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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten-Free For The Entire Famly? When Members Can't/don't Want To Be Gluten-Free
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36 posts in this topic

Do most folks with Celiac require that their entire family be gluten-free? I haven't until now, but it seems to be coming down to just that.

After being really sickened with gluten yet again, my husband actually offered to go gluten-free with me. We're only going to buy/make gluten-free breads, and most other foods. He said that I'm getting sicker when I accidentally eat gluten, and he really wants to help. I am very grateful, and told him that I am fine with him having an occasional beer, or eating whatever he wants when we're out somewhere. Basically, if it couldn't make its way into me, I don't mind.

We discussed what we should do about our daughter, and neither of us really know how to handle it. I'd be fine if she ate gluten at school (she normally takes her lunch, but her school has pizza day once in a while) or when we're out.

The hard part is that she's at an age (8) where she's able to make a sandwich, but not able to always remember not to put the knife back in the peanut butter after it touches bread. She leaves cookie/bread crumbs in the kitchen sometimes, and those seem to have a way of making it into things I eat. Into the PB, or onto the butter, or who-knows? 

We want her to learn her way around the kitchen, and we don't want her to miss out on eating stuff; but I need to stay safe.

Would it be unreasonable to ask that everyone in the house limit their gluten to eating out and occasional snacks?

How do y'all handle this? Thank you.
 

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We have a "mixed" house.  Get your own PB jar.  Put a big piece of colored duct tape on the lid.  The leopard stripe or red or hot pink duct tape means no one else can touch it (or the other way around if that works better).  Try to keep the gluten stuff in one are, on one counter.  When mine make cold cut sandwiches, they get a plate and get all the meat and cheese and lettuce first.  Then walk over to the counter with their bread.

 

It can be done.  But you need to make it as easy as possible.  

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My husband is as good as your 8 year old! I did as mentioned above and got my own peanut butter and put my name on the top of the jar so he knows not to use it! Basically, anything that I fear could be contaminated I make my own and label it. You could also get your own cutting boards and things that you use only. AND try to teach your daughter how to clean up/not make crumbs.

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I'm lucky in that it is just hubs and I at home now and he said gluten-free was fine with him.  He can eat the gluten stuff when we go out for dinner or away from home but everything here is gluten-free now.  With kids, it's hard to say.  If she wants to make her own lunch and such, maybe a separate area in the house where she could have her own "kitchen" for that but then serve all combined meals gluten-free?  Do you have a finished basement or a basement where you could put in a mini-fridge, a microwave and some stuff for her to make her own lunches?

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There is no reason an 8 year old needs gluten in their diet. There is also nothing I can think of that she'll really be missing out on without it, especially if she can eat whatever she wants outside of home. I eat bread and cupcakes and brownies and whatever else I want to eat, mine just doesn't have gluten in it. There really doesn't seem to be any point at all (imo) to your husband being gluten free to be supportive and for your health to prevent you getting sick from accidental glutenings if you aren't simply removing it from the kitchen. There is plenty a kid that age can learn to do in a kitchen to get a snack or easy meal that doesn't have to involve bread and a butter knife.

 

An alternative, if you don't want to ban it entirely for her is to put HER gluten stuff (maybe a few things for sandwiches) in a bin and a special place in the fridge. You can buy parchment paper in flat sheets at cooking stores to put in there too. Teach her to get out a sheet of paper, put it on the dining room table and fix her sandwich there and then she can just throw everything away. You can even use plastic knives if you're so inclined. I have a sort of similar set up with my husband for his breakfast cereal. I absolutely won't allow it in my kitchen, but if he wants to pour it where he'll eat it in a disposable bowl that won't end up in my kitchen that's fine by me.

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Hubby and I are both gluten free. He has been gluten free for 13 years now. I did all the cooking in our shared kitchen. I was very careful. Then I got diagnosed. We went gluten free 99% because my health and my husband's is more important than my daughter making gluteny things in the kitchen! It was two to one! And I was just too sick to worry about cross contamination anymore! All that brain fog made me a basket case! Not to mention that she is 13, an honor student, but she is still a kid (meaning....she forgets)!

Our house is gluten-free. I buy her pre-packaged gluten things for her lunch at school. We stop for a burrito after school or she gets her gluten fixes at her friend's house (I sent her off with boxes of cake mixes and she bakes in other homes.) She requested a chocolate mayonnaise gluten-free cake over Grandma's offer for a cake from the best bakery in the county! We went camping last weekend and I made chocolate chip cookies and brownies that were gluten-free and she would rather eat those over anything store bought -- seriously!

My kid even prefers to eat lettuce-wrapped burgers ( protein style) at IN n Out. I think you get the picture.

Her cooking has stepped up this year. She makes all the salads, bakes gluten-free cookies, preps veggies, makes an awesome chicken salad.....there are plenty of gluten-free foods to make.

She tested negative for celiac disease and we are still giving her access to gluten, but not at every meal and not in the house.

Wheat, barley and rye are not necessary for life. Really. Did the native cultures have access to grains? (Honey, do you want whale meat or Elk tonight?). Think about it.

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chocolate mayonnaise gluten-free cake..... recipe please :D

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chocolate mayonnaise gluten-free cake..... recipe please :D

Recipe is on the Bon Appetite magazine website. To covert to gluten-free, I use Pamela's gluten-free blend that contains guar gum since Xantham gum bothers me. Make homemade frosting -- no store bought! Makes great cupcakes that freeze well even frosted. My entire family loves this recipe!

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I have a mixed house by necessity right now (my kids are gluten challenging and therefore have to have gluten every day) and I'm finding it difficult.

 

The kids will eat something gluteny and then touch my food so that I can't eat it. (i.e. kids were eating burgers with buns and then oldest dipped her hand into the potato chips without washing hands first, middle kid touched my butter stick, etc.) My kids are still young. (youngest is 2) My youngest is very grabby and will grab at my face and try to touch my mouth. 

 

I'm going to have to come up with a better strategy, if I want to keep any gluten stuff in the house for the kids long term.

 

If that isn't successful, we'll just have to have the house go gluten free again. It can be difficult to have a mixed house if the kids aren't old enough to remember certain things.

 

The hardest part about having a gluten free home with small kids is the bread. Even my homemade gluten-free bread costs $4 a loaf in ingredients to make. 

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Has your daughter been tested. Celiac runs in families.

 

If it were me, I'd do as some of the others suggested and let her eat gluten as long as she is careful and makes her sandwiches in a different area AND learns to clean up after herself. Dedicated peanut butter and other condiments are a must.

 

I say all this because even if she has been tested and the tests were negative, she should be tested every (I think they say) couple of years. If she is off gluten she will never be able to get an accurate test and that would interfere with that 504 (?) plan for school. You might have a hard time getting the school, summer camps, etc. to take it seriously.

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my grandkids love to eat my gluten-free stuff!!  i'm all like:  GET YOUR OWN lolz - it's cool, except it gets expensive.  i make them eat their gluten snacks outside if it's something crumb-y.  the 10 is getting pretty savvy - he watches how careful pop pop is not to cc things.  

 

daughter and her sons are staying with us until she gets a place (OMGOSH HURRY!!!!!!!!!) when they lived with us the last time her husband (marine) was deployed, i had everything labeled and my own peanut butter, jam, mayo, etc.  when they moved out, it was just the hubs and i, so we had no need to keep labeling/duplicating things.  so, i had to make the announcement:  just assume EVERYTHING is gluten free and don't crumb up anything..  easy.  haha.   <_<   i hang out in the kitchen alot......

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I have an gluten-free house (sans beer and shaving cream) and car.  We are this way because my 2 y/o is DX and keeping crumbs away from her would be a nightmare.  Anyway, my middle kid is allowed gluten.  He doesn't get it at home or via snack and still in preschool so his two gluten containing options are 1. birthday party treats and 2. meals out with daddy.  Next year he can do school lunch.  Frankly, I'd be fine if he was 100% gluten-free, but who am I to stop a birthday cupcake when he doesn't need a restricted diet, yk?

 

What if you made your house gluten-free and then your daughter just ate gluten outside the house?

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We have a "mixed" house.  Get your own PB jar.  Put a big piece of colored duct tape on the lid.  The leopard stripe or red or hot pink duct tape means no one else can touch it (or the other way around if that works better).  Try to keep the gluten stuff in one are, on one counter.  When mine make cold cut sandwiches, they get a plate and get all the meat and cheese and lettuce first.  Then walk over to the counter with their bread.

 

It can be done.  But you need to make it as easy as possible.  

 

Thank you. That sounds like a good idea. I have duct tape on the grocery list now  :)  I am going to go ahead and do some things "gluten-free only" though. Salad dressing, mustard, barbeque sauce, things like that. When I barbecue chicken or make a meatloaf, I only really want to make one dish. We will have to start training our daughter to be mindful. Or I can hide Mommy's peanut butter jar :D

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My husband is as good as your 8 year old! I did as mentioned above and got my own peanut butter and put my name on the top of the jar so he knows not to use it! Basically, anything that I fear could be contaminated I make my own and label it. You could also get your own cutting boards and things that you use only. AND try to teach your daughter how to clean up/not make crumbs.

 

I honestly never thought about my own cutting board. I have wooden boards, so I will probably just purchase a new one. Thank you! I am going to use the duct tape idea above, and have decided to buy mayo and things in squeeze bottles until I can help my daughter learn safe techniques.

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There is no reason an 8 year old needs gluten in their diet. There is also nothing I can think of that she'll really be missing out on without it, especially if she can eat whatever she wants outside of home. I eat bread and cupcakes and brownies and whatever else I want to eat, mine just doesn't have gluten in it. There really doesn't seem to be any point at all (imo) to your husband being gluten free to be supportive and for your health to prevent you getting sick from accidental glutenings if you aren't simply removing it from the kitchen. There is plenty a kid that age can learn to do in a kitchen to get a snack or easy meal that doesn't have to involve bread and a butter knife.

 

Right after I was diagnosed, I asked her pediatrician if she should be checked. She (the doctor) said that we would watch her, but that in the meantime, not to force her to go gluten-free. Since then, I have heard more than one opinion on this. She doesn't have any symptoms, and never has. I still want to have her checked, but I'm not sure they will unless she shows symptoms.

 

We homeschool, but she goes to two enrichment programs every week. Both are tree-nut free, and I already have to plan for that with her lunches and am okay with her being able to have regular bread.

My husband is going gluten-free in the house because aside from the occasional beer at home, he eats what I eat, and we enjoy cooking together. When he's out, he'd free to do whatever, but in the house, when we cook together, it is just too hard to make two of everything. Later this week we're making chicken satay - just so much easier to make one sauce, make on marinade, cut up one chicken on one board. The grill rack is now gluten-free, the small appliances and the dehydrator are gluten-free, and I'd like to keep them all that way.  He works from home most days, and we eat better than 9 out of 10 meals together.

An alternative, if you don't want to ban it entirely for her is to put HER gluten stuff (maybe a few things for sandwiches) in a bin and a special place in the fridge. You can buy parchment paper in flat sheets at cooking stores to put in there too. Teach her to get out a sheet of paper, put it on the dining room table and fix her sandwich there and then she can just throw everything away. You can even use plastic knives if you're so inclined. I have a sort of similar set up with my husband for his breakfast cereal. I absolutely won't allow it in my kitchen, but if he wants to pour it where he'll eat it in a disposable bowl that won't end up in my kitchen that's fine by me.

 

Excellent ideas. When I was first diagnosed, I wasn't as careful, but it didn't seem to matter as much (of course it did, but it didn't show itself as much). As I have become better and better at staying gluten-free, I have worse and worse symptoms when I am accidentally glutened. It seems like the less gluten I eat, the worse any gluten is when I have it. I don't want to force her to go gluten-free, but I need to be safe.

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Has your daughter been tested. Celiac runs in families.

 

No. Our pediatrician told us not to test without symptoms. I am aware that there is controversy about this, and want to get her tested, but I'm not even sure they would without symptoms. I was diagnosed after years of all sorts of symptoms, including IBS that didn't get better, but was overweight, so was told that I couldn't have Celiac. I did, though, for many years. At the time I was tested, I had had symptoms for about 15 years, back to when I was pregnant with one of my older children. I was finally tested after surgery for my gall bladder. The surgeon told me that she only ever saw gall bladders like mine in people with "sprue" and sent me for tests. I am not sure to this day what she saw, but she was 10% right. I tested positive. For a long time after I stopped eating gluten, milk bothered me, too, but I seem to be mostly okay with milk now in small doses.

 

My sister has Lupus and our mother had arthritis, and my dad had a skin condition that looked a lot like mild psoriasis - all of which are inflammatory/auto-immune diseases. The more I think about it, the more I want to get the kids tested.

If it were me, I'd do as some of the others suggested and let her eat gluten as long as she is careful and makes her sandwiches in a different area AND learns to clean up after herself. Dedicated peanut butter and other condiments are a must.

 

I've decided to go with the duct tape idea (above) and will be teaching her better kitchen technique. I don't want to force her to eat gluten-free, but we have to do something.

I say all this because even if she has been tested and the tests were negative, she should be tested every (I think they say) couple of years. If she is off gluten she will never be able to get an accurate test and that would interfere with that 504 (?) plan for school. You might have a hard time getting the school, summer camps, etc. to take it seriously.

 

She has her annual pediatrician visit in early November, so I think I will ask then. She is our baby, and our older children are in college/graduated college. I will be asking the, to test, too.

Thank you!

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I would love some advise on the shared kitchen too. I've been gluten-free since April and am slowly learning just how uber careful I need to be to avoid getting sick. It's such hard detective work to figure out what makes me sick each time I get glutened. My husband, although sorry to see me suffer, does not want to change his eating habits. He eats 1.5 loaves of bread a week (sandwiches and toast) and goes through a box of Cheerios a week. I don't mind his beer or granola bars because those seem less messy. When he's at work I feed my 2yo gluten-free but when he feeds her he gives her gluten as does our sitter. I also have gluten snacks for her that he and our babysitter give her (although I plan to phase those out). I am very cautious about washing my hands before eating because I think about all the gluten residue spread all over my house on a regular basis but it's near impossible to really keep from cc when I'm hyper sensitive right now. I would love to have a gluten-free house but gluten-free breads just aren't the same and imagine how expensive that would get! Any suggestions?

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 Having had both a shared kitchen and a gluten free kitchen I am going with the gluten free kitchen.  Almost anything can be found gluten free.  Crackers?  Get rice.  Bread?  Ok, I agree g.f. is a pricey substitute, but do you really need bread?  Lettuce roll ups make great lunches and are far healthier than bread.  Four years down the gluten free road and I find I have an entire different mind set to when I first started out.  Kids can have their treats, just make them g.f.  It's so much easier and safer. 

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I found that my gluten-free kitchen became much easier to maintain once my son went away to college. My stepson still comes down a few weekends a month, but we've segregated a counter, a cupboard, and a drawer (all in the same area) for gluten prep, foods, appliances, and utensils. When the kids are home, I cook gluten-free. It's the way hubby and I eat, so the kids can live with it. The foods are still delicious and nourishing. 

 

It was more difficult when the kids were smaller. Gluten was everywhere all the time. Now that they are 16 and 18, they are old enough to follow the gluten-free rules and not contaminate me.

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Thanks so much for the advise. I think it will take time to get my husband on board. I can only imagine how hard it is for a spouse of someone with celiac because of how drastically things change once diagnosed. He is getting better about cleaning up after himself in his gluten-designated area. My 2 yo daughter, however, is the greater challenge when given gluten bc she doesn't understand why she can't put her food on my plate, feed me or kiss me after eating gluten. Luckily she doesn't have it that often since she's just with me most of the time. I never dreamed how hard this would be!

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I'm pretty much counting down the days until my daughter's date for bloodwork. I can't wait to get rid of the gluten in the house again!

 

My 2 year old is one of the hardest, because she will put her hands up to my face and try to touch my mouth.

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its okay for children to be (mostly, at least in the house) gluten free even if they don't have issues with gluten, right?

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Why not? Eating alternative gluten-free grains is healthy! Wheat, rye and barley are just a small part of edible foods, it is just that our society has depended so much those particular grains (really just wheat). My daughter gets her gluten outside of the house. She washes her hands when she returns home.

But, she has been tested. So, even before she was tested I gave her gluten daily, usually at lunch while at school or when we are out of the house. She will need to be tested every few years or sooner if she displays obvious symptoms. Odds are, she will develop celiac disease since both parents have it.

I was only diagnosed less than two years ago, but hubby has been gluten-free for 13 years. I was careful, but I know we glutened him. Who could resist toddler kisses? But it was so much easier on me mentally to make the house really gluten free after my diagnosis.

Good luck to you!

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RainKitty, if you want to have your children tested, ask for the tests. If the doctor says no, get a new one or ask the doctor for a valid reason why you shouldn't have your daughter tested now to make sure she isn't positive if it can save her a life time of misery from a GENETIC disease. She should be tested every two years anyway and so should your other children. My doctor didn't want to test my daughter when we had just gone through almost a year of her fainting a lot at school and many tests, I insisted. She was positive. I also now have a different doctor for myself and my children.

Good luck , and I hope you start feeling better soon.

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