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Do Your Kids Cry For Food They Can't Have?


SAHM2one

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SAHM2one Contributor

My son just turned 2 at the end of August. We still have him on gluten when we are out of the house but I regret it every time we give it to him. His favorite foods are bread and pasta and when he sees someone else eating these he will cry and beg for some. Then we have to put up with a irritable clingy toddler with a belly ache for the rest of the day. We don't feel like he is eating enough gluten for a positive celiac panel so we decided to now just make him gluten free and do genetic testing instead.

Now how do I get him through this stage of wanting what makes him sick without going crazy! How do I deal with birthday parties when everything there is full of gluten? What about holiday dinners with family that doesn't understand?

Please help me!

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dandelionmom Enthusiast

I just keep lots of gluten-free treats on me at all times. I keep snack sized M&Ms in my purse, Envirokids bars in my car, and Pamela's cupcakes in my freezer. Sometimes I'll one-up the gluten treat by providing an even better gluten-free treat (like if everyone is eating a plain donut, I try to bring a gluten-free frosted, sprinkle donut).

And for family we're really strict, either support the diet or we're not coming until the food is gone. Some family members have made a huge effort to be completely gluten-free when we're over. That is wonderful and we really appreciate it. But it isn't necessary. For the family that doesn't do this, we just bring food for our daughters and stress to everyone that the girls will only eat from their lunch boxes (fun, sparkly princess boxes that are filled with their favorite foods).

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celiac-mommy Collaborator

If you decide to keep him gluten-free, then there should be no circumstance where gluten should intentionally be given to him. If he cries about it, he cries about it. I would rather hear my child cry than give him something that makes him sick. I always try to plan ahead with foods for the kids. If there are parties or family functions, then I will ususally call ahead to find out what will be served. If my dd is going to a pizza party, I will make pizza and her own dessert-decorated to her specifications. My son was 2 when he was diagnosed and he has had a little harder time since he didn't understand why he couldn't eat what the other kids were eating. But most of the time, when I bring them their own food, the other kids are drooling over it. One instance was a surprise b-day I wasn't aware of and since his preschool is on our hospital campus, I ran to the cafeteria to find somthing for him. I ended up with strawberries and Kozy Shack chocolate pudding for him to dip in. All the other kids at his table just sat there and watched him eat and didn't want to eat their GIANT Coscto cupcakes.

Anyway, if you ever need help planning food, don't hesitate to ask. It does take some time getting used to all this and you might need to plan ahead a little, but it's do-able. We also focus on all the stuff they CAN have, but not what they can't. I also avoid Italian restaurants (or like) where there's absolutely nothing for them to eat. I may suggest an alternative restaurant.

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SAHM2one Contributor

thank you to you both. I have been gluten free for a month and feel so good, I really hope this helps my son. If not it will help me out since I hate when has gluten since it makes meal time for meal stressful since I have to worry about CC the whole time.

Thanks for the food ideas. We are having a picnic thing this Saturday at church, everyone is having pizza so I will have to pack Jackson and myself a special lunch. Hopefully I can make it fun enough that he won't mind.

Because I am already gluten-free my family has already agreed to a gluten-free Thanksgiving, my husband's side is a different story.

I am sure I will be back with questions, feeding myself gluten-free is one thing but feeding my son just seems so much more daunting.

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Guhlia Rising Star

My daughter also never ate enough gluten to be tested. We tried testing through Enterolab, but it came back negative. We decided to try going gluten free and she does MUCH better like that. Like others said, I always carry gluten free snacks/goodies with me just in case. I keep cupcakes or donuts in my freezer for parties that she's invited to. I also call ahead and make sure I bring similar food for her to eat. If they're having chips, pretzels, and cake I will supply her with a mini bag of chips, a mini bag of pretzels, and a cupcake. This has worked for us so far. She used to cry sometimes when she couldn't eat something, but she learned really quickly that mommy wasn't giving in and she stopped fussing. Now if she misses out on something she'll ask me if she could have some M&M's at home or a milkshake or soda or something. I often say yes, but even when I say no she accepts it. We're not big on sweets anyway, so she understands that.

As far as him loving pasta and bread, can he have the gluten free versions at home? Then he won't "need" it when he sees someone else eating it out. We LOVE Tinkyada pasta and Kinnikinnick cheese tapioca bread. They're our guilty pleasures. I've found that my husband (not Celiac, but gluten free at home) doesn't even like "real" bread and pasta anymore. He says it feels all weird and sticky in his mouth and makes him gag. lol

Ian's gluten free pizza kits are WONDERFUL and the pizza is still great cold. Perhaps you could locate a pizza kit before your picnic this weekend? If not, you could get some gluten free bread and dip it in pizza sauce and pizza cheese like a lunchables type thing. That would be fun and probably really tasty too. Also, if you're ready to attempt gluten free baking I just posted a recipe for gluten free pizza in another thread. I'll have to search for the thread...

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Fiddle-Faddle Community Regular

If gluten is a problem for him, and you are letting him have it, even occasionally, it will literally trigger CRAVINGS for gluten in him--in gluten-sensitive people, gluten causes an opioid response, and makes you want more and more and more....

It is surprisingly simple to learn how to make (from scratch) a gluten-free version of whatever everyone else is having.

If everyone is having pizza, make some in advance using corn tortillas for crusts (I've posted the recipe here several times, but let me know if you can't find it). It takes 10 minutes start to finish. Or less.

If everyone is having chicken nuggets, make your own using precut chicken tenders--sprinkle with seasoned salt, dip them in beaten egg, roll in corn meal, and fry or bake. It is very quick.

gluten-free pasta is available everywhere, and is virtually indistinguishable from gluten pasta.

Brownies, cookies, muffins, pancakes, even bread--these are all relatively simple to make, and not that time-consuming. (I am a working mom of 3 and I can manage it!)

It IS daunting at first, but please don't be scared of it! It really is way easier than it sounds!

I also suggest making ONE gluten-free (meal) (cake) (batch of cookies) (batch of pizzas) for everyone in your household, no exceptions. The gluten-eating members of the family won't complain--because everything tastes good!

If you need recipes for old favorites, please pm me or better yet, put a post in the recipe section and get LOTS of recipes!

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ryebaby0 Enthusiast

It must be very hard to have one dx so young. Imagine how confusing it is for him, to sometimes be allowed gluten, and sometimes not. Try and think of it like playing in traffic --- you'd just never allow it, no matter the circumstances, or how inconvenient, etc. But it is hard.

In addition to all the great suggestions already, you might add some super-wonderful dishes. Special "gluten-free for you" dishes for special occasions, funky placemats, etc.. It makes eating fun again. I also second the "learn how to make it gluten-free" advice. Let him cook with you, and it will be even more interesting to him. (Even a 2yr old can stir, or be a cookie taster)

Good luck. It does get easier, but some family members will NEVER get it. Don't let them rain on the parade, and don't make their belief in your diet part of what you need to continue.

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celiac-mommy Collaborator
Try and think of it like playing in traffic --- you'd just never allow it, no matter the circumstances, or how inconvenient, etc. But it is hard.

That's a fabulous analogy!!! Very effective!

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Lizz7711 Apprentice
We don't feel like he is eating enough gluten for a positive celiac panel so we decided to now just make him gluten free and do genetic testing instead.

Well, I had my daughter tested by enterolab before going gluten-free, she was positive, so then we've been gluten-free for 9 months. She just had a Dr. appt (first one sicne before enterolab test so the doc didnt' know yet), and since we were going to draw blood for a standard blood panel and also check her alkphos for bones, the doctor decided to run a celiac panel too. I thought it would all be negative becuase it's been so long, and also she does not have DQ2 or 8, but her gliadin IgG antibody was 44.6, moderate to strong positive!

I think since it's covered by insurance, you might as well do the blood tests, and i'd also do enterolab for confirmation or to check if the blood tests are negative...they also do gene testing as part of the panel.

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SAHM2one Contributor

Thanks, I am busy today looking for recipes. Last week was good. We were at my mom's for 3 days, I sprained my ankle and can't walk, and any time he saw something that had gluten I told him what was in it and that it would make his tummy hurt. Every time I said that he would say Oh and walk off or then ask for something else.

We ate our special lunch in my sister's office yesterday while everyone had pizza and then rejoined them once the pizza was put away. Jackson never even realized pizza was for lunch that day, so it all worked out.

He is sick today with a cold but I really think his attitude before today is much better.

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ChemistMama Contributor
...any time he saw something that had gluten I told him what was in it and that it would make his tummy hurt. Every time I said that he would say Oh and walk off or then ask for something else.

SAHM2one,

That is the best approach. My DS was diagnosed at 18 months, and if he wanted something he couldn't have, we'd say "No, that has Gluten, you'll get a tummy ache", and offer him a gluten-free alternative. He was so sick that he wouldn't even eat chocolate chip cookies because they made him sick, so he already knew that gluten=pain. He's 2 and 1/2 now, and last month he even refused goldfish crackers from another toddler!! He pointed at them and said "No, gluten!" Teaching your little guy how to eat is the best defense against him getting sick.

As for birthday parties, what I do is make a dozen gluten-free chocolate cupcakes, and individually wrap and freeze them. gluten-free baked goods freeze well, and you can whip up a tiny batch of frosting from just a little butter, milk, powdered sugar, and cocoa.

If the relatives aren't supportive of your diet, you will have to be rude and bring your own food. Tell them the health of you and your son takes precedence over their hurt feelings. You can start to help them understand by offering to bring a gluten-free dish that you and your son can eat, like rice stuffing, so that you have some food and they can see that lots of normal foods are in fact gluten-free.

One thing you should invest in is a nice small soft-sided cooler, Igloo makes a model that's heavily insulated and not much larger than a big purse, I got mine at Target. THey also sell plastic containers that have snap seals, like Lock&Lock or Snapware that also have individual sections inside. You can easily pack a lunch for you and your son and not worry about it going bad. A great site to visit is lunchinabox.net, she packs bento lunches for her young son (bento=japanese box lunches), and her husband was nisdiagnosed w/ celiac, so she has various recipes tagged gluten free. There are some great ideas, even though I would never spend that much time in the AM prepping lunch for my toddler!! :)

Here are some more easy food ideas for your little guy"

- tinkyada pasta and Kraft popcorn cheese (in the blue cylinder, found in the refrigerated section) makes a grumpy toddler happy!!

-forget sandwiches, I make the kids ham and cheese 'roll-ups', which is just sliced ham and cheese rolled up. They love it more if I use cream cheese instead of the American slices. Lay's Stax chips (in the plastic containers) are the only Lay's that are gluten-free and my son loves the Ranch flavor.

-Put things on sticks. gluten-free hot dogs (hebrew national, oscar meyer) or cubed meats and cubed cheese on bamboo skewers. My little guy always gets a big kick out of it.

-Bush's baked beans and hot dogs/low fat sausage like Hillshire Farm's Turkey sausage. Celiacs need extra fiber, and beans are awesome. My kids love black beans and sausage too.

-I strongly suggest you invest in a decent rice cooker, it'll save you lots of time and problems. The japanese type rice (Calrose or Botan brand) cooks up nice and sticky, they kids can eat it easier.

-devilled eggs, or any kind of eggs are a good protein for lunch or dinner. Who says you can't have omlettes for dinner? We had Omlette NIght as a kid every week.

-Most important, keep it simple. Fresh meats, vegetables, simple grains are best. Bottled sauces often contain wheat. Check your spice cabinet and get some new herbs and spices to jazz up your cooking. Get a copy of Mark Bittman's "How to Cook Everything" and a copy of Bette Hagman's Gluten Free Gourmet cookbook. You'll be cooking a lot more now!

I wish you luck, and it does get easier!!

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SAHM2one Contributor
SAHM2one,

That is the best approach. My DS was diagnosed at 18 months, and if he wanted something he couldn't have, we'd say "No, that has Gluten, you'll get a tummy ache", and offer him a gluten-free alternative. He was so sick that he wouldn't even eat chocolate chip cookies because they made him sick, so he already knew that gluten=pain. He's 2 and 1/2 now, and last month he even refused goldfish crackers from another toddler!! He pointed at them and said "No, gluten!" Teaching your little guy how to eat is the best defense against him getting sick.

As for birthday parties, what I do is make a dozen gluten-free chocolate cupcakes, and individually wrap and freeze them. gluten-free baked goods freeze well, and you can whip up a tiny batch of frosting from just a little butter, milk, powdered sugar, and cocoa.

If the relatives aren't supportive of your diet, you will have to be rude and bring your own food. Tell them the health of you and your son takes precedence over their hurt feelings. You can start to help them understand by offering to bring a gluten-free dish that you and your son can eat, like rice stuffing, so that you have some food and they can see that lots of normal foods are in fact gluten-free.

One thing you should invest in is a nice small soft-sided cooler, Igloo makes a model that's heavily insulated and not much larger than a big purse, I got mine at Target. THey also sell plastic containers that have snap seals, like Lock&Lock or Snapware that also have individual sections inside. You can easily pack a lunch for you and your son and not worry about it going bad. A great site to visit is lunchinabox.net, she packs bento lunches for her young son (bento=japanese box lunches), and her husband was nisdiagnosed w/ celiac, so she has various recipes tagged gluten free. There are some great ideas, even though I would never spend that much time in the AM prepping lunch for my toddler!! :)

Here are some more easy food ideas for your little guy"

- tinkyada pasta and Kraft popcorn cheese (in the blue cylinder, found in the refrigerated section) makes a grumpy toddler happy!!

-forget sandwiches, I make the kids ham and cheese 'roll-ups', which is just sliced ham and cheese rolled up. They love it more if I use cream cheese instead of the American slices. Lay's Stax chips (in the plastic containers) are the only Lay's that are gluten-free and my son loves the Ranch flavor.

-Put things on sticks. gluten-free hot dogs (hebrew national, oscar meyer) or cubed meats and cubed cheese on bamboo skewers. My little guy always gets a big kick out of it.

-Bush's baked beans and hot dogs/low fat sausage like Hillshire Farm's Turkey sausage. Celiacs need extra fiber, and beans are awesome. My kids love black beans and sausage too.

-I strongly suggest you invest in a decent rice cooker, it'll save you lots of time and problems. The japanese type rice (Calrose or Botan brand) cooks up nice and sticky, they kids can eat it easier.

-devilled eggs, or any kind of eggs are a good protein for lunch or dinner. Who says you can't have omlettes for dinner? We had Omlette NIght as a kid every week.

-Most important, keep it simple. Fresh meats, vegetables, simple grains are best. Bottled sauces often contain wheat. Check your spice cabinet and get some new herbs and spices to jazz up your cooking. Get a copy of Mark Bittman's "How to Cook Everything" and a copy of Bette Hagman's Gluten Free Gourmet cookbook. You'll be cooking a lot more now!

I wish you luck, and it does get easier!!

Thank you so much! You gave some great ideas for lunch and snacks! I love to do bentos already so I am just having to find more creative ways to make a cute lunch. I found a rice chex recipe for faux sushi using gummy bears and I am going to use fruit instead. I think my son will like them. I bought a lunch box for him, need to get a lidlock box his is missing, and we call it his special lunch. He was so proud of his special lunch the two times we used it that I think that really helped. Hopefully he is so young that eating gluten free will be a part of life for him and he won't know a difference.

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Fiddle-Faddle Community Regular

Have you already checked out www.lunchinabox.net? It's a bento packed lunch blog by a mom of a 3-year-old.

The blogger who writes it is no longer gluten-free (her hubby was misdiagnosed with celiac when he actually had a rare intestinal bacterial infection, but they caught it when he didn't respond to the gluten-free diet), but most of her packed lunch ideas are easily adapted to gluten-free (and many ARE gluten-free). Only the few convenience products she uses, like crabcakes and veggie fritters, are not easily available, but can be easily made from scratch gluten-free.

She also has links to lots of other bento blogs.

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SAHM2one Contributor

I will check out that site!

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  • 7 months later...
Autumn's mom Newbie

What about a 13 year old who has a feeding button that's crying because she can't have her "fun eating" any more? Autumn gets her nutrition via g-tube since she is unable to eat enough to live. She CAN eat, but just not enough. She loves chicken selects, but just a bite or two and then she is finshed. She loves cake frosting and oatmeal cookies. We consider her eating as a FUN activity, not nutrition based. My daughter who has multiple medical issues has been diagnosed with a skin biopsy that is "highly suggestive of dermatitis herpetiformis" and already has ulcerative colitis.

She underwent an EDG and colonoscopy and blood work for Celiac Disease. Also in question is her dx of ulcerative colitis, her rheumologist thinks she has Crohn's Disease instead.

Results are one test positive for Crohn's and one for UC and the Celiac panel was negative as was the biopsy of her small intestine.

So we are back to all questions and no answers! :huh:

This year she has had 3 thrush and yeast infections from antibiotics. This time for certain, the yeast/thrush was apparent before she broke out in the same rash "dermatitis herpetiformis". The derm wants to biopsy the skin NEXT to a lesion now.

This has been an awful year for her and us. :(

Autumn's mom

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HiDee Rookie

To Autumn's Mom: You may want to look into the specific carbohydrate diet for your daughter. It's supposed to be very helpful for Crohn's and UC. There are several threads in various parts of this website (in the baking forum and other diseases forum etc.) about it. Essentially it's a totally grain-free, milk-free, sugar-free diet, which sounds kind of hard but many people have benefited immensely from it. This is the book to read if you decide to try it.

Good luck!

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  • 2 months later...
MeganD Newbie
My son just turned 2 at the end of August. We still have him on gluten when we are out of the house but I regret it every time we give it to him. His favorite foods are bread and pasta and when he sees someone else eating these he will cry and beg for some. Then we have to put up with a irritable clingy toddler with a belly ache for the rest of the day. We don't feel like he is eating enough gluten for a positive celiac panel so we decided to now just make him gluten free and do genetic testing instead.

Now how do I get him through this stage of wanting what makes him sick without going crazy! How do I deal with birthday parties when everything there is full of gluten? What about holiday dinners with family that doesn't understand?

Please help me!

I have found that if you do not take your child's illness seriously then no one else will either.

I've found it helpful to always, always have snacks available for my kids

I bake cupcakes in bulk and freeze them before frosting so I have something to bring to parties

If there is an upcoming event I contact the host and find out what is being served. I explain that my children have an allergy and offer to bring food. The host always goes out of their way to accommodate my children's needs

Encourage your child to eat a wider range of foods by offering them often and in tasty ways (the more nutrient dense foods aren't grain foods anyway!)

Stick to it and you will see the results. My children are happier and clearly healthier. Even difficult emotional issues have cleared up and they are more pleasant to be around.

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mommida Enthusiast

Hi Autumn's mom,

My daughter's recent EE diagnoses could require a feeding tube in the future. I was looking up some of the "fun" eating and they suggested suckers and cotton candy. I would also assume slurpees and popsicles would be safe too. Things that are pretty much pure sugar and wouldn't have other proteins.

Do you still and give her the amino acid based formula stuff?

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lizajane Rookie

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This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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