lilgreen

The outside world is hard enough, especially on school age children that are differnt. I think home should be a safe haven where everyone feels safe, loved and respected. It sounds like your family really needs to come together and decide together (even if you have to steer the initial conversations) what kind of home makes everyone feel good, talk about Gluten issues and other hot topics so that everyone can relate. Maybe you should let your family take charge of meals a bit more (to the extent they can depending on their age), so they could have a sense of pride for making something healthy for everyone. On your sons night and it would allow your son to have some sense of accomplishment for chosing the right kind of foods. Control is often something that leads people to many kinds of eating disorders, and IMO a celiac eating gluten isn't different from an obsese person eating unhealthy foods as it's self distructive. You need to build positive feelings about doing the right thing. Also encourage your child to be more involved in his own health, let him talk with his doctors (maybe even without you there) it will foster a sense of personal responsiblity and pride in feeling grown up.

This is for everyone who took the time to post, and this above post is a great way to end. Thank you all so much for your replies. I have removed almost all gluten foods in the house - there are none that entice my son. No crackers, no snacks of any kind. Dh agrees that this is a good move. He goes along with my strictness, but tells me calm down when I point out possible moments of cross-contamination (ie. baking gluten and gluten-free pizza buns on the same cookie sheet). He hasn't yet accepted the seriousness of it, but I'm working on it. We've been gluten-free for 3 years now and he has been great at making gluten-free food when he does cook, so that's good. There's still room to go. As for my son, I love the idea of putting him in charge of dinner one night! There are so many other excellent suggestions that were made in this thread to try to make this work better in our house and I'm going to mull them all over and make a plan. Thank you! Thank you!

We've know he has celiac disease since he was 5.5. He and I both have it and we've both been gluten-free since. The problem is that he has 2 younger brother who don't have it and a foodie husband who can't fathom making our house gluten-free. Another problem is that my son's reactions to eating gluten are minimal... stomach ache and soft stools at the most.

So, I've noticed lately that he's been sneaking gluten foods like Ritz crackers and granola bars, other crackers, etc. I don't know what to do. He knows generally about how celiac disease works and why he's not supposed to have gluten, but without the harsh consequence of a nasty reaction, I'm at a loss of how to help him stay motivated to remain gluten-free.

I try as best as I can to have good foods in the house for him, but I admit there are times when his options are few.

Any suggestions would be a great help! Thank you!

I may be taking the family to Kampala next year for a few months. This includes myself and my oldest son (who will be 9 by then) who have celiac disease. We don't yet know about our baby who is 9mos, but showing no signs.

I'm wondering if any has been there. From what I've read, the food sounds incredibly gluten-free, but I'm wondering if there are major concerns about cross-contamination and/or not being clear about ingredients.

And, if you've spent time in Kampala where did you stay and what did you think of it?

Thank you so much!

PLEASE don't assume anything in this game. Here is a current list of gluten free candies:

http://files.meetup.com/30853/gluten-free%...ober%202007.pdf

Thanks, Momma Goose. And don't worry, my motto is 'no way' unless I know for sure. I had this link for Halloween but didn't bookmark it, so thank you for it.

The cinnamon heart are not on that list, unfortunately, so I'll keep looking around.

Cheers!

Those little valentine hot red cinnamon heart candies. I'm assuming they are, but I"m wondering if anyone knows for sure so I can give my son's teacher the ok.

Thanks!

DS (almost 6) has so far lost his two front bottom teeth. The new teeth that have come in are yellow. His baby teeth are all healthy looking and he's never had a cavity. I suspect they're yellow due to celiac disease. He was only diagnosed late August. So, will all his big teeth be yellow?!? poor guy. Do we go see the gastroentologist about this or the dentist? Is there anything we can do to get them whiter or is he condemned to having yellow teeth?

This morning on the walk to school ds had an awful foot cramp. Could this be a symptom of being glutened? He's had leg and foot cramps before but I never tracked them because I never thought they could be related, but now I'm wondering.

Thanks!

Would your DH be willing to go to a celiac support group meeting? I bet if you were to casually let it slip what DH has been up to, the other celiac moms would set him straight - and quick!

That's a great idea, although I highly doubt he's go. I had to really force him to go to the gastroentologist's. But, it's certainly worth a try. I know the Celiac Assoc of Canada has a Vancouver chapter (where we live), so I'll contact them.

I took ds to a football game this weekend, actually

But, I brought our own popcorn. When the security guard checked my backpack I explained that ds and I both have celiac disease which means we have to bring our own food wherever we go. As soon as I said that he was fine with all the snacks I brought.

I applaude your diligence about keeping your son safe from cross contamination. I wish with all my heart that our children had been diagnosed sooner. They are both celiac diagnosed at age 12 (dd) and 10 (ds)...unfortunately it was AFTER our son was diagnosed Type one diabetic at age 9, then lactose intolerant....it was AFTER our daughter was diagnosed hypothyroid at age 4 and as you see by the signature - a host of immune mediated diseases. Knowing what I know now, info from the GI and endocrinologist - and a lot of hindsight, each child had symptoms since an early age - I didnt know the migraines and leg pains and stomach aches were from celiac unitl they were diagnosed and we went gluten free. Since going gluten free, our son has been healthy and doing okay with giving himself 3 shots a day for diabetes. My daughter though - still continues to manifest strange illnesses and infections that specialists believe are related to her ongoing autoimmunity that ...at least in her.... doesnt want to turn off after so many years of "triggers" [gluten]

Your son was diagnosed early enough and if he is strictly gluten free - he may avoid daily insulin, growth failure from hypothyroidsim and other immune disease that can be triggered when the body has to react to gluten by sending the immune system on high alert. Each little bit of gluten, each stomach ache triggers a cascade of immune globulins into the system, damaged villi take time to recover...and while they recover...are inflammed and leak proteins into the blood.

You state the potential consequences so clearly - thank you. I'm so sorry your children have had such a rough time with this. I sure do count us lucky for getting a fairly early diagnosis, although ds had symptoms for years.

Dh gets that gluten is bad for ds, but it's those little bits he can't comprehend, so you've really made it clear what harm just a lilttle bit can do.

I will show him parts of your message. Thank you!

I can't thank you all enough for your ideas and support. I will make a list of the awful things that can happen to ds and show it to ds. i will keep 'party foods' in the freezer, too. Dh has to some degree embraced the gluten-free diet for ds... i bought the cookbook "incredible edible gluten-free food for kids" and dh has been making lots of food from it.

I'm really beginning to think there are respect issues at play, too. Tonight, for example, he was letting ds eat chips that I had told him more than once already are not on the manufacturer's gluten-free list, meaning they can potentially contain gluten. I told him again when I saw this and he said there was no gluten source in the ingredients. But, I had a reaction eating them a month ago (I'm a self-diagnosed celiac and went gluten-free with ds) and consequently contacted the manufacturer. argh!

Anywho, enough ranting. Thank you all. I know I can't be passive about this issue.

lilgreen,

It's a hard situation and I hope you can fix it soon for your DS's sake.

Someone I read here said that they keep a dozen cooked gluten-free cupcakes in the freezer. When their kid has to go to a birthday party, they pull out the cupcake, frost it with premade frosting (Betty Crocker vanilla is gluten-free, I believe) add some gluten-free sprinkles and send that with the kid to the party along with a small cup of ice cream or a gluten-free ice cream bar (have the host put the ice cream in the freezer). The cupcake defrosts in time for the party. So that way the kid doesn't feel left out. Pizza might be a little bit harder but you could send something like a home-made "Lunchables" with gluten-free crackers, pizza sauce cheese, pepperoni etc. The best offense might be a good defense.

If you do this, yes, you are doing a lot of work that maybe your DH should help you with but in time, it may help him see what is necessary to keep your son safe.

I think it would be unbearable to take a small kid somewhere and tell them they can't have the cake or pizza or whatever. My DS is 14 and just went to his first soccer end-of-year pizza party, and he sat and ate nothing, and it really made me sad/mad/unhappy! I promised my DS homemade pizza after the party and that was ok with him, he had a snack before he left, but he is much older than your DS.

Best of luck to you.

~Laura

Thank you. I did actually send them with a baked treat and snacks. No replacement for the pizza, though. I definitely agree that making ds not feel left out is best and 'should' help dh not feel like he's depriving ds. It is more work, but it is important. I will be more diligent with this. The freezer cupcakes is a really good idea. Thank you!

This is a really hard situation. How long ago was ds diagnosed? If it hasn't been long, I definitely agree it sounds like denial.

Just a quick response to say it's only been three months since ds' diagnosis, so I agree too that this is denial to some degree. Thank you for taking the time to respond.

Just yesterday he took him to a birthday party and let our son eat the meat and cheese off the pizza. he also let him eat the ice cream cake because the only thing containing 'wheat' was in the middle layer, which him made our son eat around. Beside cross contamination, there could have well been other gluten sources than 'wheat'. After dh went out last night, our son was rolling in his bed with horrible stomach pains.

Thing is, dh knows this! We all went to the gastroentologist together who said very explicitly that we should even consider getting separate toasters. I've bought the gluten-free for dummies book, but he won't look through it. I've told him about how ds suffers when he's glutened, but he feeels that some stomach aches aren't going to kill him, so it's not that big of a deal

What can I do to make him understand the importance of zero tolerance about gluten? Any suggestions would be greatly appreciated.

Thanks so much in advance.

I don't know if it's been mentioned, but we struggled, too, and just last week we bought the book "Incredible Edible Gluten-Free Food for Kids" (Open Original Shared Link .com/Incredible-Edible-Gluten-Free-Food-Kids/dp/1890627283). It IS incredible. EVery recipe we've tried so far has been a hit with everyone (including my gluten-eating husband who used to scorn gluten-free food).

I highly recommend that you get it. It's well worth it.

This is interesting... My cramps have vanished, but I chalk that up to nursing and having two children. I've read that cramps lessen with childrearing.

But, since going gluten-free my periods have been significantly heavier than ever before. BUT, that said, I've only just started menstruating again after years of being pregnant and nursing. It coincided faily closely with going gluten-free. So, I think my situation makes it impossible to figure out what the cause of my heavy bleeding is. I'm very curious about this, though.

Our gastroentologist said that the problem with oats is not risk of contamination, but rather due to the make up of its amino acid sequence. it is apparently extremely similar, but not entirely the same, as gluten's amino acid sequence. Scientists are inconclusive as to whether this similarity is problematic. Therefore, the resounding consensus is no oats, even though they may be gluten-free... just to be sure.

I've been dying for a crisp, too. I made a half decent one using just butter, cinnamon, sugar and rice flour for the topping last month. It totally satisfied my craving.

My symptoms aren't severe, but I'm wondering if that means that it likely requires more gluten for me to show symptoms than for someone with severe symptoms.

I'm wondering because I haven't gotten an official diagnosis, so I'm still second-guessing myself. It's in my family and my son was just diagnosed and every time I've been tested I've been on a gluten-restricted diet, so I've had negative results. I've been feeling notably better since going strictly gluten-free and I'd only had one notable instance of symptoms, which I think I traced to some chips I ate.

But, yesterday I had full-out stomach pains like I hadn't had in ages - not since going gluten-free - and I used to get them often. But I can't think of what I ate. The only possible thing was that I noticed the corn cereal I ate says "produced in a plant that processes wheat." I've been eating this cereal (without realizing this, obviously) for weeks without a reaction, though.

So, if the bowl of cereal I ate yesterday had a trace of wheat, could that really have cause my stomach pains? I know some people are super sensitive, but I always thought they also had super severe symptoms. Also, I know in the recent past I've accidentally used margarine with wheat bread crumbs in it for my toast with no reaction. So, can my reactions be this inconsistent, too?

Ahhh! I'm starting to think I should just go hard core gluten for three-four months to get a proper test done. But then I know how bad I'd feel. What gives??

This has turned into a ridiculously long post for something so basic... sorry! And, thank you!

Mostly I want cookbook recommendations, but if you know of any that do a good job of combining information (because my husband needs to be educated) with recipes, I would love that too.

My son and I have celiac, so cookbooks with recipes that kids will like are particularly welcomed.

Also, I personally don't eat meat (but the rest of my family does) so if anyone knows of any good vegetarian gluten-free cookbooks that'd be great, too.

Thanks tons!

I've been wheat-free for about a year and off and on before for years and now completely gluten-free for two months and feeling MUCH better.

Several years ago I had a negative biopsy (I'd been avoiding wheat, though) and more recently I had a negative blood test after not consuming wheat for at least six months. Ds was just diagnosed and his gastroentologist recommended that I get DNA testing.

Anyone know what this is about? I'm having a blood sample taken for this next week.

Thanks!

I have this with chips, too. Everytime I go to El Belazo and get their chips...thinking they are okay, I wake up with the worst left-sided pain the next day. And I'm always nauseated in the morning. Also, I'm wondering about something else you all said...."once you went gluten-free, you developed many more sensitivities." Why is this? There are so many things I cannot tolerate now. While a lot of my gastro symptoms went away, I have others that came and others that just linger and linger and linger. Does anyone have any good articles or knowledge about why this is?

I suspect that I've had my other sensitivities all along, but could never distinguish them because gluten was so pervasive in my diet and I was constantly having problems. I wonder, though, if htere is more to it....

What kind of oil were the chips fried in? Gluten usually hits me in about 20-30 minutes. Cottonseed oil gives me the same reaction, at least it feels like it. Cottonseed oil is used in a lot of things, there may something in the chips apart from gluten that you don't tolerate. Once I went gluten free I became much more sensitive to foods.

Yes, I'm finding this, too... especially with dairy. I'm not sure what the chips were cooked in, but I've checked with the manufacturer and the chips are not on their gluten-free list, so gluten is possible. It's good to know that there might be other explanations than just gluten and I will definitely pay close attention to cottonseed oil. Very interesting! Thanks!

I had tortilla chips yesterday and within a few minutes I started reacting. I'm only just learning that even corn chips can have hidden gluten (I'm newly diagnosed), but to have a reaction so quickly seems a little unreal. Is that possible?

Thanks!

I've noticed that I feel noticeably better when I don't eat wheat. So, about 5 or 6 months ago I stopped eating baked wheat products (but I didn't pay close attention to ingredients so I still had soy sauce and the such). Every now and then I'll have a bite of my child's sandwich or something, but nothing substantial in 5-6 months. I eat tons of oats, though, all day long.

I posted recently how I had a negative biopsy 3-4 years ago and as I remember I was going light on the wheat products then, too, although I hadn't cut them out as much as I have this time. But, now my oldest son has been diagnosed with Celiac, my grandma and great aunt also have it. My dad is waiting for his results and he strongly suspects it (he is also an MD).

BUT I had a blood test last week and my dr hasn't called, meaning it was negative. Because I don't eat wheat, could my blood test be negative even if I have Celiac? If so, how long would I have to consume wheat to get a positive result? I feel like I really need the official diagnosis. Also, my husband is still an unbeliever and has a hard time believing I need to go the complete gluten-free route. So, if I had the diagnosis life would be soooo much easier.

Thanks so much for all your wisdom

We're new to this whole gluten-free diet, so bear with me. We just bought a bread machine and tried a gluten-free recipe and it turned out fine, but it's just so dense and had a very overbearing yeast taste. Does anyone have a bread machine recipe that might be a bit lighter? Thanks tons in advance!