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    Do you have questions about celiac disease or the gluten-free diet?

lonewolf

Another "why Don't They Get It" Thread

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My 15 year old daughter discovered, during past year, that she is gluten intolerant. She did a project on Celiac Disease and decided to try gluten-free for herself. She was amazed at how much better she felt, and she wasn't sick to start with. She's slimmed down a bit - she's at a very healthy weight- her periods are much easier to deal with and she just generally feels healthier. She's "challenged" herself with gluten a few times and has decided that she's not going back. I completely support her. I don't want her to get as sick as I did before realizing she has a problem. She believes that she is preventing health problems before they start. BTW - my grandmother was told that she was "allergic to wheat", but ate it anyway and was severely crippled with arthritis for the last 15 years of her life. I've had problems with wheat/gluten and other foods for over 10 years and had a huge positive response and change in my health when I changed my diet, including getting over crippling arthritis.

Here's what frustrates me - other people's responses - mostly to me. I keep getting asked by relatives and close friends things like, "Why did you take her off gluten? Do you really think she needs that diet too?" or "Don't you think you're all overdoing it?" or "Just because YOU have a problem with wheat doesn't mean that all your kids do." and last night, "Has she ever had any testing? Why do you think she has a problem?" and "It wouldn't hurt her to have just a little bit - you don't even know if she has a problem." My 11 year old son is also off gluten and dairy and everyone has seen an improvement in his behavior, so no one makes too big of an issue over him.

She was asked to help serve communion for youth Sunday a few days ago and she quietly passed the plate of crackers by when it was offered to her. A good friend saw this and told us "How awful" it looked that one of the servers refused part of communion. Aarrgghh!

I usually respond that I don't MAKE her eat this way, but she knows she feels and she feels better off gluten. I'm proud of her for being mature and "pro-active" and can't figure out why other people can't leave her alone. She has a great attitude and says that she doesn't care what other people say. When her friends at school say something, she just quietly tells them that she can't eat wheat or gluten and that it "kind of runs in my family".

So, why can't people quit bothering us? And what should I say to get them to shut up?

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Boy Liz--I wish I knew what to say to these people! What the heck is it to them how you or your daughter eat? I could never understand that part of it--why some people feel threatened by the fact that we don't eat gluten.

I do want to tell you how impressed I was to read how your daughter came to realize she had a problem with gluten. The fact that, at 15, she wants to eat this way because she feels better says it all. I think that's great. We all know how catching these things early can often prevent the nasty little complications ;)

I have a few people who make those same comments--they think I over do this, that I go overboard. I just go about keeping myself safe, and hope that they will see how much better I am now compared to a couple years ago. I could say something, but I'm very non-confrontational. Sometimes I wish I weren't so much! :P

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Thanks Patti,

I just can't figure some people out. I'm like you - not confrontational. I keep trying to get up the courage to say something like, "Have I ever told you what to eat or question what you feed your kids? Please do me the same courtesy." What is so bad about not eating gluten? I feel like I'm on trial for child abuse sometimes.

It really bothers me when they say things to my daughter. How many 15 year olds even think far enough ahead to prevent ANYTHING, much less health problems. I am so proud of her for thinking this through and doing what she knows is right for her body. I'm sure she'll avoid all the nasty things I went through - IBS, arthritis, kidney disease, thyroid problems, etc. I wouldn't want those things to happen to anyone, especially my own kids.

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I think that is great that she was doing a project on Celiac disease to begin with, it was even better she found herself feeling all around better, but what is the best out of all is she is doing it for herself and for the future. She is really standing up for herself and she knows down the road she wants to be healthly. I give her a lot of credit. She seems very mature for her age and she is very well-informed on the diet and the outcomes from eating gluten. We need more doctors like herself.

As for the people who are nagging, it shouldn't be any of their business what her diet is. She may have lost a little weight but that is more than likely from eating junk food or other food and now eating very healthy. People always need something to talk about, it is sad they need to act so odd about her doing this. It is not as if you are forcing her to eat this way but why would you ever attempt to stop her when she feels great :) Who knows if she never did that project and challenged herself she could have had issues down the road. She just saved herself some agony and some worry. Plus it seems that a few members in your family had/have it so she may have had it all along and just wasn't showing symptoms yet.

I am upset to hear about your friends and other people, but I am soo happy to hear about your daughter!!!!!

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How great for her, to take her health into her own hands. That is amazing, especially at 15!!!

I have an aquantance (I used to say friend) who freaked out when we were talking about kids and I had told the school about my youngest son's lactose intolerance. She thought it was horrible that I was giving my kid this stigma. Can you imagine what she would say to this???? And, she knows about my food intolerances too.

Some people are just not as enlightened.

BTW, my DH is suspecting he has a problem now too - he can't seem to eat all the junk food he used to, now that we only eat healthy, non-gluten, corn, soy, etc at home. His daughter has food problems her mom won't admit to so the daughter won't. It is always amazing that she doesn't get sick when she is at our house, just amazing ;)

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Liz, I keep a 4 X 6 card in my purse that is basically a handwritten trumph (sp) card. It tells about celiac, what I cannot eat , how a small amount of cross contamination makes me sick, etc. If someone asks me about my eating, I just pull it out and let them read it. Then they understand.

With your group, you might need a longer handout ( why we don't eat the bread at church, etc).

Most people say, maybe I'll start eating like that. It sounds healthy. or is that how you stay so slim....

Take care and don't let it get to you. :)

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Liz,

Next time don't hold back. Just tell them how you feel. Your family's health is not their business. If you confront them about their comments, they will probably learn to mind their own business.

-Brian

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When you get a rude or nosy question you could ask one of the following:

Why do you ask?

How many books have you read on celiac disease?

Why do you need to know?

She is better educated and informed than my generation (or yours).

Dietary Trial is the ultimate test.

Instead of fast food she is making healthier food choices to enable her to lead

a long disease free life.

The above ought to cover most everything

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I usually respond that I don't MAKE her eat this way, but she knows she feels and she feels better off gluten. I'm proud of her for being mature and "pro-active" and can't figure out why other people can't leave her alone. She has a great attitude and says that she doesn't care what other people say. When her friends at school say something, she just quietly tells them that she can't eat wheat or gluten and that it "kind of runs in my family".

Do you actually say that? I think if you stressed the part I highlighted there it might make someone think twice about opening their yap. :P

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Do you actually say that? I think if you stressed the part I highlighted there it might make someone think twice about opening their yap. :P

lol yeah! my 15 year old brother thinks he might have it, but since I live so far away, and the rest of my family thinks i'm just extreme...they tell him not to worry about it. i wish he were more proactive about it! :)

when people bug me about my eating behavior i just tell them very bluntly that if i do eat something w/ gluten i will be sick within a half hour, so the bathroom better be free for the next 3 days. :) im' not very confrontational but that usually does the trick :P

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People stopped making comments once they saw how much better the children felt. There will always be people out there who think we are 'depriving" ourselves or our children by omitting gluten. They dont comment about a 2 yr old eating fries every day at McDonalds or a teen eating twinkies for lunch - yet they feel compelled to comment about a diet that is treating a medical condition.

I was rather rude once to someone who commented about letting my son have 2 pieces of caramilk (he's diabetic) - they said I would make his diabetes worse and he would "never get off needles".

I said - well , he will never get off needles... regardless of what I feed him, he is on a diet for celiac disease, and so is his sister, who is celiac and has Aspergers, hypothyroid, recovered from Kawasaki, and allergic to sulfas. Both are doing very well on the gluten free diet - in fact they've never been healthier! If I want to give them a piece of chocolate, I will.

She just stood there - I'm sure she thought I was nuts but she was still trying to sort out who had what, when I walked away.

I have never minded questions or someone asking me anything but they have no right to tell me what to feed /how to feed my children when they know nothing about the challenges in our lives.

These people would never tell a mother - who is omitting foods [say, peanuts] that cause allergic reaction - to feed the kid peanuts so he doesnt miss out

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I think giving people information about Celiac disease/gluten intolerance is the best idea. My MIL had a problem with the kids (and me) being gluten free until she read an article about gluten intolerance. Now she is much more supportive. SIL even had flan for her birthday because my kids can't eat regular cake. Everyone agreed that they actually like flan much better than cake anyway. I would just print about a bunch of info about gluten intolerance and pass them out anytime anyone makes a comment. Good luck! I hope people stop giving you and your DD a hard time.

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Boy Liz--I wish I knew what to say to these people! What the heck is it to them how you or your daughter eat? I could never understand that part of it--why some people feel threatened by the fact that we don't eat gluten.

Jerseyangel,

The only thing I can relate the feeling of people being threatened, would be when I gave up smoking and my friends didn't, they maybe felt left out in the cold that I was not sharing with them, and they tried their hardest to sabotage your efforts by saying one smoke won't make a difference. I can relate the same thing with going on a diet. Is it because we are doing something different to our friends and family.

And yes Liz, for me it helps to have a diagnosis and then maybe nobody can say much. But it doesn't always work like that. But a diagnosis is not the be all and end all of it, as it is even at the best of times hard to get. But I still get strange looks when I say I can't have this or that. My workmates have been great, and let me be, they are who I deal with most days. I think I have educated them. One day I was ready to tuck into a muffin, and a co-worker said you can't have that, but I go oh yes I can it is gluten-free.

The last thing for me to say on this matter is that the gluten free diet is healthier than the diet most other people are eating, and the idea is to feel better, and if it makes you or anybody else feel better, you are on the right track. Maybe everybody should at least try a gluten free diet for a week or two, put themselves in our shoes, and maybe they might all come back reporting they feel better, or starved as they would be like me at the beginning too scared to eat anything. But they might come back with a better appreciation of what it is like.

Cathy

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Thanks for the supportive posts everyone. I saw my good friend again last night and she made another comment about how I'm overboard on the "gluten free thing" and how she doesn't think my daughter is any better off gluten. I just shrugged it off and said that my DD feels better and that's the most important thing. The interesting thing is that yesterday afternoon I was talking to my daughter's 4th grade teacher (I work at the school) and she commented on how great my daughter looked when she saw her last week. She said that she thought it was wonderful that our family has found out that going gluten-free has helped us. Her MIL is Celiac, so she understands it well.

The next time someone says something negative I would love to respond with something like this, "You're right. We are going overboard. It's ridiculous to prevent problems that we don't know will ever appear. I should wait until my kids develop Thyroid disease, debilitating arthritis, chronic fatigue, IBS, embarrassing skin rashes and infertility to have them tested. I guess that would make a lot more sense."

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Thanks for the supportive posts everyone. I saw my good friend again last night and she made another comment about how I'm overboard on the "gluten free thing" and how she doesn't think my daughter is any better off gluten. I just shrugged it off and said that my DD feels better and that's the most important thing.

The next time someone says something negative I would love to respond with something like this, "You're right. We are going overboard. It's ridiculous to prevent problems that we don't know will ever appear. I should wait until my kids develop Thyroid disease, debilitating arthritis, chronic fatigue, IBS, embarrassing skin rashes and infertility to have them tested. I guess that would make a lot more sense."

Yes, you should tell them that!!! :P

I might've told that friend that she wasn't my daughter, and what my daughter knows about her own body is more important and pertinent than what everyone else seems to think. Actually, knowing me I would have simply said, " Really? How do you know?"

Your daughter has more courage and common sense than most adults do, sad to say. How commendable for her to embrace such healthy habits (esp. in/ to this society) while she is still in her teens, when most of her peers are content to feed their bodies junk; you must be very proud of her. I think that why most people react the way they do to our change of diet is that it shows them up; they realise that they really need to change the way they think as well but are not willing to, and we, unfortunately, are the thorn in the side that keeps pricking them (hope you understand what I mean).

We'll always get the comments and remarks...as long as we remember what really matters, like your daughter, we will get through this. I got an annoying remark once from someone I know, and I just smiled to myself as I thought, " You have a spouse who is overweight, on a plethora of blood-pressure, heart and about seven other pills, and you want to tell me what I should and shouldn't eat???" That kept me from biting her head off.... :lol:

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People stopped making comments once they saw how much better the children felt. There will always be people out there who think we are 'depriving" ourselves or our children by omitting gluten. They dont comment about a 2 yr old eating fries every day at McDonalds or a teen eating twinkies for lunch - yet they feel compelled to comment about a diet that is treating a medical condition.

I was rather rude once to someone who commented about letting my son have 2 pieces of caramilk (he's diabetic) - they said I would make his diabetes worse and he would "never get off needles".

I said - well , he will never get off needles... regardless of what I feed him, he is on a diet for celiac disease, and so is his sister, who is celiac and has Aspergers, hypothyroid, recovered from Kawasaki, and allergic to sulfas. Both are doing very well on the gluten free diet - in fact they've never been healthier! If I want to give them a piece of chocolate, I will.

She just stood there - I'm sure she thought I was nuts but she was still trying to sort out who had what, when I walked away.

I have never minded questions or someone asking me anything but they have no right to tell me what to feed /how to feed my children when they know nothing about the challenges in our lives.

These people would never tell a mother - who is omitting foods [say, peanuts] that cause allergic reaction - to feed the kid peanuts so he doesnt miss out

lol good for you!

Thanks for the supportive posts everyone. I saw my good friend again last night and she made another comment about how I'm overboard on the "gluten free thing" and how she doesn't think my daughter is any better off gluten. I just shrugged it off and said that my DD feels better and that's the most important thing. The interesting thing is that yesterday afternoon I was talking to my daughter's 4th grade teacher (I work at the school) and she commented on how great my daughter looked when she saw her last week. She said that she thought it was wonderful that our family has found out that going gluten-free has helped us. Her MIL is Celiac, so she understands it well.

The next time someone says something negative I would love to respond with something like this, "You're right. We are going overboard. It's ridiculous to prevent problems that we don't know will ever appear. I should wait until my kids develop Thyroid disease, debilitating arthritis, chronic fatigue, IBS, embarrassing skin rashes and infertility to have them tested. I guess that would make a lot more sense."

man, people just don't know where to keep their noses! we have every right to respond to someone being rude by being rude ourselves...or BLUNT, if you rather :) I am not gonna let anyone give me crap anymore!!

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A post from Roxanna. The report button was accidentally pushed.

I understand this. I have been told by my dr. not to eat gluten. I have three children. All three have been sick since the day they were born. I have 11 brothers and sisters that many have been sick all there lives. I can't help but wonder if gluten has not been the problem all along. My 18 yr old daughter put herself on the gluten free diet. She stayed on it for several months and became so much better. Her and I both have seizures. Of course I have many other illnesses that have already raised their ugly head. She has a heart problem, bleeding problem, gallbladder removed. indometriosis removed already. I'm sure there are several things more if I took the time to think. Anyway. she has given up on the diet already because family, suppose to be friends and the school will not help her with the diet. They have made comments about it and the school of course has to have a doctors note. ( I was a teacher until I became so disabled I can't work now) She eats gluten-free at home most of the time, but when she is at school she can't stay off of it and a lot of the family doesn't seem to care. It is hard on her. I don't like to go out to eat or visit family and friends because of the flak we get from them. She doesn't either. We are told were over reacting and wierd. Like smoking, and other things I won't mention isn't. Oh well, I'll suck it up and keep working on this daughter and other family members as I have been. I did get some good Ideas from the people responding though. Roxy

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