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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 Celiac.com's FREE weekly eNewsletter   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

My Doctor Is An Idiot..
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So I went to a specialist yesterday (he specializes in colonoscopys and endoscopys)to see whether or not I need an endoscopy, and other things.

So, before I start, this guy was a huge prick to me. Keep in mind that I'm at 16 year old teenage girl.. and the first thing he said to me was really not needed. I walked in with mum (he did her colonoscopy a few years ago) and he said "I see you're quite big, not skinny like your mother. Are you sure you have coeliac disease?"

I wanted to cry, no 16 year old needs to be told that by a DOCTOR. I've heard it all my life, so that put me in a bad mood! He kept bringing up my weight ( and let me tell you, I'm 5"10, of course I'm not going to be stick thin. But I'm nowhere near "obese" which is how he was referring to me the whole way through it!).

He told me I should have had the endoscopy done when i first got my blood test, and then he tried to blame that on my mum. How were we to know, when no one even told us?

And then I proceeded to tell him I've been having a gluten reaction for a week, and he said that it wasn't a gluten reaction, because eating gluten doesn't cause body aches. He also said that only skinny people can have coeliac disease.

He made me so frustrated and upset, I literally burst into tears after I left the room.

Cut a long story short. I'm not getting the endoscopy done because it seems pointless to my mum and I. My body tells me it doesn't like gluten, so I'm cool with that.

Sorry for this little rant!

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So I went to a specialist yesterday (he specializes in colonoscopys and endoscopys)to see whether or not I need an endoscopy, and other things.

So, before I start, this guy was a huge prick to me. Keep in mind that I'm at 16 year old teenage girl.. and the first thing he said to me was really not needed. I walked in with mum (he did her colonoscopy a few years ago) and he said "I see you're quite big, not skinny like your mother. Are you sure you have coeliac disease?"

I wanted to cry, no 16 year old needs to be told that by a DOCTOR. I've heard it all my life, so that put me in a bad mood! He kept bringing up my weight ( and let me tell you, I'm 5"10, of course I'm not going to be stick thin. But I'm nowhere near "obese" which is how he was referring to me the whole way through it!).

He told me I should have had the endoscopy done when i first got my blood test, and then he tried to blame that on my mum. How were we to know, when no one even told us?

And then I proceeded to tell him I've been having a gluten reaction for a week, and he said that it wasn't a gluten reaction, because eating gluten doesn't cause body aches. He also said that only skinny people can have coeliac disease.

He made me so frustrated and upset, I literally burst into tears after I left the room.

Cut a long story short. I'm not getting the endoscopy done because it seems pointless to my mum and I. My body tells me it doesn't like gluten, so I'm cool with that.

Sorry for this little rant!

Did you have a positive blood test? Maybe your regular doctor will diagnose you based on that & a good response to gluten free. The only reason you need an actual, on paper diagnosis is to force a college to feed you safely. Also, when you have kids, the family history (mom diagnosed) is sufficient to get your kids tested every few years.

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Did you have a positive blood test? Maybe your regular doctor will diagnose you based on that & a good response to gluten free. The only reason you need an actual, on paper diagnosis is to force a college to feed you safely. Also, when you have kids, the family history (mom diagnosed) is sufficient to get your kids tested every few years.

i had a positive blood test, and my dad's mum has dermatitis when she eats gluten

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I'm sorry you were treated that way. He was wrong.

I have a celiac friend who was very overweight and lost 60 pounds when she went gluten free. I am thin but not super skinny and lost 10 pounds randomly in the first week I was gluten free. I think fixing your diet will allow you to have the body you are supposed to have. If you're overweight perhaps you'll lose weight and if you're underweight you'll likely gain weight.

Also, severe body aches are my biggest and most painful symptom.

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I'm sorry you were treated that way. He was wrong.

I have a celiac friend who was very overweight and lost 60 pounds when she went gluten free. I am thin but not super skinny and lost 10 pounds randomly in the first week I was gluten free. I think fixing your diet will allow you to have the body you are supposed to have. If you're overweight perhaps you'll lose weight and if you're underweight you'll likely gain weight.

Also, severe body aches are my biggest and most painful symptom.

well i'm like your friend, i've lost alot of weight since going gluten free. he irritated me so much ahhh im still so mad about it!

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I'm sorry. :( He's a jerk.

And body aches are a HUGE issue for me. Don't worry about him. He's just wrong. By the way, I have had weight issues for years and in 3 months of going gluten free I've lost 30 pounds without trying. This stuff manifests itself in different ways with different people.

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I'm sorry. :( He's a jerk.

And body aches are a HUGE issue for me. Don't worry about him. He's just wrong. By the way, I have had weight issues for years and in 3 months of going gluten free I've lost 30 pounds without trying. This stuff manifests itself in different ways with different people.

that's what i said to him. and he was like no it only affects your bowel movements. and it only lasts for a day. he irritated me so much

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that's what i said to him. and he was like no it only affects your bowel movements. and it only lasts for a day. he irritated me so much

Courtney! Did you see my previous post? He's a jerk! That's all the time you need to give him!

If you want or need an official diagnosis..... See my suggestion, Hon.

Ps. I have 2 teen sons & skinny is not what is attractive. They like brains, personality & some curves.

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Courtney! Did you see my previous post? He's a jerk! That's all the time you need to give him!

If you want or need an official diagnosis..... See my suggestion, Hon.

Ps. I have 2 teen sons & skinny is not what is attractive. They like brains, personality & some curves.

I'm happy with my body telling me that it doesn't like gluten, thats enough for me :D

Thankyou so much for your support, it's made me alot happier!

But he sure is a jerk

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Oh my gosh! I'm so sorry :( I'd be beyond upset if someone treated me like that. I was only diagnosed with the blood test and after trying a small bowl of rice crispies a few months ago and then Cap'N Crunch a couple of days ago, thinking they may be safe, I've decided that an endoscopy is not a necessity! I would like to know if I'm just intolerant or do have the disease for health reason, but I'm not in any hurry to dish out so much money for it. Regardless of an official diagnosis, I feel better gluten-free and like you said, that's what matters! Better luck with doctors in the future!

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What a jerk !

I agree - body aches are big and if you look online the list of celiac symptom is huge ! This doc is obviously a hack - don't go back to him, if you need another specialist like him - ever - find a different one.

Sure, many celiacs are on the lean side but not all. I only know a few where I live but one is obese and one is average weight. Myself, I'm on the lean side but, as another poster wrote, not skinny lean.

Look after yourself - that's all that counts. Eat what you body tolerates - fortunately your mom is in the same boat & will be able to help you out a lot.

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I am so sorry! How rude of that doctor. My doctor likes to go on about my weight too. I think they have very little training in sensitivity! I'm not obese. I can usually wear a size 10 but my doctor goes on and on about my needing to get this weight off me. In fact on my copy of my last lab reports she stamped a reminder to diet and exercise for weight loss! This was after she praised me for my great cholesterol and blood sugar numbers! I know how bad it makes me feel at 33 when I'm well adjusted to my body shape, so it's definately unacceptible to treat a 16 year old that way! This doctor sounds like an all around idiot! I wouldn't trust anything he said about celiac or your size!!! For the record body aches are a major symptom of glutening for me too! It's very common and this is info he should know even from reading a fluff piece in a magazine let alone medical literature!

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so, he's a jerk, and an idiot.

at least you can leave the room, and chose not be around a jerk and an idiot.

think about it, he doesn't have that option; feel sorry 4 him.

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If it makes you feel better, I was skinny my entire life. When Celiac disease "started" around when I was 17 I literally jumped up from a lean 140-145lbs to 190lbs in a month. Keep in mind that I had NEVER weighed over 150lbs before that point. So I gained massive amounts of weight, at least for my size, when I got "sick".

Everyone around me thought I was taking something, I'm sure because I had completely changed within a month.

All the information outdated and erroneous information that says "gluten allergy", which causes celiac disease, only causes weight loss and malnutrition is exactly that. Bulls$#&. Celiac causes weight gain in many; for instance when the antibodies form many develop thyroid/pituitary disease and that alone can cause massive weight gain. It's literally one of the most common and understudied diseases, and now it's starting to come to the light that this may be the basis for all autoimmune diseases.

Anyway, I caught mine too late and I developed Sjogren's so a diagnosis is important. Find a better doctor and then there's still Enterolab, which was held in very high regard around here and I'm sure still is?, that does DNA testing and is very accurate run by Dr. Kenneth Fine. They check your stool for antibodies, which supposedly is a lot more accurate than blood tests, and also for DNA sequencing that indicates whether you have the gene. I had both genes.

I'd also stop with milk. I'm telling you, I love milk and I ate a "just gluten free diet" for a long time and the milk was DEFINITELY preventing me from being healed/causing additional damage. My casein antibodies were 3x higher than my antibodies to gluten, for instance.

I'm back down to 175lbs right now but I'm going grain/dairy free to see how things go.

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That was so mean of your doctor! Geez! I had joint pain, foot pain, stomach issues, even Pancreatitis, over many years of being misdiagnosed. I had been feeling better lately so I decided to wean gluten back into my diet! Guess what happened?! My feet began to throb in pain and my eyes have been burning a lot. So, that was proof enough for me to know that my diet is def impacting my aching body! I am back gluten-free now.. again

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That is so sad that people we trust in the medical world are still so "uneducated" when it comes to celiac and gluten sensitvities in general. My own personal story (of course with all the other gluten related effects on my body) also includes years of being overweight. Not obese just weighing more than I should have. I would contribute my stomach issues to the need to eat and would never feel full even afer just a short time of eating a large meal, hence the weight gain. After going gluten free I began to eat to live not live to eat and I feel better than I have in years and years but I am looking better also. I think it is important to focus on the great support we get from groups like this one.

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Man your doctor sounds like the doctor who said my mum couldn't be coeliac because she was 1 pound overweight!(YES only 1 pound) and because she ate oats in the morning (uncontaminated ones), i had just been diagnosed with coeliac disease then, she has now got a positive diagnosis. So i phoned up that doctor and let her know my thoughts, now im giving a speech to young med students about coeliac disease and will make the point that you dont have to be underweight to be a coeliac! I'l keep you in mind :)

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I also was considered too "overweight" to have gluten problems. I have struggled with weight issues, but that doesn't mean that you have to be thin. That's just ONE symptom. It can also cause some gain, because it's such an inconsistent diet. When I went off gluten I dropped four pant sizes, but my weight hasn't dropped by much. I feel much better, and now I have much more muscle strength. Body aches are a problem, so are headaches, and a "fogginess". I have experienced a lot of weird symptoms from gluten. It's not just bowel problems. Trust me, you're not wrong, you're not "obese", it's not all in your head. Go off gluten, once your testing is done, or even if you decide not to get a endoscopy or colonoscopy. If your blood test came back positive, you may want to try a week or 2 gluten free. There are a lot of misconceptions about celiac disease, but those shouldn't hold you back. You are in control of what you eat, and how you treat your body, not the doctor. Worry about your health first, before anything. It's what matters. Try baking. I am also 16, and I have found that making my own foods is a way to control what I put in my body, and to make sure that I love what I am eating. I learned to love salad, love lentils, love all of those glorious things. Try making wraps on romaine lettuce leaves or boston lettuce. They're great for school lunches. Some soup companies are okay. Campbell's soup (in Canada), has gluten free chicken rice soup. It even has a stamp on the label. I love putting that in a thermos for lunch. Find out how YOU love to personalize your food. Embrace it and it won't seem so hard.

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oh hun :( that had to suck. I hate people like that (and would seriously consider filling a complaint).

Before my diagnosis i was at 180lbs (eeek) and it was when i suddenly dropped 20 that a new doctor who examined me (went about 7 times at this point, was getting kinda po'd at doctors misdiagnosing me, and such), was very concerned about that drop and the fact that i nearly flew off my examination table when she checked out my stomach. It was only through her that i had even heard of Celiac in the first place, and at that time she considered it to be a long shot, but wanted to rule it out for 'just because' reasons. But, i'm glad she did. It was my diagnosis and i have been put on a path to fix the problem, as it were.

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