Help understanding the seriousness of cross contamination issues

[Foreignlady]

Good afternoon, 

My 5 year old daughter has just received her diagnosis of celiac's disease after a biopsy. I have not met with the gastroenterologist since the diagnosis (apparently next appointment will only be in a few months) and we have been told that we will be contacted for an appointment with a nutritionist in a few weeks. Until then, I am left with a lot of questions. 

This is day 2 of going gluten free and I am feeling slightly insane. I see bread crumbs everywhere! I am trying to think of all the ways cross contamination can occur and have designated a small isolated section of my counter as the GLUTEN counter, where anything bread related must happen. As I fiddled around making three different lunches to accommodate my 4 small children's particular dietary needs and preferences (the 5 year old with celiac is the eldest, and one of my twin babies has an egg allergy), I thought I would lose my mind. Bread crumbs would travel on my fingers, I worried about transporting toast to a plate near hers, and of course, the dreaded idea of toasting her first ever slice of gluten free bread in the regular toaster. I must have washed my hands 10 times and I had to restrain myself from making her eat at a separate table lest her twin baby sisters started to toss their crusts around. 

I am making a list of things to buy to use exclusively for gluten-free stuff: I need new wooden cooking instruments, a new nonstick pan, a new toaster... or do I? 

There is a part of me that wonders if I am succumbing to some kind of collective gluten paranoia. Please don't get upset at me for feeling that way! I just have trouble wrapping my head around the idea that a tiny trace of gluten left in a pan that has been cleaned could really do any damage. I have tried to think of the gluten as a poison. It's not like I would accept "just a wee bit of arsenic" in my children's food. But then again, I am visualizing gluten like a feral cat clawing away at my daughter's gut, and then thinking about the little speck of gluten leaving a tiny pinprick... which doesn't seem so concerning. 

So how bad is cross contamination REALLY? In your experience, based on your knowledge, based on your opinion. I'm open to your thoughts. 

But, please understand that at this time, I am NOT considering turning my home into a gluten-free home. I don't want everyone to be deprived because of one person's diagnosis, and quite frankly I can barely imagine how I will finance one person's gluten-free diet, let alone 6! 

Thanks for your feedback!

[ravenwoodglass]

You are right to be a bit paranoid about cross contamination. I don't have much time but will say it is going to be okay. Read the Newbie 101 thread at the top of the Coping section. It has a lot of info that will be useful to you. Do be sure to have all her siblings tested as well as you parents. Even if they don't have symptoms, or don't seem to be having any.  I know others will be on to also give you some guidance.

[kareng]

2 hours ago, Foreignlady said:

Good afternoon, 

My 5 year old daughter has just received her diagnosis of celiac's disease after a biopsy. I have not met with the gastroenterologist since the diagnosis (apparently next appointment will only be in a few months) and we have been told that we will be contacted for an appointment with a nutritionist in a few weeks. Until then, I am left with a lot of questions. 

This is day 2 of going gluten free and I am feeling slightly insane. I see bread crumbs everywhere! I am trying to think of all the ways cross contamination can occur and have designated a small isolated section of my counter as the GLUTEN counter, where anything bread related must happen. As I fiddled around making three different lunches to accommodate my 4 small children's particular dietary needs and preferences (the 5 year old with celiac is the eldest, and one of my twin babies has an egg allergy), I thought I would lose my mind. Bread crumbs would travel on my fingers, I worried about transporting toast to a plate near hers, and of course, the dreaded idea of toasting her first ever slice of gluten free bread in the regular toaster. I must have washed my hands 10 times and I had to restrain myself from making her eat at a separate table lest her twin baby sisters started to toss their crusts around. 

I am making a list of things to buy to use exclusively for gluten-free stuff: I need new wooden cooking instruments, a new nonstick pan, a new toaster... or do I? 

There is a part of me that wonders if I am succumbing to some kind of collective gluten paranoia. Please don't get upset at me for feeling that way! I just have trouble wrapping my head around the idea that a tiny trace of gluten left in a pan that has been cleaned could really do any damage. I have tried to think of the gluten as a poison. It's not like I would accept "just a wee bit of arsenic" in my children's food. But then again, I am visualizing gluten like a feral cat clawing away at my daughter's gut, and then thinking about the little speck of gluten leaving a tiny pinprick... which doesn't seem so concerning. 

So how bad is cross contamination REALLY? In your experience, based on your knowledge, based on your opinion. I'm open to your thoughts. 

But, please understand that at this time, I am NOT considering turning my home into a gluten-free home. I don't want everyone to be deprived because of one person's diagnosis, and quite frankly I can barely imagine how I will finance one person's gluten-free diet, let alone 6! 

Thanks for your feedback!

A person with Celiac cannot have gluten!  they can not take the burger off the bun!  A few crumbs every day will hurt her.  Think of gluten like a germ.  Its very small, but once it gets in your bosy, it will do damage.  

 

You need a separate toaster.  buy one in red.  Buy some red duct tape.  Or pink if you can find that!  She needs separate butter tubs, peanut butter, etc.  Use the duct tape on the lid of the butter tub or PB.  Anything you double dip into. 

You don't necessarily need separate pans, etc.  But you do need a colander that you have never drained gluten pasta in.  Use it for rinsing fruit, beans, gluten-free pasta, etc.  Maybe get a red one - to go with the gluten-free is red theme.

 

 

 

[squirmingitch]

You will need separate cutting board for the celiac daughter. These are great:

Open Original Shared Link

Read the Newbie 101:

Parchment paper or butcher paper is great for spreading out on the counter where you're making her food.

[squirmingitch]

1 hour ago, kareng said:

 

  Your idea that keeping her a "little" bit sick by giving her crumbs on purpose is ..... horrible.  She can't heal that way.  

This is an unfair statement. The panicked mom did NOT say she had any intention of keeping her a"little" bit sick by giving her crumbs on purpose.

This mom is asking for our help & freely stating she is overwhelmed & trying to understand. she doesn't need to be slammed unfairly. She says she's feeling slightly insane. I can relate to that. I still clearly remember my first day 6 years ago & coming on here posting in an absolute panic asking, nay screaming, what will I eat for breakfast in the morning. What CAN I eat???!!!!! I remember the confusion, the overwhelming questions and uncertainty. We need to be cognizant and understanding.

Foreignlady, I am pressed for time right now but I will be back later with some suggestions. Hang in there & breathe, just breathe. It's going to be alright. It really is. 

[kareng]

Just now, squirmingitch said:

This is an unfair statement. The panicked mom did NOT say she had any intention of keeping her a"little" bit sick by giving her crumbs on purpose.

This mom is asking for our help & freely stating she is overwhelmed & trying to understand. she doesn't need to be slammed unfairly. She says she's feeling slightly insane. I can relate to that. I still clearly remember my first day 6 years ago & coming on here posting in an absolute panic asking, nay screaming, what will I eat for breakfast in the morning. What CAN I eat???!!!!! I remember the confusion, the overwhelming questions and uncertainty. We need to be cognizant and understanding.

Foreignlady, I am pressed for time right now but I will be back later with some suggestions. Hang in there & breathe, just breathe. It's going to be alright. It really is. 

She did say she thought it was insignificant like a little prick.  that will keep her sick.  I want her to understand this is a real illness.  I am sorry if I was a bit harsh, but I have seen so many of these parents and the "little bit won't hurt" strategy. 

[Foreignlady]

Thank you very much squirmingitch for coming to my defense. I literally interrupted my dinner to come post because I am livid. 

I came here specifically to ask for help coming to terms with the seriousness of this condition. That I should be received this way and that there should be any implication that I mean my daughter any harm is truly offensive. That kareng appears to be a moderator here is utterly alarming. 

I will be seeking my support elsewhere. I am sorry because others seemed welcoming and knowledgeable. 

kareng, you are a horrible person.

[kareng]

11 minutes ago, Foreignlady said:

Thank you very much squirmingitch for coming to my defense. I literally interrupted my dinner to come post because I am livid. 

I came here specifically to ask for help coming to terms with the seriousness of this condition. That I should be received this way and that there should be any implication that I mean my daughter any harm is truly offensive. That kareng appears to be a moderator here is utterly alarming. 

I will be seeking my support elsewhere. I am sorry because others seemed welcoming and knowledgeable. 

kareng, you are a horrible person.

 

I am sorry you feel that way.  I just wanted you to understand the seriousness of this illness.  I have seen too many moms & dads that think a little bit won't hurt their child.  I am glad that was not your intention and will not respond to you any longer, if that will help. Obviously, I could have said that better.

[squirmingitch]

Foreignlady, I sincerely hope you will stay. We DO want to help. I hope you will read this & change your mind and decide to stay. This really IS the best site by far to receive support & advice. Now just bear with me please. For once, I am going to be the voice of reason & play the peacemaker. Believe me, I can be the fiery little b%$@# at times. So woo hoo! I'm going to put on a peacemaker hat. Wow, whoda thunk it.

Okay, from Karen's perspective and that of all of us I think, who have been here a long time, and Karen has been here long, long before I got here. We get burnout. No 2 ways about it. It happens, It's a fact of life. Sometimes we recognize it & just step back & take some time off. As Karen stated, we DO see people who do not take this seriously, we do see people who think "a little won't hurt" or "I can cheat once in a while". And I have to say, that happens fairly often; it isn't a rare thing at all. People will come on here & claim to be & have been 100% gluten free & then a little later they say they had a gluten cookie here & a bite of gluten pizza there and we see red. Our emotions can run really high. I know that personally, there have been times I was overly rough on someone and sometimes we NEED to be rough & sometimes the lines get blurred. We are, all of us, human after all & therefore imperfect. 

Another issue is the written word. We can't see a person's face, see their body language, hear their voice. This results in us perceiving inflections that may or may not be there. Sometimes what we write comes off sounding completely different than what we actually meant. That applies to all sides.

I think this was an example of emotions running high on both sides. I do think Karen could have said that better. I think she & I read your post completely different. Maybe because she's a mom & I am not. I am not defending her; I am just trying to let you know how these things happen. 

So, with that said, can we try to move forward and try to take a calm approach? I surely hope so.

Foreignlady, I know you are absolutely beside yourself trying to deal with this. The flat out truth is that it IS totally overwhelming at first. You have 4 children, one of whom is allergic to eggs, and you have a husband and you may also be working full or part time. So right now you feel as if a boulder is crushing you. Learning the gluten free diet carries a very steep learning curve. You're going to make mistakes. Don't beat yourself up about it. Learn the lesson & move forward. What we really need to do right now is to make things as simple as possible for you. Let's see if we can lighten your load some & take a lot of that anxiety away. Now I know you said you don't intend to have a gluten free household but just hear me out please. We're also going to keep in mind expenses okay? Obviously it would cost a freaking fortune for you to buy gluten free bread for a family of 6. You're not a millionaire are you? All right, let's look at what you can do. You're going to need to think outside the box. The box is & always has been bread. Bread, bread, bread, flour, flour, flour. 

Why do we always have to have toast with breakfast? We don't. Take a look:

Open Original Shared Link

Your entire family can have these at breakfast and they cost much less than gluten free bread would. They can put jelly on them, butter them, you can have them room temp or warm them in the microwave. The kids can actually have PBJ's out of these & take them to school for lunch. You can fill them with refried beans, with eggs, you can make a fried egg sammich wrap complete with mayo. You can do anything with them that you would with a piece of bread. You can wrap them around a burger patty & have a burger wrap. Make it a fun thing for them.

I want to let you know about this. You did say you're in Canada right?

Open Original Shared Link

This might be of benefit to you also

Open Original Shared Link

Open Original Shared Link

There are always gluten free cereals for breakfast too. 

Open Original Shared Link

Now let's talk about family meals. Anything you need thickened, just use cornstarch instead of flour. So that takes care of the gravy, stew, etc......

Fresh, canned or frozen fruits & veggies. Fresh meats & fish. Dairy. What more do you really need for meals anyway? Roast a chicken & have veggies with it. Where's the gluten? There is none. The whole family can eat it at one table & no one is missing anything at all & yet you didn't have to worry about cross contamination. The egg allergic child can eat it, the celiac child can eat it & everyone "normal" can eat it. Pot roast is naturally gluten free as long as the spices you use are. 

Fresh fruits & veggies & meats are actually much cheaper than all that processed food. You would be surprised how much your grocery bill will actually go down. You'd be surprised how fast the whole family will make the transition to eating gluten free. When not at home, everyone except the celiac daughter can eat gluten but at home you just have naturally gluten free meals. Spaghetti you say? There are great gluten free pastas & they really aren't too expensive. Ronzoni makes fabulous gluten free pasta:

Open Original Shared Link

What does it cost you when you order pizza delivery? Compare that to buying

Open Original Shared Link

I guarantee you will feel so much more relaxed if the household is gluten free. It will take all that worry off of you. Get individual packages of gluten cookies for the kids to take to school & eat there or make them go outside to eat them. They come inside & wash their hands. 

Look at this for snacks.

Open Original Shared Link

Who would be missing anything? That's quite an impressive list right?

I'm just saying, it's not as big a deal as it seems to have the household gluten free AND then you don't have to worry about anyone double dipping in condiments or peanut butter or jelly so you don't have to buy the expensive squeeze bottles or mark containers as gluten free.

 

 

[Ennis-TX]

3 hours ago, Foreignlady said:

Good afternoon, 

My 5 year old daughter has just received her diagnosis of celiac's disease after a biopsy. I have not met with the gastroenterologist since the diagnosis (apparently next appointment will only be in a few months) and we have been told that we will be contacted for an appointment with a nutritionist in a few weeks. Until then, I am left with a lot of questions. 

This is day 2 of going gluten free and I am feeling slightly insane. I see bread crumbs everywhere! I am trying to think of all the ways cross contamination can occur and have designated a small isolated section of my counter as the GLUTEN counter, where anything bread related must happen. As I fiddled around making three different lunches to accommodate my 4 small children's particular dietary needs and preferences (the 5 year old with celiac is the eldest, and one of my twin babies has an egg allergy), I thought I would lose my mind. Bread crumbs would travel on my fingers, I worried about transporting toast to a plate near hers, and of course, the dreaded idea of toasting her first ever slice of gluten free bread in the regular toaster. I must have washed my hands 10 times and I had to restrain myself from making her eat at a separate table lest her twin baby sisters started to toss their crusts around. 

I am making a list of things to buy to use exclusively for gluten-free stuff: I need new wooden cooking instruments, a new nonstick pan, a new toaster... or do I? 

There is a part of me that wonders if I am succumbing to some kind of collective gluten paranoia. Please don't get upset at me for feeling that way! I just have trouble wrapping my head around the idea that a tiny trace of gluten left in a pan that has been cleaned could really do any damage. I have tried to think of the gluten as a poison. It's not like I would accept "just a wee bit of arsenic" in my children's food. But then again, I am visualizing gluten like a feral cat clawing away at my daughter's gut, and then thinking about the little speck of gluten leaving a tiny pinprick... which doesn't seem so concerning. 

So how bad is cross contamination REALLY? In your experience, based on your knowledge, based on your opinion. I'm open to your thoughts. 

But, please understand that at this time, I am NOT considering turning my home into a gluten-free home. I don't want everyone to be deprived because of one person's diagnosis, and quite frankly I can barely imagine how I will finance one person's gluten-free diet, let alone 6! 

Thanks for your feedback!

The fact that a tiny bit of residue or a crumb (think the blood a CSI tech can find in a murder scene) can lead to weeks-months of ongoing damage with a ramping cumulative effect of further exposure can give you a clue to the seriousness of it. I had to go to a dedicated gluten-free only house hold due to the time between accidentally and constant exposures in a shared house prevented me from getting better.

The points on having dedicated gluten free cookware for your gluten-free stuff is great, the parchment/butcher paper make a safe crumb free prep area, and a eating area that can be just tossed when done, Foil line baking dishes, pans, etc, Food service gloves will be great also. FLOUR is a HUGE no in the kitchen btw, tha poof from opening the bag will go airbornce and CC everything so you might just want to straight up replace your gluten flours with a gluten-free mix, same with pancake/cake mixes...that dust will be a panic attack nightmare. Crock pot liners will make it easy to do a soup in, and microwave cookware from nordic ware like omelette makers, steamers, grill plates with splatter cover will save you starting off. With these you can have a dedicated cooking method for her gluten free meals, go the extra mile if you want with disposable plates/cups/utensils if the house is not gluten-free. Double check soaps, shampoo. While not a direct issue others are going to touch it, touch their hair, touch everything else....and you know how kids are with putting their fingers in their mouth.
PS some times some of us are a bit blunt, I myself have asperger and do not pick on stuff, please forgive anything that seems insenstive, we deal with SOO many people here.
I do not mean to panic you but a slow transition to a total gluten free house will take SOO much stress off you. They make gluten free everything now days, I can show you a list. You can ease the rest of the family into it so you do not have a family riot. But they need to understand this is a genetic disease.....they probably have the genes for it and they could get it any day if something makes them non dormant. Here is a helpful list on some foods, I can show you where to bulk order parchment paper, foil sheets, and food service gloves if you need.

https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

[squirmingitch]

And believe it or not, there are super simple, quick & easy gluten free goodies recipes like this one for brownies:

Open Original Shared Link

 

You can make creamy tomato soup in almost the same time you can open the can of Campbells & heat it. Campbells is a no-no as it has wheat in it.

Here's the recipe:

1 can tomato sauce

2/3 can of milk - after you pour the tomato sauce in the pot, use the can for measuring the milk

1 Tbsp butter

Basil, either fresh or dried -- to taste

Pepper to taste

Toss it all in a pot & heat on medium high while stirring. 

This tastes far better than Campbell's. 

 

This makes fantastic pancakes

Open Original Shared Link

[squirmingitch]

And do be sure to get yourself, your hubby & the other kids tested even in the absence of symptoms as celiac can present at any age. If anyone shows symptoms then have them tested right away. For testing, the patient must have been eating gluten daily for 12 weeks if they have been gluten free but 1 slice of bread or a cracker or cookie is enough daily for that.

If either you or your husband turns up with celiac, then your/his siblings & parents should be tested.

[GFinDC]

Hi ForgeinLady,

Welcome to the forum!

You asked about the seriousness of gluten cross contamination.  First thing to know, a random glutening will not kill a celiac.   A glutening does lead to the immune system mounting a defense by making antibodies to the gut lining.  The antibody defense (or attack) can last for weeks or months, and the severity varies.  The antibodies attack the villi that line the small intestine and destroy them.  That can cause some pain and poor digestion and poor absorption of nutrients.  Over time (years) these affects can lead to numerous illnesses.  But stopping eating gluten does stop the damage after a while.  So a person can heal and lead a healthy normal life as long as they are gluten-free.   Crumbs do matter because the immune system reacts to tiny things like germs.  A crumb of gluten is huge compared to a germ, so it will most likely cause an immune reaction.

I agree, you don't need to go broke to eat gluten-free.  Meat, veggies, nuts, eggs, etc are the same price for celiacs as they are other people.  The suggestion to use Mission brand tortillas is a good one.  Another option is Aldi gluten-free tortillas/wraps.  Also, Sam's Choice gluten-free bread is available in some Walmarts' and is $6 a loaf.  Still expensive but ok for occasional use.

It is easier to start the gluten-free diet by eating mostly whole foods vs processed foods.  The ingredient label on an apple is pretty short.  So you can avoid a lot of label reading at the store by just not buying processed foods. 

The genes for celiac disease are related linked to other autoimmune conditions.  So you may notice other family members who have AI conditions also.

The gluten-free diet does get easier over time.  But starting out it is best to avoid eating at restaraunts for a few months.  Also dairy is sometimes hard for celiacs to digest.

Peppermint tea is a good thing to keep around for bloating.

[cap6]

Foreign Lady ~ Easy does it.  We can all run on a short fuse when stressed  and I expect that with a new food prep issue you are beyond stressed.

When I first started out I couldn't understand how one little tiny crumb could possibly hurt.  But it does.  That said, I know you will do everything you can to keep your little one safe.  Slow.  Slow.  Take it each day at a time.  You'll screw up.  We all do.  At 8 years g.f. I've screwed up. 

Personally, I would try to do as much gluten free for the entire family as possible.  Obviously some "gluten-free" speciality items are going to be expensive and that's when you could do separate meals, reg pasta for everyone and g.f. for your daughter.  In the beginning try to go as simple as possible.  Less stress!!   Grab some g.f. crackers for all the kids. Peanut butter (check the label!), veggies, eggs, meat, cheese - all the good stuff for snack that are g.f.   Try, if you can, to stick with whole foods.  When you add all the ingredients, sauces etc is when you run the risk of gluten having been added to a product. 

One meal, one day at a time.  And the best to you and your family 

 

[Foreignlady]

Thanks to all who kindly shared all this advice. It will be helpful in making choices for my family and trying to keep us all healthy (and sane!). 

[squirmingitch]

Don't forget to laugh. Laughing is a big part of keeping your sanity.

Just keep meals as simple as possible for a while. Easy, fast & simple. Crock pot meals, instant pot if you have one. When I come home from the store, I wash & cut veggies such as broccoli & cauliflower & throw them in a ziplock baggie. That way they are ready to go whenever I want to use them. Here's an easy one to do..... broccoli & yellow summer squash in a lidded microwave bowl, pepper, & butter slices, no water. Put the lid on & nuke for 5 minutes. Sprinkle with grated parmesan cheese if desired after cooking. Tasty & super easy. You can do the same with cauliflower & zucchini. You can add onion if you like. Throw in cherry tomatoes too. It's all versatile depending on what you & your family prefer. 

[Ennis-TX]

31 minutes ago, squirmingitch said:

Don't forget to laugh. Laughing is a big part of keeping your sanity.

Just keep meals as simple as possible for a while. Easy, fast & simple. Crock pot meals, instant pot if you have one. When I come home from the store, I wash & cut veggies such as broccoli & cauliflower & throw them in a ziplock baggie. That way they are ready to go whenever I want to use them. Here's an easy one to do..... broccoli & yellow summer squash in a lidded microwave bowl, pepper, & butter slices, no water. Put the lid on & nuke for 5 minutes. Sprinkle with grated parmesan cheese if desired after cooking. Tasty & super easy. You can do the same with cauliflower & zucchini. You can add onion if you like. Throw in cherry tomatoes too. It's all versatile depending on what you & your family prefer. 

I keep seeing this and it bugs the life out of me. While being a child the daughter might not have the damage some of use older celaics had when diagnosed but dairy is a common issue for those of us just diagnosed. You might want to go easy on the milk, cheese, cream. You can sub nut milks like cashew, almond, and coconut (canned is great in creamy tomato soup making it extra rich) and use non dairy substitutes for cheese like my homemade cheese sauces, leaf cuisine spreads, parma, find a shred that works for you.....

With damaged intestines you do not produced the enzymes to break down lactose in large amounts or at all. Casein protein is also a common issue that can trigger some reactions. Sorry to make this sound more limiting but most can bring dairy back in after a few months, but for now it could lead to some stomach issues and poor digestion slowing the healing process.
While I am totally against dairy myself as it is a bovine product genetically produced for bovine child growth, I understand some people eat the stuff. This is more of a perspective that with limited ability to break down and digest the dairy due to gut damage you child might not benefit from eating any and it just waste her bodies food intake and potentially cause distress to her digestive tract for now.

 

[squirmingitch]

And it bugs the life out of me that you said what I posted bugs the life out of you. Ohhhhhhhh Myyyyyyyyy Gawdddddddd! I actually posted a recipe that contains - GASP! dairy!!!!!! Flay me with a cat o' nine tails!!!!!! 

Dairy can be an issue with some of us but is by no means a given. There are plenty of us who never had a problem with dairy. Yes, celiac damages the villi & the tips of the villi are the first to be damaged and those tips are what breaks down dairy BUT this does not mean ALL the tips were damaged. My gosh, we know that villi damage is patchy in more cases than not. Plenty of celiacs have enough in tact villi tips to digest dairy. 

We can also have problems with soy.

BUT MANY OF US DO NOT HAVE PROBLEMS WITH DAIRY OR SOY. 

Those are just good things to be aware of. In my opinion, there is no need to eliminate those items unless one finds they need to.

We do not need to become afraid of food. Let's not decide we need to live in a bubble. We don't all need to drink special protein shakes in the morning. We don't all need to take 4,000 different vitamins & minerals. Let's not scare people!

[Foreignlady]

Thanks again for the tips. As for dairy, I won't eliminate without some evidence that she can't digest it. No reason to believe that now, she is not having any discomfort. 

But I came to terms with something: before worrying too much about crosscontamination, with a 5 year old I need to worry first about the GIANT contamination in the form of food she eats at school. In spite of all my coaching in the morning and sending her off with gluten free chocolate to share with her class on Valentines Day, a friend gave her money to buy something at the bake sale (why her teacher let her go there, I don't know!). And, same day, she ate a cereal bar on the bus that another friend gave her. It will be an uphill battle to get her to understand the seriousness. (Now,  please don't tell me I need to home school her ?)

[squirmingitch]

OY!  I don't know what they have in Canada, but here in the US, it's a 504 plan (I think that's the #) that is designed to be all inclusive throughout the school so that all teachers & administration know. You should check if you haven't already, & see what Canada has. They must have something. As to the school bus, oy, yoy, yoy; that's a sticky wicket. The bus driver can't be expected to monitor the passing back & forth of food. I would talk to admin at school & see what they suggest. You have your work cut out for you. BTW, play dough has gluten & in that instance, the stuff can get around & end up getting in your daughters mouth. I'm pretty sure there's some substitute that is gluten free but I'm not positive. Check out this forum

https://www.celiac.com/forums/forum/10-celiac-disease-parents-of-kids-or-babies-with-celiac-disease/

They have lots of info. & great tips for dealing with keeping celiac kids safe when away from home.

[ravenwoodglass]

5 hours ago, Foreignlady said:

Thanks again for the tips. As for dairy, I won't eliminate without some evidence that she can't digest it. No reason to believe that now, she is not having any discomfort. 

But I came to terms with something: before worrying too much about crosscontamination, with a 5 year old I need to worry first about the GIANT contamination in the form of food she eats at school. In spite of all my coaching in the morning and sending her off with gluten free chocolate to share with her class on Valentines Day, a friend gave her money to buy something at the bake sale (why her teacher let her go there, I don't know!). And, same day, she ate a cereal bar on the bus that another friend gave her. It will be an uphill battle to get her to understand the seriousness. (Now,  please don't tell me I need to home school her ?)

If she seems to do akay with dairy then keep it in her diet. If issues become clear then drop dairy for a couple weeks and then add in dairy that is lactose free, like the butter and parm cheese Squirmy mentioned, yogurt and hard cheeses like cheddar.

Do see about talking to them at school about the need to keep her safe. Sculpy (I know I didn't spell that right) is gluten free as would be true clay. Check the poster paints they may use and it is common to do paper-mache at her age. She can't do that because of the flour paste that is used.  I don't have a suggestion for an alternative for the paper-mache so another activity in a different room would be needed.

Talk to her about the seriousness of not eating anything that you have not okayed first.  Maybe you could arrange with her teacher to keep a supply of gluten-free snack bars that your child could be given at the end of the day to snack on when she rides the bus. You also need to know if any child is having a birthday or other celebration so you can send in a safe cupcake or other treat.

It isn't easy at first but before too long you will get used to the diet and all that goes with it. Be patient with yourself and with her. I hope she heals quickly but know that if she does get glutened it isn't the end of the world. She will heal and don't forget to test the rest of your family.

[Sienna2013]

Parent of two celiac kids here. You are getting great advice; here are some things we've found helpful: 

- Give some real thought to taking the entire house gluten-free. It's just not worth the stress, for me, of worrying about cross contamination. Also, your other kids are at higher likelihood of having celiac disease, so you may end up 100% gluten-free anyway. (Honestly, it's great in a way that both of mine have it - they have each other's backs, and no one else gets what they're going through quite like their sibling does.)

- Your doc will likely recommend having the rest of you screened (assuming you're biologically related, vs. adopted/foster). Insist on this, even if they don't suggest it - all first-degree blood relations should get screened. Best time to do it is right now, when all of you have been eating gluten regularly. 

- Walk away from pasta (even gluten-free) for a while. Instead, cook like my great-grandma did: meat and potatoes, chicken, squash, occasionally rice, lots of green veg. (Oh, and turns out it's not that hard to make french fries, actually! But definitely a special treat, not an everyday food - kinda messy.)

- Meet in person with the teachers, lunch team, administrators, etc., and send an email around to the other parents in your daughter's class. Tell them why she's gluten-free, & what that means logistically, and also ask them to help their kids understand, to protect your daughter against the possibility of teasing from ignorance. Work with the teachers to leave some shelf-stable treats (Tate's cookies, etc.) at school so they have something for her when some well meaning parent brings in cookies or donuts for a treat without giving you a heads up first.

- Lunch, for us, switched from "something you buy at school, or a sandwich" to "last night's dinner, packed in a Thermos to stay warm".

- Shop the grocery perimeters. I sometimes end up with nothing but meat/fish/chicken and produce. 

- Read labels and watch out for wheat in the weirdest places. For example, Whole Foods has "may contain wheat" disclaimers in their frozen shrimp, frozen spinach, mixed nuts, etc. 

- Rice Krispies are a trap for the unwary - they contain barley malt. However, Starbucks' version of a rice krispy treat is gluten-free (yay!).

- Ditto oats. One would think they're naturally gluten-free, but nope. We're staying mostly off them for now, and when we do eat them, it's the certified gluten-free kind only.

- Look out for unexpected sources - for example, sorry to say this, but you'll need to throw out the Play-doh. Our art teacher said she used corn starch, not flour, for papier mache, so you'll want to check that your child's art teacher does as well.

- Go in phases and adjust based on how she's doing. My two keep experimenting: we've had one kid on dairy, off dairy, on eggs, off eggs. Both currently supplement with Vitamin D. One supplements with magnesium glycinate (which seems to be helping a lot of behavior/mood symptoms, thankfully!). One likes probiotics; the other says the priobiotic chewables and capsules make her stomach hurt - but she loves kombucha and says it makes her feel better.

- Don't believe, or at least be VERY skeptical, of regular takeout/delivery pizza places that offer gluten-free dough. The dough may be gluten-free, but the pizza is 99% likely to get cross-contaminated during prep/baking/serving. We just go with frozen - you can make it fun by buying every gluten-free pizza your grocery carries, and getting the whole family involved in Pizza Tasting and Rating Night. 

- Haagen Dasz has many gluten-free flavors! Not sure why the label is so tiny, but it's there if you look for it.

- If there's a Five Guys near you, it's your new fave burger place. The kids can eat the fries because they don't have anything battered cooked in the same fryer. Same for In and Out (but 5G is better). 

- Find Me Gluten Free app is a terrific resource. Nima, the food testing people, are also rolling out crowdsourced testing results - early, but promising potential resource.

Good luck!

[cyclinglady]

3 hours ago, Sienna2013 said:

Parent of two celiac kids here. You are getting great advice; here are some things we've found helpful: 

- Give some real thought to taking the entire house gluten-free. It's just not worth the stress, for me, of worrying about cross contamination. Also, your other kids are at higher likelihood of having celiac disease, so you may end up 100% gluten-free anyway. (Honestly, it's great in a way that both of mine have it - they have each other's backs, and no one else gets what they're going through quite like their sibling does.)

- Your doc will likely recommend having the rest of you screened (assuming you're biologically related, vs. adopted/foster). Insist on this, even if they don't suggest it - all first-degree blood relations should get screened. Best time to do it is right now, when all of you have been eating gluten regularly. 

- Walk away from pasta (even gluten-free) for a while. Instead, cook like my great-grandma did: meat and potatoes, chicken, squash, occasionally rice, lots of green veg. (Oh, and turns out it's not that hard to make french fries, actually! But definitely a special treat, not an everyday food - kinda messy.)

- Meet in person with the teachers, lunch team, administrators, etc., and send an email around to the other parents in your daughter's class. Tell them why she's gluten-free, & what that means logistically, and also ask them to help their kids understand, to protect your daughter against the possibility of teasing from ignorance. Work with the teachers to leave some shelf-stable treats (Tate's cookies, etc.) at school so they have something for her when some well meaning parent brings in cookies or donuts for a treat without giving you a heads up first.

- Lunch, for us, switched from "something you buy at school, or a sandwich" to "last night's dinner, packed in a Thermos to stay warm".

- Shop the grocery perimeters. I sometimes end up with nothing but meat/fish/chicken and produce. 

- Read labels and watch out for wheat in the weirdest places. For example, Whole Foods has "may contain wheat" disclaimers in their frozen shrimp, frozen spinach, mixed nuts, etc. 

- Rice Krispies are a trap for the unwary - they contain barley malt. However, Starbucks' version of a rice krispy treat is gluten-free (yay!).

- Ditto oats. One would think they're naturally gluten-free, but nope. We're staying mostly off them for now, and when we do eat them, it's the certified gluten-free kind only.

- Look out for unexpected sources - for example, sorry to say this, but you'll need to throw out the Play-doh. Our art teacher said she used corn starch, not flour, for papier mache, so you'll want to check that your child's art teacher does as well.

- Go in phases and adjust based on how she's doing. My two keep experimenting: we've had one kid on dairy, off dairy, on eggs, off eggs. Both currently supplement with Vitamin D. One supplements with magnesium glycinate (which seems to be helping a lot of behavior/mood symptoms, thankfully!). One likes probiotics; the other says the priobiotic chewables and capsules make her stomach hurt - but she loves kombucha and says it makes her feel better.

- Don't believe, or at least be VERY skeptical, of regular takeout/delivery pizza places that offer gluten-free dough. The dough may be gluten-free, but the pizza is 99% likely to get cross-contaminated during prep/baking/serving. We just go with frozen - you can make it fun by buying every gluten-free pizza your grocery carries, and getting the whole family involved in Pizza Tasting and Rating Night. 

- Haagen Dasz has many gluten-free flavors! Not sure why the label is so tiny, but it's there if you look for it.

- If there's a Five Guys near you, it's your new fave burger place. The kids can eat the fries because they don't have anything battered cooked in the same fryer. Same for In and Out (but 5G is better). 

- Find Me Gluten Free app is a terrific resource. Nima, the food testing people, are also rolling out crowdsourced testing results - early, but promising potential resource.

Good luck!

“Lunch, for us, switched from "something you buy at school, or a sandwich" to "last night's dinner, packed in a Thermos to stay warm".

- Shop the grocery perimeters. I sometimes end up with nothing but meat/fish/chicken and produce. “

This.  This sounds like me!  Excellent advice.  

[Sienna2013]

On 2/16/2018 at 4:10 PM, cyclinglady said:

“Lunch, for us, switched from "something you buy at school, or a sandwich" to "last night's dinner, packed in a Thermos to stay warm".

- Shop the grocery perimeters. I sometimes end up with nothing but meat/fish/chicken and produce. “

This.  This sounds like me!  Excellent advice.  

Aw, thanks, cyclinglady - high praise indeed coming from you!

[Foreignlady]

Thanks for the tips RE: parenting celiac kids, Sienna. As for testing the rest of the kids, our pediatrician didn't think we should screen the siblings yet as they are asymptomatic, (1.5 y.o. twins, 3.5 y.o.) and are all 97th percentile + in growth charts. He was very prompt to test and refer our daughter for diagnosis, which is why we have confirmed celiac a mere 4 months after digestive symptoms first manifested. So I trust his judgment and he said we will revisit the question later. I'll ask for the test if we need to draw blood at some point for some other reason.