New diagnosis for kiddo

[Idaho mom]

Hi all.  I am new to this but was hoping I could reach out for some suggestions.  My 9 year old has just been diagnosed with non celiac and we are 3 weeks into this lifestyle change.  It is a challenge for our family to say the least but one I am truly hoping will lead to no more stomachaches, vomiting, headaches, fatigue, emotional roller coaster rides, etc etc.  Can any of you tell me the best apps or sites to determine what foods/ingredients are gluten free?  I think that is my biggest struggle right now - the words "spices" and "artificial or natural flavoring".  Also, can someone point me to good sites for kid and family friendly recipes that also taste good?  Thank you all for any help and support as we journey down this path.

[psawyer]

"Spices" allows for a long list of possible things, but none of them are grains, so no gluten in that ingredient. Flavoring rarely contains gluten. By law, wheat would have to be disclosed. Barley malt is expensive, so the manufacturer will boast of it rather than hide it.

[tessa25]

Here's a list of my favorites so far:

Note: insert the words "gluten free" in every item mentioned as some of the companies also sell non gluten free stuff. It's tedious to write that phrase all the time.

Get a chest freezer to store all of your frozen gluten-free foods. Makes things easier.

Bread: Canyon bakehouse without question is the most realistic tasting bread.
  Schar comes in a close second.
    Canyon bakehouse plain bagels are practically indistinguishable from regular bagels.
    Canyon bakehouse white bread makes fantastic toast. It has a very slight
                 sweet taste to it. My friend says it tastes like normal bread. The
                 only difference to me is the sweetness.
    Canyon bakehouse deli rye is great if you like rye bread sandwiches. Toasted is best.
    Canyon bakehouse multigrain tastes exactly like multigrain bread and does not need
                 to be toasted.
    Schar baguettes are fantastic.
    Katz makes an English muffin that, after toasted, reminds me of a real one provided
                 it has stuff on it like butter. I think that's the brand.
    Etalia has a good boule (sp?) if you prefer artisan bread.

Pizza crust:
    Shar makes a good thick and chewy crust.
    Udis makes a good thin and crispy crust.
    Etalia makes a great New York crust.

Pasta:
    Barilla makes the only good pasta that I know of. Spaghetti cooks the best.
    RP has a frozen pasta that I'm going to try next.

Flour:
    Pamelas all-purpose flour is great for making gravy and batter for fried foods.

Cereal:
    Envirokidz Gorilla Munch cereal is an equivalent to corn Pops.

Cookies:
    Glutino and Kinnikinnik make a decent Oreo equivalent.
    Mi Del makes a great ginger snap.
    Goodie Girl mint slims - fantastic girl scout mint cookie equivalent

Cake:
    Betty Crocker chocolate cake tastes the same, but you have to get the time
                exactly right. It is a very small window of time. Too long and it's too dry.

Frozen meals:
    Udi's Chicken Florentine is addictive and Broccoli Kale lasagna is a good white lasagna.

Restaurants (not from personal experience, just from research)
    Chinese – PF Changs. Employees are supposedly trained in gluten free.
    Burgers – In N Out. The only thing here that is not gluten free are the
                buns so it is very easy for them to do gluten free. They are
                also trained in it. They are only out west. Road Trip!
    Outback steakhouse. Employees are supposedly trained in gluten free. How
                good they are depends on where you live.

 

[kareng]

1 hour ago, Idaho mom said:

Hi all.  I am new to this but was hoping I could reach out for some suggestions.  My 9 year old has just been diagnosed with non celiac and we are 3 weeks into this lifestyle change.  It is a challenge for our family to say the least but one I am truly hoping will lead to no more stomachaches, vomiting, headaches, fatigue, emotional roller coaster rides, etc etc.  Can any of you tell me the best apps or sites to determine what foods/ingredients are gluten free?  I think that is my biggest struggle right now - the words "spices" and "artificial or natural flavoring".  Also, can someone point me to good sites for kid and family friendly recipes that also taste good?  Thank you all for any help and support as we journey down this path.

I agree with what Peter said.  Also, because he doesn't  actually have Celiac, you may not need to be as extremely careful as a Celiac.  That will make life much easier, especially when eating out or at parties, etc.

[Idaho mom]

Thank you all so much for the help!  And yes, we are very lucky that she does not have to worry as much about cross contamination as if she had celiac.  Although I was shocked as to how sick she became the other day after eating a snow cone of all things!  The gal did not think the syrup had gluten but within a half hour of eating it, my daughter had a severe stomachache with a headache followed by fatigue and crying off/on the rest of the day.  We are also only a few weeks into this and understand the first few weeks to months of being gluten free can be hard as the body essentially is cleansed of gluten and heals.  Anyway, Thank you all again for the advice and support!  The information is wonderful!

[kareng]

20 minutes ago, Idaho mom said:

Thank you all so much for the help!  And yes, we are very lucky that she does not have to worry as much about cross contamination as if she had celiac.  Although I was shocked as to how sick she became the other day after eating a snow cone of all things!  The gal did not think the syrup had gluten but within a half hour of eating it, my daughter had a severe stomachache with a headache followed by fatigue and crying off/on the rest of the day.  We are also only a few weeks into this and understand the first few weeks to months of being gluten free can be hard as the body essentially is cleansed of gluten and heals.  Anyway, Thank you all again for the advice and support!  The information is wonderful!

There likely was no gluten in the snocone.  But you might want to figure outj why she is  NCGI.  Maybe it's FODMAPS? Wheat is a high FODMAP food, but I think the snow cone is, too.  

You don't store gluten, so you aren't cleansing yourself of it.  Healing from Celiac damage does take time.  Depending on why you think she is NCGI, she may not need much time to heal.  It may just be a matter of getting her GI system regulated and working with the new normal diet

[Victoria1234]

King Arthur makes my favorite gluten-free chocolate cake

do not try the store brand Walmart version of gluten-free Oreo style cookies... they are awful.

Have you read the noob section yet? Has some great info on how to buy things and organizing the kitchen, and what to get rid of. 

Welcome!

[Idaho mom]

Kareng, you bring up an interesting question.  She sees a pediatric GI who diagnosed her with NCGI.  She tested negative on blood work and biopsy was negative 3 years ago.  She continued struggling with stomaches, vomiting, headaches, emotional behavior, fatigue or hyperactivity, constipation, etc.  he thought for sure she was celiac 3 years ago but tested negative.  When we returned for a follow up as the symptoms were increasing, he diagnosed the NCGI.  I do have to say besides the snow cone incident, she has felt better the last 3 weeks than in a long time.  Should I be looking for a second opinion?  I just want her to feel better.

[Jmg]

Hello

I also tested negative after being convinced it would be positive. If you're interested in learning more about NCGS I collected a few links here.

One thing I wanted to comment on is the idea that NCGS means you don't have to be as careful about slipping from the diet. My own experience is that very small amounts of cross contamination can cause symptoms to return. Mostly neuro rather than GI. Of course others may have different experiences, this condition is not yet fully understood. However this is what one of the leading researchers Umberto Volta says:

Quote

In my opinion, patients with non-celiac gluten sensitivity cannot tolerate gluten and cannot reintroduce gluten in their alimentation. Another important point is that of the small amounts of gluten for these patients represented by contamination in consuming food outside the home, probably, the majority of these patients do not tolerate small amounts of gluten presented by contamination. So, the situation is similar to those with celiac disease, probably not for the possibility of complications or major complications. But, because small amounts of gluten are able to cause the reappearance of symptoms.

The good news is all my symptoms resolve on the diet. Hopefully that will also be the case for your daughter too. You will both find things get easier as you get more used to the diet, better at reading labels and more comfortable with the 'safe' brands you get to know and trust. It will get easier for you both, just may be rough at the outset. 

Best of luck!