Is Endoscopy Needed For My 5 Year Old Daughter?

[theresa70]

As to how long it took my DD to start feeling better: She is 4, so I sometimes have to guess what is going on inside her head. She didn't have major GI issues prior to diagnosis, and we only caught the diagnosis through routine celiac screening because she has another autoimmune disease (type 1 diabetes).

 

However, for months before diagnosis, she occasionally mentioned "tummy aches" and she had basically no appetite. It was a nightly pitched battle to get her to eat anything at all for dinner. I think that within a week of diagnosis and going gluten-free, she was back to eating normal amounts of food, which is my best barometer for when she started feeling better. Actually, these days she's not just eating normal amounts of food, she is eating HUGE amounts of food . It has been so awesome to see, and it has made all the hard work and expense of the gluten-free diet seem totally worth it.

That is great. I can't wait to not hear, "my tummy hurts."  Last  nigth was the first night she went to sleep no problem and did not say her tummy hurts. But this morning she woke up saying it.  I put her in a warm bath and now she is running around. I started a food journal and a list of local restautrants that offer gluten-free menu items.

[mommida]

Udi's bread is fantastic!  (We couldn't eat it for years because of an egg issue.  We did the challenge, and have reintroduced eggs! )  There is still a time period of your taste buds adjusting.  At first I grilled or toasted all bread.

 

I always sent the kids with their own snacks.  The closer they got to friends, the moms learned and started having gluten free items too.  It does get easier!  More people are getting diagnosed and products are getting more mainstream.

[Cara in Boston]

I have not seen gluten-free lasagna noodles but we have figured out a few alternatives.  I ended up with what we call, "lasagna bake" . . . I make my regular lasagna filling, but layer it in the pan with cheese and gluten-free macaroni or other small pasta.  Our favorite WAS Ancient Grains Quinoa pasta, but lately we've been trying the new gluten-free options from the big brands and found Barilla to be our favorite.

 

I quickly put on several pounds by just swapping "regular" food for gluten-free versions.  Now we use primarily naturally gluten-free foods and it is working out better.  I definitely needed the gluten-free alternative food in the beginning, but over time, we have switched out diet to a more grain-free, vegetable based diet.  Now I make my lasagna filling but instead of using pasta, I layer it with thinly sliced zucchini or use it to fill roasted zucchini "boats" that I then top with sauce and cheese.  Making the shift gradually has worked for us.

 

Other simple changes:  

 

Since rolling enchiladas with a small corn tortilla was difficult, we now make it more like a lasagna, using corn tortillas as one of the layers.  "Enchilada Pie" is now a family favorite.

 

Lots of recipes that we once served over pasta (Chicken Cacciatore, Beef and Broccoli, Beef Stroganoff, etc.) we now just serve over brown rice.

 

I found LOTS of ideas and inspiration in cookbooks from the library.  There are lots of gluten-free cookbooks, but even more helpful were the ones focused on Low Carb or Paleo.  They had more options that didn't use a variety of hard to find flours and ideas about just thinking differently about food.

 

I also keep a few GoPicnic "meals" (snacks?) for emergencies.  He keeps some at school in case something happens to his lunch (left on the school bus) and we keep a few in the car when we find ourselves out of the house at mealtime.  They are also handy for sending with him to a friend's house at the last minute.  Not super healthy, but very convenient and he loves that they are sort of like "lunchables."

 

For his lunchbox, he likes variety.  (Older son who can eat anything takes the exact same thing to school every day - go figure)  I make big batches of "finger food" to freeze and each night we take something out and thaw it overnight for his lunch the next day.  Meatballs, chicken nuggets, pizza cups, corn-dog muffins, etc.  These alternate with other choices (yogurt, hummus, quesadillas, etc.) and give him lots of interesting options.

 

Since Joe is VERY sensitive to even the smallest amount of gluten, I always pack his food.  We've only eaten out at dedicated gluten-free places and have just recently tried California Pizza Kitchen (success!) so we are adding more options.  He takes his own treats to birthday parties and we keep a stash of treats at school for classroom celebrations.  We even bring our own food to Thanksgiving and Christmas with family.  It is just easier than having them try to make it gluten-free and risk being sick for weeks.

 

I'm glad he was diagnosed so early, this will all be "normal" to him.  I had a harder time dealing with it.  His comment, "mom, it's just food" makes me realize he is going to be just fine.

[Cara in Boston]

Just wanted to add two things:

 

Everyone in the family needs to be tested.  (That is how I found out I had it too.)  My older son is supposed to be tested every two years, sooner if we see any symptoms.  He had some weird tooth enamel issues and the doctor felt certain he would test positive but he was negative on both the blood tests and the endoscopy.  The doctor is keeping a close eye on him.  You, your husband, and any other kids you have should all be tested.

 

I use Pamela's baking mix as a substitute for most things (great for pancakes, etc.) but if I want to make a favorite cookie that we enjoyed "pre-diagnosis" I have had much better luck with the C4C (cup for cup) brand available at Williams Sonoma.  It is very expensive, so we save it for special occasions.  The mixes from Betty Crocker are pretty good - especially the brownies.  There is also a "Cake Doctor" book that uses only the gluten-free mixes . . . that has come in handy.

 

Check out some cookbooks that use coconut flour and almond flour . . . healthier options than using all the starchy combinations required by some of the gluten-free cookbooks.

[theresa70]

I have not seen gluten-free lasagna noodles but we have figured out a few alternatives.  I ended up with what we call, "lasagna bake" . . . I make my regular lasagna filling, but layer it in the pan with cheese and gluten-free macaroni or other small pasta.  Our favorite WAS Ancient Grains Quinoa pasta, but lately we've been trying the new gluten-free options from the big brands and found Barilla to be our favorite.

 

I quickly put on several pounds by just swapping "regular" food for gluten-free versions.  Now we use primarily naturally gluten-free foods and it is working out better.  I definitely needed the gluten-free alternative food in the beginning, but over time, we have switched out diet to a more grain-free, vegetable based diet.  Now I make my lasagna filling but instead of using pasta, I layer it with thinly sliced zucchini or use it to fill roasted zucchini "boats" that I then top with sauce and cheese.  Making the shift gradually has worked for us.

 

Other simple changes:  

 

Since rolling enchiladas with a small corn tortilla was difficult, we now make it more like a lasagna, using corn tortillas as one of the layers.  "Enchilada Pie" is now a family favorite.

 

Lots of recipes that we once served over pasta (Chicken Cacciatore, Beef and Broccoli, Beef Stroganoff, etc.) we now just serve over brown rice.

 

I found LOTS of ideas and inspiration in cookbooks from the library.  There are lots of gluten-free cookbooks, but even more helpful were the ones focused on Low Carb or Paleo.  They had more options that didn't use a variety of hard to find flours and ideas about just thinking differently about food.

 

I also keep a few GoPicnic "meals" (snacks?) for emergencies.  He keeps some at school in case something happens to his lunch (left on the school bus) and we keep a few in the car when we find ourselves out of the house at mealtime.  They are also handy for sending with him to a friend's house at the last minute.  Not super healthy, but very convenient and he loves that they are sort of like "lunchables."

 

For his lunchbox, he likes variety.  (Older son who can eat anything takes the exact same thing to school every day - go figure)  I make big batches of "finger food" to freeze and each night we take something out and thaw it overnight for his lunch the next day.  Meatballs, chicken nuggets, pizza cups, corn-dog muffins, etc.  These alternate with other choices (yogurt, hummus, quesadillas, etc.) and give him lots of interesting options.

 

Since Joe is VERY sensitive to even the smallest amount of gluten, I always pack his food.  We've only eaten out at dedicated gluten-free places and have just recently tried California Pizza Kitchen (success!) so we are adding more options.  He takes his own treats to birthday parties and we keep a stash of treats at school for classroom celebrations.  We even bring our own food to Thanksgiving and Christmas with family.  It is just easier than having them try to make it gluten-free and risk being sick for weeks.

 

I'm glad he was diagnosed so early, this will all be "normal" to him.  I had a harder time dealing with it.  His comment, "mom, it's just food" makes me realize he is going to be just fine.

Thanks so much. Is all rice gluten-free or do I need to buy the more expensive kind in teh gluten-free aisle?  I am going to try "lasagna bake" tonight.

[theresa70]

Just wanted to add two things:

 

Everyone in the family needs to be tested.  (That is how I found out I had it too.)  My older son is supposed to be tested every two years, sooner if we see any symptoms.  He had some weird tooth enamel issues and the doctor felt certain he would test positive but he was negative on both the blood tests and the endoscopy.  The doctor is keeping a close eye on him.  You, your husband, and any other kids you have should all be tested.

 

I use Pamela's baking mix as a substitute for most things (great for pancakes, etc.) but if I want to make a favorite cookie that we enjoyed "pre-diagnosis" I have had much better luck with the C4C (cup for cup) brand available at Williams Sonoma.  It is very expensive, so we save it for special occasions.  The mixes from Betty Crocker are pretty good - especially the brownies.  There is also a "Cake Doctor" book that uses only the gluten-free mixes . . . that has come in handy.

 

Check out some cookbooks that use coconut flour and almond flour . . . healthier options than using all the starchy combinations required by some of the gluten-free cookbooks.

Yes thanks we meet with her GI doctor next month and he will tell us what we need to get tested. We also have an 11 year old daughterl but she never complains of tummy aches or any other GI issues. But I think it will be important for her to have the blood test as well. I made Betty Crocker gluten-free Choc Cupcakes last night they were delicious.  The other day we went out to bkfst where they had the gluten-free menu items and my daugher had silver dollar pancakes made with almond flour and they were delicous!  I am hopeful that this will get easier.I am going to check out some cookbooks. 

[africanqueen99]

Tinkyada makes lasagna noodles.