Emotional Iissues Over "being Different"

[pinktroll]

I am hoping for some help with a problem my 6 year old is having. She has been on the gluten-free diet for about 5 months. Her blood work came back negative twice but thanks to the information on this site I went with my gut feeling that gluten was a problem for her and put her on the gluten-free diet for 3 months and then did a challenge which absolutely confirmed my suspicions. Her symptoms are mostly behavioral with a few headaches and stomach aches thrown in. Anyway, after the challenge she told me that she feels better on the diet and wants to stay on it. The problem I am running into is that lately she has been getting really depressed when she has to have something different from everyone else. . At home I cook all of our meals gluten-free (my husband has celiac) and have gluten-free snacks and it's no big deal. I keep gluten-free cupcakes in the freezer for parties, etc. When we go out to eat she doesn't always have as many options and sometimes she will just refuse to eat anything, gluten-free or not. She is very headstrong and always wants to have control. I think that is why she will refuse to eat anything if she is feeling bad. I am worried about things like anorexia down the road if this continues. For example, I took my kids out to eat the other night at a place that had really taken care of my husband when we went there. We got grilled chicken strips for her dinner and everything was going well until the waiter (who was trying to be helpful) brought bags of fishy crackers for all the kids because the food was slightly delayed. Of course she couldn't have them and her sweet face just fell and she totally got withdrawn. I asked her if she was feeling bad and she told me that she was. I praised her for talking to me instead of holding it in and staying mad but I felt so bad! How should I handle these situations and how can I help her? I try really hard to only buy things that everyone in our family can eat so that she doesn't feel different but maybe I should be buying stuff that is only for her so that she feels like she's special-I just don't know what is right! I would love to have some feedback on what has worked for others and how they deal with this. Thanks! Nikkie

[darlindeb25]

Nikkie--Hurray to that brave 6 yr old for sticking to the diet--that is the best beginning. She may be just going through the intial mourning we all go through. Maybe when you go out you could take some kind of snack with you--let her pick the snacks out before hand so they are special to her--something she really wants. I'm sure others will come along and give their advice--those who have children with celiac and have coped with this problem. I am the celiac and my kids are grown now--I am still trying to convince them to be tested!!!!! I wish they were as brave as your little girl!!!

[Nic]

Hi, my son is also 6 but was diagnosed at 4. For the most part he is very accepting of the diet because for him, the symptoms were horrible and he was so sick. So he completely understands that if he eats gluten he will be sick and in pain. BUT, we have also been in that unexpected positition when someone gives the kids food and he is the only one who can't have it. And I watch his face drop and he is usually so brave and tries not to show his hurt feelings. But I see it in his face and it just about crushes me. Unfortunately, as prepared as we celiac moms try to be, we cannot predict everything that is going to happen. The kids will deal with this their whole lives and we have to help them figure out a way to deal with these situations. I think carrying a snack with us might help but I have also refused a food offer for everyone so he wouldn't feel left out. For example, a neighbor who did not know my son's problem offered my kids ice cream sandwiches. I said no thank you for both boys because I didn't think it would be fair. I always figure that my youngest son can have a life time of ice cream sandwiches so he can sacrafice a few while him brother is still young and struggling with these situations.

Nicole

[cookie22]

I am hoping for some help with a problem my 6 year old is having. She has been on the gluten-free diet for about 5 months. Her blood work came back negative twice but thanks to the information on this site I went with my gut feeling that gluten was a problem for her and put her on the gluten-free diet for 3 months and then did a challenge which absolutely confirmed my suspicions. Her symptoms are mostly behavioral with a few headaches and stomach aches thrown in. Anyway, after the challenge she told me that she feels better on the diet and wants to stay on it. The problem I am running into is that lately she has been getting really depressed when she has to have something different from everyone else. . At home I cook all of our meals gluten-free (my husband has celiac) and have gluten-free snacks and it's no big deal. I keep gluten-free cupcakes in the freezer for parties, etc. When we go out to eat she doesn't always have as many options and sometimes she will just refuse to eat anything, gluten-free or not. She is very headstrong and always wants to have control. I think that is why she will refuse to eat anything if she is feeling bad. I am worried about things like anorexia down the road if this continues. For example, I took my kids out to eat the other night at a place that had really taken care of my husband when we went there. We got grilled chicken strips for her dinner and everything was going well until the waiter (who was trying to be helpful) brought bags of fishy crackers for all the kids because the food was slightly delayed. Of course she couldn't have them and her sweet face just fell and she totally got withdrawn. I asked her if she was feeling bad and she told me that she was. I praised her for talking to me instead of holding it in and staying mad but I felt so bad! How should I handle these situations and how can I help her? I try really hard to only buy things that everyone in our family can eat so that she doesn't feel different but maybe I should be buying stuff that is only for her so that she feels like she's special-I just don't know what is right! I would love to have some feedback on what has worked for others and how they deal with this. Thanks! Nikkie

i hate to tell you she will always feel "different" and left out. i'm an adult and i do. as she gets older she will learn that you can still be socal without food, but itis ver hard. try to always have extra snacks for her in your purse. you have to give her a little bit of special treatment that way if her other siblings can eat gluten.

[schiralli]

Hi. My little girl was diagnosed with Type 1 diabetes in Jan and Celiac in June. She's having quite a time adjusting. The biggest problem we're having with the celiac is the fact that she has no symtoms. She has never had symtoms. As part of the blood testing with the diabetes, they tested her blood and then she had a biopsy. And they confirmed the celiac and also said she should not have milk products. Oh - okay. Sure. She has to have shots 5-6 times a day, prick her finger at least as many times, not eat any bread, crackers, cake, cereal, pop-tarts, twizzlers...and no ice cream, milk, dip for chips (the few she can have) etc. Yeah - we're having some problems. And if she doesn't have any symtom, its awful hard to understand what were doing this for, and if indeed were preventing some future maybe, might be some related possiblity when she's 40. I don't know if I'm buying all this stuff. My grandfather smoked all his life and never had cancer. Who has proven this gluten-free punishment is necessary. She feels so deprived and left out, its not funny. Why should she suffer emotionally over this big scare, when there is really nothing bothering her if she eats it. I don't get it.

[EmmaQ]

Hi, my son is also 6 but was diagnosed at 4. For the most part he is very accepting of the diet because for him, the symptoms were horrible and he was so sick. So he completely understands that if he eats gluten he will be sick and in pain. BUT, we have also been in that unexpected positition when someone gives the kids food and he is the only one who can't have it. And I watch his face drop and he is usually so brave and tries not to show his hurt feelings. But I see it in his face and it just about crushes me. Unfortunately, as prepared as we celiac moms try to be, we cannot predict everything that is going to happen. The kids will deal with this their whole lives and we have to help them figure out a way to deal with these situations. I think carrying a snack with us might help but I have also refused a food offer for everyone so he wouldn't feel left out. For example, a neighbor who did not know my son's problem offered my kids ice cream sandwiches. I said no thank you for both boys because I didn't think it would be fair. I always figure that my youngest son can have a life time of ice cream sandwiches so he can sacrafice a few while him brother is still young and struggling with these situations.

Nicole

I could have written that !!!!

I know that look of disappointment, with the look of I'm not going to cry behind it. It breaks my heart. I try not to have something glutenous for a treat for the other kids unless I have an equal for those in the house who are gluten-free.

I generally have a few snacks and treats in my bag at all times, I have forgotten on occassion. I try to have things that are special to him that he really likes (gluten-free chocolate covered waffer cookies are special just for him) other things include gluten-free pretzels they are the easiet to transport without breakage or melting, M&Ms, fruit snacks, crackers and nonparishable pudding cups or peach cups.

Now if only I could get my mother to not bring something for the non Celiac children b/c frankly I'm just not into wheat and sugar anymore for any body.

[Nic]

Hi. My little girl was diagnosed with Type 1 diabetes in Jan and Celiac in June. She's having quite a time adjusting. The biggest problem we're having with the celiac is the fact that she has no symtoms. She has never had symtoms. As part of the blood testing with the diabetes, they tested her blood and then she had a biopsy. And they confirmed the celiac and also said she should not have milk products. Oh - okay. Sure. She has to have shots 5-6 times a day, prick her finger at least as many times, not eat any bread, crackers, cake, cereal, pop-tarts, twizzlers...and no ice cream, milk, dip for chips (the few she can have) etc. Yeah - we're having some problems. And if she doesn't have any symtom, its awful hard to understand what were doing this for, and if indeed were preventing some future maybe, might be some related possiblity when she's 40. I don't know if I'm buying all this stuff. My grandfather smoked all his life and never had cancer. Who has proven this gluten-free punishment is necessary. She feels so deprived and left out, its not funny. Why should she suffer emotionally over this big scare, when there is really nothing bothering her if she eats it. I don't get it.

Hi, I am not sure if you were really asking the question, "why should she suffer ..." or were you just venting (as we all need to do). But just incase it was a real question, the damage to the intestines and the lack of nutrients will continue even without the obvious symtoms. I am sorry that your daughter has so many food issues, for my son it is just Celiac and dairy and it is hard enough. I felt as though the gluten free diet was bad enough but when they said no milk to a child that lived on milk I thought that would just about crush him. Especially when he realized that it wasn't just milk and ice cream. It is no for yogurt, cool ranch doritos, chocolate, pudding, etc .... It is hard but he is adjusting. Give her time and with a lot of encouragement she will be ok. I have read about a lot of people on here who did not know they were having a food problem as they never felt sick but then once gluten free, or dairy free, or whichever the intolerance was, they felt better than ever and they had never known they felt sick. Good luck.

Nicole

[Karen B.]

Hi. My little girl was diagnosed with Type 1 diabetes in Jan and Celiac in June. She's having quite a time adjusting. The biggest problem we're having with the celiac is the fact that she has no symtoms. She has never had symtoms. As part of the blood testing with the diabetes, they tested her blood and then she had a biopsy. And they confirmed the celiac and also said she should not have milk products. Oh - okay. Sure. She has to have shots 5-6 times a day, prick her finger at least as many times, not eat any bread, crackers, cake, cereal, pop-tarts, twizzlers...and no ice cream, milk, dip for chips (the few she can have) etc. Yeah - we're having some problems. And if she doesn't have any symtom, its awful hard to understand what were doing this for, and if indeed were preventing some future maybe, might be some related possiblity when she's 40. I don't know if I'm buying all this stuff. My grandfather smoked all his life and never had cancer. Who has proven this gluten-free punishment is necessary. She feels so deprived and left out, its not funny. Why should she suffer emotionally over this big scare, when there is really nothing bothering her if she eats it. I don't get it.

I don't have diabetes, just Celiac, but I had no GI symptoms at diagnosis, just severe iron anemia and a severe shortage of B vitamins and folic acid. When they ran the tests, they were looking for colon cancer. You don't have to have GI symptoms to have Celiac. Testing for Celiac can produce false negatives but no false positives. If the test says you have it, you do. If it says you don't, you still might. I do know it's not a big scare, it's real. Someone with kids could probably better speak to what happens if a Celiac kid doesn't go gluten-free.

I know one way they identify children with Celiac is stunted growth and developmental problems due to malnutrition. Aside from the impact to her growth from the gluten damage, the doc may also be concerned about the affect Celiac would have on her diabetes. You may want to talk to the doc some more about his concerns on this.

The Gluten-Free Diet Improves Glycemic Control in Children with Type 1 Diabetes and Celiac Disease Celiac.com Diabetes Care 2002;25:1111-1122.

Celiac.com 08/08/2002 - A recent study conducted by Dr. David B. Dunger (Addenbrooke's Hospital in Cambridge) and colleagues found that children with type 1 diabetes and latent celiac disease who were put on a gluten-free diet showed significant improvement in their metabolic control and growth.

https://www.celiac.com/st_prod.html?p_prodi...-15107175376.44

[schiralli]

Thank you Nicole. I guess I was just venting a little. It's so frustrating. And it's so hard for her. And how do you know if things are getting better if there are no symtoms to begin with. And if she were not to follow this gluten free diet, who's to say there would be any further problems. Would a twizzler be the end of the world? Can't she have a little butter while at the restaurant eating potatos - the only gluten free thing they serve. It just seems that cutting back makes sense, but going "free" seems a little far fetched. That's like saying I'm going to exercise everyday. Or I'm going to not drink any more soda. It just doesn't happen. Can gluten be that bad that some little flake in a twizzler is going to send her to a life of malnutrition and infertility. (We were at a friend's house last night and she had twizzlers for the kids - that's why I'm on the twizzler kick. Carmen cried and cried because "she can't have any".

I guess if it was me on the gluten free diet, I would have eaten a couple. Would that have killed me - I don't know. They're also fattening, have red dyes, and rot your teeth. But being 8, she doesn't make the choice - even though I would have let her - instead she feels forbidden to eat anything with gluten (or milk) and takes it to the extreme. Maybe thats good. She's better than I am. Maybe its just a big "feel sorry for me" episode. I don't know. I'm probably not even making sense..... I just know that this is very frustrating. This is harder than the diabetes. She can deal with a shot, she can read the blood meter, she can feel when she is too high or too low, she can handle the shot. But celiac is abstract and undefined.

Ok- I'll shut up now and get to work.

Thanks Nicole.

[ptkds]

I know EXACTLY how you feel. My dd is 6 yrs old, and she has the same symptoms as your dd. She was crying last night because she is the only one in her school that has Celiac disease. I reminded her that there were other kids that have other problems, even though it wasnt Celiac disease. She had a classmate that had a nut allergy. But since I also have Celiac, I can totally sympathize w/ her. I tell her that I know exactly how she feels, and I make wishes with her about our "dream gluten-free world". I can usually get her to laugh, but I know that deep down, she is still hurting, just like I am. I cry when I think about the fact that I passed this horrible disease on to 3 of my sweet dd's. I feel constant guilt, and I have a feeling she will feel the same way if her dc have celiac disease one day.

Anyway, I guess my ponit is, just comfort her and console her when it is needed. And try to keep things fair, such as when an unkowing waiter brings some gluten-filled snack, send it back. Or don't let the other kids have them when she is around. Make sure she has special treats that are equivelant to regular stuff.

Good luck!

ptkds

[Cheri A]

((hugs)) for you and daughter!! It took us months to grieve for the loss of wheat! My dd also has multiple other food allergies and the inconclusive celiac/positive wheat allergy came years after the others. But, it was the piece that finally got rid of the the belly aches, vomitting and bottom troubles.

It IS hard. I don't think that eating a twizzler is going to make the world come to an end. But, at the same time, then you will be more apt to let her cheat more and more. It sounds like she is doing great by wanting to avoid all gluten. Encourage her and be positive about her choices.

What helped us was learning what she COULD have and getting it for her. I try to be prepared but she knows that if something unexpected comes up that she can have a treat at home.

School is hard because it's a constant reminder with all of the birthday treats that come in. We ask her "What is normal?" when she gets on that kick - everyone is different. Everyone looks different. Some people have asthma, wheelchairs, glasses, diabetes, food allergies, etc. Most everyone has something that makes them feel "different" at one time or another. The world would be boring if everyone were the same. For us, while dealing with food allergies is not fun, it has taught me a lot. We eat a lot differently (and healthier) than most of the people we know. I think our bodies will thank us in the long run.

I'll never forget at the beginning of her going gluten-free, we had one of those rushed nights and DH swung through the McDs drive through. He forgot to get her hamburger w/o the bun. She just HAD to eat the whole thing. She was very sick that night and told me she NEVER wanted to feel that way again or eat at McDs again. That was before the whole french fry oil thing and all. We really haven't had her even want other foods since then that would make her sick. She gets sad to be "different" occasionally though.

[schiralli]

I'm a horrible person - but couldn't just one other person we know in school with Carmen have Celiac so she wouldn't be in the boat alone.....

Oh isn't that a horrible thing to say.

[ptkds]

Thank you Nicole. I guess I was just venting a little. It's so frustrating. And it's so hard for her. And how do you know if things are getting better if there are no symtoms to begin with. And if she were not to follow this gluten free diet, who's to say there would be any further problems. Would a twizzler be the end of the world? Can't she have a little butter while at the restaurant eating potatos - the only gluten free thing they serve. It just seems that cutting back makes sense, but going "free" seems a little far fetched. That's like saying I'm going to exercise everyday. Or I'm going to not drink any more soda. It just doesn't happen. Can gluten be that bad that some little flake in a twizzler is going to send her to a life of malnutrition and infertility. (We were at a friend's house last night and she had twizzlers for the kids - that's why I'm on the twizzler kick. Carmen cried and cried because "she can't have any".

I guess if it was me on the gluten free diet, I would have eaten a couple. Would that have killed me - I don't know. They're also fattening, have red dyes, and rot your teeth. But being 8, she doesn't make the choice - even though I would have let her - instead she feels forbidden to eat anything with gluten (or milk) and takes it to the extreme. Maybe thats good. She's better than I am. Maybe its just a big "feel sorry for me" episode. I don't know. I'm probably not even making sense..... I just know that this is very frustrating. This is harder than the diabetes. She can deal with a shot, she can read the blood meter, she can feel when she is too high or too low, she can handle the shot. But celiac is abstract and undefined.

Ok- I'll shut up now and get to work.

Thanks Nicole.

I totally feel for you. I know how hard this diet is, and to also give up milk? I don't know if I could do that. But I just wanted to share w/ you my experience. When I was only 23, I had pre-cancerous polyps removed from my colon. I hate to think of what would have happened if I had never had that test done. I would probably have cancer by now, and it could have easily killed me. That would leave my children without a mom. That thought scares me so much. I was just diagnosed a few months ago, years after those pre-cancerous polyps were found. My mom thinks I have had celiac disease most of my life. When I was pregnant (especially w/ my last 2 dd's), I had an increased heart rate, and I could barely get out of bed because I was SO EXHAUSTED, and that was because of my undiagnosed celiac disease. I was malnourished and I didn't even know it. My children all had below-average birth weights, even though I am overweight. I have been anemic for years and iron pills didn't work. I was unable to donate blood because of the anemia. And now, I have some kidney problems that was probably related to my Celiac disease.

I know that this diet is hard, especially if she doesnt' even have obvious symptoms. But just remind her (and yourself) that there is damage going on inside her body. And the long-term effects are there. And she may have children one day that have very obvious symptoms. She won't be able to allow them to cheat on the diet. She needs to learn to deal with it now.

I am not sure of the dr's reasoning for taking your dd off of milk, but if it is just because of the celiac disease, you may be able to introduce her to milk again in a few months. Just talk to your dr about it. Lactose intolorance if common with celiac disease because of the way the villi in the intestines are damaged. Once her intestines heal, she should be able to eat milk again. But check w/ your dr first and do some research on it.

Anyway, I have to go. My dd has a dr's appt.

ptkds

[schiralli]

I have considered telling Carmen that I was diagnosed with Celiac just to be in that boat with her. I often try not to eat anything with wheat in it when I am around her. I have been buying gluten free candies, treats, breads, cookies (boy that stuff is expensive), but most other people around her really just don't care. And not in a mean way. But thats just the way people are. I imagine I have spent most of my life not caring about other people's problems until it was my little peoples' problem.

She gets mad sometimes and yells at me: "You don't know what its like. You don't have Celiac." What I wouldn't give for it to be me with Celiac, not her. I just want to tell her back "you don't know what its like to have a beautiful daughter with a disease." I'm not so sure which is worse.

[buffettbride]

I know that look of disappointment, with the look of I'm not going to cry behind it.

My heart breaks a little every time I see that look.

Sadly, there's really no fixing it. My DD also did not have severe symptoms and it's so tempting sometimes to give in, but you just can't.

I have a 3 year-old DS who's gluten status is unkown at this point (we think he's not Celiac, though) and one of our favorite things at the grocery store was to get a free cookie from the bakery. Now, instead, each kid picks a package of their favorite gluten-free cookie (the whole house is gluten-free) and they enjoy it at home. It's sad how something so joyful is now so complicated in order to treat each child fairly.

I don't think "feeling different" will every go away but trying to encourage a feeling of acceptance of Celiac Disease and recognizing all the other wonderful things your child has to offer this world that are completely unrelated to food issues.

[Darn210]

My 6 year said to me the other day that she was "special" because she has Celiac disease. She chose the word, not me, but I thought that was a nice way to put it instead of "different". We also talked about some of the other things that make her special! I don't want her disease to define her.

I try to have something with me that I can whip out when a gluten snack is being passed out that she can't have. She is also mature enough that if I am not prepared and tell her she can have something special at home, she's OK with that (and very good about holding me to it).

Just a reminder as school is coming up. Last year (kindergarten for my daughter), I took in a bag of individually wrapped snacks - tootsie rolls, snack size potato chips, etc, that I left with her teacher. It was the "good stuff" that ANY of her classmates would have wanted. Whenever something was handed out in the class that she couldn't have (or the teacher wasn't SURE she could have), then my daughter got to pick something out of her bag. She didn't feel deprived, and there were times that the other kids wanted what she was having instead of the other way around.

[Nic]

I also think it is so important to focus on the positive when these situations come up. I know it is hard, especially if your child didn't feel sick to begin with. But I have really made it a point to console (sp) him on his really bad days and to absolutely sympathize but I never show him I feel sorry for him (even though I do) because I don't want him to feel sorry for himself. He is no different than any other person with a disability of some sort and it is what life has delt him so he has no choice than to accept it. And for the most point he has accepted it well. The hardest part I think was loosing dairy after 2 years of being gluten free. We had the diet down without a hitch. Even eating out. We ate out at Cheeseburger in Paradise and he would have the mini cheeseburgers (no bun) and for dessert, Ice cream. Well, now there is no cheese on the burgers and no dessert at all (that may have been harder on me than on him ). But now once again, he has adjusted to the dairy free as well. It just takes time and an understanding that gluten is toxic to a Celiac, no matter how small or the reaction. If our children took a small taste of poison and had no reaction, would we let them eat more?

Nicole

[Juliebove]

One thing to keep in mind, it might get easier as she gets older. It did with my daughter. She's not celiac but is allergic to wheat, gluten, dairy, soy, peanuts, eggs and bananas. She was diagnosed at age 6. For her it was quite easy at first because she felt a lot better and was very careful with the diet because she didn't want to get sick.

What made things tough for her is that she has a friend who is pretty much allergic to all the same things she is plus some other foods. The other girl's mother is not as careful with her diet and allows her to eat things she is allergic to, giving her some kind of pills from the health food store if she does get sick. In a way I can understand why she feels she might have to do this because she is allergic to SO many things. But OTOH, I sometimes feel that she isn't trying to keep her daughter from getting sick. The girl has even come to me crying about it because she doesn't want to get sick. I'm sure it must be very hard for her getting mixed messages like that. So my daughter can't understand why her friend is allowed to eat certain things when she knows she is allergic. One difference between the two girls is their reactions to the allergens. My daughter's reaction is much worse.

My daughter can very much see the cause and effect thing of the allergies. Like your daughter, much of her problem was behavioral. She'd get brain fog, couldn't listen or concentrate in school. It got so bad she fell behind and was placed in special ed. Now at age 8, almost 9, she is finally out of special ed! She really hated being in special ed because not only was she different with the food allergies, but she had to take special classes as well! She is VERY happy that she won't have go through the special ed stuff next year.

One thing I did for school was to try to make her lunches as much the same as the other kids have. I preferred not to send in sandwiches too often because the gluten free bread is so expensive, but she got upset when the other kids poked fun at what she had in her thermos. So I vowed to send in sandwiches at least twice a week. And while she does have special foods like the Enjoy Life cookies, I also try to send in as much "normal" foods as I can. Like containers of applesauce or cans of Vienna sausages.

When there are school projects/parties, I volunteer when I can and make sure that I have something suitable for her to eat or do (many of the projects/games involve food). Last year there were two other kids with food allergies (one severe) so I worked around their allergies as well. I think it helped that there were several kids with allergies so they didn't feel as left out. And they knew that I would always be there with food and projects for them. When the class had a pizza party, I brought in some special pizza I made in an insulated container. I also sent in a package of suitable candies at the beginning of the year so that when there was something like a birthday party that I didn't know about in advance, she would have a treat.

When Angela was first diagnosed, I went gluten free as well. It was just easier that way. Then I found out about my own food allergies. Dairy, eggs and almonds. Gluten free pasta is about the only way I can go because my egg allergy is severe and I don't dare risk the cc that regular pasta might have since it is all processed in a plant that uses eggs. But I have a whole slew of other medical problems and many of them are diet related. I finally had to go back to eating wheat in some forms because there was so little I was able to eat, given my digestion problems. I don't make a big deal of it and I keep my bread, crackers and cereal in a different place where she won't be tempted by them.

Husband has no food issues, but we buy much of what he might eat (like sandwiches and breakfast burritoes) pre-made so we don't have to bring in a lot of those things we are allergic to.

My daughter has all of her food in a special area. This is partly because my husband is so clueless. He can never seem to remember what all she is allergic to and has repeatedly tried to get her to eat something she shouldn't. I also figured this would solve any potential problems if she ever had a baby sitter and meal time rolled around. She has her own little fridge and we set up some shelves with her cereals, snacks, breads, etc. She made a fancy sign to put on the shelves saying, "Angela's food! Stay out!"

Dining out with just the two of us is not a problem. But it can be a problem when my husband is along. He just doesn't understand. We tend to dine at the same places and the wait staff knows us so they never bring us any bread. But when we dined at a new place and I said we didn't want any bread, he flipped out. Made a big stink that we were paying for it so we should get it. Which would be fine with me if HE were going to eat the rolls. But he didn't want them. So we were forced to sit there with big huge rolls and butter in front of us. Had to smell them throughout the whole meal. Daughter was soooo upset about it! In my opinion there was just no reason at all for that. He also doesn't understand the issue of cross contamination and will laugh at us if we order a burger without the bun. That's very hurtful.

One thing my daughter has come to realize is that we're all different. Not everyone has food allergies or even medical problems. But everyone has at least one thing that is a problem for them. Just as everyone has at least one thing that comes easily to them. In Angela's case, it's dance. She lives for dancing. Not everyone can do that. She has had to learn to celebrate those things she enjoys and is good at and not to focus on those things she can't do or have.

[Karen B.]

I'm a horrible person - but couldn't just one other person we know in school with Carmen have Celiac so she wouldn't be in the boat alone.....

Oh isn't that a horrible thing to say.

You probably don't even have to say it. Have you checked with your local Celiac group to see if there is a ROCK group in your area? Or have you considered starting one? (Raising Our Celiac Kids)

Local Celiac Disease Support Groups/Chapters

https://www.celiac.com/st_prod.html?p_prodi...-49107235539.b0

When I was diagnosed a few years ago, the hardest thing for me to get used to was that Celiac isn't like my MSG allergy where I could have a little and maybe take a Benedryl and it would be okay. Small amounts do matter, they trigger a cascading reaction. Giving my hubby a light peck after he had eaten raisin bran was enough to cause a gluten reaction.

[tarnalberry]

I asked her if she was feeling bad and she told me that she was. I praised her for talking to me instead of holding it in and staying mad but I felt so bad! How should I handle these situations and how can I help her?

I think, from everything you describe, that you're on the right track. While I say this from the perspective of not being a parent at all, I was a kid who had to work through being different, and if it's a serious concern, consider working with a child counselor to help your daughter build the coping skills and attitude needed for dealing with this. I have only ever benefited from the years, as a child and an adult, that I've seen counselors for dealing with significant life-impacting changes.