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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.

Sick Of Being So Different
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36 posts in this topic

Who else is sick of having to deal w celiacs? I hate having to be so careful w my food, having to make my own food to bring to parties. I hate it!! No one else in my family has this, they don't understand how bad it sucks to be so different. They keep telling me that I'm over reacting, it's not that bad to have this allergy, but they don't have it, it is not going to personally affect them! If they are hungry, they can grab anything.

I am so frustrated. I have 3 gatherings to go to next week, all surrounding food. I don't know how I am going to handle it. I was just curious how everyone else deals with it.

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Ditto that.

1) excess chocolate.

2) occasional screw-ups (new rule: read the label TWICE, slowly, right, go on... do it again).

3) sometimes just plain feeling sorry for myself.

4) serious, serious training of my friends, who now ask me where to go for dinner, or what exactly they should bring. fortunately, they are mellow kind people and mostly saw me get sicker and sicker this spring.

5) high levels of involvement in the kitchen at family members/carrying own food.

6) mental map of where I can acquire "safe" snacks in the neighborhoods I frequent often.

Hey, should we start some google maps deal? there must be a way...

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Yea it's frustrating. I handle it by eating before I go and keeping some kind of snack with me. You might want to bring a dish to pass that you know is gluten free and serve yourself first. Even if it is the only safe thing that is there at least you will have something safe. You might also want to have some gluten free treats on you, cookies or some cake etc. Just so when everyone is enjoying their dessert you have one too. If people ask you about it just tell them your celiac. You may even be surprised and discover someone else there is too. I was surprised to find someone diagnosed and his parents wondering if they were also at my table at my DD's wedding. As more people are being diagnosed we are getting less and less 'different' every day. Seems almost everyone I meet at least knows someone who is diagnosed.

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I attended an informal pot luck function last Friday evening for one of the groups I volunteer for. I took a big platter of fruit to share, and hub and I took separate plates of food in our picnic basket (the stand from the microwave that allows you to bypass the turntable works out great for this). It was only at the very end that one of the spouses of our group noticed that we were eating something different and, had we brought our own? And everyone raved about the fruit - it made a nice change from all the gluten they were eating :D Since everyone was taking food, I didn't feel different at all, and our coordinator for all the groups came over from the city - she brought the bread and bought two small delicious loaves from a gluten free bakery I didn't even know about, just for me (and hub who she didn't know was gluten free too) :D

But it is not always that easy not to stand out and not to feel different. We just need to develop a thicker hide than most have, learn what coping mechanisms work for us, and not care what other people think. This is totally unlike the way I was raised, where it was always "What will the neighbors think??", to which I now answer, "I don't care."

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Sometimes, I just don't go. I don't like it when it's a stand around the food and graze party. Sit-downs are different. I can bring my food and eat at the same time. If I know what is being served, I bring something similar. They had pasta and salad and cake at the football banquet. I made some pasta and broiled it with cheese on top ( stays hot longer).

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I understand how youn feel-I had a bit of breakdown yesterday since I'm the family baker and I can't eat any of that stuff and I just had to watch it and think of how good it looks. Gluten free mixes can be expensive. Everyone else has given you great advice, so I just thought I would offer the comfort or sympathy :) I was crying my eyes out, but I'm beginning to accept having Celiacs now. Some times a good cry just helps!

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Yea it's frustrating. I handle it by eating before I go and keeping some kind of snack with me. You might want to bring a dish to pass that you know is gluten free and serve yourself first. Even if it is the only safe thing that is there at least you will have something safe. You might also want to have some gluten free treats on you, cookies or some cake etc. Just so when everyone is enjoying their dessert you have one too. If people ask you about it just tell them your celiac. You may even be surprised and discover someone else there is too. I was surprised to find someone diagnosed and his parents wondering if they were also at my table at my DD's wedding. As more people are being diagnosed we are getting less and less 'different' every day. Seems almost everyone I meet at least knows someone who is diagnosed.

This sounds like great advice; thanks for the information. I've been really struggling this week, too, since it's my first holiday season where I am totally gluten free. It helps to know that I'm not the only one feeling a bit frustrated.

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I understand too. At work we had free lunch the other day, sandwiches and pizza. Then there were cupcakes and two different cheesecakes both with cake/crust parts at the send-off party for one of the guys in the lab an hour later. I'm open about my celiac. Between two rounds of food, couldn't just one measly gluten-free thing have been ordered? Just one? A measly salad at lunch to show that someone thought "gee, she can't eat all this bread"? OK. Done ranting.

I try to always have something really good to eat I bring myself. I focus on the friends and the companionship and try not to think about the food. Everyone has their cross to bear and this is ours.

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When I feel like this I remind myself to stop giving food so much power. It's just food. Fuel for our bodies. Fuel to put one foot in front of the other.

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Just wanted to lend another vote of support & sympathy. Even though I've only been gluten-free since October, I have been on a couple of long-term diets the past 15 years that were gluten-free, Sugar free, & dairy free and yeah you don't feel like you can eat anything. The only way I found I could cope with the restrictions was to make sure I always have leftovers and food cooked up in the 'fridge. Then I have the ability to toss together a "to go" tupperware container in 1 minute if necessary. Having refrigerated or frozen goodies help too - cupcakes, cake, cookies, you've made in advance. One of the real insider tricks to hassle-free cooking is always always always have certain staples on hand. For instance, I needed to toss together some "goodies" for my daughter's spur-of-the-moment get together with friends and in less than a 1/2 hour I had air popped popcorn with cheddar seasoning in gallon zip locks, and no bake cookies (made with gluten-free quick oats) ready to go.

It's a transition but learning to take food you love with you all the time is the only way to stay sane. I like the idea of knowing the safe snacks and where to buy them in neighborhoods you frequent. Another plus.

Hang in there. It's a cliche but we are all in this together. Life is going to be much easier as more people discover they have gluten issues.

Smiles,

FooGirlsMom

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hey guys,

I don't really think that I can say I'm sick of being so different yet as I have only within the last week been diagnosed as having coeliac and then last night found out that I can't eat lecithin either, but mostly just other peoples responses is what has been getting me down. We very much do need to develop thick skins though. The thing that annoys me most though is that I have been diagnosed right before christmas. And through all of this I wonder what having coeliacs was like before the days of the internet.

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We all feel frustrated at times. I feel fortunate that my family and friends try really hard. I have had more than one of them go out of their way to make sure that they had sothing I could eat. They don't make a fuss about what I eat or don't and defer to me for restaurant choices. I don't like the idea of "making a fuss", either, but they have each said to me at one time or another, "what if it was me?" They are right, I would be supportive and wouldn't criticize them.

I've only been doing this since August, but it does get easier. It still is WAY better than feeling lousy. I would rather eat differently vs feeling so rotten I wasn't well enough to go. Hang in there!

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I wanna say it's getting easier, but it's not. I was diagnosed with celiacs in january, and in march, found out I was allergic to dairy, eggs, all citrus, all poultry, celery, strawberries and hazelnuts. This year I went to one party. I used to average about 15 a year. I've somehow grown tired of all my friends, so I barely talk to them, if at all. I've even grown tired of my boyfriend who seems to think i'm making it all up. I'm wondering if anyone else has inadvertently seperated themselves from the rest of the world. And any ideas on how to rebuild.

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I haven't been doing gluten free very long, but I understand where you are coming from. It's hard for me because my family has always eaten out a few times a week. So every time we get ready to go somewhere I have to make sure they will have options for me and there's always a risk of cross contamination, but I don't want to be home by myself! It's especially hard starting this diet near the holidays. I have been to a couple of gatherings since starting the diet and just make sure I bring a few dishes that are gluten-free and serve myself first. I think one of my biggest problems is the fact that I feel different and don't want people to have to cater to my individual needs, but I will have to learn to accept that eventually.

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I understand too. At work we had free lunch the other day, sandwiches and pizza. Then there were cupcakes and two different cheesecakes both with cake/crust parts at the send-off party for one of the guys in the lab an hour later. I'm open about my celiac. Between two rounds of food, couldn't just one measly gluten-free thing have been ordered? Just one? A measly salad at lunch to show that someone thought "gee, she can't eat all this bread"? OK. Done ranting.

I try to always have something really good to eat I bring myself. I focus on the friends and the companionship and try not to think about the food. Everyone has their cross to bear and this is ours.

My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

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My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

Wow. That's horrible. I'm thankful to have a family that understands somewhat about my needs. I'm so sorry! :(

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That is so mean. I think I would have gotten up and left. Period.

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That is terrible! :o:(:(:(

I am so sorry you had to go through that.

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My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

I can sure relate to that! I don't have celiac but I do have food allergies and diabetes. My mom always asks me what kind of cake I want for my birthday. I always say, "No cake! I don't eat cake." I have asked for this for many years. Even before the food allergies and diabetes. I just do not like cake. One year they got me pie even though I didn't want that either.

One year I begged to have no dessert. I just don't think it is needed. We almost always got out to eat for birthdays because there are so many food allergies and other food issues in the family. We do have to be careful where we eat, but a few times on birthdays that were not mine or my daughter's they went to places where the two of us could not safely eat. But most of the time we can all have a meal together.

But the cake? I certainly can't eat it now even if I wanted to. I am forced to sit there looking at it and smelling it and it doesn't make me happy. Daughter has a wheat allergy as well so I do have to bring something along for her to eat while the others have their dessert. It can be a royal pain!

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Wow I would have disowned my family, they mustn't even think about your needs, especially considering that the gluten free cupcakes and cakes I make don't even taste any different (with a tiny bit of icing).

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Who else is sick of having to deal w celiacs? I hate having to be so careful w my food, having to make my own food to bring to parties. I hate it!! No one else in my family has this, they don't understand how bad it sucks to be so different. They keep telling me that I'm over reacting, it's not that bad to have this allergy, but they don't have it, it is not going to personally affect them! If they are hungry, they can grab anything.

I am so frustrated. I have 3 gatherings to go to next week, all surrounding food. I don't know how I am going to handle it. I was just curious how everyone else deals with it.

I think we all are. The one great thing we have going for us is this forum. I have never met a wiser, kinder and more supportive people gathered together is one place. Just remember you have all of us and we've all gone through people not understanding (or not trying to understand)why we can't eat gluten (and some of us can't eat other things). If you're uncomfortable about going then find an activity you'll truly enjoy and do that instead.

Loey smile.gif

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When I feel like this I remind myself to stop giving food so much power. It's just food. Fuel for our bodies. Fuel to put one foot in front of the other.

What a great way to look at it.

Loey biggrin.gif

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My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

That's nice (not). My 40th was last year and my husband did nothing for me - I didn't find out until that day. He said, "Yah, you can't eat anything, so I didn't plan anything." What? Now that was awful. My poor sister and her family stopped by to give me my gift and my 3 yo niece said, "Where's the party?" and my stupid dh said, "There isn't one." I cried and cried.

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Wow. That's horrible. I'm thankful to have a family that understands somewhat about my needs. I'm so sorry! :(

Well, there are issues.. I don't think it was malicious.. they just don't get it on so many levels. I am still trying, after three years, to cope with the fact that I have to guard my own little safe corner.. walked in to the kitchen last night as I was cooking up some burgers and picked up the spatula without checking or thinking.. had been used for their dinner and was dangerously cross contaminated. Seems like the wife got upset with me. I seem to be the one causing all the inconvenience. No wonder I still have damage consistent with celiac after two strict years of rigorously gluten free. Could very well be why I am out here during dinner while they are all having a good time around the dinner table. Oh well. Had to leave because the pasta boiling was making me feel nauseated.

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That's nice (not). My 40th was last year and my husband did nothing for me - I didn't find out until that day. He said, "Yah, you can't eat anything, so I didn't plan anything." What? Now that was awful. My poor sister and her family stopped by to give me my gift and my 3 yo niece said, "Where's the party?" and my stupid dh said, "There isn't one." I cried and cried.

That's so sad.

Loey sad.gifsad.gif

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