Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

NewGFMom

New Diagnosis: A Little Overwhelmed

Recommended Posts

My son, who will be 4 in September, just tested positive on his celiac tests. His numbers were apparently very high. Our primary is referring me to a pediatric GI, so we'll get that going ASAP. But methinks we need to go off of gluten now. We have little almost no known history of this, but I am very familiar with this, because my best friend has been dealing with this for the last ten years or so. She just took me shopping and we got a bunch of stuff.

So, I'm trying to reach out to other parents a little further down the road with this to see if I could get some help.

We will likely become a gluten free household in the near future. My friend suggested it, and I think she's right that this needs to be his safe place. We will likely meet with a nutritionist once we have meet with the pediatric GI.

Prior to yesterday, when I got the call, my son's diet consisted of: Dairy products (milk, yogurt and cheese), pasta, crackers and fruit. He will not eat meat or beans.

I got a bunch of rice pasta and crackers and cereal. But this is going to be a rocky transition.

He and I tasted a bunch of the snacks we got today and most of them were pretty awful. A lot of gluten-free stuff, seems to leave out things he does not have a problem with (diary, soy) and tastes pretty foul to me. I am also not a huge believer that organics are much healthier than traditionally grown food and am resentful of the pricing.

I'm hoping that when his stomach feels better he will be more open to trying new foods. But like I said, this is going to be really hard.

I am a good cook and I love to cook and bake, so I would really appreciate some ideas for cracker and granola bar type alternatives.

Is there anybody else out there who's kid had to go from a diet based almost entirely of pasta, to a gluten-free one? Did your child try new foods after their digestive systems had a chance to heal?

Thanks so much in advance for any guidance on this.

-Margaret

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Prior to yesterday, when I got the call, my son's diet consisted of: Dairy products (milk, yogurt and cheese), pasta, crackers and fruit. He will not eat meat or beans.

I got a bunch of rice pasta and crackers and cereal. But this is going to be a rocky transition.

He and I tasted a bunch of the snacks we got today and most of them were pretty awful. A lot of gluten-free stuff, seems to leave out things he does not have a problem with (diary, soy) and tastes pretty foul to me. I am also not a huge believer that organics are much healthier than traditionally grown food and am resentful of the pricing.

-Margaret

I'm not a parent, but I just came across a cracker recipe, so I'll respond anyway :D

In terms of your son's diet consisting of dairy, pasta, crackers and fruit, you should be in pretty good shape for a transition. He can still have dairy, Tinkyada pasta is truly just as good as "normal" pasta, he can still have fruit....that just leaves crackers. Here is a recipe. I know I'm oversimplifying a little, but it isn't as difficult as it seems.

Pre-packaged, processed gluten-free food isn't necessarily more expensive because it's organic...much of it acutally isn't. It's more expensive because it appeals to a smaller market. You can still buy conventionally grown fruit, rice etc. I didn't heal until I switched to organic, so I have a hard time advocating that, but many here eat plenty of conventional, mainstream foods.

If you like to cook, you should adapt quickly. Good luck :)


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

Share this post


Link to post
Share on other sites

Earlier this year I was in your exact situation!!! My son had very high numbers from his blood work also. His pediatrician called me and told me that he has celiac disease, start the gluten free diet, and gave me a referral to a pediatric gastro. I followed her advice and started him on the diet. I cleaned out our home before I picked up up from daycare and headed to a health food store and spent lots of money on gluten-free food. He responded fantastically to the diet. No more diarrhea, he had a huge appetite, and he gained 3 pounds in the first month!!! When we made it to the gastro one month later he insisted that we do the gluten challenge (1+ month with lots of gluten) and do a biopsy. I told him that I wanted to think about it. It was a difficult decision, but I decided against the biopsy. There are plenty of false negatives and regardless of what the test would say I would keep him on the gluten free diet. That was our family's experience and I think that many families have had similar experiences. My point is that if you want/need the "official" diagnosis, you should not remove gluten from his diet until after the biopsy. Many doctors are realizing that the biopsy as the "gold standard" for diagnosis fails many people with the disease, but there are many more doctors stuck in the old ideology. What you do about the biopsy is a personal decision.

In regards to the diet, you may be surprised that it will go easier than you may think. Really. My son was 3.5 years old when diagnosed. He was a carb junkie! His diet consisted of pasta, cereal, crackers, chips, chicken, bananas, and dairy. I would advise you to wait a little while before introducing some of the more "different" replacement items, such as bread and crackers. At first you should start with mostly naturally gluten-free foods. Frito-Lay has a gluten-free list on their website and Lays Stax are made on dedicated lines. Yoplait yogurt will list their gluten. Most cheeses are gluten free. Kraft Global and General Mills (both encompass many brands--check their websites) will list all gluten in their labels. Gluten free pasta, especially Tinkyada brand, is very good. He won't even know the difference. I make my son spaghetti often and also homemade alfredo. The food 4 life brown rice tortillas make good quesadillas, or you could also use corn tortillas. Post fruity, berry, and cocoa pebbles are gluten free, and so are Dora cinnamon stars and trix cereal. Popcorn is usually gluten free--and so are Cracker Jacks! There are many options and you get to know them all in time.

I will also give you a list of some of my son's favorite specialty foods. The food is expensive enough without wasting money on food that he won't eat! ;) Kinnikinnick is a great brand. Many people like their bread. It's one of the best pre-made breads that they make. What we really like is their pizza crusts, doughnuts, cinnamon rolls, bagels, and Oreo-like cookies. They also make hot dog and hamburger buns. The Glutino cracker that look like Ritz are good. My son also likes Blue Almond Nut Thins. Vans makes good gluten free waffles. Pamela's makes good pancake mix. Many love Bell & Evans gluten-free chicken nuggets. It is do-able!

It's a good thing that you like to cook and bake! I convert most of my old recipes to gluten free. It is tricky at first, but you will get the hang of it. You have to use a mix of flours and a dough enhancer. This is nearly a universal mix: 3 parts white rice flour, 2 parts potato starch, 1 part tapioca starch/flour, and 1 tsp xanthan gum per 1.5 cups flour.

When you feel up to it here's the best recipe for bread. (It may take you a while to feel up to it.)

http://www.glutenfreeforum.com/index.php?showtopic=28633

You may also want to search the board about cross contamination.

It will take time, but your family will adjust. Feel free to ask lots of questions. This is a great resource.


Jenny

Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.

Household mostly gluten free since 3/07

Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic

Share this post


Link to post
Share on other sites

I like the bionature pasta. Tastes normal even to non-celiac family.

Personally, I buy the packaged foods out of convenience - not for taste. The homemade breads, cakes, pizzas taste much better.

Maybe once he starts feeling better he will be willing to eat more. He eats a pretty bland diet. Maybe his tummy is just really sore and he doesn't realize it shouldn't be that way?? Plus, he wont remember what he is missing being on the gluten-free diet. That means the things that taste gross to you might be pretty great tasting to him since he doesn't have anything to compare it to. (I can still taste good pizza and frozen ho-ho's..., but I have learned to like gluten-free pizza.)

Also, keep him on gluten until you see the gastro. If they do a biopsy, he needs to be eating gluten for a while first. (Plus your reaction to gluten gets pretty bad once it is removed from you system, so you are not going to want to have to feed him gluten for 6 months just for a test after being gluten-free for a month.)

good luck.

Share this post


Link to post
Share on other sites

Thanks so much for these great responses.

His numbers were high enough that I don't think I'd let them do a biopsy. But I think we'll be going in the next couple of weeks, and it takes months for the gluten to clear his system, doesn't it?

Poor little guy. :unsure:

-Margaret

Share this post


Link to post
Share on other sites

The K-Toos (Kinnikinnick oreo type cookies) are great, and so are the Envirokidz vanilla animal crackers (I think only the vanilla are gluten-free - they will say so on the box). Also, I like the Envirokidz cereal bars - they are made with rice cereal. My favorite is the peanutbutter but they have berry and chocolate too. You can also make krispy treats with Cocal Pebbles and Fruity Pebbles (both gluten free). My daughter likes the Dora cinnamon stars cereal too. My favorite cracker is Dr. Schars, but it is hard to find and expensive. The Blue Diamond nut thins are great - my daughter (2 1/2) loves these too. They have a lot of different flavors and are in the grocery stores (Kroger, etc.) in the health food/organic section (at least at mine). Pasta is easy - I just substitute any rice (or corn or quinoa) pasta and melt some velveeta and milk for mac and cheese. Most sausages/hot dogs that I"ve seen are gluten-free also, although yoiu must read labels b/c some aren't. You can do a lot of shopping at regular stores, and just go to Whole Foods or health stores (or order online - amazon has a great gluten-free selection!) for specialty things like flours. There is a lot of great info and recipes on this site. Keep reading and good luck!

Share this post


Link to post
Share on other sites

We were in the same situatuion a few months ago, however, at that time my sons diet was bread,bread,milk,cheese,crackers oh and did I say bread..... My son's tests came back inconclusive, our family also felt we didn't want him to go through the biopsy when the end result is going gluten free. After going gluten free I started to notice an intollerence to dairy. And then I read a ton of info and books and many celiacs are dairy intollerent too, especially for the first several months on a gluten-free diet.

For us finding a bread he would eat was difficult, because honestally most of them do not look or at all taste like regular wheat/white bread. Toasting it helped alot with the texture and they taste eventually grew on him and he will eat it not toasted now. Kinnickick (however it is spelled) has wonderful products...animal cookies,breads etc. For pasta my son switched over fine to the rice paste, however I personally prefer the texture of the corn pasta (he eats it just fine too).

Glutino makes some crackers that look simular to a ritz but crunchier.

My son wasn't eatting meat before either but now he eats chicken and loves it.

Since we have gone gluten-free my son eats so much more than his bread and water diet before.

Good Luck. You've come to a great site full of info.


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

Share this post


Link to post
Share on other sites

if the gi is going to do any further testing, he absolutely needs to continue eating gluten. it may take him months to recover from all the damage to his system, but it may not. and he'll stop producing antibodies to gliadin itself fairly quickly once he stops ingesting it.

as for foods - it takes a while to find the things you like. some internet shopping may be in order, even. but, mostly, sticking to things that are naturally gluten free is the best place to start, because - as you've found - many of the substitutions are weird at best. once he's 'lost the taste' for gluten, they become a little more palatable. ;) that, and baking your own. (there are lots of recipes in the recipes section on the forum.)


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

Share this post


Link to post
Share on other sites

99% of what we eat (dad and I) is gluten-free, or can be easily converted. I make a lot of chicken and veggies with rice or potatoes. I'd have to switch to organic chicken broth to get rid of the barley (chicken broth is a staple ingredient) or switch to tamari (wheat free) versus regular soy sauce. But my son has never, and will not touch what we eat.

We only started yesterday. He's existing primarily on yogurt at the moment. He doesn't like any of the gluten-free stuff we bought yesterday. (Envirokids cereals, etc.) He ate about three bites of the Annie's mac and cheese, had another yogurt and went to bed.

I just wish he ate 'real' food. I could feed him so well. :rolleyes:

In some ways, I think his pickyness will make this transition easier. When let loose on a buffet at a party, he will not eat anything. He always eats a separate meal from the rest of my family. Even my 14 month old daughter has no problem eating what I cook. But he hates it all.

But the household will be gluten-free within the next month or so, as we start moving the 'bad' cereals etc out. So, on the day he's looking at my plate of meat, rice and veggies and says, Can I try that? I can say Sure!

Made a gluten-free cake with him last night. It looks pretty good. It's a passover recipe that uses potato starch and a boatload of eggs. It's a lot like an angel cake, but it uses the yokes. I'll let you know how it came out.

Share this post


Link to post
Share on other sites

My whole family likes the Tinkyada brand and they have a version that has shapes (bunnies, trucks, rockets, etc.) that, of course, the kids think taste better. I have tried a couple of brands and I think the Tinkyada holds up better - some of them want to fall apart.

My daughter does not care for any of the bread that I have bought or made - she will tolerate it toasted. She has switched to rice cakes with peanut butter and loves them.

There is a great recipe for gluten free yellow cake on allrecipes.com which I have used to make cupcakes (they freeze well - don't ice first). The nice thing about making it from scratch is you can make 6 or 12 cupcakes and not have a bunch of extras that need to be eaten (and we can't let the kids have them so we finish them off ourselves. :rolleyes: )

Crackers have been an issue for us - we have wasted a lot of money on trials and errors. (If your friend will give you some samples of her items, it could save you a lot of money!) I do buy the Health Valley Corn Crunch-ems (corn chex) and Rice Crunch-ems (rice chex) and gluten free pretzels and make my own Chex Mix (use Lea & Perrins Worcestershire sauce also check the label of your seasoned salt). My daughter didn't think you could make that at home - I had to inform her that it used to be the only way you could get it! :P Some things by themselves are just horrible - Holgrain brown rice crackers (can you say cardboard?) but my daughter does like them with peanut butter or cream cheese on them.

There is also a recipe for mock goldfish crackers out there but I haven't tried it yet. I'm not sure of the address but just type it in your search engine.

Also, watch out for dairy for awhile. If he does have celiac disease, he may be lactose intolerant for awhile. He can take a chewable supplement whenever he has dairy. My daughter took the supplement for about 8 weeks before the doc said it was OK to quit.

Kids heal a lot quicker than adults so I will reiterate - if you're going to get the biopsy, wait on the diet change.

Also - have an emergency snack pack - in your car and at school (preschool). Have some basic prepackaged junkfood/candy (lunch box sized frito-lay chips, fritos, tootsie pops, fruit chews, etc) so that when something comes up, your kid is not left out. I can't tell you how many times I've run into somebody bringing a treat for everyone and it's not safe for your kid.

Good Luck,

Janet


Janet

Experience is what you get when you didn't get what you wanted.

animal0028.gif

Share this post


Link to post
Share on other sites
There is a great recipe for gluten free yellow cake on allrecipes.com which I have used to make cupcakes (they freeze well - don't ice first). The nice thing about making it from scratch is you can make 6 or 12 cupcakes and not have a bunch of extras that need to be eaten (and we can't let the kids have them so we finish them off ourselves. :rolleyes: )

Kids heal a lot quicker than adults so I will reiterate - if you're going to get the biopsy, wait on the diet change.

Also - have an emergency snack pack - in your car and at school (preschool). Have some basic prepackaged junkfood/candy (lunch box sized frito-lay chips, fritos, tootsie pops, fruit chews, etc) so that when something comes up, your kid is not left out. I can't tell you how many times I've run into somebody bringing a treat for everyone and it's not safe for your kid.

Good Luck,

Janet

Which yellow cake recipe is it? I saw one with mayonnaise on allrecipes. Can you link it for me?

We will not be doing the biopsy. My plan is to go gluten-free for a couple of months. If his stomach gets better, then we'll continue. If it doesn't, we can do some more invasive tests at that point.

Good call on the snack packs. And thank goodness tootsie pops are gluten-free. I hadn't checked yet and they're his absolute favorite. :D

Share this post


Link to post
Share on other sites
Which yellow cake recipe is it? I saw one with mayonnaise on allrecipes. Can you link it for me?

Yep, its the one with mayo - but what is mayo? - eggs and oil! Don't forget to check your mayo labels though. Kraft is good. In fact, overall, Kraft is a good company because they will identify gluten sources if they use them and not just the ambiguous "natural flavoring".

http://allrecipes.com/Recipe/Gluten-Free-Y...ake/Detail.aspx

The texture won't be quite what you are used to - a little spongier - but it tastes great and if you didn't know it was gluten free, you wouldn't guess. If you read through some of the reviews, people will share how they turned it into a chocolate cake recipe.

Don't forget to check your icings - I make mine from scratch - especially, if I'm only making a dozen cupcakes, I don't need to finish off a tub of icing (I could - I just don't need to). I do a variation of Wilton's buttercream.

Here is the link for the mock goldfish recipe. I haven't tried it yet (but all the ingredients are sitting in the fridge.)

http://www.missroben.com/id651.html

Janet


Janet

Experience is what you get when you didn't get what you wanted.

animal0028.gif

Share this post


Link to post
Share on other sites

I would not change his diet if youare going to a Gi. If he wants any testing done the results will br messed up.

I have a cook book with goldfish cracker recipes and alot of other recipes kids would like.

It is The Kid-Friendly Food Allergy Cookbook by Leslie Hammond and Lynne Marie Rominger

Karol mom to Billy

Share this post


Link to post
Share on other sites
Which yellow cake recipe is it? I saw one with mayonnaise on allrecipes. Can you link it for me?

We will not be doing the biopsy. My plan is to go gluten-free for a couple of months. If his stomach gets better, then we'll continue. If it doesn't, we can do some more invasive tests at that point.

Good call on the snack packs. And thank goodness tootsie pops are gluten-free. I hadn't checked yet and they're his absolute favorite. :D

We used that cake recipe that called for the mayo but replaced the mayo with oil. It turned out wonderfully! I also hate to reiterate this, because you're probably sick of hearing it, but if you ever think that sometime in the future you may want a biopsy, you really might want to wait to do the gluten free diet. Maybe call the gi and see if they'll schedule the biopsy right now. I say this because we ran into a similar problem. I was just diagnosed with Celiac disease and so we tested my kids. My 4 year old's tests were positive and, because I knew how to do the diet, her doctor said to go ahead and follow it. Two weeks later, the gi told us we had to go off it for two months so we could do the biopsy. Apparently kid's tummies really can heal enough in two weeks that the biopsy might be negative. His concern was that kids eventually want 100% proof that Celiac is really what they have. He said that they particularly have trouble when they're teenagers. Now once we put Emily on gluten again, she started getting headaches and feeling tired. So we decided that we just weren't going to do the biopsy. But I know that if the gi had told us to wait until we could get the biopsy done in the first place (before we started the gluten free thing), I would have wanted to biopsy. So I guess that's the ultimate question. If you think you'll ever, ever want that biopsy, it might be a good idea to hold off on the diet. One really good hint that was given to me when I decided to not do the biopsy: some gi docs won't give the diagnosis of celiac disease without the biopsy, but schools need the diagnosis if you want them to give your child gluten-free foods. Somebody suggested that I ask our doc for a diagnosis of gluten sensitivity if he wouldn't give one of Celiac disease. That way the schools will still be legally bound to abide by your child's dietary restrictions.

Good luck on your search for food!

Lamp

Share this post


Link to post
Share on other sites

Yeah.. I go back and forth on the biopsy thing. But he's in pain right now, and I just can't sit back and do nothing when three separate blood tests (I think there's three) came back positive for celiac disease. Our doctor said they weren't even close to normal.

I feel like it's irresponsible to hold off when I know how to do this. I know it's not all rational, but the protective parent in me can't give him something that may be hurting him. It won't hurt him to pull the gluten from his diet, but it will hurt him to continue it if that's what it is.

And we tried the Tinkyada pasta tonight. He ate two bowls of it and I almost wept. I think it's better for him than what he was eating before. :D

What percentage of false positives to they get on the blood tests when followed by a biopsy? Does anybody know? I'm even curious about anecdotal evidence of people with highly abnormal bloodwork, that did the biopsy and turned out they don't have celiac?

Share this post


Link to post
Share on other sites

I think if you do the biopsy when he is four to so you can prove it to him when he's a teenager you're in for a world of disappointment! I bet you're young enough to remember being a teen. I was shown PHOTOGRAPHIC evidence of things and was still able to argue! :P I don't think a healthy, strong teen (which he will be if he stays gluten-free) could ever resist trying glutnen out just to make sure you weren't pulling his leg. Maybe that would be a good time to do a challenge and biopsy? ;)

Keep reading this board. People tell lots of stories of complete turnarounds in their children's health. It is truly heartbreaking to think of how the little ones suffer without the words to describe it. :( The school issue can be worked out with help from your pediatrician.

Good luck!

Share this post


Link to post
Share on other sites
Yep, its the one with mayo - but what is mayo? - eggs and oil! Don't forget to check your mayo labels though. Kraft is good. In fact, overall, Kraft is a good company because they will identify gluten sources if they use them and not just the ambiguous "natural flavoring".

http://allrecipes.com/Recipe/Gluten-Free-Y...ake/Detail.aspx

The texture won't be quite what you are used to - a little spongier - but it tastes great and if you didn't know it was gluten free, you wouldn't guess. If you read through some of the reviews, people will share how they turned it into a chocolate cake recipe.

Don't forget to check your icings - I make mine from scratch - especially, if I'm only making a dozen cupcakes, I don't need to finish off a tub of icing (I could - I just don't need to). I do a variation of Wilton's buttercream.

Here is the link for the mock goldfish recipe. I haven't tried it yet (but all the ingredients are sitting in the fridge.)

http://www.missroben.com/id651.html

Janet

I think I made a chocolate mayonnaise cake once when I was a kid. It was pretty good. I was just a little surprised to see it in a gluten-free recipe because a lot of mayonnaise has unexpected ingredients, like soy in it. I wasn't sure if it had 'modified food starch' either.

As for frosting, I am the Queen of scratch frosting. I am not too proud to dip a spoon into a jar of Betty Crocker from time to time. But I really like my own stuff the best. B)

Share this post


Link to post
Share on other sites
I think if you do the biopsy when he is four to so you can prove it to him when he's a teenager you're in for a world of disappointment! I bet you're young enough to remember being a teen. I was shown PHOTOGRAPHIC evidence of things and was still able to argue! :P I don't think a healthy, strong teen (which he will be if he stays gluten-free) could ever resist trying glutnen out just to make sure you weren't pulling his leg. Maybe that would be a good time to do a challenge and biopsy? ;)

Keep reading this board. People tell lots of stories of complete turnarounds in their children's health. It is truly heartbreaking to think of how the little ones suffer without the words to describe it. :( The school issue can be worked out with help from your pediatrician.

Good luck!

Perhaps they will change my mind when we go in. I am trying to keep an open mind. However, I can not fathom putting my kid under general anesthesia when I can just change what he eats and see if that helps his constant stomach ache.

I know that kids with diabetes rebel when they are teens and that it's just part of the process. And they have all the evidence in the world that they have that disease. So, I can't see a celiac teen being any different, regardless of whether they had a surgical procedure that they can't remember.

I'm not too worried about school. SO many kids have weird, life threatening food allergies where I live. I know 2 kids (not related to each other) that have an anaphylactic reaction to milk. (unlike celiac disease a lot of kids outgrow that one) I'm pretty much resigned to making him lunches until he's old enough to do it himself.

Share this post


Link to post
Share on other sites
Yeah.. I go back and forth on the biopsy thing. But he's in pain right now, and I just can't sit back and do nothing when three separate blood tests (I think there's three) came back positive for celiac disease. Our doctor said they weren't even close to normal.

I feel like it's irresponsible to hold off when I know how to do this. I know it's not all rational, but the protective parent in me can't give him something that may be hurting him. It won't hurt him to pull the gluten from his diet, but it will hurt him to continue it if that's what it is.

And we tried the Tinkyada pasta tonight. He ate two bowls of it and I almost wept. I think it's better for him than what he was eating before. :D

What percentage of false positives to they get on the blood tests when followed by a biopsy? Does anybody know? I'm even curious about anecdotal evidence of people with highly abnormal bloodwork, that did the biopsy and turned out they don't have celiac?

I thought docs accepted the blood tests now in lieu of the biopsy now. My Mom's doc did for her, although that could be because I had already been diagnosed via biopsy. But after 3 blood tests, I'd consider that pretty solid.

It sounds like your kid may like smooth-mild-creamy flavors. Have you tried him on the AltoPlano Gold instant quinoa hot cereal? The Apple Spice flavor is yummy and it's very nutritious. ( http://altiplanogold.com/nutrition.html ) If you want to try it on him before you do mail order, send me a message with a mailing address and I'll mail you a package in a ziploc. I just got an order of several boxes. My Mom and I love the stuff and it's good with fruit, nuts or maple syrup added. I got Variety packs so if you think he'd like the Chai-Almond or Orange Date better (or even the plain) let me know. I've given away so many samples, they ought to give me freebies, but everyone that's tasted it has liked it. It's kind of like Malt-O-Meal or cream of wheat in texture.

I don't know if your kid would like the Wellshire Farms dinosaur shaped chicken nuggets but I thought they were great! My co-workers used to tease me about eating them at lunch but I told them to hush before I sicced my T-Rex on them. :-) I pick them up at Whole Foods.

http://www.glutenfreemall.com/catalog/well...unit-p-337.html

Also, kids love to dip stuff. Can he have apple slices and peanut butter? That's a favorite at my office among those of us in our second childhood. :-)

Does he like vienna sausages? Those taste creamy and mild. I loved them as a kid and still do, I just looked at the fat grams one day and said YIKES! Hormel brand is gluten-free. They also make a good chicken and rice microwavable meal. http://www.hormel.com/faq/faq.asp?id=37072...uerytext=gluten


Karen B.

diagnosed with Celiac Nov. 2003

Share this post


Link to post
Share on other sites
I thought docs accepted the blood tests now in lieu of the biopsy now. My Mom's doc did for her, although that could be because I had already been diagnosed via biopsy. But after 3 blood tests, I'd consider that pretty solid.

It sounds like your kid may like smooth-mild-creamy flavors. Have you tried him on the AltoPlano Gold instant quinoa hot cereal? The Apple Spice flavor is yummy and it's very nutritious. ( http://altiplanogold.com/nutrition.html ) If you want to try it on him before you do mail order, send me a message with a mailing address and I'll mail you a package in a ziploc. I just got an order of several boxes. My Mom and I love the stuff and it's good with fruit, nuts or maple syrup added. I got Variety packs so if you think he'd like the Chai-Almond or Orange Date better (or even the plain) let me know. I've given away so many samples, they ought to give me freebies, but everyone that's tasted it has liked it. It's kind of like Malt-O-Meal or cream of wheat in texture.

I don't know if your kid would like the Wellshire Farms dinosaur shaped chicken nuggets but I thought they were great! My co-workers used to tease me about eating them at lunch but I told them to hush before I sicced my T-Rex on them. :-) I pick them up at Whole Foods.

http://www.glutenfreemall.com/catalog/well...unit-p-337.html

Also, kids love to dip stuff. Can he have apple slices and peanut butter? That's a favorite at my office among those of us in our second childhood. :-)

Does he like vienna sausages? Those taste creamy and mild. I loved them as a kid and still do, I just looked at the fat grams one day and said YIKES! Hormel brand is gluten-free. They also make a good chicken and rice microwavable meal. http://www.hormel.com/faq/faq.asp?id=37072...uerytext=gluten

Before this, my son would eat the following (this is a very short list)

Oatmeal (very rarely)

Life Cereal and Apple Jacks

Apples, Strawberries, Raspberries, Apples and Mangoes

Pasta (with butter or Annie's cheese sauce, not with red sauce)

spaghettios

Sourdough Bread/Baguettes (only the insides)

Muenster Cheese

Saltines

raisins

apple sauce

And for sweets, he mostly likes Popsicles and lollipops. He likes chocolate chips better than chocolate chip cookies. :D

I am really hoping he'll start eating meat, rice and potatoes once his tummy feels better. But 2 days into it, there is no improvement. (Not that I expected it, but I was sure hoping!)

I will definitely take you up on your offer for the Quinona cereal. He does like oatmeal sometimes, so that might work.

Thanks so much for your info on the gluten-free sausage. Since the household will be transitioning to gluten-free over the next month or so it's GREAT info to have.

I'll e-mail you off-line with our info. Thanks so much!!

-Margaret

Share this post


Link to post
Share on other sites

My son had very high numbers on his blood test.TTG 156 and then a neg. biopsy.

4 years later got sick and missed over 2 months of school and got a positive biopsy.

Diagnosing can be tricky.

Karol

Share this post


Link to post
Share on other sites

Hi,

You have been given some great advice already. I don't have much to add. Our favorite brands are Tinkinyada pasta, Kinnickinick breads, cookies, bagels, El Peto pancake mix.

Good Luck

Natalie


Endoscopy May 23,2007 - positive

Entrolab Dec 2006:

Fecal Antigliadin IgA 209 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 35 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 371 Units (Normal Range <300 Units)

Fecal anti-casein (cow

Share this post


Link to post
Share on other sites
My son had very high numbers on his blood test.TTG 156 and then a neg. biopsy.

4 years later got sick and missed over 2 months of school and got a positive biopsy.

Diagnosing can be tricky.

Karol

My daughter also had a conclusive blood test yet the biopsy was inconclusive. The doc still made the celiac diagnosis based on the blood test (which is very accurate at this point) and protein, calcium, and iron deficiencies (showing malabsorbtion), and problems digesting sugars (more than just lactose) (indicating damage to the villi - somewhere). Per the doc, Celiac can be patchy and you need to have an adequate number (5-6) of samples from the small intestine. When my daughter had her biopsy, he didn't actually think she had celiac, he thought she had Esenophilic Esophogitis and took only two samples in the small intestine (since he was in the neighborhood so to speak and you don't want to do a second endoscopy if you don't have to).

His opinion is that the current blood test is so accurate, that within the next ten years or so (as the data proves it out), they will no longer need the biopsy. The blood test that they used prior to this (I don't know how long ago) was not nearly as accurate and a biopsy was mandatory because there were too many false positives.

With me grasping at straws that this might not be true (My daughter's symptoms were acid reflux/spitting up - that's it), I asked him if it was HIS daughter (my standard way of phrasing things and I know he has three daughters), would he do a gluten challange, afterall, her biopsy WAS inconclusive. His advice was no, not now. That psychologically, it would be easier for her to stick to the diet than to have foods removed from her diet, then allowed to eat them, and then taken away again. When she's older (12-14) and has the maturity to understand the test and give good feedback on her symptoms, we MAY want to try it then but he's convinced she has it and that would be only for our peace of mind and maybe at that point to teach her that she really has it (that last part was from me, not him, based on some of the things I've read about teenagers!).


Janet

Experience is what you get when you didn't get what you wanted.

animal0028.gif

Share this post


Link to post
Share on other sites

That's exactly where I'm at. They should be scheduling the GI visit today I told them I had pulled the gluten, so they'd better make it soon. It seems like a lot of parents of preschoolers really balk at the biopsy, so I'm sure they won't be surprised by my bias walking in the door. To me, going gluten-free is much less invasive then getting general anesthesia, etc.

If he were a ten year old with this diagnosis, I think I'd be much open to 'conclusive' testing. But at this point, it doesn't seem worth it. But once he's old enough to make a rational, informed decision about this, we can undergo the challenge if he wants to.

Right now, he just wants his stomach to feel better. He is totally not a food person, so this isn't a huge transition. He only needs about five foods that he likes and he's a happy camper. And I think I have to write a love letter to Tinkyada because their pasta is really good. I covered it in pesto and brought it to a party yesterday and nobody knew the difference.

We live just outside of Boston and it looks like Children's Hospital has a whole program dedicated to pediatric celiac disease. So, I'm feeling very lucky that we caught it this early, and that there is such a great resource close to home.

Share this post


Link to post
Share on other sites