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Chrissy W.

Day 3 Going gluten-free. Not Going So Well.

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This is my son's third day being gluten-free. He is 10 and is a HORRIBLE eater. So far, he refuses everything I offer him. He has only eaten a few gluten-free cookies, a gluten-free ice cream sandwich, and applesauce. He hates the gluten-free bread, the gluten-free pancakes that I made, the gluten-free pizza that I made (which was actually really good). If I throw away the few snacky-junky gluten-free items I bought, he'd probably eat nothing. Should I get rid of those items or do you think he will eventually eat something (other than trying one bite and saying he hates it)?

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Some of us find it works best to not try the gluten free replacement foods right away. Maybe try and go with more naturally gluten free food that he was eating before diagnosis like potatoes, rice, chicken and beef, eggs, veggies and fruit etc. There are a few mainstream cereals that are gluten free like Chex, Fruity and Chocolate Pebbles and the gluten free Rice Crispies which are great for rice crispy treats. Fruit leathers and gummies, popcorn, many chocolates, chips etc. for junk food and there are many naturally gluten free canned items like many pasta sauces, Dinty Moore beef stew, some Progresso soups, tuna, etc.

Keep in mind that he may be going through withdrawl and this is going to be a big change for all of you. Things can be up and down for a while. Check out the recipe section for meal ideas that everyone in the family might like. Hang in there it will get better.

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I have to agree. Being told that your whole world of food is being turned upside down is hard. Honestly, compared to the gluteny foods we were used to those replacement foods taste like crap. There, I said it. Crap. And even the ones that don't just aren't the same, mostly the texture. I didn't want a pizza that tasted good for a gluten free pizza, I wanted a pizza that tasted like pizza.

So, instead of trying to find all these replacements that really aren't that great, try just regular, normal food. I regularly eat foods that wouldn't make anyone suspect I have celiac. Tacos, steak with veggies, soup and salad, grilled chicken, fruits, many crockpot meals.

It gets easier but right now it's going to be difficult. This is a very emotional time, which is normal and it's normal to reject replacements that just aren't the same. Hopefully some "normal" and naturally gluten free foods will be more agreeable.

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Thanks for your replies. This is not easy. He came down with a severe migraine (so bad he vomitted) this evening. I caved and let him eating something with gluten and it was gone within a few minutes. I just couldn't take him screaming in pain for almost an hour. I'm not sure this is going to work for us. We saw an allergist today (for his seasonal allergies) and when I showed him the IgG test results he basically laughed and said how unreliable they were. So now I'm not even certain he needs to be off of gluten. I'm so confused???

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Oh, and I meant to add that I wish I could get him to eat a lot of the naturally glute-free foods, but he literally only eats: chicken nuggets, Papa Johns cheese pizza, chocolate chip pancakes, and cinnamon toast (made from white bread). Occasionally I can get him to eat an apple or applesauce. So his diet is VERY limited.

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My son and I both experienced a severe drop in our appetite after getting off of gluten. Foods just didn't taste good at all. We both went through several weeks of not really wanting to eat but knowing we should and trying to. Eventually food started to taste good again, and we both commented to each other how it was so strange that food finally tasted good. I mean really good! He was always a picky eater but that all changed the longer gluten was out of the picture. It is no longer difficult at all to get him to try new foods and he says his sense of taste is totally changed. So is mine.

I'm just writing this to encourage you that not wanting to eat can be part of the process too. I would encourage you to try to offer foods but try to be understanding if he doesn't want to eat. Offer foods like baked potato or homemade French fries? Does he like Bacon? Hamburgers with ketchup and no bun?

Gluten free bread is better toasted.

I agree with the suggestions by the posters above, but I also wanted share our experience and to let you know that maybe it's ok if he doesn't feel like eating much right now.

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I was wondering if this was your child who had to give up chicken and beef?

Oh gosh...this is hard. I will be thinking some more....But all I can think of right now is Bacon, bacon, bacon? Does he like it? Make a sandwich with it.

Fry pork chops. Can he have pork?

Poor kid. And it must be stressful for you too.

Maybe make homemade "chicken nuggets" out of ground pork rolled in cornstarch and fried. Make them the shape of chicken nuggets.

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Yes, this is the child that can't have chicken or beef either! Or eggs or peanuts or... He's never tried bacon. I know it's hard to believe but he literally only eats 4-5 different things and that's it. He's never tried a hamburger. Or had any pork products. Now after talking to this allergist today, I'm not even sure I'm doing the right thing. Would you guys eliminate all of this stuff from your child's diet based off of the IgG tests? He has no gastro issues (never has) but has some behavioral issues (OCD, anxiety, possible Asperger's). His pediatrician was hoping going Gluten-free Casein-free (and everything else free) would help his behavior, asthma, allergies, and reoccuring ear infections. If I knew it would help him, I'd do it without question, but I won't know until at least a few months in if this diet will even help him.

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Has he had a full Celiac panel blood test done?

With the Dr. suggesting going gluten free, and with his neurological problems, I would be considering the Celiac panel pretty important before he goes off of gluten.

He doesn't have to have stomach problems to be Celiac.

Before you get too far into being gluten free, I wanted to check if he had been tested for Celiac, because he will have to be eating gluten for the tests to be accurate. The Celiac Panel is totally different than the allergy testing. It checks for autoimmune antibodies to gluten. I think it sounds like you have a proactive pediatrician, but I don't understand him making the suggestion to go gluten free without testing for Celiac. If your child improves being gluten free, then they might decide that he has to go back on gluten to get tested for Celiac and that would mean several weeks or months of eating gluten. I've seen it time and time again on here.

Just a thought.

There are so many allergy foods and so many issues you are trying to address at once, it just seems that this would be the time to test for Celiac?

I don't know much about the reliability of food allergy testing, but there are other's here who have experience with that and I hope they will chime in.

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Has he had a full Celiac panel blood test done?

With the Dr. suggesting going gluten free, and with his neurological problems, I would be considering the Celiac panel pretty important before he goes off of gluten.

He doesn't have to have stomach problems to be Celiac.

Before you get too far into being gluten free, I wanted to check if he had been tested for Celiac, because he will have to be eating gluten for the tests to be accurate. The Celiac Panel is totally different than the allergy testing. It checks for autoimmune antibodies to gluten. I think it sounds like you have a proactive pediatrician, but I don't understand him making the suggestion to go gluten free without testing for Celiac. If your child improves being gluten free, then they might decide that he has to go back on gluten to get tested for Celiac and that would mean several weeks or months of eating gluten. I've seen it time and time again on here.

Just a thought.

There are so many allergy foods and so many issues you are trying to address at once, it just seems that this would be the time to test for Celiac?

I don't know much about the reliability of food allergy testing, but there are other's here who have experience with that and I hope they will chime in.

Yes, the pediatrician forgot to have the celiac test done so she had us go back to the lab to check for it. That was 3 days ago. Do you think she has the results yet? It was just a blood test though no endoscopy. Right after that test is when I cut out his gluten.

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Oh, and I meant to add that I wish I could get him to eat a lot of the naturally glute-free foods, but he literally only eats: chicken nuggets, Papa Johns cheese pizza, chocolate chip pancakes, and cinnamon toast (made from white bread). Occasionally I can get him to eat an apple or applesauce. So his diet is VERY limited.

Not sure what you have tried making him to match these foods.

"chicken nuggets" from pork...rice flour works great to make the coating

chocolate chip pancakes = gluten-free bisquick is easy to use and add choc chips to

cinnamon toast = try it with udi's white bread (there are alot of gluten-free breads out there that taste like drywall -- udi's makes great cinnamon toast or french toast :)

pizza = I had good luck using bob's redmill pizza crust - it tasted like regular pizza - was a bit tough to spread on the pizza sheet - if you wet your fingers with water to spread it around it makes it a lot easier. I made homemade tomato sauce, but have also used prego to make them quicker for my kids. Also the dough makes two pizzas - you can keep the second half in the frig for a few days.

If those are his favs....I would try grilled cheese with the udi's too.

Keep encouraging the apples and sauce -- I had one son that would only eat green apples and applesauce -- it helped when I got one of those apple corer machines that slices apples into curly cues -- he ate an apple a day that way when I could only get a slice or two into him before that. Eventually he decided he liked grapes and pineapple - he's 17 and still doesn't like many fruits. I also used to make him fruit smoothies all the time...threw in all combos of fruits: peaches, apples, pears, grapes, berries, pineapple, bananas, melon, etc. with a some ice cubes (blueberries work great to turn it purple) -- he drank them all -- I even snuck spinach into them and he never knew until he was about 14 ;)

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Not sure what you have tried making him to match these foods.

"chicken nuggets" from pork...rice flour works great to make the coating

chocolate chip pancakes = gluten-free bisquick is easy to use and add choc chips to

cinnamon toast = try it with udi's white bread (there are alot of gluten-free breads out there that taste like drywall -- udi's makes great cinnamon toast or french toast :)

pizza = I had good luck using bob's redmill pizza crust - it tasted like regular pizza - was a bit tough to spread on the pizza sheet - if you wet your fingers with water to spread it around it makes it a lot easier. I made homemade tomato sauce, but have also used prego to make them quicker for my kids. Also the dough makes two pizzas - you can keep the second half in the frig for a few days.

If those are his favs....I would try grilled cheese with the udi's too.

Keep encouraging the apples and sauce -- I had one son that would only eat green apples and applesauce -- it helped when I got one of those apple corer machines that slices apples into curly cues -- he ate an apple a day that way when I could only get a slice or two into him before that. Eventually he decided he liked grapes and pineapple - he's 17 and still doesn't like many fruits. I also used to make him fruit smoothies all the time...threw in all combos of fruits: peaches, apples, pears, grapes, berries, pineapple, bananas, melon, etc. with a some ice cubes (blueberries work great to turn it purple) -- he drank them all -- I even snuck spinach into them and he never knew until he was about 14 ;)

Lisa, THANK YOU. All of these suggestions are very helpful!!! Do you happen to know if you can find the Udi's white bread at Whole Foods? I bought some other brand that is pretty nasty.

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Pardon my questions but I am trying to piece things together.

Who did this sensitivity testing on your son?

IgG testing isn't very scientific. I would not pull any foods from an already restricted childs diet based on IgG numbers. If it's an IgE allergy, yes but you are limiting a lot with not a strong amount of science as to why.

I know gluten-free/CF can help kids on the spectrum. I would start there and keep the rest of his diet the same if anything. If you got the Celiac tests done I would actually not pull gluten till you get the results as if they are + they may want to do a biopsy and he needs to be consuming gluten to get that done properly.

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Pardon my questions but I am trying to piece things together.

Who did this sensitivity testing on your son?

IgG testing isn't very scientific. I would not pull any foods from an already restricted childs diet based on IgG numbers. If it's an IgE allergy, yes but you are limiting a lot with not a strong amount of science as to why.

I know gluten-free/CF can help kids on the spectrum. I would start there and keep the rest of his diet the same if anything. If you got the Celiac tests done I would actually not pull gluten till you get the results as if they are + they may want to do a biopsy and he needs to be consuming gluten to get that done properly.

Hi Stephanie. It's his pediatrician who ordered the tests. I guess it's because he's on the spectrum and she though going Gluten-free Casein-free might be able to help him. I called today and his test for Celiac was negative. Do you think he really is intolerant to gluten and all of those other things if just the IgG tests were done?

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Yes, this is the child that can't have chicken or beef either! Or eggs or peanuts or... He's never tried bacon. I know it's hard to believe but he literally only eats 4-5 different things and that's it. He's never tried a hamburger. Or had any pork products. Now after talking to this allergist today, I'm not even sure I'm doing the right thing. Would you guys eliminate all of this stuff from your child's diet based off of the IgG tests? He has no gastro issues (never has) but has some behavioral issues (OCD, anxiety, possible Asperger's). His pediatrician was hoping going Gluten-free Casein-free (and everything else free) would help his behavior, asthma, allergies, and reoccuring ear infections. If I knew it would help him, I'd do it without question, but I won't know until at least a few months in if this diet will even help him.

My son is on a gluten-free diet for his autism, so I might have some advice here. The good news is that unlike being diagnosed with celiac where someone has to stop eating gluten immediately, you have the luxury of taking your time with this. I would start the diet more slowly. Replace one food at a time. Experiment with some recipes. When you find a gluten free version of something that he likes, replace the gluten version with it. That's how we did it. Our son was on a limited gluten diet for a year which is probably longer than most people feel comfortable with. Then we decided to go all the way. First week we did gluten-free for one meal, the next week 2, then on the 3rd week did it completely. One warning about doing it this way is that if the gluten is affecting his behavior, then doing the gradual approach won't tell you as definitely that it's helping. You'll only know when you do a gluten test (obviously you'd want to do several months of gluten free before giving him gluten to see if he reacts).

Unfortunately for Autism/Asberger's, the blood tests won't always tell you if a gluten-free diet would be helpful. Only way to know is to actually try it. I will tell you that for us it has been totally worth it. When we went gluten free, our son's language test score went up 20 points. Less repetitive behavior too. The kicker was when we did a gluten test - we had been letting him have occasional gluten with seemingly no problems so we thought he might not have an intolerance. So we let him have it several days in a row to see. We didn't tell anyone we were doing it. That Monday I got an e-mail from his teacher saying that she had never seen our son like this - tantrums, out of it, etc. The behavior changes we see when he gets too much gluten is very noticeable. But we've found that he does just fine with it every once in a while - birthday cake, the occasional grilled cheese sandwich when we are out. But 99% of the time, he's gluten free.

Sorry about the novel - just wanted to let you know that I've been there. Wondering if I was doing the right thing and how on earth I was going to make it work with my picky eater. Hang in there - if you decide to do it, you can make it work.

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Lisa, THANK YOU. All of these suggestions are very helpful!!! Do you happen to know if you can find the Udi's white bread at Whole Foods? I bought some other brand that is pretty nasty.

Here is the link to find Udi's near you:

http://udisglutenfree.com/store-locator/

I check it every so often as more and more stores seem to be carrying it and the price can vary between stores - especially when they put it on special.

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Here is the link to find Udi's near you:

Udi's has egg which I believe she is avoiding too.

There are any real good breads that are free of gluten and egg esp. with no nut cross contamination. It's been the hardest thing for us to find. We go for pancake sandwiches and rice cakes for bread.

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My son is on a gluten-free diet for his autism, so I might have some advice here. The good news is that unlike being diagnosed with celiac where someone has to stop eating gluten immediately, you have the luxury of taking your time with this. I would start the diet more slowly. Replace one food at a time. Experiment with some recipes. When you find a gluten free version of something that he likes, replace the gluten version with it. That's how we did it. Our son was on a limited gluten diet for a year which is probably longer than most people feel comfortable with. Then we decided to go all the way. First week we did gluten-free for one meal, the next week 2, then on the 3rd week did it completely. One warning about doing it this way is that if the gluten is affecting his behavior, then doing the gradual approach won't tell you as definitely that it's helping. You'll only know when you do a gluten test (obviously you'd want to do several months of gluten free before giving him gluten to see if he reacts).

Unfortunately for Autism/Asberger's, the blood tests won't always tell you if a gluten-free diet would be helpful. Only way to know is to actually try it. I will tell you that for us it has been totally worth it. When we went gluten free, our son's language test score went up 20 points. Less repetitive behavior too. The kicker was when we did a gluten test - we had been letting him have occasional gluten with seemingly no problems so we thought he might not have an intolerance. So we let him have it several days in a row to see. We didn't tell anyone we were doing it. That Monday I got an e-mail from his teacher saying that she had never seen our son like this - tantrums, out of it, etc. The behavior changes we see when he gets too much gluten is very noticeable. But we've found that he does just fine with it every once in a while - birthday cake, the occasional grilled cheese sandwich when we are out. But 99% of the time, he's gluten free.

Sorry about the novel - just wanted to let you know that I've been there. Wondering if I was doing the right thing and how on earth I was going to make it work with my picky eater. Hang in there - if you decide to do it, you can make it work.

I'm so glad you wrote this. I was wondering if I could do it slowly so he doesn't have such bad withdrawal from gluten. That's good to know that it's helping your son so much. Although my son is only a few days in and isn't eating much at all right now, I swear he's been so much nicer and more compliant since I've changed his diet. Thanks for the encouraging words!

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I found Udi's today at Target!!! I know it has egg in it but for now I'm just cutting back on the gluten. One thing at a time. Haven't tried the bread yet. Well I did make it but he refused to eat it. So far today he's only eaten 2 applesauces and has refused everything else. He says I'm going to go to jail for child abuse for not feeding him! Ha ha!!!

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My son tried that line too. :) Gluten has a pretty strong hold on them when they think it is the only thing that is food! I teased him that he might have to go to jail if all he wanted to eat was bread and water! Eventually their tastes change...hunger has a way of doing that to you. Udi's toasted with cinnamon and sugar is delicious. It's not real food but it sure is good! That is...if you aren't totally taking away sugar at this time. I think you are right to do it slowly like the mom above said. Keep updating us on how he is doing. It will be interesting to see what he ends up liking. Hang in there mom! Don't let him or this situation stress you out!

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This is my son's third day being gluten-free. He is 10 and is a HORRIBLE eater. So far, he refuses everything I offer him. He has only eaten a few gluten-free cookies, a gluten-free ice cream sandwich, and applesauce. He hates the gluten-free bread, the gluten-free pancakes that I made, the gluten-free pizza that I made (which was actually really good). If I throw away the few snacky-junky gluten-free items I bought, he'd probably eat nothing. Should I get rid of those items or do you think he will eventually eat something (other than trying one bite and saying he hates it)?

Have you tried Udi's bread? In my opinion, so far it is the best. It's better yet if you toast before making a sandwich/ toast, whatever. The brown rice pasta at Trader Joe's is great. I haven't really had any others that I thought were even edible. They also sell gluten free oats there! Hooray! They taste fresh, and are very affordable compared to Bob's Red Mill. Either Duncan Heinz or Betty Crocker makes a great cake mix/ brownie/ chocolate chip cookie mix. They have an outstanding Gluten-Free brownie mix at Trader Joe's too. Crackers are hard to find a substitute for. Sweets are easy to duplicate/ replicate. They have delicious gluten free waffles,rice krispy treats, Udi's hot dog buns, which are a little too big (same as their hamburger buns) but they are tastee. Ian's makes chicken nuggets; they are decent. Most Chex cereals are gluten free. The nature valley protein bars are gluten free. Litehouse ranch dressings are gluten free. Heinz just came out with gluten free catsup. Pamela's pancake mix is delish; no one else in my family is gluten free and they love them. Does your son eat fruits and veggies? That is the best thing for him anyway. Obviously he will eat sooner or later. I am sure that if starving children in Africa started out in America they would have like and dislikes too, but right now they would probably just be happy to have food. I am probably getting ready to put my daughter back on a gluten free diet; she has been on it before, with me. The doctors can not figure out what is wrong with her. The celiac disease in my family doesn't show up on blood tests or endoscopy, so for us, it has to just be trial and error. I know I have it; I have DH. It is so hard in the beginning, but it gets easier. Blessedly what is wrong with your son can be controlled with dietary changes, instead of him having to take mind altering drugs or him having cancer. Keep your chin up. It gets better.

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Hi Stephanie. It's his pediatrician who ordered the tests. I guess it's because he's on the spectrum and she though going Gluten-free Casein-free might be able to help him. I called today and his test for Celiac was negative. Do you think he really is intolerant to gluten and all of those other things if just the IgG tests were done?

Udi's has cinnamon raisin bread that is amazing. I hate the Bisquick gluten free. It tastes like bad corn bread. Try Pamela's products!

Also, I make chicken nuggets for my kids with gluten free oat flour batter....

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I found Udi's today at Target!!! I know it has egg in it but for now I'm just cutting back on the gluten. One thing at a time. Haven't tried the bread yet. Well I did make it but he refused to eat it. So far today he's only eaten 2 applesauces and has refused everything else. He says I'm going to go to jail for child abuse for not feeding him! Ha ha!!!

Hi Chrissy-

I didn't know Target carried - so I checked mine and found a Hearty Grain - just thought I'd check if your Target carried the "white" as I thought of your son when I picked ours up today and wanted to be sure you were able to try his cinnamon toast with white, not grain bread.

Hope all is going well!

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