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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.

Family Members Who Just Don't "get It"..
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10 posts in this topic

I have been eating gluten free since 10/2012 and feeling better.. (I have had some slip ups that have made me very sick - especially over the holidays since that was a completely new experience). I have been loving the feeling of eating and knowing I won't get sick. I have read a new book which gave me SO much information on how to read ingredient labels and cross contamination. I recently went shopping at a local health food store and had a basket full of foods that proudly stamped their products as "gluten-free"! The feeling when I left the store was so uplifting, I couldn't wait to get home and try some of the new foods and fill my newly designated cupboard with my goodies! But even after having these moments of motivation that I am on the right track to feeling healthy, today I am struggling with a feeling of sadness. I have a battle going on with my emotions when I am in social situations. I have been trying to NOT be the topic of conversation at the dinner table because I don't want to feel like the outcast.. but I also feel like people can be insensitive by expecting me to be a part of social dinner gatherings and just NOT eat certain foods without providing an option of something gluten free I can have to replace what I am missing out on. We went out to dinner to a favorite restaurant we have gone to for YEARS which is a family style all you can eat restaurant where they bring bowls of pasta, rolls, fries, chicken and salad with their signature dressing untill you are stuffed. We called ahead and asked how the foods were prepared and which items were safe for me to eat.. so my choices were to bring my own dressing and ask for dry salad, and also the fries and chicken are safe. No big deal I thought... but watching our large group (15 of us) enjoy ALL the items that I USED to also enjoy started to bring me down a bit.. and at the end of the meal the fact that my father-in-law kept INSISTING that we take the extra rolls home for my girls (who are 3 and 1 and a half) to eat really bothered me. I said no thank you - we are all set.. and when we were walking out he handed me a bag with the rolls in it that he had packaged up even after I had said no. I try not to make my family feel like they have to go without gluten just like I do, and I try to make it not such a big deal when we all eat together.. but I just found the gesture completely insensitive.

I have only been eating gluten free for a few months as I said before.. and my family has in some cases gone out of the way to get gluten free items or even cook completely gluten free for me (my mother even made me my own turkey at thanksgiving with gluten free stuffing) and I feel SO happy when they do these things for me. But more often it does not happen that way and I find myself feeling like the outcast, and I also don't want to bring up the fact that I can't eat certain things and make anyone feel bad for not making something that I could've eaten.. The worst is when someone offers me an item full of gluten (like a stuffed mushroom) and when I say "no thank you, I can't eat that" and my husband says "why would you even offer her that?" the response is "I was trying to be nice"... I know most people don't understand about gluten and what foods contain it... but how is that "being nice"??! I know I will need to just be patient and over time people will probably understand better.. I just needed to get this off my chest and hopefully someone out there can give me some motivation/inspiration to be happy my diet! I keep reminding myself of great I feel physically - but I am in need of some emotional support!

Thanks for listening to my rant!

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Don't be so hard on yourself. You are still going through the grieving process for the things you have lost. Yes, it is a real grieving process. It takes a wile to work through all the stages of denial, anger, etc., until you come out the other side into acceptance. During grief it is harder to cope when others don't understand what you are going through and seem insensitive, thoughtless, even mean! (when they don't 'mean' to be - they are just not thinking of things in the same way you are.) It sounds like they are trying to be helpful and just need a little more training. So long as you are consistent in your refusals they will eventually get the message and life will be easier. But it usually takes longer than three months for everyone to get to this point. Try not to make a big deal out of it, no histrionics :D - just a simple no thank you and, if necessary, I can't eat that.

Stay strong, and here are some {{{{hugs}}}} to keep you going, because we do understand :)

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:D Thank you so much! This site is so helpful and it is great to be able to come here for info and support.. I spent so long being sick with no one who could really understand what I was going through and now I have a cure - while amazing - is also a (whole new) challenge!
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You're doing whats right for you body, which is the most important. I remember having so many conflicted feelings (I still have them!!!). On one hand, we get mad when people are insensitive and don't understand what its like to have this lifestyle, but on the other hand it feels weird and more isolating when people attempt to go out of their way for you which ends up making us feel like outcasts. For example, my future mother in law has been extremely supportive of me since my diagnosis last year which I am incredibly thankful for, but when we are at a party on my fiance's side of the family and she whips out a bad of homemade gluten-free cookies and yells out, "Dont worry Laura, I have some gluten-free cookies for you right here!" I want to run and hide in a corner - all I want to do is slip by unnoticed to avoid all the questions. Normally, I try to take the time to educate people, but sometimes I'd rather just blend in.

It DOES get better, and it DOES begin to feel more normal. People do catch on, but there will always be some time when you just want to reach out and choke somebody - I wonder, if the "twinkie defense" was able to work, can't a "gluten defense" work too?? :P

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I think a lot of people just don't really realize how hard it is to be the only one who can't eat gluten (or anything). So even if they do something that seems blatantly insensitive, and even if they're trying to be supportive, they really just don't know how you're feeling.

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i fend for myself and nowadays i just make everybody aware of it. i had a lovely woman (my friend's friend) who was trying to cook a meal that everyone could eat (me) so she showed me every ingredient in the marinade - safe - steak (told them make sure to put tinfoil down on the grill surface for my steak) - safe - potatoes, olive oil, italian herbs - safe - broccoli - safe. i turned away for one moment and the next she has the veggies in a non-stick (contaminated) pan, the men have gotten hold of the steaks and put them (directly) onto the grill......... NOT SAFE! and, after all that effort it pained me to tell her i would just make myself a ham sammich..... but less painful than getting sick. my new motto is: if you love me, don't try to cook for me!! :)

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Thanks for everyones responses! I know most people have good intentions and my body feels so much better which I just need to keep reminding myself. I think the hardest part is feeling so different than everyone else around you.. everytime I even put my hand in a box of cheerios to give to my daughters I feel like I need to clean my hands! Hearing your stories most definitely helps me feel like i'm not alone :)

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I know that different feeling (and I do try hard not to feel different). I am five years in, and two separate things happened to me yesterday. I ordered a cappuchino and a gluten free snack for myself at a coffee shop, then I sat outside and waited for them to bring them to me. The barista brought me my coffee and on the spoon was a small (very small :) ) cookie. I actually had it in my mouth, bitten in half, before I realized that the barista had not brought me my snack and didn't know what I had ordered and that therefore the little cookie was not gluten free (he just knew about the decaf coffee). Fortunately I had not begun to chew and was able to remove it from my mouth along with all the crumbs in a not-too-noticeable panicky fashion :D and suffered no consequences. I had to go back to the counter to remind them about bringing my food :rolleyes:

The second moment was at my book club meeting last night, the first of the year. We had three new members; one of them was very observant! She noticed that I just passed on the pizza bread plate which was circulated and that I did not partake of the small supper offered but instead produced something from my purse, and on the way out she asked if I had special dietary restrictions (for when she was hosting) and said that her household caters for all food restrictions, which I thought was especially sweet of her :wub:

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i fend for myself and nowadays i just make everybody aware of it. i had a lovely woman (my friend's friend) who was trying to cook a meal that everyone could eat (me) so she showed me every ingredient in the marinade - safe - steak (told them make sure to put tinfoil down on the grill surface for my steak) - safe - potatoes, olive oil, italian herbs - safe - broccoli - safe. i turned away for one moment and the next she has the veggies in a non-stick (contaminated) pan, the men have gotten hold of the steaks and put them (directly) onto the grill......... NOT SAFE! and, after all that effort it pained me to tell her i would just make myself a ham sammich..... but less painful than getting sick. my new motto is: if you love me, don't try to cook for me!! :)

Yep, it's the helpful people who mess up unintentionally that's terrible. I'd rather be offered food I can't eat most of the time and just say no than have to explain that what they did wasn't good enough. The worst is when someone takes a 'risk' with an ingredient that I wouldn't use myself but that's probably safe.

Like the book club and someone making you gluten free food, I wouldn't like that. Not one bit.

My mom made 'gluten free food' before we knew I was a celiac and would label it as such and bring it to potlucks etc trying to be nice, and let me tell you that cross contamination would have happened in that dish, guaranteed.

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Having struggled with these issues since the late 1970s, let me tell you, I have had to become numb to being called "weird," "eccentric," and who knows what else? But by rigidly sticking to my diet, I am no longer frequently in the hospital, as I used to be. No grains, milk & dairy, egg whites, yeast, maltodextrin, msg, casein, whey, and now no meats either. I am officially vegan because of food intolerances, but I am able to breathe, walk every day, work, and sleep well. Oh yes, digestion is often a dilemma, and a few other things, but I can live with those. You'll never know how many years it took me to become immune to what other people were saying and doing because of my food intolerances. Now, however, they don't even have to be concerned with what I am eating, because I've taken the complete responsibility for my well-being onto my own shoulders, and I always take my own food, my own containers, my own plastic-lined purse in case of spills, and my own cheerful attitude, knowing that I have chosen foods which will benefit my health, which are allowed on my regimen, and which are guaranteed to taste great and leave me better off than before I ate.

At Christmas, while the whole family was having prime rib and cheesy potatoes, I was eating chinese vegetables and a yam, which I had prepared at home and brought along. No problem! I still think of how good that prime rib looked and smelled, and how luscious those cheesy potatoes appeared, but my mind is now in tune with my body, and I enjoyed my dinner to the fullest. Oh, "...to the fullest!" Ha. That's for sure, because I was so full I wasn't even tempted to look longingly at the cheesecake they served for dessert, just took a glance and walked away.

The way to solve the problems we've discussed is to make sure they are not a problem at all. You have the power to do just that! Make the best, most mouth-watering foods you can imagine, and, soon, those issues will seem to have just dissolved. I'll be waiting to hear how you're doing.

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