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cdmom1

A Bit Overwhelmed, Son Newly Diagnosed With Celiac

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My 8 year old son was recently diagnosed with Celiac. At his 8 year check-up he hadn't grown much over the past year. My 9 year old daughter is on growth hormone therapy since she was growing slowly. She has been tested numerous times for Celiac, all negative. Being as she was so small, the pediatrician ordered a blood test for my son, expecting to see a hormone deficiency. Shockingly, he came back positive for Celiac. Another blood test plus a biopsy confirmed the diagnosis. We meet with the doctor and nutritionist this coming week. Until then, we were told to start eliminating gluten from his diet. I have made several trips to different stores, taking stock in gluten free items. I was amazed to find out how expensive these items are! From doing some research it does seem that some mainstream items are said to be safe, but without the gluten free tag, how safe are they really? I am concerned about cross contamination and not knowing that he is being subjected to gluten. He has never had any stomach problems, no vomitting, nothing to indicate something is wrong. Afraid he will be continually exposed and we will not know since he shows no signs of feeling bad.

Also, it seems that since he has started eating gluten free, he appears to have lost weight. Today, he put a few different bathing suits on and they were hanging on him. These are the same suits he has been wearing all summer. I thought he would gain weight over time, not start to lose weight he can't afford to lose. Is this normal to lose weight when changing the diet?

And, my son plays ice hockey on a travel team. From Sept-March, we are all over the place, leaving our house typically 5-6am every weekend along with tournaments in different places. We are on the road alot. Not sure how to handle eating out, especially on days where we are not home for breakfast and lunch. I am so used to picking up some bagels or donuts in the morning for something quick and easy, especially considering the hour we get up.Any suggestions on how to handle meals for a family on the go? Once Septemeber rolls around, between our weekend games, practice, my daughters activities and my husband and myself working full-time, it leaves very little time for cooking from scratch. Any thoughts would be greatly appreciated!

Sorry for the long ramble. Just new to all this and want to get a handle on it all sooner than later.


Jennifer

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Hi! I'm fifteen and I was just diagnosed a few months ago..I'm a dancer so I'm also very active.

It is hard for everybody and my mom always freaks out and makes sure I read everything to make sure I'm not eating anything that has gluten.

For on the road, nuts are great! I always keep little packets of nuts on me, they have a lot pf protein and are nutrient dense so that should help some. Also, going out to eat I normally order a burger or cheeseburger with no bun and a side salad or steamed veggies. If the restaurant has a dedicated fryer, he can eat frenchi fries with no worry of cross contamination. All kraft products label gluten if there is, so those yummy amercian slices are safe! Almost all ice cream is gluten free(except with cookie pieces or brownie). When I was little, my mom used to make me salads to eat in the car on the way to dance. It was the only salad I'd eat because she would put sliced strawberries, pecans, and feta cheese! Those little packets of carrots and ranch are always with me too!

go to

simplysugarandglutenfree.com

she has tons of recipes that you can make ahead of time and then take when you need!

hope this helps!

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You'll get it all figured out. One step at a time.

As for the weight. I am very very petite. I initially lost weight that most people would say I couldn't afford to lose but it was unhealthy weight from inflamation, constipation, etc. I was left thin but still healthy. I am still quite thin due to other health problems and genetics;)The guage that my doctor and I go by is energy level, strength and other due to the fact that I'm a woman;)As long as I have strength and energy and my body shows other signs of functioning well. As he heals he will eventually put that weight back on, especially as the body becomes more able to absorb nutrients that it is not able to absorb now due to villi damage. Just make sure he gets healthy, balanced meals. Enough fats and protein will held keep weight on and provide balanced energy and blood sugar.

We pack meals and take them everywhere. Many things taste just fine if the are served room temp and don't have to be warmed up-things that are well seasoned or fried or salty like hot dogs without the bun-we slice ours and pan fry, sometimes adding a splash of BBQ sauce or catsup at the end. Kiddo likes bunless cheeseburger patties-takes them for school lunch sometimes and eats them with a fork. If you need to you can warm up meals packed in tupperware in gas station microwaves. I know they're not the cleanest but I line the bottom with napkins and put napkins over top and all goes well. Those evenings after school are busy for us at times but I squeeze in prep and freeze sessions in the kitchen when I can. Even if I can just make a big batch of one thing once a week or twice a month I end up with a nice stash of things in time. My freezer stash includes homemade pancakes, muffins, sliced sandwich bread(My son likes Pamela's mix), homemade breaded chicken tenders or chunks or breaded fish portions, meatloaf made in muffin tins for individual portions that can just be warmed up and popped into a lunchbox...I bought individual pizza pans and bake off 4 at a time and freeze, that way I have a stash for school lunch or some even where pizza is being served.

I really try not to go crazy with gluten-free replacement carbs. I try and focus on fruits, naturally gluten-free recipes and desserts, jello, pudding cups, fruit leather etc. for snacks and lunchbox add ins, desserts etc. We made rainbow jello last Christmas instead of cookies and everyone, most importantly kiddo(12), loved it!

For grab and go breakfasts, cheese sticks, hard boiled eggs, fruit, juice or milk in a re-usable bottle, nuts, deli ham(Hormel Naturals). With the exception of the ham, these can all be purchased in a gas station convenience store, if need be or brought from home. I know the places along my most frequented routes and what is avaiable in a pinch.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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These are all very helpful ideas-thanks so much! The one thing I wish he could have would be nuts. Our house has always been nut-free, as my daughter has a nut allergy. I am sure it will all work out, and hopefully by September we will have it down so we can start the school year off with ease. Thanks again- truly appreciated:)


Jennifer

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Long answer, sorry for the extra blather, if it's not needed!

The first thing I would say is this: If you haven't done it before, I would seriously think about taking your daughter off of gluten too, just for a while, to see how she does off of it. If you or your husband haven't been tested, I would consider it, too. Out of people who are one degree removed from a celiac, 1 in 22 are also positive.

Your daughter seems like a good candidate for celiac disease that had a false negative on the test. False negatives for celiac disease, according to the NIH, are about 20%, if I remember correctly. False negative rates for children run higher than that. Even an endoscopy can be negative, because children can have damage in patches, so unless you get the right patch, the villi looks normal.

For my kids? My daughter - with no symptoms - came back positive for celiac disease (after I was diagnosed). My son (also 8), with low growth and a food allergy, came back negative. I ended up taking them both off of gluten. My non-celiac son? He'd always had a bit of a toddler tummy, which disappeared. For him, THAT was his weight loss at first. But they both lost a little bit, in the beginning.

He's a year into the diet now, and pants from last year are still big in the waist, because his tummy shrank. He could never have dairy before this, and after a month or so off of gluten, it didn't make him as sick as it used to, at all. A difference of vomiting after dairy to getting a little grumpy: HUGE change. His mood improved amazingly. He used to have screaming rages/crying jags for over an hour, and now his upsets lasts minutes. His growth is slowly picking up. He's like a different little kid.

Also, I know that studies have shown that children with celiac actually make a growth hormone inhibitor that affects how much growth hormone is released into the blood stream - there's an article on it here on celiac.com that I read a few months back, I believe (You can see why I'm wondering if your daughter might be a false negative?).

Okay, now about cross-contamination. I'm going to tell you my thoughts on this, which are not shared by everyone, I'll admit.

First, celiacs seem to vary in how sensitive they are. Some have outward reactions at lower levels of gluten than others, including lower levels than are legally considered gluten free (that's 20 ppm).

Second, the level of outward reaction (stomach issues, emotional issues, pain) does not correlate with how much damage is done to the villi during recent studies.

Third, there is neurological damage that some celiacs get from gluten (although there is argument about whether this is another issue, or part of celiac disease.). They don't necessarily get gut damage when they get the neurological problems. Doctors do not understand yet how exactly how that happens, just that gluten triggers it.

What this means to me? Doctors don't know enough about celiac disease to fully understand all the potential damage it might do to a celiac's body. They don't know what symptoms, yet, will tell us when severe damage is being done. And we know that at least some celiacs react to very, very little gluten.

So with all that, I have chosen to be very, VERY careful about cross-contamination with the kids. When they are adults, I figure they can choose how careful to be, but right now, I am trying not to get anything that is not specifically gluten free.

I think you are right about your concerns over how 'safe' the foods are. From what I've seen, most companies don't put gluten free on their label because they aren't quite confident enough on the complete lack of gluten to do it. They wanna avoid the lawsuit potential. gluten-free food sells to more people, after all. And I have reacted to quite a few foods that are supposed to be gluten-free, even without the gluten-free label. My kids and I have reacted to a few Gluten free labeled foods, as well.

Sometimes, I'll be honest, I want to be more lax. Just kind of assume that if a food doesn't have ingredients with gluten, it's okay. Or if the company claims it is gluten-free, that it really is. Sometimes I relax a bit and feed them under than assumption. But then I get that reminder and one of my kids will react to something that is supposed to be gluten-free. I'll go on-line and find others who have reacted to this food, too. Not always a lot, but enough that I think, again, of how careful I might need to be to ensure they don't have problems. And so I go into super-strict-mom-mode again.

I really, truly believe that is the best way for anyone with disease to be safe. My father and brother - who also came back positive to this disease - are more lax about checking for cross-contamination. They also get 'zinged' more often by gluten contamination, however. I keep thinking that my kids have this disease early on, so they have many more years to develop issues from getting zapped by gluten. That's one of the reasons I try to be extra cautious, even though it's a pain in the behind.

One thing that has been the hardest has been teaching them to wash their hands before they ever touch their mouth. Playdough, some powdered paints and glues, lipsticks and chapstick, their shampoo dripping over their face, the soap on their fingers - if it's gonna touch their hands (and then possibly their lips) or just their lips, then it has to be gluten free, or they have to wash every last scrap of it away. That's been tough for 'em. I understand that's one thing you have to make sure and convey to the schools, too, if they are not celiac knowledgable.

Take the lunchbox. If the lunchbox touches surfaces that have touched gluten, the outside is contaminated. Which means that picking it up and carrying it to a table can contaminate your child's hands, so he'll have to wash hands after carrying the lunchbox, but before eating. It's kind of like raw meat, to my mind. We touch raw meat, we wash our hands, the surfaces it touched, and the surfaces we touched with our 'raw meat' hands. Same pretty much applies to gluten, only we get to assume that EVERYONE'S hands are covered with our gluten 'raw meat,' because there is a good chance that they are. So everything anyone else has touched is possibly contaminated: door knobs, tables, clothing, light switches, serving spoons, you name it. And me and the kids have had a few reactions to things just this way, so it really can happen (we have a gluten free house, and people who eat gluten have come in, touched things, handed the kids things, and the kids don't wash their hands before touching their lips and suddenly, they get glutened)

Getting the kids to remember that, and simply wash hands and be safe, is one of the things that we're still working on after a year. But it does become second nature pretty quickly. It's just...annoying.

However, one bright spot is that most celiacs seem to become more sensitive to gluten once they go gluten free, so you do often get a clue-in that you've run across gluten. My daughter never had any tummy trouble, but after a few months, she had a definite stomach issue - pain and the runs - when she accidentally ingested gluten. It's very upsetting to see them feel bad, but at least it's a bit of a warning for us.

Also, if you google, you can find home tests for sale now to test a food for gluten. I am now going to get it after I read a recent report: a lot of whole grains and flours that would be good in gluten-free diets are also contaminated with gluten. Sorghum flour, white rice flour, soy flour, and buckwheat were some of the ones mentioned as failing the gluten free tests significantly. But current law says that since these grains are from 'naturally gluten free' foods, the companies packaging them can put gluten free on their label without testing the product. :angry:

I'm getting the home tests now (it's about $12 a test) to test some of our favorite brands and make sure they are safe.

For expenses, we've started simply working towards naturally gluten free foods - fruits, veggies, nuts and beans, whole grains, meats. That cuts the costs a lot. The gluten-free pastas and breads are crazy expensive, yes? Our grocery budget quadrupled, at first, until we cut things down. Even still, it's almost twice what it was.

For cooking, I'd haunt the food bloggers. A lot of them have quick meals with short ingredient lists that you can make gluten free without needing gluten free special ingredients. Crockpots are a godsend right now, I'll be honest. But eating will never be as easy, which I think I miss more than the gluten itself!! We end up using leftovers a lot, cooking twice the amounts for dinner so we can save some for later. We've abandoned the concept of 'breakfast foods' and simply have lighter meals for breakfast, often made up of ingredients from dinner or lunch the day before.

Bentos are nice, honestly. There are a lot of bento sites on-line, so many recipes available, and they typically have rice as the main grain staple, and if you get gluten free soy sauce, you can often make them without too much expense. They involve simple ingredients, often, and they can be very fun for the kids to get involved in. My kids are starting to really enjoy them a lot.

For travel, I'd invest in a good cooler. Eating out works all right for some, but I know of very few celiacs who don't get sick at least a few times if they are out and about a lot. We end up taking a LOT of food with us. I have a cooking day now where I try to make a bunch of snacks to take with us for any errands during the week. Or a cooking hour at night, when I'm running short on time. I used to do the same thing, just grab a bite out while we traveled, and I'll admit, that's been a difficult loss. I think every spare minute I had for the first few months was simply trying to find recipes on-line and in our cookbooks

Oh, as an aside? On-ling gluten free bloggers have been much more useful to me than any gluten-free cookbooks I've tried. I'd recommend them highly.

You can often get a microwave or fridge in a hotel if you have a 'medically restricted diet,' and many times it will be free, if it is needed for that reason. I know one gal who invested in a hotplate for traveling and they heat up water to make gluten-free porridge and such for breakfast.

Oh, and on celiac.org they have a section talking about tax deductions for gluten-free foods. You can have it because, again, it's for a medical necessity.

Sorry there's not more - my brain's giving out, LOL. But here's wishing you good luck in this new road. It's tougher, and frustrating, but rewarding as heck on seeing the little one's improve so much. They joy in that is beyond words, truly.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Thank you for all of your insight! I suspect my daughter has it as well, but it just hasn't shown up yet. She is doing great with her shots and showing a lot of progress, but I still think she potentially has celiac. As for the rest, I plan to be extremely cautious to avoid all possible contamination. I am thinking that once he is gluten free for a while, he may be more sensitive when exposed. Again, he never complains of pain, no stomach issues, very 'regular'. Perhaps with the change, I will be able to detect when gluten gets into his system.

Long answer, sorry for the extra blather, if it's not needed!

The first thing I would say is this: If you haven't done it before, I would seriously think about taking your daughter off of gluten too, just for a while, to see how she does off of it. If you or your husband haven't been tested, I would consider it, too. Out of people who are one degree removed from a celiac, 1 in 22 are also positive.

Your daughter seems like a good candidate for celiac disease that had a false negative on the test. False negatives for celiac disease, according to the NIH, are about 20%, if I remember correctly. False negative rates for children run higher than that. Even an endoscopy can be negative, because children can have damage in patches, so unless you get the right patch, the villi looks normal.

For my kids? My daughter - with no symptoms - came back positive for celiac disease (after I was diagnosed). My son (also 8), with low growth and a food allergy, came back negative. I ended up taking them both off of gluten. My non-celiac son? He'd always had a bit of a toddler tummy, which disappeared. For him, THAT was his weight loss at first. But they both lost a little bit, in the beginning.

He's a year into the diet now, and pants from last year are still big in the waist, because his tummy shrank. He could never have dairy before this, and after a month or so off of gluten, it didn't make him as sick as it used to, at all. A difference of vomiting after dairy to getting a little grumpy: HUGE change. His mood improved amazingly. He used to have screaming rages/crying jags for over an hour, and now his upsets lasts minutes. His growth is slowly picking up. He's like a different little kid.

Also, I know that studies have shown that children with celiac actually make a growth hormone inhibitor that affects how much growth hormone is released into the blood stream - there's an article on it here on celiac.com that I read a few months back, I believe (You can see why I'm wondering if your daughter might be a false negative?).

Okay, now about cross-contamination. I'm going to tell you my thoughts on this, which are not shared by everyone, I'll admit.

First, celiacs seem to vary in how sensitive they are. Some have outward reactions at lower levels of gluten than others, including lower levels than are legally considered gluten free (that's 20 ppm).

Second, the level of outward reaction (stomach issues, emotional issues, pain) does not correlate with how much damage is done to the villi during recent studies.

Third, there is neurological damage that some celiacs get from gluten (although there is argument about whether this is another issue, or part of celiac disease.). They don't necessarily get gut damage when they get the neurological problems. Doctors do not understand yet how exactly how that happens, just that gluten triggers it.

What this means to me? Doctors don't know enough about celiac disease to fully understand all the potential damage it might do to a celiac's body. They don't know what symptoms, yet, will tell us when severe damage is being done. And we know that at least some celiacs react to very, very little gluten.

So with all that, I have chosen to be very, VERY careful about cross-contamination with the kids. When they are adults, I figure they can choose how careful to be, but right now, I am trying not to get anything that is not specifically gluten free.

I think you are right about your concerns over how 'safe' the foods are. From what I've seen, most companies don't put gluten free on their label because they aren't quite confident enough on the complete lack of gluten to do it. They wanna avoid the lawsuit potential. gluten-free food sells to more people, after all. And I have reacted to quite a few foods that are supposed to be gluten-free, even without the gluten-free label. My kids and I have reacted to a few Gluten free labeled foods, as well.

Sometimes, I'll be honest, I want to be more lax. Just kind of assume that if a food doesn't have ingredients with gluten, it's okay. Or if the company claims it is gluten-free, that it really is. Sometimes I relax a bit and feed them under than assumption. But then I get that reminder and one of my kids will react to something that is supposed to be gluten-free. I'll go on-line and find others who have reacted to this food, too. Not always a lot, but enough that I think, again, of how careful I might need to be to ensure they don't have problems. And so I go into super-strict-mom-mode again.

I really, truly believe that is the best way for anyone with disease to be safe. My father and brother - who also came back positive to this disease - are more lax about checking for cross-contamination. They also get 'zinged' more often by gluten contamination, however. I keep thinking that my kids have this disease early on, so they have many more years to develop issues from getting zapped by gluten. That's one of the reasons I try to be extra cautious, even though it's a pain in the behind.

One thing that has been the hardest has been teaching them to wash their hands before they ever touch their mouth. Playdough, some powdered paints and glues, lipsticks and chapstick, their shampoo dripping over their face, the soap on their fingers - if it's gonna touch their hands (and then possibly their lips) or just their lips, then it has to be gluten free, or they have to wash every last scrap of it away. That's been tough for 'em. I understand that's one thing you have to make sure and convey to the schools, too, if they are not celiac knowledgable.

Take the lunchbox. If the lunchbox touches surfaces that have touched gluten, the outside is contaminated. Which means that picking it up and carrying it to a table can contaminate your child's hands, so he'll have to wash hands after carrying the lunchbox, but before eating. It's kind of like raw meat, to my mind. We touch raw meat, we wash our hands, the surfaces it touched, and the surfaces we touched with our 'raw meat' hands. Same pretty much applies to gluten, only we get to assume that EVERYONE'S hands are covered with our gluten 'raw meat,' because there is a good chance that they are. So everything anyone else has touched is possibly contaminated: door knobs, tables, clothing, light switches, serving spoons, you name it. And me and the kids have had a few reactions to things just this way, so it really can happen (we have a gluten free house, and people who eat gluten have come in, touched things, handed the kids things, and the kids don't wash their hands before touching their lips and suddenly, they get glutened)

Getting the kids to remember that, and simply wash hands and be safe, is one of the things that we're still working on after a year. But it does become second nature pretty quickly. It's just...annoying.

However, one bright spot is that most celiacs seem to become more sensitive to gluten once they go gluten free, so you do often get a clue-in that you've run across gluten. My daughter never had any tummy trouble, but after a few months, she had a definite stomach issue - pain and the runs - when she accidentally ingested gluten. It's very upsetting to see them feel bad, but at least it's a bit of a warning for us.

Also, if you google, you can find home tests for sale now to test a food for gluten. I am now going to get it after I read a recent report: a lot of whole grains and flours that would be good in gluten-free diets are also contaminated with gluten. Sorghum flour, white rice flour, soy flour, and buckwheat were some of the ones mentioned as failing the gluten free tests significantly. But current law says that since these grains are from 'naturally gluten free' foods, the companies packaging them can put gluten free on their label without testing the product. :angry:

I'm getting the home tests now (it's about $12 a test) to test some of our favorite brands and make sure they are safe.

For expenses, we've started simply working towards naturally gluten free foods - fruits, veggies, nuts and beans, whole grains, meats. That cuts the costs a lot. The gluten-free pastas and breads are crazy expensive, yes? Our grocery budget quadrupled, at first, until we cut things down. Even still, it's almost twice what it was.

For cooking, I'd haunt the food bloggers. A lot of them have quick meals with short ingredient lists that you can make gluten free without needing gluten free special ingredients. Crockpots are a godsend right now, I'll be honest. But eating will never be as easy, which I think I miss more than the gluten itself!! We end up using leftovers a lot, cooking twice the amounts for dinner so we can save some for later. We've abandoned the concept of 'breakfast foods' and simply have lighter meals for breakfast, often made up of ingredients from dinner or lunch the day before.

Bentos are nice, honestly. There are a lot of bento sites on-line, so many recipes available, and they typically have rice as the main grain staple, and if you get gluten free soy sauce, you can often make them without too much expense. They involve simple ingredients, often, and they can be very fun for the kids to get involved in. My kids are starting to really enjoy them a lot.

For travel, I'd invest in a good cooler. Eating out works all right for some, but I know of very few celiacs who don't get sick at least a few times if they are out and about a lot. We end up taking a LOT of food with us. I have a cooking day now where I try to make a bunch of snacks to take with us for any errands during the week. Or a cooking hour at night, when I'm running short on time. I used to do the same thing, just grab a bite out while we traveled, and I'll admit, that's been a difficult loss. I think every spare minute I had for the first few months was simply trying to find recipes on-line and in our cookbooks

Oh, as an aside? On-ling gluten free bloggers have been much more useful to me than any gluten-free cookbooks I've tried. I'd recommend them highly.

You can often get a microwave or fridge in a hotel if you have a 'medically restricted diet,' and many times it will be free, if it is needed for that reason. I know one gal who invested in a hotplate for traveling and they heat up water to make gluten-free porridge and such for breakfast.

Oh, and on celiac.org they have a section talking about tax deductions for gluten-free foods. You can have it because, again, it's for a medical necessity.

Sorry there's not more - my brain's giving out, LOL. But here's wishing you good luck in this new road. It's tougher, and frustrating, but rewarding as heck on seeing the little one's improve so much. They joy in that is beyond words, truly.


Jennifer

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Hi Jennifer

My daughter was diagnosed almost 2 months ago, so I know exactly how you're feeling. The first few wks I felt completely overwhelmed. Children's hospital in Boston puts out a great celiac disease on celiac disease in children that can be ordered online; they also did a "class" for newly diagnosed kids/parents of the kids that taught me all I needed to know about the gluten free diet. I wonder if the hospital that your GI is affliated with offers the same? Children's gave us a handbook that has been my bible for label reading.

As far as traveling goes, we've done quite a bit of that this summer. If its easy bagels that you want to reach for in the AM at those tournaments (I have 5 kids, two in travel club teams so I know the drill), Udi's makes AMAZING bread products. Most celiacs will concur that it is by far the best bread/bagels/muffins out there. You can buy them frozen and keep them in the fridge, which is what I do, but if you were traveling for a few days, the bagels would definitely keep and you could always give him one in the AM w/some peanut butter and a banana and there you have it. My 6 yr old is a fussy eater and has found a bunch of gluten-free foods and snacks that she really likes, including this little list below.

- Ian's Cookie buttons (come in snack packs)

- Envirokids chocolate rice krispy bars

- George's pizza, Joan's pizza

- Outback animal crackers in both choc and vanilla

- glutino pretzels

- Betty Crocker gluten-free cake, brownie and cookie mixes are great

- Cherrybrook or Pamela's pancake mix

= Bell and Evans gluten free chicken patties or tenders

= Annie's gluten-free mac and cheese

- Cinnamon Wheat Chex cereal

- Rice Krispy treats made with rice chex cereal instead of Rice Krispies (contains malt)

- Envirokids cereals

- Pirate booty and many Frito Lay products are gluten free (cheese puffs, cheetos, chips)

I've found that two months into the diet, the kid that wouldn't eat many foods is now trying new foods and liking them. She now likes turkey and mashed potatoes - amazing. I'm convinced that by taking the gluten out of her diet, she eventually lost the taste for it and now likes naturally gluten free foods. Hang in there, this will get easier. I never thought I'd say that, as many who read my June posts would attest! God bless, Emily

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Hi Jennifer

My daughter was diagnosed almost 2 months ago, so I know exactly how you're feeling. The first few wks I felt completely overwhelmed. Children's hospital in Boston puts out a great celiac disease on celiac disease in children that can be ordered online; they also did a "class" for newly diagnosed kids/parents of the kids that taught me all I needed to know about the gluten free diet. I wonder if the hospital that your GI is affliated with offers the same? Children's gave us a handbook that has been my bible for label reading.

As far as traveling goes, we've done quite a bit of that this summer. If its easy bagels that you want to reach for in the AM at those tournaments (I have 5 kids, two in travel club teams so I know the drill), Udi's makes AMAZING bread products. Most celiacs will concur that it is by far the best bread/bagels/muffins out there. You can buy them frozen and keep them in the fridge, which is what I do, but if you were traveling for a few days, the bagels would definitely keep and you could always give him one in the AM w/some peanut butter and a banana and there you have it. My 6 yr old is a fussy eater and has found a bunch of gluten-free foods and snacks that she really likes, including this little list below.

- Ian's Cookie buttons (come in snack packs)

- Envirokids chocolate rice krispy bars

- George's pizza, Joan's pizza

- Outback animal crackers in both choc and vanilla

- glutino pretzels

- Betty Crocker gluten-free cake, brownie and cookie mixes are great

- Cherrybrook or Pamela's pancake mix

= Bell and Evans gluten free chicken patties or tenders

= Annie's gluten-free mac and cheese

- Cinnamon Wheat Chex cereal

- Rice Krispy treats made with rice chex cereal instead of Rice Krispies (contains malt)

- Envirokids cereals

- Pirate booty and many Frito Lay products are gluten free (cheese puffs, cheetos, chips)

I've found that two months into the diet, the kid that wouldn't eat many foods is now trying new foods and liking them. She now likes turkey and mashed potatoes - amazing. I'm convinced that by taking the gluten out of her diet, she eventually lost the taste for it and now likes naturally gluten free foods. Hang in there, this will get easier. I never thought I'd say that, as many who read my June posts would attest! God bless, Emily

WHOOPS! I meant to say, that Children's hospital puts out a great DVD on Celiac Disease that can be ordered online.

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WHOOPS! I meant to say, that Children's hospital puts out a great DVD on Celiac Disease that can be ordered online.

Thanks, Emily. I am getting a handle on the food, I think. It is great to see all the ideas you and others have provided as far as the better brands of food. This will save a lot of wasted time and $$. When we are home it is pretty easy. It's planning ahead for when we are away for a few days that takes some thinking. One more list I will be making!


Jennifer

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