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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Defending My Choices
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TheIntern    0

Hi all,

I'm relatively new and have been gluten-free for about three weeks now. I plan on getting tested soon (and I guess I'll go back on gluten for that), but I know that I have some form of gluten intolerance, if not celiac. For now, though, I'm content to be gluten free and not feel like absolute crap. My nails are better, even my vision has slightly improved.

Anyway...I hate having to defend my food choices since I don't exactly have a diagnosis yet.

My roommate and I were at an ice cream shop and I excitedly said "Oh! They have gluten-free ice cream!". She laughed and looked at the guy working there and said "She thinks she can't have gluten. But she's self-diagnosed" and started laughing! I was mortified and felt just plain stupid. I was tempted to get the oreo ice cream just to feel a little better. But I KNOW I would have been sick within a half hour.

Do you guys experience this, too? This pressure to just eat normal even though you just can't?

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ndw3363    15

I too am self diagnosed. I've been gluten-free for over 1.5 years and it still annoys me to have to explain sometimes..."oh you can just have one" Um, no I can't. I find that my answer depends on the person I'm with - if I'm with family and they ask, I can be as vulgar and honest as I like which usually shuts it down pretty quickly (go into detail about what will happen if you eat it...people love that) :-) If it's friends or someone new, I typically don't bring it up. On first dates and such, if they offer dessert, I just politely say that I don't eat sugar instead of going into the whole gluten-free thing. Then I go home and indulge on a block of cheese :-) Sometimes when it does come up, someone will ask if I have celiac - I'll explain in as little detail as possible that no I don't have a formal diagnosis, but I feel SO much better when I don't eat so I'd rather just go without. If that doesn't work, I say I just don't like it (which actually isn't a lie - about six months ago I got mad about the whole thing and cheated for a week - things I used to love didn't taste right anymore and it was a total let down - I hurt myself for nothing). I try to use humor whenever I can. Everyone has things they don't eat and it's not necessarily because they can't. I've hated bananas my whole life - I don't react to them, I just hate everything about them so I don't eat it even though most people love them. In my mind, it's the same thing. Good luck to you!

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cyberprof    62

Intern, first your roommate sounds like a mean person, not a friend. You don't have to justify your choices and not being diagnosed doesn't matter in this situation.

You have several choices on how to deal with this. Ignore, fight back or change your tactics.

You could talk to her privately and ask that she respect your choices and then ignore her. You could say "I choose to eat this way." instead of "I can't have that." (This was recommended to me as a way to deal with calorie-reduction for weight-loss, to change one's mindset. I find it helpful.) Simply say "I don't eat ice cream cones." or "I am so excited to try the coffee/toffee flavor!"

You could be less effusive when you find a gluten-free product or food and not expect her to be happy for you. Just take it in stride - it will eventually be "normal" for you. This may be easier than being confrontational. You can get validation here when you find a great gluten-free product or have a good restaurant meal. Or you may find other people who are happy for you.

If this happens in the future, you could look at her and say something like "Wow, aren't you in a snippy/weird/argumentative mood today?" Or " Please, have what you want to eat and let me have what I want."

Unfortunately, this won't be the last time that you have to deal with this. Figuring out how to manage it does get easier. Good luck!

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bartfull    565

I think I mentioned here before how I handle it. Of course it won't work with your roommate because he/she already knows you are self-diagnosed. But in future you might consider how I (also self-diagnosed) deal with it:

I say, "When I was diagnosed with celiac..." That way I'm not really lying because I was diagnosed - by myself. And if people take it to mean a DOCTOR diagnosed me, that's OK because they are more likely to take my disease seriously.

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Gemini    785

Hi all,

I'm relatively new and have been gluten-free for about three weeks now. I plan on getting tested soon (and I guess I'll go back on gluten for that), but I know that I have some form of gluten intolerance, if not celiac. For now, though, I'm content to be gluten free and not feel like absolute crap. My nails are better, even my vision has slightly improved.

Anyway...I hate having to defend my food choices since I don't exactly have a diagnosis yet.

My roommate and I were at an ice cream shop and I excitedly said "Oh! They have gluten-free ice cream!". She laughed and looked at the guy working there and said "She thinks she can't have gluten. But she's self-diagnosed" and started laughing! I was mortified and felt just plain stupid. I was tempted to get the oreo ice cream just to feel a little better. But I KNOW I would have been sick within a half hour.

Do you guys experience this, too? This pressure to just eat normal even though you just can't?

If it makes you feel any better, those of us who have an official diagnosis get the same crap from friends and family. I remember being incensed with my sister, after I was diagnosed and trying to order a meal in a restaurant, when trying to explain how careful I have to be with CC when the waiter was taking our orders. She gave me that smarmy eye roll and I just about decked her. For someone who works in the medical field, she was her stupid best that day. BTW.....my sister has a problem with gluten also but doesn't have the digestive issues that I had so she thinks she is fine. She has 3 other AI diseases,all associated with Celiac, but no, she is fine. :rolleyes:

You have to grow a thick skin and pooh-pooh people who treat you this way. It depends on the situation but I have verbally reamed people for being so stupid but other times I ignore their ignorance and move on. You don't have to justify your eating habits to anyone. I do not feel we eat anything but normal....healthy normal. It's not our problem the rest of society chooses to eat garbage. :P

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Takala    413

What a charming room mate you have there. Imagine how wonderful her other relationships will be. :blink::ph34r:

I just don't agree with this option:

You could be less effusive when you find a gluten-free product or food and not expect her to be happy for you.

I don't care if other people are "happy for me" or not, but I would be damned if I was going to tip toe around being "less effusive" when I find something I can eat, so as to not provoke a sadistic response from such an idiot. My being able to eat something is not taking away one iota from other people's ability to being able to eat the same thing. Our ability to be able to find something to eat in the first place, partially depends on being able to give positive feedback to those establishments that are providing it.

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cyberprof    62

What a charming room mate you have there. Imagine how wonderful her other relationships will be. :blink::ph34r:

I just don't agree with this option:

I don't care if other people are "happy for me" or not, but I would be damned if I was going to tip toe around being "less effusive" when I find something I can eat, so as to not provoke a sadistic response from such an idiot. My being able to eat something is not taking away one iota from other people's ability to being able to eat the same thing. Our ability to be able to find something to eat in the first place, partially depends on being able to give positive feedback to those establishments that are providing it.

Takala, I'm not going to argue with you but Intern has options and she can make a choice as to how she wants to handle it. An option would be just to order and eat the food without making a big deal out of it being gluten-free. It's what my daughter (who is gluten-free but doesn't need to be) wants me to do when I'm out to dinner with her. Teenagers are like that and Intern's roommate sounds immature like a teenager.

There are some people you can change, some you can't. If she has a lease agreement and is stuck with a roommate, she may have to deal with the roommate, unlike a friend that you could avoid or de-friend.

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flowerqueen    26

It sounds like your room mate has self confidence issues trying to belittle you in front of someone else, and it says more about her/him, than it does about you. I have been diagnosed coeliac but I would always respect someone else's choice if they felt they had coeliac disease - after all it's your life, and your body, and it's you that suffers if you make a mistake with your food choices.

I agree with an earlier comment, and you should have a private word with your room mate but in future just don't explain why you are gluten free to people, you shouldn't have to. I don't drink alcohol because I get severe migraine within half an hour with so much as a teaspoon of alcohol and I wouldn't dream of 'explaining myself' to others, I can't have it and that's that. Perhaps you should adopt a similar approach, at the end of the day, it's nobody else's business but yours.

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TheIntern    0

I guess maybe the problem is that I'm just starting out so when I find something gluten-free at a restaurant, I still get excited. It's been really hard these first few weeks and it's kind of freaking me out. The fact that my roommate (who I've been friends with for years) was basically making fun of me just kind of hurt my already vulnerable feelings.

Maybe I'll just start saying "No thanks. I'm not hungry" or something...I'm just kind of down today. I feel like I have 0 options when it comes to eating out and even when I do find something, I feel like I get a little sick anyway. I accidentally had a sip of beer last night and even that made my stomach angry. Ughhhh I'm just so frustrated.

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kittty    22

I say, "When I was diagnosed with celiac..." That way I'm not really lying because I was diagnosed - by myself. And if people take it to mean a DOCTOR diagnosed me, that's OK because they are more likely to take my disease seriously.

Exactly! If cutting out gluten from your diet improves your health, then you DO have a diagnosis. The diet reaction was all I needed to tell me it was celiac, and later I found out that it was good enough for my doctor too - even without a blood test or a biopsy. She is totally convinced after seeing the difference a gluten free diet has made.

This may sound weird, but your friend could actually be jealous that you have celiac. You have something that makes you different and interesting, and she may feel overshadowed by that. It's common for children to have that reaction, and sometimes adults too.

I've been gluten free for over five months now, but haven't yet visited my parents while gluten-free. They live very far away, but sooner or later I'll have to visit. When I was little my mom had this habit of trying to "cure" my bad reaction to some ingredients by hiding them in food, and tried to "cure" my motion sickness/vertigo by deliberately going for long drives until I was sick, and tried to "cure" my perfume induced headaches by deliberately wearing strong perfume. My mom is an avid baker too, and I'm already mentally preparing myself for the gluten war that will ensue... Mental preparation for the negative reaction from friends could be your greatest ally.

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Pegleg84    50

I still get excited when I see something gluten-free that I haven't been able to eat in a while. And if someone asks me about why I can't eat something, I try not to go on about it (I do go on about it, but I do try not to). I know my mother (also Celiac) would hardly talk about anything else for a while, which got kind of grating, but she's settled down since then.

I'm self-diagnosed, but my family history (it's on BOTH sides of my family. We're dropping like flies...) and the fact that I started feeling better in what, a week? (oh, and my nails got better too! They used to be all brittle and thin and slow-growing but now they're fine. That's my one bit of physical proof). If you're sure you have Celiac, or at least Gluten Intolerance, then you don't need a doctor to confirm it. (I more or less told my doctor that I had it. No arguments.)

But in the end, a diagnosis doesn't matter. Gluten makes you feel like crap. You want to avoid that at all costs. Cause it's better for you and your friends in the long run. (As I often say, if I get into the gluten, either it'll kill me or I'll kill someone else, whichever comes first).

Maybe you can give your roommate (and your friends and family) some good information on Celiac disease and the gluten free diet so they'll understand why you're doing it, what can hurt you, and that it will make you a healthier, happier person.

But I congratulate you for being tough and not getting that Oreo ice cream. We all have to be careful not to cave in to pressure.

So, keep it up!

Peg

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Jestgar    715

She laughed and looked at the guy working there and said "She thinks she can't have gluten. But she's self-diagnosed" and started laughing!

You look at the ice cream guy with a pained expression and say "Sorry about my friend. She won't believe that she's an @$$h*le until her psychiatrist tells her she is." Then order the gluten-free cone.

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catsmeow    42

You look at the ice cream guy with a pained expression and say "Sorry about my friend. She won't believe that she's an @$$h*le until her psychiatrist tells her she is." Then order the gluten-free cone.

BAHAHAHAHAHA...best answer!!!!!! Keeping it light, yet putting her friend in her place.

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IrishHeart    1,634

. An option would be just to order and eat the food without making a big deal out of it being gluten-free.

There are some people you can change, some you can't.

If she has a lease agreement and is stuck with a roommate, she may have to deal with the roommate, unlike a friend that you could avoid or de-friend.

Good advice, cyberprof.

You do not need to defend your choices to anyone.

You can explain yourself silly or come out with some good, snappy comebacks, (jess offered you a doozy!) but some people will always give you grief over it.

Blow them off and enjoy your good health.... and ice cream . :)

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frieze    114

You look at the ice cream guy with a pained expression and say "Sorry about my friend. She won't believe that she's an @$$h*le until her psychiatrist tells her she is." Then order the gluten-free cone.

and i bet you she won't do it again!!! Jus' settin' here, laughin' my butt off.....yeah jet!

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TheIntern    0

You guys rock. Thanks for making me feel so much better! I'm so happy to have found this forum and now I feel like I can justify my "diagnosis" to myself. I see and feel the changes - it shouldn't matter what other people think. Seriously, thanks so much :)

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AfterAll    0

With a friend like that, who needs enemies? No one needs to make you feel badly about something medical... self diagnosed, or not.

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