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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.

People Not Taking You Seriously
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53 posts in this topic

I think a percentage of the general public has no clue where their food comes from. For example, a waitress in a restaurant when told my husband cannot have wheat asked if he wanted regular white bread with dinner. I think explained that bread (like Wonder or Arnold) has wheat in it. She seemed surprised to hear this info. Perhaps basic "foods" education in school is needed - learn about all grains, meats, fish, vegetables, etc.

I think perhaps food servers and kitchen prep people should have to take a 1 day course at the local town/county/state Board of Health to learn about foods and allergens including types of diets: low fat, celiac, diabetic, vegan, etc. Think about it: the person who does your hair at a salon has to be licensed, why doesn't the person who cooks/serves/prepares your food get at least a 1-day seminar with Certificate of Learning?

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Ads by Google:

Are there no gluten free snacks?

Costco has an awesome cracker called Crunchmaster that is VERY tasty!! but, generally,.. there is a shortage of snacks IMHO.

I think perhaps food servers and kitchen prep people should have to take a 1 day course at the local town/county/state Board of Health to learn about foods and allergens including types of diets: low fat, celiac, diabetic, vegan, etc. Think about it: the person who does your hair at a salon has to be licensed, why doesn't the person who cooks/serves/prepares your food get at least a 1-day seminar with Certificate of Learning?

Hear hear!! I totally agree..

I am amazed, reading back over this, how many friends and family go into denial about whether wheat can cause issues, and the extent to which people go to 'ignore' (I will not call it abuse) others and make 'in your face' choices.

Whenever I hear about this (or experience it) I am reminded of Yosemite Sam and the mule... maybe we just need to get their attention first.. ;)

I think I once heard.. you have to hear the truth 10 times before you will except it. (I'm guessing that's an old adage and an average.)

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Most of the posts here are from last year especially the one I wanted to address the most which was the OP.

Thankfully, I don't have an issue with family or friends when it comes to gluten except for one "family" member. That single individual doesn't believe in it, thinks it's nonsense, thinks the sensitivities/intolerances/allergies I have developed over the past 2 months since being gluten free for 6 months is because I need gluten in my diet, etc. add nausea. That's fine though as we have never & never will get along and, he is only family via a marriage and everyone including his wife (you love who you love) knows he is ignorant. On the bright side, I've never had an issue with friends regardless of what I have chosen or had to avoid at some point.

That being said, I have had several issues with my family in the past on various different things I wasn't eating and why. I am a fairly blunt person so my family should have known what to expect when they used to choose to hound me over a topic. I finally told them all at either a Thanksgiving or Christmas dinner somewhere way back around 1998 that I was "no longer interested in anything anyone had to say about my health and body and what I choose to do with it". I told them all "you are all free to continue ruining your health and lives but, stop passing judgment on me for improving mine as I respect each of you enough to not pass judgment on you for what you eat".

Keep in mind, that this was brought on over the simple fact of eating a healthy diet (several small meals a day) low in fat, lifting weights, and not eating anything with any added sweeteners of any kind. It was a major issue at every family event for close to a year or two at that point and, there was really no reason for it to be as I wasn't requesting anything special be made. It was simply an issue of leave me alone and let me eat the food I have brought in peace. At the time though, I was really "ahead of my time" because people in general weren't avoiding the actual horrible for you fats, sweeteners, artificial chemicals/additives/preservatives/etc., and so on.

Anyway, over the years there have been several battles so they are worn down and "broken" to the point of not asking me a hundred times (hyperbole but you get the point) during a day we have gathered together if "that's all you're going to eat", "do you want desert", "how about this desert", what about this desert", "are you sure you're full" etc.

You really just have to be firm and stern with people that give you grief over something important to you. This is especially true when it's a health issue. If they are acting like children, you might just have to treat them as such, act like a parent, and tell them this is how it is and that's the end of the discussion. Now, we have all been kids and we all know that way of handling a situation can backfire but, sometimes it just has to be done and the fallout from it is what it is. As uncomfortable and as hard as it can be, sometimes you just have to say it like it is and get it all off your chest. Most people will back off at that point because, they know there is no way in the world they can even begin to muster up a counter argument.

Now for those of you shocked at why 99% of my family has no problems with gluten after reading my story above, it's because it is currently destroying my father and probably has been for decades. As you all know though, this often goes undiagnosed for far to long. My family has actually had to learn about it since he won't go anywhere where there is a risk of CC because, it will most likely land him in the hospital at this point in time. I did however get questioned at Easter about why my food choices are so limited and is it really healthy to get 700 out of 1000 calories from bananas a day. My explanation was brief and something to the effect of "I have had issues with several other foods come up, bananas are really the only calorie dense food I can handle, they are simple sugar so it's used almost right away, without them I would have almost no calories in my diet, and I am meeting and surpassing all my nutritional needs with an Omega 6 : Omega 3 ratio of 2.5:1 day in and day out". It was no longer an issue at that point as there is no way anyone else in the room could tell me what there average daily calorie intake was much less if they were meeting a specific amino acid recommendation each day. Being analytical may have it's disadvantages but, in situations like this it is an argument winner almost every time. There is just no way to counter that level of information without a ton of research and, there is no way to do said research "on the spot". Information like that is like a snake jumping up out of nowhere and striking lol.

To be fair, the question was posed out of actual concern and interest which why I responded in a calm and extremely detailed manor in case anyone thinks me response synopsis sounded curt. I also eat more than bananas but, they are by far the bulk of my calories and 25% of my food budget. For the sake of disclosure, I eat hazelnuts, sunflower seeds, bananas, carrots, basil, salmon, and oysters on a daily basis. The only actual issues with my diet are it is lacking in chloride/sodium (which can be fixed with a 1/4 tsp of sea salt), and iodine & B1 (Thiamin) are half of what they should be. Both the iodine and B1 (Thiamin) exceed the AI (Acceptable Intake) though and, the iodine can be easily fixed with kelp. The B1 (Thiamin) will be tricker since I have to avoid all grains and, what I can eat is generally pretty low in it when you are trying to stay between an Omega 6 : Omega 3 ratio of 1:1 to 2.5:1 (4:1 maximum). I may have to look into a supplement that only contains B1 (Thiamin) which will be a nightmare since I will not take a synthetic vitamin nor one that is free of binders, allergens, yeast, silica, and all the other unnecessary items that get added to supplements. Honestly, another 7.55 g (grams) of sunflower seeds (raw) would cover the B1 (Thiamin) but, I don't want the 1.74 g (grams) of Omega 6 that come with it nor the additional 47.31 calories that which will raise the amounts of nutrients I need for the day.

BTW, I fully understand how nitpicky that sounds but, I am super analytical and it was fairly difficult to get everything properly balanced with such a short can eat list and a strict food budget of $100 a month for just me. I am also aware that 1000 calories a day is pretty low but my MBR is only 1500 calories and I do have body fat to spare right now so, this is really no different than a cutting cycle in bodybuilding. The calories would be higher in that actual scenario but, I am not weight training or doing any cardio right now anyway as I am on a "layoff" period. I do not intend to stay at this calorie level until the end of time and I will probably bump it back up to around 2000 in a few months.

If anyone would like further details on my diet, I will be happy to provide them. I just don't want to get much further off topic since this thread isn't about what I specifically eat. I only brought it up since the discussion was about how to deal with family and friends that don't understand why you eat like you do and, several of you will probably have a similar response to my specific diet lol.

Speaking of which, back to main topic. You really have to treat it like a debate and, I mean an actual debate and not what passes for a debate these days. Keep it factual, detailed, educated, scientific, etc. Leave out the hype, fear mongering, mudslinging, judging, etc. You absolutely have to be more prepared than the people you will encounter. Now, that can & will be exhausting and frustrating especially when people want to keep arguing when they have no actual counterpoint at all but, you always have to be prepared and "on your game". It's the only way you will ever stand a chance and, people other than yourself will quickly see who is a naysayer for the sake of nay-saying. Just stick to actual facts that can be backed up with hard conclusive data and things should settle down some and, always express them in an easy to digest (no pun intended) manor.

Hopefully this post will help someone out at some point :P

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I guess I just have finally reached the point where I feel I do not have to justify anything, to anyone. As long as I don't inconvenience anyone it is none of their business what I do or do not eat. I would not presume to tell anyone what they should eat, even the people who obviously have problems with gluten. I may drop a little clue here and there, if they express any interest I will elaborate, but what they eat is their business and what I eat is mine.

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I totally understand this. My brother and his family came up and we took our mom out to eat for Easter and to celebrate her 70th birthday. My brother has really bad health issues as well as his wife. both my mother and sil has just recently gotten out of the hospital due to pnumonia. Sil has high blood pressure, migraines, she's had 5 hiatel hernia surgeries in the past 6 years, numerous other health issues, my mother has almost constant diareah plus had her thyroid removed over 30 years ago. I have explained to these people about the gluten but they just shrug me off and go on about their business, but yeaterday I could not keep my mouth shut. I have 2 nieces, 1 is 15 the other is 16. The 15 year old undoubtedly has food issues because I keep track of her on facebook and she is all time talking about not feeling well, having headaches, tummy upsets, etc. Yesterday, she had maybe finished eating for about 10 minutes and I seen her face turn white. She headed immidiately for the bathroom. When she came back I got her off to the side and talked to her. She had gotten sick and vomited. She says that that is not all that unusual. I explained to her about the gluten and she's looking into it. Come to find out my brother and his wife didn't think she needed to know about it. Really pissed me off. I'm hoping that maybe she can start to feel better.

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I think a percentage of the general public has no clue where their food comes from. For example, a waitress in a restaurant when told my husband cannot have wheat asked if he wanted regular white bread with dinner. I think explained that bread (like Wonder or Arnold) has wheat in it. She seemed surprised to hear this info. Perhaps basic "foods" education in school is needed - learn about all grains, meats, fish, vegetables, etc.

I think perhaps food servers and kitchen prep people should have to take a 1 day course at the local town/county/state Board of Health to learn about foods and allergens including types of diets: low fat, celiac, diabetic, vegan, etc. Think about it: the person who does your hair at a salon has to be licensed, why doesn't the person who cooks/serves/prepares your food get at least a 1-day seminar with Certificate of Learning?

I am a server at a local steakhouse and we have a relatively clean kitchen considering most of what we do is meat and veggies. However, there are breads, pastas, and other such no-no's around. Even after having several severe DH reactions, our head cooks would not believe me that my gluten intolerance was a real thing. We live in a pretty health-conscious community, however, and as more and more people came in asking which of our dishes might have gluten, they have slowly changed their minds. The customer is always right :) and in a lot of cases, willing to pay good money for safe options.

Things are slowly changing, and there is even notice on the kitchen wall for the other servers to help their customers who have questions. (Although they're far more likely to run to me and make me do it if I'm there.) Please don't take offense if your server accidentally asks you your bread choice, or some other thing that is immediately ovious to you. Some of these things are merely automatic-responses, and any competent server will accomidate you if you help remind them (nicely! Please!) what you need to stay clear of. They would certainly do this for someone with say, a nut allergy, and most are even used to vegetarians. It's just another way of thinking about what you need to exclude, and as we all know, it is not easy to get used too. There are lots of things out there (like soaps, or malt, or flavorings) that don't even occur to people who haven't been dilligently looking for it every day. So just ask! (And be nice! "Don't **** with people who handle your food," us celiacs even more so.)

It is difficult to eat out as a celiac, and I am lucky that I am not so sensitive that I can't eat things from our work kitchen simply because there are other gluten-containing products around me.

Absolutely *everyone* who handles food is legally required to go through a food handler's certification course, and should be able to produce proof of this if asked. If you have reason to suspect mistreatment of your food, or un-certified workers, contact you local health department.

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I am dealing with the same thing. It's as if my family thinks it's a choice I made to get attention. When I am visiting my parents, it's hard when the only milk they have contains lactose and the only bread or cereal has gluten. I have found that Kay DH is right in saying the best family are the ones you aren't related to. Try not to let it get you down. Some people just don't understand that it is a necessary change you have made and you cannot control how they feel, or their lack of understanding. I hope everything is going well and things have gotten better. The most important thing is your health and it's great that you're sticking to it!

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I am dealing with the same thing. It's as if my family thinks it's a choice I made to get attention. When I am visiting my parents, it's hard when the only milk they have contains lactose and the only bread or cereal has gluten. I have found that Kay DH is right in saying the best family are the ones you aren't related to. Try not to let it get you down. Some people just don't understand that it is a necessary change you have made and you cannot control how they feel, or their lack of understanding. I hope everything is going well and things have gotten better. The most important thing is your health and it's great that you're sticking to it!

Hi I am new to this post and was diagnosed with celiac almost 2 years ago now. I thought my family would have been supportive but boy was I wrong. Since my diagnosis I have been excluded from going out to dinner with the family on holidays or occasions because certain family members refuse to go to the few choice resturants I can eat safely at. When I have brought up the issue and how it hurts me I am told my diet makes it too hard. Hard for who? They can eat anywhere at anytime the other 364 days a year. I dont feel they take the disease seriously at all. My mother has tasted my food and has said how horrible it is and that she would never eat it even if she had to. My father has hurt me on various occasions with comments like "how is your birthday cake? oh yeah you cant have any haha" I dont understand this at all. It hurts alot and it is causing problems between them and I. They are very insensitive. Luckily my husband is wonderful - he is basically gluten free by association and has no complaints.

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I'm somehow lucky i guess. I was just diagnosed two weeks ago, and have had to tell my grandmother and mother (whom i live with) what i can have and can't have anymore. It took them about a week before it finally 'struck' if you will. Now my grandmother is searching up google and looking for gluten free recipies, my mother talks of getting a new toaster for me among other things.

I also had to contact my school (i am a college student that lives on campus) and thus far the Disabilities office says they'll be able to accomidate me :) (luckly i have like two days left of the semester, i told the head that i have enough foodstuffs to last me and that i just want it all arranged for next semester).

My suggestion, is just to keep bringing it up over and over and over again.

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Hi I am new to this post and was diagnosed with celiac almost 2 years ago now. I thought my family would have been supportive but boy was I wrong. Since my diagnosis I have been excluded from going out to dinner with the family on holidays or occasions because certain family members refuse to go to the few choice resturants I can eat safely at. When I have brought up the issue and how it hurts me I am told my diet makes it too hard. Hard for who? They can eat anywhere at anytime the other 364 days a year. I dont feel they take the disease seriously at all. My mother has tasted my food and has said how horrible it is and that she would never eat it even if she had to. My father has hurt me on various occasions with comments like "how is your birthday cake? oh yeah you cant have any haha" I dont understand this at all. It hurts alot and it is causing problems between them and I. They are very insensitive. Luckily my husband is wonderful - he is basically gluten free by association and has no complaints.

I have had quite a few of the same problems as you. I have had family members basically laugh at me and say things like "oh sorry for you!!lol" and "why cant you just eat it and deal with it" kind of crap. Luckily most of these people aren't blood family (Mom's husband's family)otherwise I would probably be totally heartbroken although it is very annoying either way.

Its sad how so many people don't take food allergies/intolerances seriously. How they brush it off like "oh its not going to kill you" ... I have heard that one a few times. I have been lucky. My husband is very supportive and helps me day to day. My Dad is very supportive and so is his girlfriend, who her brother is Celiac. She is so wonderful and always makes food for me during family gatherings. It is so nice to go somewhere and be able to sit down with your family, have a meal and not worry about explaining yourself all the time or worrying about what you are putting in your mouth.

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I have a supportive close knit family and friends but from time to time there is one skeptical friend who'd think that I won't be poisoned if I eat gluten. As if my gluten free diet is somewhat like atkins or south beach! That I am doing this just so that I can slim down.. ( which is weird because I am slim at 100lbs!) <_<

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None of you are going to want to read what I am about to write. 99.999% of all people not allergic to gluten don't want to hear about your allergy or celiacs. Sorry. We don't. I love my friend to pieces. But to be honest, I simply cannot take it any more. Every single conversation ends up with her changing the subject to a topic related to her allergy. It's exhausting. I am supportive and she has no clue that I am emotionally drained by this.

The mere suggestion of going to a summer food festival caused her to get very angry at me and my friends for asking if she wanted to go. It was as if stupid non-celiacs should have known better than to ask her to attend a food festival where she can't make the food or know what goes in all the dishes. A polite, non-angry, non-sarcastic "thanks, but no thanks" would have been just fine.

The trouble is, that I hear this kind of indignation all the time. Heck, I read it on these boards in a futile attempt to learn how to be a better friend and help her. How DARE us non-celiacs not know any better. IT IS EXHAUSTING. The world cannot conform to you just because you have a disease or an allergy. That is not how things work. Life isn't fair.

You are non-wheat in a wheat world. Deal with it. I have type I diabetes since age 9. I have to watch every scrap of food I eat, test my blood several times a day, and take injections of insulin. But I can count on one hand the number of times I have brought up my diabetes in the last month. It's always a quick, "Be right back, got to test." I do not drone and whine on and on about it. No one without diabetes wants to hear about it. I will not bore them or gross them out.

My friend's long term boyfriend dumped her two years ago. He said the main reason was that he couldn't take the "gluten this, gluten that, everywhere gluten, gluten, gluten" any more. She was a buzz kill at every step. He told me privately that he got sick of hearing about her pooping and gas issues and that he wasn't allowed to go out to dinner any more because she didn't want to go with because of "cross contamination".

She wouldn't even let him use her dishes to eat anything with gluten on it. Hot sanitized dishwasher apparently doesn't "kill" gluten. None of us are buying that. She ate gluten for forty years and didn't die. One molecule of it will not kill her or make her ill. He's not going to force her to eat off a dirty gluten-covered dish. Again, this was completely exhausting. And I am at that same point. I am trying to work out how to break up with her. Our other friends have had enough and don't see her any more. I would hear from them all the time, "Doesn't she ever shut up about gluten?" She met a new couple at an outing and within 15 minutes she was talking about celiacs. All of these friends got out. I am thinking they have the right idea. I am so over this attention fest.

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Strawberryshortcake, if you "love my friend to pieces" maybe you should sit down and talk with her if you haven't already. People react to their diagnosis in different ways. You just sound so angry. Or maybe it's just time to move on and either accept her or let the friendship go.

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The trouble is, that I hear this kind of indignation all the time. Heck, I read it on these boards in a futile attempt to learn how to be a better friend and help her. How DARE us non-celiacs not know any better. IT IS EXHAUSTING. The world cannot conform to you just because you have a disease or an allergy. That is not how things work. Life isn't fair.

most celiacs do not expect the world to conform to us. When it get's annoying is when people get in your face about choosing not to eat something. Example 'would you like a biscuit' (knowing already you can't eat gluten)...no thank you...'oh go on, one won't hurt you', really, no thanks, 'oh come on it's not that bad' and so on. It builds resentment.....where if the biscuit was never offered, or a gluten free restaurant was chosen, it need never be an issue.

Quite often it's others that make it an issue because THEY don't like the fact that we can't/won't just eat everything that is put in front of us.

Well, I'm sorry, but I don't want to end up with screaming diarrhoea, stomachache, nausea, vomitting, skin rashes, and brain fog for the next two weeks, just to keep you happy by eating what you want me to eat.

You are non-wheat in a wheat world. Deal with it.

Ah now, if you really know anything about this disease you KNOW it's not just wheat right? Most of what is convenient food wise is out of the question for us. Unless it's been prepared in an area free of gluten (not just wheat) and prepared without anything containing gluten, it can make a celiac person very ill. Read up on one of the threads that someone got glutened by using a bowling ball and then eating something they were safe to eat. Mostly I adapt my own behaviour to fit to the environment around me. If my family hold a party, I take my own food. I don't expect them to prepare entirely gluten free to accomodate me. I would suspect that most people who have gluten issues are the same.

I have type I diabetes since age 9. I have to watch every scrap of food I eat, test my blood several times a day, and take injections of insulin. But I can count on one hand the number of times I have brought up my diabetes in the last month. It's always a quick, "Be right back, got to test." I do not drone and whine on and on about it. No one without diabetes wants to hear about it. I will not bore them or gross them out.

you might think differently if people were trying to force foods onto you that you really couldn't eat.....high sugar or what have you. But, I would imagine if your blood sugar gets strange you can sort that right? You do not have to avoid every single food that may contain, or may have been touched, or prepared in an area that it could have gotten even the tiniest trace of gluten in it.

My friend's long term boyfriend dumped her two years ago. He said the main reason was that he couldn't take the "gluten this, gluten that, everywhere gluten, gluten, gluten" any more. She was a buzz kill at every step. He told me privately that he got sick of hearing about her pooping and gas issues and that he wasn't allowed to go out to dinner any more because she didn't want to go with because of "cross contamination".

I can understand her not wanting to go out. And I can understand him getting annoyed with it. But again to use the diabetes thing...it's not the same issue. He goes out and has a lovely gluteny pizza, comes back, gives her a nice big kiss and before you know it she's in the bathroom with diarrhoea for the next three days. This disease RELIES on those close to us being understanding and considerate. You have no such issue with diabetes. That is down to yourself. Unfortunately, someone else being thoughtless can make us very sick. Would you really want to be sitting on the toilet at 3am emptying the contents of your stomach from either end? Because someone took a sip out of your wine glass after eating pretzels? I don't think so.

All of you guys have been discussing it behind her back it seems. Has any one of you had the courage to actually approach the subject with her face to face? This thing CAN get all encompassing because you have to think about so much, constantly. Sometimes friends are there to bring us into line too, not just to agree with or put up with everything we say.

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Strawberryshortcake, I'm sorry for your situation. You hear a lot of things on this board, because this is a place for celiacs, gluten intolerants, and their loved ones to discuss and to vent (and talk about poop :ph34r: ). In daily life, however, I'm sure that most celiacs do not go around waxing poetic about their latest bathroom accomplishments. I've had friends deathly allergic to nuts and peanuts and can count the number of times in 25 years it's been brought up by both on one hand. The only reason gluten (or dairy or soy) ever comes up with my friends is if it's my first time telling them when the situation requires it (like them handing me a cookie) or they ask if I can have something. I go to food festivals, restaurants, special events, etc. with friends. I just don't eat what's provided. Yes, I get sad and angry sometimes about it, but that can either be vented here on this board or chanelled into something creative in the kitchen. Taking things out on friends is not appropriate. Your friend sounds like an anomaly, and it sounds like she could take a chill pill (provided it contains no wheat starch). But yes, a bite or a crumb or a simple pill can have dire consequences, which can include the vile bathroom things, and for some us neurological issues like dropping things, falling down randomly, and incapacitating migraines. Celiac isn't a quick death like anaphylaxis; it can be a slow one if untreated with the only cure--avoiding gluten,--that manifests in many different ways, internally. Hot water does not kill gluten, because it was never alive. Soap and water can wash it off of dishes, however there are implements and utensils that can harbor stuck-on gluten in crevices. I don't expect the world to conform to me. I must adapt my way of doing things to keep myself safe. No one else needs to understand that, but they do need to respect it. It sounds like your friend needs a reality check. She seriously will drive everyone away by moaning all the time, no matter what the subject. It also sounds like you could use a break from someone who weighs you down. I'll go with you to the summer food festival! I'll take notes and prepare those foods myself (probably better than the originals) and share with anyone who wants some good eats!

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None of you are going to want to read what I am about to write. 99.999% of all people not allergic to gluten don't want to hear about your allergy or celiacs. Sorry. We don't. I love my friend to pieces. But to be honest, I simply cannot take it any more. Every single conversation ends up with her changing the subject to a topic related to her allergy. It's exhausting. I am supportive and she has no clue that I am emotionally drained by this.

The mere suggestion of going to a summer food festival caused her to get very angry at me and my friends for asking if she wanted to go. It was as if stupid non-celiacs should have known better than to ask her to attend a food festival where she can't make the food or know what goes in all the dishes. A polite, non-angry, non-sarcastic "thanks, but no thanks" would have been just fine.

The trouble is, that I hear this kind of indignation all the time. Heck, I read it on these boards in a futile attempt to learn how to be a better friend and help her. How DARE us non-celiacs not know any better. IT IS EXHAUSTING. The world cannot conform to you just because you have a disease or an allergy. That is not how things work. Life isn't fair.

You are non-wheat in a wheat world. Deal with it. I have type I diabetes since age 9. I have to watch every scrap of food I eat, test my blood several times a day, and take injections of insulin. But I can count on one hand the number of times I have brought up my diabetes in the last month. It's always a quick, "Be right back, got to test." I do not drone and whine on and on about it. No one without diabetes wants to hear about it. I will not bore them or gross them out.

My friend's long term boyfriend dumped her two years ago. He said the main reason was that he couldn't take the "gluten this, gluten that, everywhere gluten, gluten, gluten" any more. She was a buzz kill at every step. He told me privately that he got sick of hearing about her pooping and gas issues and that he wasn't allowed to go out to dinner any more because she didn't want to go with because of "cross contamination".

She wouldn't even let him use her dishes to eat anything with gluten on it. Hot sanitized dishwasher apparently doesn't "kill" gluten. None of us are buying that. She ate gluten for forty years and didn't die. One molecule of it will not kill her or make her ill. He's not going to force her to eat off a dirty gluten-covered dish. Again, this was completely exhausting. And I am at that same point. I am trying to work out how to break up with her. Our other friends have had enough and don't see her any more. I would hear from them all the time, "Doesn't she ever shut up about gluten?" She met a new couple at an outing and within 15 minutes she was talking about celiacs. All of these friends got out. I am thinking they have the right idea. I am so over this attention fest.

Unfortunately, there are always going to be those "me" people whose focus is on their world, to the annoyance of everyone else. Most often it's because there are many who have difficulty in grasping how this disease really works and what they need to do to be healthy and live a normal life. They resent the work involved and that translates into how they look at life after a Celiac diagnosis. Yes, there are those who go overboard and like to be drama queens about it all but not all of us are like that. It's more of an overall personality issue.

Personally, as a person whose sibling has Type 1 diabetes, I have always thought being a diabetic is far more difficult than being a Celiac. You are correct, you have to test blood sugar however many times per day, estimate the amount of carbs, proteins, etc. so you can judge the amount of insulin to administer and stay away from sugar in a sugar filled world. I gave up all sugar for 2 years to combat a candida problem and that was much, much harder than giving up gluten. Diabetics can have far more serious, life threatening complications than a Celiac has, most of the time. I have 4 autoimmune diseases and still think diabetes is harder than what I go through. I take this disease in stride and don't let it rule my life, for the most part. I am extremely sensitive also so have to be really careful but it's not a show stopper....or at least I try to not let it be.

You are faced with a choice of keeping her as a friend and talking to her about it or dumping her from your life. Been there, done that and it isn't easy. I have had to dump friends who had other issues that made being with them very difficult. I understand your dilemma. Good luck because it isn't easy talking to people these days. Look at the reactions you will get for posting a scientifically proven fact about Celiac on any forum. And yes, a non-Celiac can eat gluten on a dinner plate and soap and water will wash it off just fine. I won't die if my husband does that. I just don't let him use the wooden spoons I use and he has his own toaster! ;)

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Strawberryshortcake, I am sorry about your friend. I get it a little bit. When I first went gluten free I knew nothing about Celiac disease or gluten intolerance. I was doing a lot of research online and was finding all sorts of stuff that I never knew was related. I was always telling my wife, oh my gosh my anxiety could be tied to this as well. Oh my gosh, my asthma could be tied to this. And this and that. I know I talked about it a lot because it was so new to me. She has been great and went gluten free with me. She only eats gluten when she travels for work. But she sat me down after about two weeks and said, "I love you but this all scares me and I really don't want to talk about it for a while so I can process it." Now I let her bring it up when she has questions or concerns. I make a conscience effort not to bring it up. As far as the original post, everyone has been great. When I described my symptoms my Mom and sister's face went blank and said that both have been secretely suffering from almost all of the same symptoms and would give it a try. The only issue I had was on vacation one year my Dad would say, "Just have one meal, we are on vacation." I sat him down later and said that if it was just the heartburn, indigestion, bloating, cramping, etc. I could maybe handle that. But I don't want the laying in bed at night buzzing with anxiety scared to fall asleep to come back. My anxiety issues where 10x worse than my GI issues and have all but disapeared now.

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And yes, a non-Celiac can eat gluten on a dinner plate and soap and water will wash it off just fine.

I'd agree, but with a caveat. When the dishwasher is doing a good job, and everything is washed off completely, then the dish is safe if it's got not crevices. But for things like, say, a plate with dried pasta residue, sometimes there is still some left on the plate, even in the dishwasher. We've had that issue at our relatives before, where we had to end up scouring off some of the plates because there was just a little pasta residue you could see still left on the plates. Would have missed it if we hadn't been looking.

So if boyfriend's dishwasher is only so-so, or if his pre-dishwasher rinsing of plates isn't that great it could be an issue. And based on my numerous single, male friends, this is probably more likely than not, LOL. But that being the case, I wouldn't be eating off his glutened plates, either.

And StrawberryShortcake, from your choice of words, I'd assume it's not the soap and water that you are thinking about as the 'gluten killer.' You said: Hot sanitized dishwasher apparently doesn't "kill" gluten. None of us are buying that.

The soap part of the dishwasher is what does the trick. The sanitizing heat? That doesn't do jack to gluten. A dishwasher is not getting any hotter than temperatures in an oven used to bake bread, and THAT doesn't destroy gluten, either. It's a tough molecule, but it's not alive. So a technique used to kill germs doesn't necessarily have the same effect on gluten.

So if you're not buying that the high heat destroys gluten? You might want to rethink that, because it doesn't, not unless it's getting up to around 600 F.

I can honestly understand the frustration with hearing about gluten all the time, and not WANTING to hear about it all the time. We don't want the minutae of someone's bowel habits. It's too much.

But at the same time, it does seem like your friend is running into the attitude that her concerns are invalid and she's just being hyper-sensitive, at least based on the little information you have given about what you and her boyfriend both think. If she's getting sick all the time because the people around her don't think they have to be careful, and aren't careful, maybe part of the reason she keeps talking about it is because she's hoping that her friends/boyfriend will realize that she IS getting sick. That these things ARE an issue. And hoping for a little support, in a way.

Maybe not, maybe she just likes to talk about whatever's going on in her life and can't shut up to save her life. I suppose it's just a sad situation.

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None of you are going to want to read what I am about to write. 99.999% of all people not allergic to gluten don't want to hear about your allergy or celiacs. Sorry. We don't. I love my friend to pieces. But to be honest, I simply cannot take it any more. Every single conversation ends up with her changing the subject to a topic related to her allergy. It's exhausting. I am supportive and she has no clue that I am emotionally drained by this.

The mere suggestion of going to a summer food festival caused her to get very angry at me and my friends for asking if she wanted to go. It was as if stupid non-celiacs should have known better than to ask her to attend a food festival where she can't make the food or know what goes in all the dishes. A polite, non-angry, non-sarcastic "thanks, but no thanks" would have been just fine.

The trouble is, that I hear this kind of indignation all the time. Heck, I read it on these boards in a futile attempt to learn how to be a better friend and help her. How DARE us non-celiacs not know any better. IT IS EXHAUSTING. The world cannot conform to you just because you have a disease or an allergy. That is not how things work. Life isn't fair.

You are non-wheat in a wheat world. Deal with it. I have type I diabetes since age 9. I have to watch every scrap of food I eat, test my blood several times a day, and take injections of insulin. But I can count on one hand the number of times I have brought up my diabetes in the last month. It's always a quick, "Be right back, got to test." I do not drone and whine on and on about it. No one without diabetes wants to hear about it. I will not bore them or gross them out.

My friend's long term boyfriend dumped her two years ago. He said the main reason was that he couldn't take the "gluten this, gluten that, everywhere gluten, gluten, gluten" any more. She was a buzz kill at every step. He told me privately that he got sick of hearing about her pooping and gas issues and that he wasn't allowed to go out to dinner any more because she didn't want to go with because of "cross contamination".

She wouldn't even let him use her dishes to eat anything with gluten on it. Hot sanitized dishwasher apparently doesn't "kill" gluten. None of us are buying that. She ate gluten for forty years and didn't die. One molecule of it will not kill her or make her ill. He's not going to force her to eat off a dirty gluten-covered dish. Again, this was completely exhausting. And I am at that same point. I am trying to work out how to break up with her. Our other friends have had enough and don't see her any more. I would hear from them all the time, "Doesn't she ever shut up about gluten?" She met a new couple at an outing and within 15 minutes she was talking about celiacs. All of these friends got out. I am thinking they have the right idea. I am so over this attention fest.

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Wow! That's quite a post. Well, I was only diagnosed about 3 weeks ago, and while I'm sure my family and husband have gotten an earful in this early stage, the plan is to be pretty quiet about it in future. I was actually glad to hear your view point, as its an excellent reminder of how wrong this could all go. My husband is not into anything or anyone high maintenance, so I will have to be incredibly careful on that front to keep the peace. Your story will likely stay in the k of my mind for some time. I hope that you are able to figure out the situation with your friend...but frankly, I find it hard to believe that she's just this way about Celiac...she sounds like an overall selfish person who isn't very aware of those around her. Unfortunately, she's got a big lesson coming. Its too bad that you got caught up in it - it sounds like you're being a much better friend right now, and I don't blame you for being over it.

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Either accept her for what she is or move on and forget about it.

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sounds like they are not ready to hear about the effects gluten are having on them. so if i were you i would focus on getting their support versus trying to convince them they need to change their eating if they want to feel better.

i do not see any where about if you asked them why they get annoyed when you say you cannot eat something. is it because they feel guilty they are eating something you cannot? does it make them think about how they should change their diet? are they so misinformed they think you are hurting yourself by not having gluten? they want to be helpful but do not know how so they go about it all wrong?

my impression based on your post is you are annoyed and possibly defensive. if that is the case it can contribute to a nasty cycle with your family. granted my situation with my family is different, but I do not mind checking over labels. it does not hurt me any, it does not take long, and then we both know for sure. it is also somewhat easier for me to look since i have so many dietary restrictions that i can barely keep them straight let alone someone else remembering and understanding them. my boyfriend's family does not get it so i just explain and check labels they do not get it but they are not nasty about it.

my family and friends do not get it. so i try to explain it to them. in your case it seems like there is more going on with your family. i would ask them what is going on with them because as it is everyone just seems frustrated, bored, and tired. i would say about how i feel and try not to sound like i am blaming them. i would try and use i statements so they would not be so reactive, defensive, etc since there seems to be something going on with them.

hope i did not come off as a jerk.

best wishes!

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Maybe some of the problems are how you come across. Personally, I find that saying "unless" completely negates the fact you said no which can make things confusing for others. Also, when most people talk about foods such as, cake, pasta, doughnut they are talking about the glutinous versions. So the correct answer to they question can you eat doughnuts is no. By qualifying your response you make it seem like it is possible they will be able to eat the item they are offering. It comes across like saying no, I don't eat hot dogs unless they are 100% beef. So the person's first inclination would be to check to see if they bought all beef hot dogs. I find it easier to say point blank no when I'm offered gluten and only answer the questions they ask.

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OMG!!! I have went through the exact same thing this weekend for a family birthday party and Labor day party!!! It is so exhausting! They just don't understand what we have been going through:(

Hopefully it gets better, when dealing with friends and family

How do you deal with family members and friends who don't take you seriously?

I discovered I have celiac disease and went gluten free 6 months ago. The problem is I've been living abroad for several years so my family has not witnessed my symptoms. All these years I hid from them that I suffered from fibromyalgia and chronic fatigue as well as constant GI symptoms and mental health issues, etc...

And so I'm visiting them this summer and they seem to think going gluten free has only been a diet choice, nothing dangerous. I tried telling them about the symptoms I was getting. Also, my mother has suffered the same symptoms all her life and suffers from cerebellar ataxia and has had difficulty walking for a few years as a result of gluten. I tried explaining this to them and that if I carried on eating gluten, I'd end up like this too. But it's like their face goes blank and they stop listening at this point.

So I feel like I constantly have to defend myself. They especially don't understand why I'm being careful with cross contamination and get annoyed each time I say I can't eat something.

For example, I was making gluten free pasta at my aunt's house the other day and she wanted me to use her colander. I said I'd rather not as they use it for wheat pasta all the time. But she was arguing that it's fine and that it's washed very well. I still said no, but she wouldn't let go.

Or another example of annoying conversations we have is:

Aunt: "can you eat doughnuts?"

Me: "No, unless they are gluten free"

Aunt: "I have some doughnuts in the fridge, can you eat those?"

Me: "Most likely not as doughnuts are generally made from wheat flour unless you took them in the gluten free section, but no one buys baked goods in the gluten free section unless they're looking for gluten free specifically"

Aunt: "You never know, maybe I grabbed gluten free doughnuts without realising, let's have a look"

- So Aunt gets up, walks to the fridge and brings me the doughnuts -

Me: "No seriously, they will be made of wheat. You don't go to gluten free bakeries or shop in the gluten free section unless you are gluten free. It's not something you just stumble on accidently. There are not enough gluten free products on the market for that to happen, unfortunately."

Aunt: "You don't know that. You don't know until you read the ingredients."

- Aunt hands me the doughnuts -

Aunt: "Go on, check the ingredients"

Me: "Fine"

Me: "First ingredient - wheat flour"

Aunt: "ah"

Aunt: "But I have biscuits too, can you eat those?"

Me: "No, biscuits are made of gluten too"

Aunt: "But maybe these are made with gluten free flour"

Me: "No, as I said, baked goods on the market are very rarely gluten free"

Aunt: "Why don't you just look at the ingredients before dismissing them?"

Me: "Because I know they contain gluten! These things are made with wheat flour!"

- Aunt gets up and gets the biscuits and makes me read the ingredients -

Me: "Made with WHEAT FLOUR"

Aunt: "Ah, well what about these other biscuits?"

Me: "As I said, baked goods are generally a no..."

*Sighs*

And so on.... And it gets tiring for me... and them...

And the problem is, they raise the gluten issue in every conversation. And when I respond they always seem tired and bored of me talking about gluten. Well then why don't they just let me eat what I want and stop questing and interfering. :rolleyes:

Is anyone in the same situation? How do you deal with that? :rolleyes:

(rant over)

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Ahhh....

This is encouraging (in a very frustrating way) to hear. I have the same issues with someone in our family, and it is difficult. In fact, I think I'll go down now and see if I can "help" with dinner.

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