

Florida