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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.

Ok Im Totally Done W/ My Family
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jasonD2    11

I spent 5 days with them and received nothing but constant ball busting about my dietary issues. My uncle thinks i have OCD and said i need to talk to someone..my aunt is very accomodating but whenever i discuss health issues her response is "oh please jason, your grandparents lived to their 90s and you cant worry about this all the time" Meantime my cousin has chronic bloating, IBS and gas and drinks like a fish and they say nothing about that. I'm sure they are right on some level...having health issues can cause people to be a bit OCD..especially if they are predisposed and yes life is short and you cant worry about everything all the time, but if I chose to live and eat certain way why cant people just accept it? At least I still eat out all the time..if i chose to just eat at home i can only imagine the grief I would get.

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luvs2eat    60

I guess we DO all become a little OCD w/ our gluten free issues... we sort of have to be, don't we? Maybe you should leave off telling family members about their health issues, especially since they don't seem to appreciate your interest and efforts. Just live your own healthy gluten-free lifestyle and let them do their own thing! I have an extremely overweight friend w/ all the health issues that can bring... diabetes, high cholesterol and triglycerides... and I can only serve healthy and nutritious meals when she visits and can't keep harping on what she KNOWS... that smaller portions of healthy food would solve her problems if she'd commit to doing it for like a YEAR rather than a month and then saying diets don't work!!

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jasonD2    11

Thats frustrating. And people wonder why diabetes and heart disease are an epidemic in this country. Everyone wants to eat and take quick fixes but refuse to change their lifestyles

If i had an actual celiac diagnosis maybe my family would be more supportive. guess its my fault..maybe i shoulda just told them i had it so they would be more supportive and get off my case :)

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luvs2eat    60

Thats frustrating. And people wonder why diabetes and heart disease are an epidemic in this country. Everyone wants to eat and take quick fixes but refuse to change their lifestyles

If i had an actual celiac diagnosis maybe my family would be more supportive. guess its my fault..maybe i shoulda just told them i had it so they would be more supportive and get off my case :)

Even without a formal diagnosis... if eating a gluten-free diet makes you feel better... it should be a done deal!! What if you wanted to eat a vegan diet? Or the SCD? I guess it only becomes a problem if/when you expect anyone else to cater to you or to "do as you do." Keep to your gluten-free diet, bring your own food, let them do what they do and just enjoy their company!

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Kay DH    41

You can only help people that want to help themselves, and for some people that only means extra helpings of food. Try not to let your family irk you too much because there isn't much you can do about it. Perhaps some day they will understand, but probably not. I think all of us are focused on what we eat. If other people got sick when they ate a bread crumb or hidden gluten, then they would be vigilant, too. Most folks out there don't realize how food influences our health, social lives, and life in general. :)

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Kay DH    41

Regarding diagnoses, I have HLA-DQ8, feel great gluten-free, and get sick when I get glutened. My celiac panel blood test was negative (after gluten-free) and the GI only took 1 endoscopy biopsy, which was negative. He only had me on the gluten challenge for a week and dismissed me as having celiac and instead decided I have diverticulitis. Needless to say there were no diverticuli to be inflamed, and I didn't get any diagnosis regarding gluten. My GP just said maybe I have a wheat allergy (negative) or gluten intolerance (she meant sensitivity). So, I'm not impressed by doctors. Unless they come up with a diagnostic test that doesn't involve us poisoning ourselves, I'll never have a formal diagnosis of celiac.

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jasonD2    11

I have DQ8 also - what are your symptoms? I still dont know when i get glutened since i have sensitivities to so many foods but I always suspected that tingling in my legs or colon spasms are caused by gluten..but again not sure. Ive been scoped from top to bottom and had the pillcam and everything is clean but this is after being gluten free for a while

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jststric    13

My inlaws and my mother TRY to understand but you can tell they don't. I think they view this stuff as "new" or trendy. Little do they understand that people have been misdiagnosed with a menagerie of illnesses for years, incorrectly. I have also found that most older people just can't change how they think/believe. Let them be. Do what you need to do for yourself and move on. Personally, I don't see a huge need for an official Celiac diagnosis. I gave up on doctors early in the game, but after going to a few and finding no answers. If there's no "cure" or medicine to help the situation and simply following a certain diet is the only thing we can do for ourselves....whether we are "official" or not, then what's the point of having an official diagnosis?? Imo...there's no point.

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sa1937    324

I spent 5 days with them and received nothing but constant ball busting about my dietary issues. My uncle thinks i have OCD and said i need to talk to someone..my aunt is very accomodating but whenever i discuss health issues her response is "oh please jason, your grandparents lived to their 90s and you cant worry about this all the time" Meantime my cousin has chronic bloating, IBS and gas and drinks like a fish and they say nothing about that. I'm sure they are right on some level...having health issues can cause people to be a bit OCD..especially if they are predisposed and yes life is short and you cant worry about everything all the time, but if I chose to live and eat certain way why cant people just accept it? At least I still eat out all the time..if i chose to just eat at home i can only imagine the grief I would get.

I have a friend who's told me, "Not everyone is as OCD as you are." I told her if she lived in the bathroom as much as I had, she'd be careful as to what she ate, too. End of discussion. I've also gotten the "a little bit won't hurt you...so-and-so used to". Blah, blah, blah.

My mom did live to be over 94 and I'm sure she had undiagnosed celiac. While her symptoms were opposite of mine (extreme constipation and bloating...looked 6 months pregnant all the time), I am convinced (knowing what I know now) that she had celiac. She was seeing a GI doc but no one ever mentioned celiac as a possible cause. Instead she spent a number of her last years on this earth feeling totally miserable.

I did go for the full diagnosis (celiac panel, EGD/biopsy) as I felt sure my daughter also has celiac and I wanted her to take it seriously. I fully expected her DGP test to come back false negative since she ate gluten-free much of the time. I was totally surprised that it came back highly positive. She went straight gluten-free and said to hell with the EGD/biopsy. Had I known that, I'd have skipped it, too.

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Kay DH    41

I have DQ8 also - what are your symptoms? I still dont know when i get glutened since i have sensitivities to so many foods but I always suspected that tingling in my legs or colon spasms are caused by gluten..but again not sure. Ive been scoped from top to bottom and had the pillcam and everything is clean but this is after being gluten free for a while

My symptoms started a year ago September, after getting the flu. Before this, I had low thyroid and vitamin D, and have the HLA-B27 gene (for Reiters arthritis), but no obvious symptoms (stress "obvious" because there were probably skin rash, GERD, and other symptoms). If I get mild cc then my GI tract turns into a high speed rail system, sometimes D and sometimes just a massive volume of goo. Symptoms with greater cc can include lethargy, brain fog, stiff joints, muscle aches, skin rash, D, C, bloating, cramps, mood swings, and irregular heartbeat. Other than those, not many symptoms ;) . Symptoms go away 3-5 days after glutening. There are a lot of symptoms that can be associated with celiac and gluten sensitivity, including your tingling. I have a coworker that is very short and slight even though he eats an amazing volume of food, appears to be strong and healthy, but says he has tinnitis and tingling in his arms when he eats wheat (he's never been tested and never heard of celiac). The real test is how you feel off gluten, and how you feel when you eat it. When people press me on why I am so anal about the nasty proteins, I just tell them that I get sick when I eat it. My GP didn't give me a celiac diagnosis because my blood and endoscopy results were negative, but she did send me an email stating I shouldn't eat gluten because of allergy or intolerance. Perhaps if you spoke with your doctor he/she could give you some ammunition regarding gluten. This can be hard, of course, since most doctors know almost nothing about celiac, gluten sensitivity, or allergies. :)

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jerseyangel    409

I have certain family members who think I'm obsessive--luckily they live in another state so I don't see them much but it still hurts that they don't even try to understand....especially seeing how sick I was for so long and all....

But I decided that I would not utter a word about my food issues or my health at all--if asked, I say "I'm fine", smile and change the subject. I bring all of my own food with me--I never have to ask about anything--I just microwave what I have or whatever I need to do.

I realized that it didn't matter what I said, some people are just gonna feel the way they feel but at least I have control over the way I come across and instead of coming away angry and hurt I'm proud of the way I handle it. It helps ;)

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cassP    175

kay & jason-

arent our genetics so interesting??? i wish they would give us our genetic map when we're a kid. in Italy- they test you as a baby for Celiac genes, then you can eat accordingly &/or follow up to see if you're developing it. i wish they did it here- if so, i could have avoided gluten for most of my life and would be free of some of the permanent issues i have now :(

it is frustrating when people negate you. and also i have to bite my tongue so much when people tell me their health issues (im an LMT, not a doc, so i cant give out my health opinions ethically). so ya, i cannot tell you how many clients i have that might benefit from eating a healthy gluten-free diet but i cant blab. annoying.

it's also incredibly frustrating that i cant get my parents to get tested- they just keep brushing it off :(

i really think my Dad has it- and i dont want him to slip into dementia like both of his parents did :(

oh- also PS- its so tempting sometimes when people give me crap about the way i eat to just launch into TMI- like exactly what happens in the bathroom- even stuff ive been too embarrassed to say on here or to my doctors

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tarnalberry    314

Jason, what is your response to them? Are you talking with them about it? Are you leaving the conversation open? Are you confronting them on their repeated rudeness? Are you making it clear that you do not care about their opinions on your decision in this regard? There comes a point at which you have to say - out loud, to the offending person - "This topic is no longer up for debate." And then do NOT respond to their further comments. Change the subject or just plain 'ol ignore the comments as if the person hasn't spoken.

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gabby    12

Just wanted to add my 2 cents:

there's a big difference between OCD and being very disciplined. I consider myself extremely disciplined with my food and my environment. And this discipline is a source of pride, not shame.

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Kimbalou    17

jason, maybe you hsould just tell them you tesetd positive for Celiac recently...would they ever know the difference? lol.

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windee    0

I had my sister more or less tell me today allot of these things are peoples minds. Meaning me of course. That hurt but what can I do? I have to take care of myself and go on.

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Bella001    3

I spent 5 days with them and received nothing but constant ball busting about my dietary issues. My uncle thinks i have OCD and said i need to talk to someone..my aunt is very accommodating but whenever i discuss health issues her response is "oh please Jason, your grandparents lived to their 90s and you cant worry about this all the time" Meantime my cousin has chronic bloating, IBS and gas and drinks like a fish and they say nothing about that. I'm sure they are right on some level...having health issues can cause people to be a bit OCD..especially if they are predisposed and yes life is short and you cant worry about everything all the time, but if I chose to live and eat certain way why cant people just accept it? At least I still eat out all the time..if i chose to just eat at home i can only imagine the grief I would get.

I'm sorry! Some people get it and others never will. I was at a friends house for Thanksgiving and she and her Mother went out of their way to repeat 25 times to me that the spinach and cheese puffs were gluten free....puffs being the key word here. Most people haven't heard of gluten and if they have they have zero concept as to what it is let alone understanding how sick it makes some of us. I also have a nut allergy and people are a little better at that but again, not everybody. My Aunt was looking for glucose free stuff to send me for my birthday and my Mom had to correct her....it's never easy is it?

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Bella001    3

I had my sister more or less tell me today allot of these things are peoples minds. Meaning me of course. That hurt but what can I do? I have to take care of myself and go on.

I've had friends make comments that pretty much were along the lines of oh boy, what now? Since it took me over 10 yrs to figure out what was wrong with me, I went through many different ideas of what it may have been....once I went gluten-free it was obvious within 3 days that was my problem all along. I know my Mom has it and she will not go gluten-free. Guess she would rather takes meds and be in pain everyday rather than putting down the donuts!

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cap6    85

my therapist gave me 100% permission to be as OCD about celiac as I need to be - I just can't be so OCD about housework. lol Sometimes I get a little tired of being quite so compulsive about the diet but I know that if I relax just a little it would be too easy to get sloppy - and then I'll be sorry!

I really believe that my Mom was celiac. She had all the DH rash, was diabetic, fibromyaligia, diverticulois, bruising and..... My brother won't listen to me, just brushes me off. Families!

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