new here- LO with food allergies possible celiac/EE

Mbitner

Hi- LO has food allergies- milk protein, soy, carrots, and possible dairy.  Long story short- Aiden has some other medical conditions (we post a lot on special needs board).  Today he had his 2nd scope and biopsy to confirm or R/O celiac and EE. Specialists are pretty sure he has either or both of these.  They told us today that even if he does not have them we need to cut all soy and gluten out of diet bc he def has food sensitivities to them. So, we are going back on elecare and if dairy comes back neg for allergy then we will introduce it again.  But, I desperately need some easy/quick food ideas for toddlers that are gluten free and soy free (just to get me started).  He is a very picky eater!  We live 45 min away from a health food store- that carries a variety of these types of food.  I would like to make a stop there this week....but would like suggestions before I go.     Can you recommend any or any websites?  Thanks!! 

julandjo

Gluten free rice cakes or crackers (do not trust Quaker - buy one that's specifically GF, like Lundberg Farms, etc.), with Sunbutter on them

Lots of cut up fresh fruit

Gluten free pasta

EnviroKidz makes yummy prepackaged GF/SF cereal bars

Avocado

Homemade sweet potato fries, and baked sweet potatoes sliced into "coins"

Jell-O

For meals, the kids eat the same stuff I do (I'm very restricted due to Celiac, allergies and intolerances).  It's a lot of grilled chicken (cut into "spears"), steak, grilled hamburgers, broccoli, carrots, etc.  

For GF bread, UDI's is hands-down the best. You'll probably have trouble finding a prepackaged mix, like for cake, cookies, etc.  It seems a lot of them use soy.  You can find some great recipes online to make your own flour though.  Just be sure to read up on cross contamination - you'll probably roll your eyes and think "overboard!" like I did... until I found out I had Celiac myself.  Trust me, microscopic traces of gluten can and will make a Celiac MISERABLE.  Buy new baking pans, frying pans, cutting boards, strainers, etc. that will only be used for GF cooking, never use a wooden utensil that's ever touched gluten for his stuff, get him his own toaster, etc.  If it turns out he does have Celiac, treat gluten like a deadly poison - be aware of all crumbs, always wash your hands before handling his food, don't touch him if you've touched gluten, never share spoons, and so forth.

Lastly, good luck!  I hope you get some answers for your son, and that you get a plan that helps him! 

twoasone1

My son has EE.  With a soy allergy (which my son also has) you have to watch out for processed foods, almost all of them have soy in them in some form or another.  Also, I wouldn't spend a lot of money on a ton of food right now until you get the biopsy results.  If he has it, I would guess they are going to start him on a diet of only elemental formula for awhile to kind of clear his system.  Then they add one food back in at a time.  Like carrots for a few weeks and then if he is good with that, they will add one more in.  We are in the midst of food trials right now, and it takes awhile.  DS has to try one food every six weeks and then have another biopsy before we know if it is a safe food for sure or not.  Then, if it is, he can add another food for six weeks etc.  If it is a trigger food, we have to do straight formula for six weeks to clear his system and then try another food. 

There are a couple of us on here who are dealing with EE, please ask if you have any other questions and let me know what the biopsy results are.  Good luck and I hope it all comes back good for you and your LO.

Mbitner

julandjo:

Gluten free rice cakes or crackers (do not trust Quaker - buy one that's specifically GF, like Lundberg Farms, etc.), with Sunbutter on them

Lots of cut up fresh fruit

Gluten free pasta

EnviroKidz makes yummy prepackaged GF/SF cereal bars

Avocado

Homemade sweet potato fries, and baked sweet potatoes sliced into "coins"

Jell-O

 

For meals, the kids eat the same stuff I do (I'm very restricted due to Celiac, allergies and intolerances).  It's a lot of grilled chicken (cut into "spears"), steak, grilled hamburgers, broccoli, carrots, etc.  

For GF bread, UDI's is hands-down the best. You'll probably have trouble finding a prepackaged mix, like for cake, cookies, etc.  It seems a lot of them use soy.  You can find some great recipes online to make your own flour though.  Just be sure to read up on cross contamination - you'll probably roll your eyes and think "overboard!" like I did... until I found out I had Celiac myself.  Trust me, microscopic traces of gluten can and will make a Celiac MISERABLE.  Buy new baking pans, frying pans, cutting boards, strainers, etc. that will only be used for GF cooking, never use a wooden utensil that's ever touched gluten for his stuff, get him his own toaster, etc.  If it turns out he does have Celiac, treat gluten like a deadly poison - be aware of all crumbs, always wash your hands before handling his food, don't touch him if you've touched gluten, never share spoons, and so forth.

Lastly, good luck!  I hope you get some answers for your son, and that you get a plan that helps him! 

 

Thank you sooo much!  That is def a great start!  OMG- I had no idea how trace amounts could affect you.  Yikes!  Thanks for that info!  Aiden is not a great eater anyway- has lots of texture issues and has dysphagia (bc of his laryngeal cleft) so he cannot eat some foods like jello (foods that turn into a liquid before swallowing).  But, I am def going to try the rest. Thanks!    

Mbitner

twoasone1:

My son has EE.  With a soy allergy (which my son also has) you have to watch out for processed foods, almost all of them have soy in them in some form or another.  Also, I wouldn't spend a lot of money on a ton of food right now until you get the biopsy results.  If he has it, I would guess they are going to start him on a diet of only elemental formula for awhile to kind of clear his system.  Then they add one food back in at a time.  Like carrots for a few weeks and then if he is good with that, they will add one more in.  We are in the midst of food trials right now, and it takes awhile.  DS has to try one food every six weeks and then have another biopsy before we know if it is a safe food for sure or not.  Then, if it is, he can add another food for six weeks etc.  If it is a trigger food, we have to do straight formula for six weeks to clear his system and then try another food. 

There are a couple of us on here who are dealing with EE, please ask if you have any other questions and let me know what the biopsy results are.  Good luck and I hope it all comes back good for you and your LO.

Thank you!  I have a great support system of friends who also have kids with EE.  We are stocked up on elecare.    So, we def have that if we end up eliminating foods altogether for a while.  It will take at least 2 weeks to get biopsy results- delayed bc of holiday weekend.  So, I am going to try and get some things to try and to see what he may end up liking/tolerating.  Thanks for your info! Will def let you know if I have more questions!  Thanks!  

MeghanF13

Check your grocery store - many of them have gluten free sections in the organics area of the store.

try:

-quinoa rice cakes (or regular rice cakes, so long as they are just rice) with jam or sunflower seed butter on it.

- cut up fruit

- veggies

- gluten free veggie straws (we get these at Costco)

- dried fruits, like cranberries etc. - you can make a good trail mix with sunflower seeds, dried fruit, etc.

- gluten free cereal (we get a great one called Gorilla Munch - sweetened with cane suage juice)

 

Gluten free is hard because gluten is in so many things and not labelled as gluten. Avoid soya sauce, anything with yeast or malt....and not being able to have soy makes it hard too (I was going to suggest gluten free "shake n bake" tofu with dipping sauce......).

Celiac.ca is a great website for ideas and recipes. It will also tell you what to avoid and what is okay.

 

GOod luck! My brother has celiac and DH has severe food allergies, and I have an allergy to the cold. It's a wonder DD hasn't shown signs of any allergies yet. My parents raised my brother gluten-free in the 70s and there are definitely more options now.

Stay away from cereals you think would be gluten free (like Corn Flakes, Rice Crispies) because they have malt flavouring.

magdusia

hi.. i live pretty close to a couple of health food stores, but i still buy some stuff online. here are my favorite two stores.

https://www.allergygrocer.com/

https://www.edwardandsons.com/

one advice is to go alone... no kid(s).. it took me nearly 3 hours the first time i went w/o my kid to whole foods after my son's diagnoses.   You really need to take your time and read every label.

Mbitner

MeghanF13:

Check your grocery store - many of them have gluten free sections in the organics area of the store.

try:

-quinoa rice cakes (or regular rice cakes, so long as they are just rice) with jam or sunflower seed butter on it.

- cut up fruit

- veggies

- gluten free veggie straws (we get these at Costco)

- dried fruits, like cranberries etc. - you can make a good trail mix with sunflower seeds, dried fruit, etc.

- gluten free cereal (we get a great one called Gorilla Munch - sweetened with cane suage juice)

 

Gluten free is hard because gluten is in so many things and not labelled as gluten. Avoid soya sauce, anything with yeast or malt....and not being able to have soy makes it hard too (I was going to suggest gluten free "shake n bake" tofu with dipping sauce......).

Celiac.ca is a great website for ideas and recipes. It will also tell you what to avoid and what is okay.

 

GOod luck! My brother has celiac and DH has severe food allergies, and I have an allergy to the cold. It's a wonder DD hasn't shown signs of any allergies yet. My parents raised my brother gluten-free in the 70s and there are definitely more options now.

Stay away from cereals you think would be gluten free (like Corn Flakes, Rice Crispies) because they have malt flavouring.

Thank you so much!! 

Mbitner

magdusia:

hi.. i live pretty close to a couple of health food stores, but i still buy some stuff online. here are my favorite two stores.

https://www.allergygrocer.com/

https://www.edwardandsons.com/

one advice is to go alone... no kid(s).. it took me nearly 3 hours the first time i went w/o my kid to whole foods after my son's diagnoses.   You really need to take your time and read every label.

Thank you so much! Great advice. I can't take Aiden shopping with me anywhere anymore...especially for food shopping.