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    Do you have questions about celiac disease or the gluten-free diet?

Slamey24

I Need Some Advice

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Hi,

I'm new here and I don't even know if I belong here. I know that probably sounds just a little confusing but, well, welcome to my life! :P I have a 1 year old son, Dylan (or Dyl, as we like to call him) and he has had problems since the day he was born. It seems like just as he was outgrowing his colic (at about 4-5 months) he started in with a whole new kind of cry. He is almost never a happy baby. He cries all the time, still doesn't sleep through the night, and his tummy swells up so bad at night, he looks like he's about to burst. His dr has tried different things with his diet (dairy free, less fat...) and has just recently put him on a gluten free diet. I think she's not really sure how to handle this because all she said was, "No wheat for 3 weeks". She is wondering if he might have celiac disease. So I came home and basically cut all wheat out of his diet. Every chance I get I try to research celiac disease on the net and I'm finding new things about the diet changes I should be making. I'm a little confused, and I would love some advice on exactly what he should or shouldn't have. He's so small for his age (in height and weight) that people ask if he's...a midget, old enough to be walking, and old enough to be talking. He really can't afford to lose any more weight than he already has but his dr keeps putting it off. He bounces back and forth between the 5th and 20th percentile on the growth chart and can wear a size 3-6/6-9 months at 20 months. I've heard that the longer a person with a sensitivity to gluten is exposed to it, they have less of a chance at reaching their full genetic height. Please tell me what I should try to make him the happy, healthy baby he deserves to be! Thanks a lot!

Amy

P.S. Sorry about the long story, I often have a hard time keeping my mouth shut as well :wacko:

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you are in the right place.

anything with wheat, rye, barley, or oats needs to be cut out. There is a pretty good list on this site of forbidden ingredients. (I don't have a link to it, but it comes up if you search)

you need to be sure to read everything. Unless it is fresh meat (not smoked or lunch meat, but real straight off the animal meat) fresh veggies, or fresh fruit, then you need to read whats in it. It will take a while to figure out what he can and can't have, but if this helps him it is really really worth it.

My daughter was 24 pounds at 9 months and then down to 11 by a year because of celiac, when we switched her to gluten free, she got back up to 20lbs in only 6 months.

Ask your doctor about pediasure, it can help fill in gaps of nutrition for a few weeks while you find out how to feed him.

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http://www.kinnikinnick.com/

This site has great gluten free foods. Best to stick with labeled GLUTEN FREE products at first so you can see if there's an improvement in your child. Even tiny crumbs cause a full reaction. No improvement unless 100% gluten free. Check his shampoo and lotions as well. Do not stir your gluten full noodles with the same spoon you stir his gluten free noodles with... that will make the diet useless. Gluten is gluten no matter how small an amount. Tinkyada pastas are the best. Stores like Wholefoods carry nice lines of gluten free treats for young kids.

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you are in the right place.

anything with wheat, rye, barley, or oats needs to be cut out. There is a pretty good list on this site of forbidden ingredients. (I don't have a link to it, but it comes up if you search)

you need to be sure to read everything. Unless it is fresh meat (not smoked or lunch meat, but real straight off the animal meat) fresh veggies, or fresh fruit, then you need to read whats in it. It will take a while to figure out what he can and can't have, but if this helps him it is really really worth it.

My daughter was 24 pounds at 9 months and then down to 11 by a year because of celiac, when we switched her to gluten free, she got back up to 20lbs in only 6 months.

Ask your doctor about pediasure, it can help fill in gaps of nutrition for a few weeks while you find out how to feed him.

Oh my gosh, I bet you were so scared that she got so small. Dylan sticks right around the 21-22 pound mark but if he gets sick, then he usually loses a pound or so. He'll be 2 in March and is still in a size 1-2 diaper. I'm definately going to search for the list of ingredients. I'll print it and wallpaper my house with it. Every time I go to feed him something I feel unsure about if it's safe. He swelled up so bad last night and still is today. Someone told me to take him off of dairy for right now too. Do you think I should? He seemed to be having a little bit of an easier time and then he had egg nog last night and swelled up. I checked the ingredients and nothing caught my eye as being a no no. I don't think I've ever felt this clueless about anything else in my whole life (and I'm blonde). :rolleyes:

http://www.kinnikinnick.com/

This site has great gluten free foods. Best to stick with labeled GLUTEN FREE products at first so you can see if there's an improvement in your child. Even tiny crumbs cause a full reaction. No improvement unless 100% gluten free. Check his shampoo and lotions as well. Do not stir your gluten full noodles with the same spoon you stir his gluten free noodles with... that will make the diet useless. Gluten is gluten no matter how small an amount. Tinkyada pastas are the best. Stores like Wholefoods carry nice lines of gluten free treats for young kids.

Thank you for the advice. I had no idea that I needed to check his shampoos and lotions. You better believe that I'll be running for the bathtub as soon as I log off. So far I've only received 2 replies to my post and I already know more now than I did after his last dr visit. Keep 'em coming! Thanks again

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http://www.celiac.com/st_prod.html?p_prodi...-52105261272.5f

http://www.celiac.com/st_prod.html?p_prodi...-13105271672.78

Here are links to the safe and forbidden lists. They are helpful when you first get started. I printed them out and took them shopping with me for two years!

The only thing that can't be stressed enough to a newbie :D is the 100% rule. Your child will need separate Peanut butter jars, cream cheese, mayo, etc. You cannot spread pb on gluten bread, dip the knife into the same jar for Gluten free bread spreading. He must not have a crumb. <_< The body is that sensitive to the gluten. An itty-bitty amount negates all your previous best efforts for a few days and villi re-growth is stopped and nutrition aborption is interfered with. It's a vicious cycle of destruction. Do not use oats. No malt. No rye. No sprouted grains. No spelt. No kamut. Look at your lists. Have deli clerks wipe down the slicer if you order coldcuts or cheeses. They "love" to do that for you. Expect happy looks everytime you ask. :lol:

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My son Jon was diagnosed with celiac disease at 13 months he went from 27 lbs to 17 lbs in 6 weeks. We were told to take him off milk for the first six months on his gluten free diet and give him pediasure instead. His diet for the longest time seamed to be scrambled eggs, mashed potatoes and pediasure. He is six now and doing great (although we still have to fight with him to get him to try new foods). The not knowing what was wrong with him was the hardest part. Good luck to you and your family. :)

Colette

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Okay, so I checked his shampoos and lotions and as far as I can tell they're all okay. I heard that he's not supposed to have mayonnaise or any other salad dressing. Is that true? I'm trying to find a good bread that he can have because he's missing his JJ (just jelly) Sandwiches. I can hardly wait to look at the links that were suggested and I'm definately going to buy Dangerous Grains. Does anybody know how to figure out what he can have, if anything, at fast food and other restaurants. We usually do friday nights out and I think that until I have this diet 100% down, I'm going to just bring food with us for him. He's kind of starting to feel a little left out though. Does anyone have any thoughts on how long he should be on this diet to figure out what's going on? His dr said 3 weeks, but I don't know if that's long enough to make a difference. His dr is really young and I don't think she's ever seen this before. Thanks a lot, Amy

http://www.celiac.com/st_prod.html?p_prodi...-52105261272.5f

http://www.celiac.com/st_prod.html?p_prodi...-13105271672.78

Here are links to the safe and forbidden lists. They are helpful when you first get started. I printed them out and took them shopping with me for two years!

The only thing that can't be stressed enough to a newbie :D is the 100% rule. Your child will need separate Peanut butter jars, cream cheese, mayo, etc. You cannot spread pb on gluten bread, dip the knife into the same jar for Gluten free bread spreading. He must not have a crumb. <_< The body is that sensitive to the gluten. An itty-bitty amount negates all your previous best efforts for a few days and villi re-growth is stopped and nutrition aborption is interfered with. It's a vicious cycle of destruction. Do not use oats. No malt. No rye. No sprouted grains. No spelt. No kamut. Look at your lists. Have deli clerks wipe down the slicer if you order coldcuts or cheeses. They "love" to do that for you. Expect happy looks everytime you ask. :lol:

Oh my gosh, I'm finding out more by the day and I'm so glad I decided to post my question here (and one other site as well) because I'm just finding out so much more than I thought I would. I'm going to check out those links for sure but in the meantime, can he have modified food starch and corn syrup. What about soy? You're probably regretting that you even answered me at all 'cause I'm totally going to bug you with questions. You sound so sure of yourself! I can't wait to be in that place. I'm still kind of feeling like I've just been hit by a celiac truck!

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Does anyone have any thoughts on how long he should be on this diet to figure out what's going on? His dr said 3 weeks, but I don't know if that's long enough to make a difference. His dr is really young and I don't think she's ever seen this before. Thanks a lot, Amy

It varies widely, but from what I've been reading, young children tend to show results more quickly. I'd like to think that you'd see some definite results in a few weeks or so, but of course there's always the possibility that it could take longer. Keep in mind also, that if there are sources of gluten which have not been removed from the diet, or skin/hair care products, that can also obscure results.

It sounds like you are doing well so far. I'd say he's in good hands and I'm confident in your ability to help him to a full recovery.

As for the feeling of being left out, though I'm not a psychologist, I might try making him feel like he's got the special treats, and the rest of you are the ones left out. Indeed, you will be buying special treats for him, and it's true they are quite tasty.

This board has many threads dealing with fast food too, so a search should help locate the info you need. Also Celiac.com has lists of safe/unsafe food items, though you may have seen those already.

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Okay, so I checked his shampoos and lotions and as far as I can tell they're all okay. I heard that he's not supposed to have mayonnaise or any other salad dressing. Is that true? I'm trying to find a good bread that he can have because he's missing his JJ (just jelly) Sandwiches. I can hardly wait to look at the links that were suggested and I'm definately going to buy Dangerous Grains. Does anybody know how to figure out what he can have, if anything, at fast food and other restaurants. We usually do friday nights out and I think that until I have this diet 100% down, I'm going to just bring food with us for him. He's kind of starting to feel a little left out though. Does anyone have any thoughts on how long he should be on this diet to figure out what's going on? His dr said 3 weeks, but I don't know if that's long enough to make a difference. His dr is really young and I don't think she's ever seen this before. Thanks a lot, Amy

Oh my gosh, I'm finding out more by the day and I'm so glad I decided to post my question here (and one other site as well) because I'm just finding out so much more than I thought I would. I'm going to check out those links for sure but in the meantime, can he have modified food starch and corn syrup. What about soy? You're probably regretting that you even answered me at all 'cause I'm totally going to bug you with questions. You sound so sure of yourself! I can't wait to be in that place. I'm still kind of feeling like I've just been hit by a celiac truck!

I like being useful, so no worries! Modified food starch must be verified if not confirmed a gluten free source. Some companies such as Kraft, will list the source ONLY if the source is gluteny. So, if you pick up a Kraft salad dressing for instance, and it looks good, except that you see the words "modifed food starch".... if that's all it says, it's a gluten free MFS. If there are (****) after the words mfs, then they're telling you the source is a concern and will list a word like "wheat, barley, rye, ..." in the parenthesis.

You will actually have to call the 1800 #s a lot in the beginning. Verify food favorites, write info on the lids of all you call about *helps to remember a week later*, and eventually, you will find a varied enough diet for your child that you stick with the known foods. Whole foods stores and the others are all carrying long lines of gluten free products. Tinkyada pastas are the only ones we like. All the rest are mushy and fall apart or just taste gritty and gross.

Go to the kids section and look for some of the long lists of gluten free foods found in regular stores. There are tons and some are surprising. Like Post fruity and cocoa pebbles are gluten free! Velveeta cheese block for making mac and cheese is gluten free! Classico alfredo sauces are gluten free!---- other stuff is surprising too. Like Twizzlers HAVE GLUTEN <_< Milky Ways HAVE GLUTEN <_< but Snickers are GLUTEN FREE :D ...but Snickers POPPABLES HAVE GLUTEN <_< Size and shape matter. :( If a food is shaped differently for the holidays, for instance.... it can have gluten :o That's to help it retain it's new,cute shape. :huh:

Mayo is gluten free. Don't listen to anybody NOT on this board! :lol: Seriously. :ph34r: My kids like the White sandwhich bread from kinnikinnick. They love the donuts. The pizza crusts are great. I always bring my celiac disease kid's foods out to dinner with us. No problems in nearly 5 years. Outback Steakhouse has an awsome gluten free menu. You have to ask them for it, or you can print one on line and bring it in with you. They are very nice about the gluten free stuff at OUTBACK. I traveled cross country twice with my celiac kid and had no cross contamination issues. I've gotta go pick kids up from school.

http://tuberose.com/Soy.html

We don't eat soy. Soy screws up your thyroid. There are plenty of mainstream reports coming out lately about the negs of soy. It's harder to get soy out of your diet than gluten! That company Kinnkinnick removed all the soy from it's foods this year. Some people are catching on. Do not use soy milk. We use the 365 brand of rice milk from whole foods...vanilla flavor is tasty. I got rid of milk too.... most dairy, actually. Corn syrup is fine.

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To all:

Okay, I bought Dangerous Grains (and 2 other gluten-free books as well). I've started a detailed journal of ALL the great info that I'm getting from you guys. I went to Trader Joe's tonight and studied just about every label I could get my hands on and I've decided to try looking for a different store (too bad there's not a whole foods by me). I'm looking forward to taking him to Outback. I found a delicious peanut butter tonight that Dylan loves and was literally trying to eat out of the jar. He kept saying "Mo, Mo!" (translation: More, More). I also think that I'm going to insist that his dr send us to a specialist in this kind of thing and also a nutritionist/dietician (is there a difference between the two?). He still cries all the time so if anybody has a little trick for quick relief, I'll be your best friend for a week! He's really a great baby and we're starting to see little bitty glimpses of how happy he could be. To Rice Guy, thanks for the vote of confidence and I actually tried to make Dylan feel like he has the cool food and we don't. It kinda worked. The only drawback, now my other son and the kids I babysit all want his "COOL" food. I'll be broke in a month. Count on it! Oh yeah, Jnkmnky, thanks for the help about Outback, the links, the modified food starch dilemma, and the mayo. Dylan's favorite sandwich (just like his Mommy's) is Peanut Butter and Mayo (don't laugh). I know... it sounds disgusting and absolutely horrible for you but I was raised on them and now he will continue to be as well!!!

Good night,

Amy

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Slamey- I'm pretty sure all pbs are gluten free. You don't have to buy special ones. Just saying, cuz you're going to be paying a-plenty for the gluten free foods you NEED. Whenever you can find gluten free foods in a REGULAR store... it's easier on the pocketbook! And, mayo and peanut butter.... :blink: I just ~~~shuddered~~~

Chebe is great, too. Make hot pockets, corn dogs, pizza sticks.. *I chop pepperoni *hormel is gluten-free* and add mozz cheese and extra garlic salt. Kids dip the sticks in sides of Prego spaghetti sauce. Chebe is great and easy and versatile... but shipping is very high. I buy it by the case and keep it around because it's useful for buttered buns with stews and soups and for pizza sticks. I don't like the red bag so much. The garlic/onion flavor is good. The cinnamon is good. I use Mesquite flour *which is NOTHING like bbq sauce!* in the cinnamon flavor chebe to give it richer flavor. I got my mesquite flour from Lame Advertisement.com It's pricey, but a bag lasts forever because it's so potent. I use a tbsp for the cinn chebe. It's great.

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Jnkmnky- Okay, so I know pretty dumb of me, right? I see "gluten-free peanut butter" so rather than checking into it, I just assume that all others have gluten in them, and I pay like 5 bucks for a little tiny jar of it. I swear my eyes just about crossed! As for the PB and Mayo sandwiches, they're amazing, but much better on soft bread than not. It's not like I'm eating pickled pigs feet or anything like that. Talk about the shudder of all shudders. I can't even look at those things. So I have to ask... what is chebe? You mentioned it a whole bunch of times and I am a little bit confused. I'm going to run a search on it so we'll see if I can actually figure SOMETHING out on my own! Yeah right! I'm so serious, I'm going to send Dylan to live with your family out of fear that I'm constantly making him sick because I'm not reading labels right. LOL. I printed out the Safe and Not Safe Lists last night and I'm going to take them with me everywhere. Homemade spaghetti sauce should be okay, right? Those lists really helped, I think that with those I just might be able to get a handle on this, or I hope anyway. So, are french fries for the most part gluten-free? I went to some sites last night for fast food and they all say they're okay, but what about a restaurant that doesn't have a gluten free menu? Thanks for walking/talking me through all of this. Have a great weekend! Slamey

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Oh my gosh, I bet you were so scared that she got so small. Dylan sticks right around the 21-22 pound mark but if he gets sick, then he usually loses a pound or so. He'll be 2 in March and is still in a size 1-2 diaper. I'm definately going to search for the list of ingredients. I'll print it and wallpaper my house with it. Every time I go to feed him something I feel unsure about if it's safe. He swelled up so bad last night and still is today. Someone told me to take him off of dairy for right now too. Do you think I should?

I have memorized the list (pathetic right?) but it took me like 6 months, I used to read everything, even stuff I wasn't feeding to the gluten-free kid because I wanted to see if I could pick out "bad ingredients".

I would take him off milk and dairy until he feels better, if he has damaged intestines he won't be able to digest it anyway, and it could make his symptoms worse.

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Jnkmnky- Okay, so I know pretty dumb of me, right? I see "gluten-free peanut butter" so rather than checking into it, I just assume that all others have gluten in them, and I pay like 5 bucks for a little tiny jar of it. I swear my eyes just about crossed! As for the PB and Mayo sandwiches, they're amazing, but much better on soft bread than not. It's not like I'm eating pickled pigs feet or anything like that. Talk about the shudder of all shudders. I can't even look at those things. So I have to ask... what is chebe? You mentioned it a whole bunch of times and I am a little bit confused. I'm going to run a search on it so we'll see if I can actually figure SOMETHING out on my own! Yeah right! I'm so serious, I'm going to send Dylan to live with your family out of fear that I'm constantly making him sick because I'm not reading labels right. LOL. I printed out the Safe and Not Safe Lists last night and I'm going to take them with me everywhere. Homemade spaghetti sauce should be okay, right? Those lists really helped, I think that with those I just might be able to get a handle on this, or I hope anyway. So, are french fries for the most part gluten-free? I went to some sites last night for fast food and they all say they're okay, but what about a restaurant that doesn't have a gluten free menu? Thanks for walking/talking me through all of this. Have a great weekend! Slamey

Slamey-

Here's a link to Chebe. It's really good to have around. I use it a lot. I get the Buitoni pesto sauce, add it to the chebe along with Mozz cheese, garlic salt and diced, boild chicken. I roll it into sticks and bake. My kdis dip it in spaghetti sauce. You can throw ANYTHING into chebe. Look at HotPockets and add whatever they're adding. Roll the chebe out flat and fill it and bake it. Ham and cheese melts are great. Hot buttered chebe with soup or stews is a must. I'm not crazy about the aftertaste from the flavor of the red bag.. .I think it's original. But extra garlic salt covers it. I prefer the green bag of Chebe. It's the garlic onion flavor. Lots of french fries are gluten free. Call if unsure. I use Prego spaghetti sauce. I think most spaghetti sauces are gluten free, but you need to check your favorites. Classico alfredo sauces are gluten free even though they look all white and creamy like they're loaded with flour.

http://www.chebe.com/

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Many french fries are gluten-free, but that was one of my first mistakes (oh, do I remember being sick that night!). It hadn't occurred to my husband or I that frozen french fries could have gluten in them! (needless to say I had been on the diet about 1 week and didn't know that I had to know EVERYTHING that went into my mouth). We baked the fries, had an otherwise great dinner.....and boy, was I sick. Luckily there are enough brands of french fries that are safe, but man, did I ever learn my lesson!

Also, you have to be careful at places that say their french fries are gluten-free. The ingredients may be "gluten-free" but if they are cooked in oil that has cooked non-gluten-free products, your risk of cross-contamination is higher. I know myself and many others have gotten sick from numerous different restaurants and fast food places. It seems to vary from store to store.

Good luck!!! I'm sure that you will catch on quick!!!!

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I have memorized the list (pathetic right?) but it took me like 6 months, I used to read everything, even stuff I wasn't feeding to the gluten-free kid because I wanted to see if I could pick out "bad ingredients".

I would take him off milk and dairy until he feels better, if he has damaged intestines he won't be able to digest it anyway, and it could make his symptoms worse.

I don't think it's pathetic at all that you've memorized the list. In fact, I'm jealous. I think I should get a bigger purse because everywhere I go I have Dylan's food journal, my separate little journal for tried this...tried that... and the safe and forbidden food lists from this site. So far, so good. We're starting to notice some attitude/mood changes in him, but his tummy is still very distended. I guess we'll just keep at it. My biggest problem right now is keeping my almost 4 year old from trying to "help" by giving his little brother food.

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Slamey-

Here's a link to Chebe. It's really good to have around. I use it a lot. I get the Buitoni pesto sauce, add it to the chebe along with Mozz cheese, garlic salt and diced, boild chicken. I roll it into sticks and bake. My kdis dip it in spaghetti sauce. You can throw ANYTHING into chebe. Look at HotPockets and add whatever they're adding. Roll the chebe out flat and fill it and bake it. Ham and cheese melts are great. Hot buttered chebe with soup or stews is a must. I'm not crazy about the aftertaste from the flavor of the red bag.. .I think it's original. But extra garlic salt covers it. I prefer the green bag of Chebe. It's the garlic onion flavor. Lots of french fries are gluten free. Call if unsure. I use Prego spaghetti sauce. I think most spaghetti sauces are gluten free, but you need to check your favorites. Classico alfredo sauces are gluten free even though they look all white and creamy like they're loaded with flour.

http://www.chebe.com/

I look forward to trying Chebe. Thanks for the tip. We're having a b-day party for Dylan's older brother on Saturday and I'm trying to find a recipe for yummy cake or cupcakes that I can make so that he won't feel left out. We're noticing some attitude/mood changes in Dylan and people outside of our immediate family are as well. I'm trying not to get my hopes up, but I'm wondering if we've finally figured out what's been bothering him all this time. He's been happier, more playful, downright silly at times, more sociable, and more active. The main problems that he's having right now are that he can't seem to eat enough (he's always hungry) and that he is still very sensitive about being bumped into or jostled. He will walk across the room and brush up against the couch (just hard enough to make him lose his step) and he will cry forever. Also, once he starts crying, he has a hard time stopping. I don't know how I can prevent him from bumping into things. He's only 21 months old. He's supposed to fall down at this age. He just doesn't have very much meat on his bones so maybe that's part of it. I guess that this will all just take time to sort through and I need to be patient. After all, it's only been 1 1/2 weeks on his gluten-free diet and even at that, I was accidentally giving him things that I thought were okay. Oops! :unsure:

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Guest nini

my daughter was 3 when we put her on the gluten-free diet, she is 5 now and doing very well. It does get easier, but you always have to be vigilant. I still have moments of anxiety where I let her have something and then think "OH NO! Is it safe???" Another thing to keep in mind is that even when you find safe products, ALWAYS read the labels because companies periodically change their ingredients and this really really sux! We recently went through this with Malt O Meal Cereals... They were safe for the longest time and then over last summer, the company decided to add wheat starch to the product... :angry::angry:

my kid loves Kinnikinick sandwich bread, I microwave it for a few seconds to get it soft, then put whatever she wants on it, ham and cheese, turkey bologna, pb&j... We were using Peter Pan Peanut Butter, but one day I had let her try MY organic fresh ground peanut butter, and now she won't eat anything else! (LOL) I've always prefered the Organic fresh ground peanut butter for myself for the taste even before going gluten free so I can't say that I blame her, but it does get pricey!

If you go to most fast food stores web sites you can find their most current gluten free list, or in the shopping area of this site there is a little book called the Gluten/Wheat Free Guide to Dining Out... my husband bought it for me in the beginning, and I tell ya, it has been a lifesaver! Of course you still need to be aware of cross contamination issues, but if you can get comfortable communicating with the staff at those places, it gets pretty easy. I've actually developed a great relationship with the manager and staff at my local McDonalds... we had Chey's 4th birthday party there and it was a lot of fun. I made a chocolate cake from Pamela's that everyone loved!

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I look forward to trying Chebe. Thanks for the tip. We're having a b-day party for Dylan's older brother on Saturday and I'm trying to find a recipe for yummy cake or cupcakes that I can make so that he won't feel left out. We're noticing some attitude/mood changes in Dylan and people outside of our immediate family are as well. I'm trying not to get my hopes up, but I'm wondering if we've finally figured out what's been bothering him all this time. He's been happier, more playful, downright silly at times, more sociable, and more active. The main problems that he's having right now are that he can't seem to eat enough (he's always hungry) and that he is still very sensitive about being bumped into or jostled. He will walk across the room and brush up against the couch (just hard enough to make him lose his step) and he will cry forever. Also, once he starts crying, he has a hard time stopping. I don't know how I can prevent him from bumping into things. He's only 21 months old. He's supposed to fall down at this age. He just doesn't have very much meat on his bones so maybe that's part of it. I guess that this will all just take time to sort through and I need to be patient. After all, it's only been 1 1/2 weeks on his gluten-free diet and even at that, I was accidentally giving him things that I thought were okay. Oops! :unsure:

If you were accidently giving him stuff with gluten, he wasn't experienceing the benefits of a gluten free diet. :( That goes for even little crumbs of gluten. Sorry. A Celiac will not tolerate ANY gluten. My son also experienced joint pain and muscle pain. It was relieved completely on the gluten free diet within a month. Cognitive delays are very likely in a celiac who experiences peptide issues due to a leaky gut. If your son is not hitting cognitive/learning milestones on time, you should be extra wary of accidental glutenings. These episodes lead to "brain fog" as a result of Peptides that act as opiates in the celiac brain. My son is behind a year. He was held back in school and is developmentally on task now. He also has speech delays that continue to cause problems due to the slow start. He is also a year behind his real age in gross motor skills. He has has the gait of a child a year younger than his actual age. Accidental glutenings can do more damage than given credit for. Everytime villi are damaged, nutrition is compromised. It's a vicious cycle.

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Ore-Ida fries are gluten-free. At least the shoestrings are. Some other potato products they have are also safe, like the tator tots. Just make sure you get the right ones, since they also have flavored up varieties, though I never liked those anyway. There is a gluten-free list on their site: Ore-Ida gluten-free potato list.

BTW, you might be interested to know that it's easy to make your own mayo. I don't have a recipe handy, but as I recall it's sorta whipped up vegetable oil with egg white or something. It's been awhile since I last looked, since I don't use mayo on anything. I'm sure Google will turn up some recipes for you.

And I agree 200% about the natural peanut butter. I tried it one day growing up and never looked back! The "popular" brands are so not even close when it comes to taste. It's no surprize since they use all sorts of fillers. You don't really get as much actual peanuts - more like fat/lard or whatever they put. The natural kind is quite a bit better for you anyway. It's great with bananas or apple sauce/apple butter too.

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If you were accidently giving him stuff with gluten, he wasn't experienceing the benefits of a gluten free diet. :( That goes for even little crumbs of gluten. Sorry. A Celiac will not tolerate ANY gluten. My son also experienced joint pain and muscle pain. It was relieved completely on the gluten free diet within a month. Cognitive delays are very likely in a celiac who experiences peptide issues due to a leaky gut. If your son is not hitting cognitive/learning milestones on time, you should be extra wary of accidental glutenings. These episodes lead to "brain fog" as a result of Peptides that act as opiates in the celiac brain. My son is behind a year. He was held back in school and is developmentally on task now. He also has speech delays that continue to cause problems due to the slow start. He is also a year behind his real age in gross motor skills. He has has the gait of a child a year younger than his actual age. Accidental glutenings can do more damage than given credit for. Everytime villi are damaged, nutrition is compromised. It's a vicious cycle.

I totally understand that he can have absolutely NO gluten. That first couple of days was when I was still going off his dr.'s orders that were simply "no wheat". The more I read and talk to people, the more I'm finding out. I went to Whole Foods today and my husband and I were standing there, trying to compare different brands and ingredients and this guy came up behind us and offered to help. He didn't even work there. He was there with his gluten-free daughter and saw us standing there, cross-referencing the ingredients with what's on my safe/forbidden lists. He took us through the store and showed us what they like and what to watch out for. It was really nice of him and also pretty cool to talk to his daughter (who I'm guessing was about 7). They had a lot of great advice.

As for Dylan, well I don't really think that we need to look any further to figure out what's going on with him. His attitude change is amazing. He's running around playing with his brother like he never has before. He likes to intentionally run into things, when two weeks ago, the exact same action would have probably ruined the whole day. His tummy is still very large but that will probably take time to reverse. I checked into rice milk today but it said to check with a dr for kids under 5. So I guess we'll wait. I found the most amazing crackers there today. I think that you should all go out and buy stock in them because they're incredible. LOL.

Okay, so something happened today that kind of made me a little sad. We went to visit my grandma in the hospital and while we were there one of the staff started talking to my kids. Keep in mind that Dylan is the size of an average 11-12 month old and he's walking around and talking. So this woman comes up to him and says "hi" and then to her friend she says "Oh my gosh, he's so little. Look how big his tummy is. It's even making him walk funny, huh?" She then proceeded to rub his stomach and make fun of his walk as she walked away (picture a woman that's like 7 months pregnant, walking). I don't think that she meant any harm by it and he didn't understand what she was talking about anyway but it kind of upset me a little bit. Do you think that's out of line? I didn't say anything but I sort of wish I had. Hmm, something to think about, I guess. People have told me that he looks like a midget because of how misproportioned he is but this woman was working in a health care facility and you would think that she would know when to keep her mouth shut, right?

Ore-Ida fries are gluten-free. At least the shoestrings are. Some other potato products they have are also safe, like the tator tots. Just make sure you get the right ones, since they also have flavored up varieties, though I never liked those anyway. There is a gluten-free list on their site: Ore-Ida gluten-free potato list.

BTW, you might be interested to know that it's easy to make your own mayo. I don't have a recipe handy, but as I recall it's sorta whipped up vegetable oil with egg white or something. It's been awhile since I last looked, since I don't use mayo on anything. I'm sure Google will turn up some recipes for you.

And I agree 200% about the natural peanut butter. I tried it one day growing up and never looked back! The "popular" brands are so not even close when it comes to taste. It's no surprize since they use all sorts of fillers. You don't really get as much actual peanuts - more like fat/lard or whatever they put. The natural kind is quite a bit better for you anyway. It's great with bananas or apple sauce/apple butter too.

I'll have to check into the tater tots, that's one of his faves. I have a list of ingredients that I could not find on the safe/forbidden food lists that will either open or close a whole bunch of doors as far as his diet goes, I'm curious to see what I find out.

He is absolutely LOVING the peanut butter. It almost tastes like it's fresher/richer/creamier (I guess you can take your pick) than the regular stuff. Also, it doesn't make your mouth as dry and gooey. I'll have to give it to him with apple butter, it'll probably be a hit! Thanks

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I totally understand that he can have absolutely NO gluten. That first couple of days was when I was still going off his dr.'s orders that were simply "no wheat". The more I read and talk to people, the more I'm finding out. I went to Whole Foods today and my husband and I were standing there, trying to compare different brands and ingredients and this guy came up behind us and offered to help. He didn't even work there. He was there with his gluten-free daughter and saw us standing there, cross-referencing the ingredients with what's on my safe/forbidden lists. He took us through the store and showed us what they like and what to watch out for. It was really nice of him and also pretty cool to talk to his daughter (who I'm guessing was about 7). They had a lot of great advice.

As for Dylan, well I don't really think that we need to look any further to figure out what's going on with him. His attitude change is amazing. He's running around playing with his brother like he never has before. He likes to intentionally run into things, when two weeks ago, the exact same action would have probably ruined the whole day. His tummy is still very large but that will probably take time to reverse. I checked into rice milk today but it said to check with a dr for kids under 5. So I guess we'll wait. I found the most amazing crackers there today. I think that you should all go out and buy stock in them because they're incredible. LOL.

Okay, so something happened today that kind of made me a little sad. We went to visit my grandma in the hospital and while we were there one of the staff started talking to my kids. Keep in mind that Dylan is the size of an average 11-12 month old and he's walking around and talking. So this woman comes up to him and says "hi" and then to her friend she says "Oh my gosh, he's so little. Look how big his tummy is. It's even making him walk funny, huh?" She then proceeded to rub his stomach and make fun of his walk as she walked away (picture a woman that's like 7 months pregnant, walking). I don't think that she meant any harm by it and he didn't understand what she was talking about anyway but it kind of upset me a little bit. Do you think that's out of line? I didn't say anything but I sort of wish I had. Hmm, something to think about, I guess. People have told me that he looks like a midget because of how misproportioned he is but this woman was working in a health care facility and you would think that she would know when to keep her mouth shut, right?

I'll have to check into the tater tots, that's one of his faves. I have a list of ingredients that I could not find on the safe/forbidden food lists that will either open or close a whole bunch of doors as far as his diet goes, I'm curious to see what I find out.

He is absolutely LOVING the peanut butter. It almost tastes like it's fresher/richer/creamier (I guess you can take your pick) than the regular stuff. Also, it doesn't make your mouth as dry and gooey. I'll have to give it to him with apple butter, it'll probably be a hit! Thanks

The incident with the woman who commented on your son's appearance should not bother you. If you look at these moments as opportunities to spread the word about celiac disease, you will be much happier. There are very few comfortable ways to begin talking about celiac disease and your child's experience, your experience with the dx and all of the celiac disease details. This would have been a great excuse to discuss it. PLUS, she would have been a captive audience because she would be feeling apologetic for her mistake. No harm, no foul. Spreading th word about a disease that affects 1-133 people but is being dxed at a rate of 1-4000 is a blessing. With the warmest of enthusiasm, you should have told her all about celiac disease and thanked her for the opportunity. :) That's how I look at it. When someone marvels at how healthy your son looks in a few months of being gluten free, you can take the same opportunity to tell them how poorly he looked prior to dx and how great it is to hear how he is viewed now. Getting defensive doesn't help get the information out there. So many kids and adults are suffering with celiac disease and they and their doctors don't know why!!! Isn't that crazy!? :o

I use the WholeFoods 365 organic vanilla flavored rice milk. It's great. I think they don't want kids being fed rice milk as an alternative to formula??? We tried numerous Rice milks until we found the cheapest one, the wholefoods brand, and it's the best tasting. :rolleyes: Kids really don't need dairy anyway. You can get all the calcium you need from a healthy diet that includes salad greens. This is true! I'm not nuts. I removed almost all dairy products this summer after researching it. You can look on line to see for yourself, if you're interested. It's not as crazy as it sounds. How do you think Dinosaurs got those big, strong bones? :huh: Anyway, the dairy industry has the average person so deeply convinced they'll break every bone in their body if they forgo dairy that it's difficult to believe.

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I don't think it's pathetic at all that you've memorized the list. In fact, I'm jealous. I think I should get a bigger purse because everywhere I go I have Dylan's food journal, my separate little journal for tried this...tried that... and the safe and forbidden food lists from this site. So far, so good. We're starting to notice some attitude/mood changes in him, but his tummy is still very distended. I guess we'll just keep at it. My biggest problem right now is keeping my almost 4 year old from trying to "help" by giving his little brother food.

My oldest was 3 when my youngest had to go gluten free (they are both gluten free now) and she used to try to "share" too.

The easiest thing to to is to explain "some people have special tummys that need special food, and if they get some kinds of regular foods it will make thier tummys sick, so can you help me make sure that we only give special foods to your brother?"

I had the same conversation with my then 3 year old and it helped a lot, she became my "gluten scout" and now knows what to look for that might have gluten in it.

As far as the list goes, I had made a notebook with the list of forbidden items, and then gluten free lists from various companies and stuff, but after it hit over 100 pages I decided to go high tech.

My husband got me a usb flash drive this weekend and I am currently saving everything to it, so when I go somewhere I just have to pop in into a computer to look at it, we have a laptop too though so that probably makes it more convienient.

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My oldest was 3 when my youngest had to go gluten free (they are both gluten free now) and she used to try to "share" too.

The easiest thing to to is to explain "some people have special tummys that need special food, and if they get some kinds of regular foods it will make thier tummys sick, so can you help me make sure that we only give special foods to your brother?"

I had the same conversation with my then 3 year old and it helped a lot, she became my "gluten scout" and now knows what to look for that might have gluten in it.

As far as the list goes, I had made a notebook with the list of forbidden items, and then gluten free lists from various companies and stuff, but after it hit over 100 pages I decided to go high tech.

My husband got me a usb flash drive this weekend and I am currently saving everything to it, so when I go somewhere I just have to pop in into a computer to look at it, we have a laptop too though so that probably makes it more convienient.

I think I've finally convinced my oldest that it's not a good idea to "share" with his little brother. I pointed out to him how happy Dylan is now (he didn't like it at all when Dylan used to cry all the time) and told him that it's because Dylan only eats his special food now. I also told him that if he would help me watch out for his brother and make sure that he didn't get food that he wasn't supposed to have, that he could share Dylan's snacks with him. He liked that idea a lot. I really think that he was just trying to be fair by making sure that they both had the same thing.

During the week I babysit for extra kids and this morning, one of the little boys showed up with a bag of cereal. I took it from him, put it in his diaper bag, and told him that he could have it a little later and that I didn't want Dylan to have any of it because it would make him sick. I went into the kitchen to make breakfast and a couple of minutes later, my older son (the "gluten scout" in training) brought me the open bag of cereal and told me that the other little boy had given some to Dylan. :o I guess that this was the true test because within 45 minutes or so, Dylan was crying, sleepy, and very moody. I guess I didn't realize that the reaction would come on so quickly. I think I'm going to have to ask the other parents not to send food with their kids until we get this under control.

That's a good idea about the flash drive. I wish I had a laptop too. Maybe Santa will bring me one. I think I've been a pretty good girl this year! I guess we'll have to wait and see! Talk to you soon.

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The incident with the woman who commented on your son's appearance should not bother you. If you look at these moments as opportunities to spread the word about celiac disease, you will be much happier. There are very few comfortable ways to begin talking about celiac disease and your child's experience, your experience with the dx and all of the celiac disease details. This would have been a great excuse to discuss it. PLUS, she would have been a captive audience because she would be feeling apologetic for her mistake. No harm, no foul. Spreading th word about a disease that affects 1-133 people but is being dxed at a rate of 1-4000 is a blessing. With the warmest of enthusiasm, you should have told her all about celiac disease and thanked her for the opportunity. :) That's how I look at it. When someone marvels at how healthy your son looks in a few months of being gluten free, you can take the same opportunity to tell them how poorly he looked prior to dx and how great it is to hear how he is viewed now. Getting defensive doesn't help get the information out there. So many kids and adults are suffering with celiac disease and they and their doctors don't know why!!! Isn't that crazy!? :o

I use the WholeFoods 365 organic vanilla flavored rice milk. It's great. I think they don't want kids being fed rice milk as an alternative to formula??? We tried numerous Rice milks until we found the cheapest one, the wholefoods brand, and it's the best tasting. :rolleyes: Kids really don't need dairy anyway. You can get all the calcium you need from a healthy diet that includes salad greens. This is true! I'm not nuts. I removed almost all dairy products this summer after researching it. You can look on line to see for yourself, if you're interested. It's not as crazy as it sounds. How do you think Dinosaurs got those big, strong bones? :huh: Anyway, the dairy industry has the average person so deeply convinced they'll break every bone in their body if they forgo dairy that it's difficult to believe.

I guess that since I'm just starting out in this, I don't really feel like I have any right to tell a complete stranger about celiac disease. I don't know enough to give her an accurate description, I guess. I'm getting pretty good at reading labels and trying new things but I think it's a bit early in the game to start "Spreading the word". It would be like voting on an issue that you really know nothing about. Since Celiac Disease is pretty unheard of by most people (I know I'd never heard of it before 1 month ago) I don't want to go spouting off information when I haven't even taken Dylan to a specialist yet. Any information that you share with someone concerning a disease like this should be accurate and I'm not sure that I'm there yet. All I really know is stuff that I've researched on my own. Even once I do know more, I don't really see myself grabbing onto every open ear just to talk about celiac. If someone asks, then I'll share what I know.

I didn't really mind so much that the woman made a comment about his tummy. I think it bothered me more that she seemed to be making fun of him. I felt like she, being a medical professional, should be the last person to ridicule someone because of their appearance. I mean, what if he had been cross-eyed, bow-legged, or had some kind of deformity? Would she still have made fun of him? I hope not. I guess it was more bothersome that she made fun of anyone, for any reason at all, than because Dylan may or may not have celiac disease. I've gotten used to comments about his appearance, or even questions, but to openly make fun of someone about their appearance is wrong no matter how you look at it. I didn't cry over it or lose any sleep, it just kind of opened my eyes a little bit to how other people see my son. I don't really think that I got defensive about it because I didn't say a word to her about it. I think sometimes it's better to keep your mouth shut when in doubt.

I'm going to check into that rice milk next time I'm at Whole Foods, but not until after I've talked to his dr about it. I'm really glad that it's worked for your family, but he's still young and the last thing I want to do is screw up his digestive track more than it already is!

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