Please Help

[drys]

My daughter has been recently diagnosed with Celiac disease along with allergies to peanuts soy wheat corn and wheat. She also has eosinphlic esophagitis currently on steroid for esophagus and Prilosec. We are all feeling overwhelmed I am hoping that parents with experience and similar diagnoses could help us. I need to know what I can feed my daughter kid friendly healthy foods. We meet with the dietician and allergist Thursday.

[StephanieL]

That is a LOT to take in at once.

 

How were all these things diagnosed?  I am assuming there was a biopsy for the EoE and Celiac Disease?

 

What about the allergy testing?  What symptoms were you seeing that lead to testing?  Was she eating those foods before with no issues?
 

Corn and soy are difficult and you are going to be cooking a lot.  What kinds of foods does she like?  Were you given epi pens and a food allergy action plan?

[nvsmom]

Welcome to the board, Drys.

 

Corn and soy are probably going to be harder to avoid than gluten. Corn is in most processed foods.  As StephanieL said, you`ll probably need to do more cooking and baking now.

 

You will find products and recipes that work for you but it will take a few months to settle into your groove. Luckily fries, homemade pizza and noodles are all fairly easy to do gluten-free. Chicken nuggets were harder for us to figure out but we found a recipe that the kids liked.  Meats, veggies, fruit and eggs are all easy safe foods for you, although I don`t know much about EoE so I don`t know what foods you`ll need to avoid.  There are a fair number of people around here with experience in that area though.

 

Don`t forget to test your entire family for celiac disease every two years if you are continuing to eat gluten.  Celiac has a genetic component and can show up at any time in one`s life and because you are 1st degree relatives your chances of developing celiac disease are about 1 in 10.

 

Best wishes

[mommida]

Hi!  Welcome to the board!

 

My daughter has been diagnosed with Celiac and Eosinophilic Esophagitis too.

 

We had to find my daughter's "triggers" by doing an elimination diet.  Some great companies for allergen free products... Enjoy Life (that's going to give her back chocolate when she has to avoid soy! the chocolate chips and boom bars are fantastic!) ,Cherrybrook Farms, some of the Go Picnic choices ~great for on the go and to always have a "safe" food pack on hand.  My favorite cookbook is The Allergen-Free Baker's Handbook (How to Bake Without Gluten, Wheat, Dairy, Eggs, Soy, Peanuts, Tree Nuts, and Sesame. by Cybele Pascal *You will have to substitute out any corn meal recipes or skip them*

 

Some other points to go over...

1 to ease the pain and discomfort of the damage in her esophagus ~ Slurpees/Icees, honey (this is also suggested as a type of homoepathic therapy.  The thinking behind it...  Local honey has "processed" all the local airborne allergens to a "non-reactive" product that has an antiviral and soothing properties).  Cucumbers.  My daughter's favorite go to food item is lettuce.  Think of foods that are cold, cool, and soothing like sorbets.

 

2 You need to keep a food and activity journal to try and find any "trigger" that can not be identified by allergy testing.  (Keeping in mind that once activated eosinophils stay active for up to 12 days) i.e. my daughter can not handle going into horse barns, so unfortunately horse back riding lessons are out.  Heavy abdominal workouts exacerbate symptoms, therefore gymnastics is also not a sport for her.

 

3 There is a list of "non-food" items that will be snacks for her.  These are lettuce, cotton candy, suckers/lollypops (refer to kids with allergies networks for additional lists and suggestions.  This is especially important if tube feeding becomes part of her healing process.  It is the proteins of the food that causes the reaction, so basic sugar or very simple proteins with low reactivity are best.  There are lists of "most non reactive foods" go back to "introducing foods to infants" lists.  Avocados are on the list and can add healthy fats back to her diet.  Bananas. great source of potassium

 

4.  Your doctor can prescribe amino acid formula shakes like Splash (taste like crap and have artificial sweeteners), but she might need them.  Maybe better options have been made. 

 

5  Looking for other food triggers, chick list of highest food reactivity.  (i.e. this is also the top 8 allergen list)  These are the foods with the most complex protein chains for the body to break down.  For some reason peas are a high link to EE.  This is very important to a person with Celiac as pea protein/ starch is used in gluten free products, especially Kinnicknick (probably spelled that wrong) brand.

 

6  Get a blood test to find out what vitamin and mineral defiencies she has right now.  It is very likely if you live in the mid-west that she is vitamin D deficient right now.  Some vitamin and mineral supplementation need to be doctor supervised.

 

7  Your mind set needs to be on foods she can eat!  Simple statement when you are freaking out by what she can't eat, but healthy positive attitude is key.  Celiac is lifelong and EE is a "mystery" which may have hope of growing out of. (it has airborne triggers for some and my be an environmental issue in part or whole)

 

Sorry for some of disjointed thoughts, but I just can't type fast enough to keep up with my brain. 

 

We have a bunch of "what can I eat geniuses" here on the board, so we can always find something for her to eat!

[StephanieL]

I don't think there are any GoPicnic's that are safe for gluten, soy and corn.  Many have corn syrup and a lot have soy in the gluten free varieties.  Also, some cherrybrook kitchens have soy lecithin.  Many people with soy allergies can do soy oil but not lecithin but you would need to check with your allergist.  

[mommida]

OOPs sorry about the cherrybrook suggestion the powdered sugar has cornstarch in the frosting mix.  I remembered it really caters to peanut free.  The chocolate and yellow cake mix is gluten, peanut, soy, and corn free.

 

Go Picnics seems to have some of the Enjoy Life products in it, you save more money packing your on snacks together anyway.

[mommida]

Some Home Free Mini cookies are free of gluten, corn, soy and peanuts.  They do have the CYA statement of made in a facility that also processes soy lecithin.

 

Chebe pizza crust mix

 

Annie's Rice pasta & cheddar mac n cheese *make sure it is the gluten free version as Annie's does make a few varities

 

some of the Namaste mixes will also be safe

 

123 gluten free sweet goodness pan bars mix is also safe (also mentions corn free baking powder in it's ingredients)

[squirmingitch]

Namaste products are free of peanuts, gluten, wheat, soy, corn, potato, tree nuts, dairy & casein. The Spice Cake mix is especially delicious! Here's a link to Namaste so you can see what they make. Lots of choices there!

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