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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.

We Need To Start A Thread On Stupid Stuff Doctors Say!
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gatita    32

This thread is scary or hilarious, or both.

I just emailed my doc about a severe allergic reaction during my recent gluten challenge and also mentioned the constant, chronic diarrhea I've had since June. Another doc was filling in for mine, and today she wrote, "It sounds like you're getting better."

(*pulls hair out with both hands*) !!!!

Then she said to check in again when my regular doc is back in December. Sheeeeeesh!!

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mushroom    1,205

A lady on a different, unrelated forum just told me her nephew was diagnosed with 50% Celiac. :blink:

Did she say what the other 50% was? IBS maybe??

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GottaSki    459

Wow a quad - high fives all around!

50% made me snort my nettle tea - unfortunately it is more sad than funny.

Here's hoping we find a few more Hawkeyes and TJs rather than Frank Burns out there ;)

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bartfull    565

50%. That means the kid can have a sandwich made with one slice of Udi's and one slice of Wonderbread? Or maybe it means the kid only has celiac from the waist down? Celiac on Monday's, Wednesday's, Friday's, and from noon to midnight on Saturday's?

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IrishHeart    1,634

50%. That means the kid can have a sandwich made with one slice of Udi's and one slice of Wonderbread? Or maybe it means the kid only has celiac from the waist down? Celiac on Monday's, Wednesday's, Friday's, and from noon to midnight on Saturday's?

:lol: :lol: Barty made me snort my nettle tea too.

OK nowwww I get the Frank Burns thing... doh!

....and....she's got it!! ;)

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bartfull    565

Wow a quad - high fives all around!

50% made me snort my nettle tea - unfortunately it is more sad than funny.

Here's hoping we find a few more Hawkeyes and TJs rather than Frank Burns out there ;)

OK, I was waithing for someone else to chime in, but I guess they didn't notice. GottaSki (and the rest of you) must be suffering from glutenhead right now ;) because she forgot - it's BJ, not TJ.

Sorry, I just had to say it. :lol:

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GottaSki    459

Nope...Trapper John was on duty before BJ - although I am a touch froggy today ;)

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bartfull    565

Oooh! I forgot all about him! I guess I'M the one with glutenhead! :blink::lol:

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IrishHeart    1,634

Nope...Trapper John was on duty before BJ - although I am a touch froggy today ;)

TrapperJohn is correct....

Oooh! I forgot all about him! I guess I'M the one with glutenhead! :blink::lol:

nope, not at all hon.....BJ was the obvious thought.

and I liked him more that trapper anyway. :lol:

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I can't stand it when a doctor doesn't listen. The doctor-before-last let me ramble on about my problems, and didn't take in a word of it.

Doc "How have you been feeling?"

Me "Well, I have diarrhea every single day, my migraines are getting more frequent, and the anxiety is still crippling. I've tried everything I can think of to help the anxiety, but still get no relief."

Doc "Oh okay" (looks at paperwork) "And how has your anxiety been?"

DOH!!! :angry:

Her solution to my textbook GI symptoms was to lose weight. All my medical problems would be solved by losing just a few pounds. So she prescribed Phentermine, and called it "A Magic Pill". After a single dose I thought my heart would explode, and I couldn't sleep for a week. Who is training these idiots??

THIS - who teaches them to look at the paperwork and not at the patient?

Non-celiac related, but:

"I don't know what's happening, I'm losing weight, I'm 82 lbs, I sleep about 3-4 hours per night, everything I eat gives me diarrhea, especially baked items, I break out in blotches when I eat cheese/butter, and I am constantly jittery."

"Do you exercise?"

"Why, yes, always have. I do ballet classes and walk every day."

"You're very skinny. You have an ED."

:blink:

Note #1: I have a palsied arm because of a birth f***ing trauma, and if I don't exercise I'm basically disabled.

Note #2: my medical history said "autoimmunity in the family, mother's side" and "grandmother in lifelong therapy for thyroid nodules"

Note #3: it is turning out that every family member on my mother's side has some wheat-related problem and GI symptoms, but none has been diagnosed with gluten intolerance?

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TGK112    7

Dumb things doctors say-

It was a bone specialist who had me tested for celiac. When it came back positive, he referred me to a GI for an endoscopy. When I told this to my primary care physician - she responded, saying that I have a high anti-body count - that I should just go gluten free and not to bother with the endoscopy. When I explained that the first doctor wanted to see if it is celiac, to know if celiac was contributing to my osteoporosis - she responded " I don't agree. Celiac and osteoporosis have nothing to do with one another"

At that point I had already read enough to know that she was WRONG!!

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Pegleg84    50

Well, I think I have finally have something to add.

So, I saw a GI for the first time on Friday (only 4 years into this thing), mostly because I've been having other issues lately and wanted to make sure it's nothing more serious. (I recently had my first endoscopy/biopsy as well, which was of course negative for celiac, having been gluten-free for 3.5 years, but did show some mild gastritis that I don't know has healed or gotten worse or what)

After a debaucle with my referral, and waiting 2 hours for my appoitment (so much for all the work I was going to do that day), i finally got in and he had my referral letter and all was good.

So, Celiac eh? Actually, he was really nice, and had good textbook knowledge of the disease, but didn't seem to get the fact that I have considered myself Celiac (diagnosis or no) for the past 4 years and have been as strictly gluten-free as possible without becoming a complete anti-socialite. I do not cheat. For me, "accidental getting into something" does not mean giving in and having a piece of pizza. It means eating something I didn't know was ccd

GI (paraphrasing): "Well, the problem is that since you didn't do a biopsy in the first place, there's really no way we can monitor it. Of course, maybe someday you'll be on vacation and not sticking to your diet and eating gluten for a few days, and we could get you straight in to do a biopsy then."

Me (more or less): "Ahh, Doc, that ain't going to happen."

And besides, he should know that you have to be eating a gluteny rich diet for a good month before a reliable test can be taken. And I'd be dead by then.

Aside from that, he didn't seem particualry concerned about the gastritis thing, which I'm pretty sure still hasn't healed up completely.

So, it looks like I'll be GI shopping. Anyone know someone good in Toronto?

Oh well. I got half a hat knit in the waiting room, and he was kinda hot, so I didn't completely loose out...

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IrishHeart    1,634

Oh well. I got half a hat knit in the waiting room, and he was kinda hot, so I didn't completely loose out...

Peg, dear girl---cheers for seeing the bright side of life!!! ;)

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I've had who knows how many specialists before finding out I had Celiac. After my first doctor tested me for two years for various things he told me (I was 17 or 18) I have done every test in the book and cannot find anything wrong with you. As far as I know it's a mystery why you're so sick. Get out of my office. I don't want to see you again. I can't do anything for you.

He started testing me when I was 16 I think and come to find out there was a load more tests he could have run. He never even checked my gallbladder or for Celiac Disease or for Crohns or Colitis. According to him I was a mystery and there was nothing wrong with me.

I had my gallbladder removed two years later b/c the next doctor I went to decided to do a Hida Scan and tell me my gallbladder is severly damaged and doing no good for my body. My gallbladder with no gallstones was causing my pain. I was still in excrutiating pain after that. I did see that my gallbaldder was damaged.

The doctor I had after that went to touch my stomach but pulled my shirt up over my boobs and started touching where he shouldn't have. Never went back.

The doctor after that didn't test me for celiac, just told me if it makes you sick don't eat it. You probably have celiac disease.

The next doctor, I thought would be better b/c she was a woman. She looked at me and said, "you are under weight, you need to eat." before she weighed me. She spent most of the visit telling me how I needed to eat more. She finally did a test for celiac, I was still eating gluten free. The test came back negative. I had been off of gluten of course it will come back negative. She said, "even though you are 100% gluten free the test would still show that you have traces of gluten or damage to your intestines.

Where do these doctors get their degrees?

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foam    16

I have 100 stories about stupid things I've been told over last 20 years of being sick but recently I heard something else and so I'll tell you the smartest thing a doctor has ever said. My current Doctor said to me.. I really don't know what is wrong with you, but you do know about permeable gut?. He then said, you have to realise I did all my training in the 60's and none of this existed then and you really need to go and see a specialist that knows more than the average GP.

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frieze    114

I have 100 stories about stupid things I've been told over last 20 years of being sick but recently I heard something else and so I'll tell you the smartest thing a doctor has ever said. My current Doctor said to me.. I really don't know what is wrong with you, but you do know about permeable gut?. He then said, you have to realise I did all my training in the 60's and none of this existed then and you really need to go and see a specialist that knows more than the average GP.

A doc without an ego problem!  lucky for me i was sitting down......

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cavernio    9

Not a stupid thing doctors say, but maybe? I'm really bothered by it and I just need to vent anyways.

 

So I had my second biopsy yesterday and I was drugged up and this is what I remember. Vomitting fluid a bit (I drank water after I washed my hands a few hours before procedure, I shouldn't have but it was automatic and I hadn't even realized I had done so until I noticed my mouth was warm from the warm water I drank), people telling me to relaxed, forward in time to me being wheeled back to the bed area and the doctor saying "You think I'm stupid". I said "I didn't say you were stupid". While walking away he said "No, but you were thinking it", and I said "I don't think you're stupid" but he might not have heard that because I think I was being quiet and he had gone too far away.

 

The thing is I don't think that doctor's stupid. Far from it. He's the only doctor I've seen in well over a decade who I feel didn't ignore me or gloss over concerns the only meeting I had with him 7 months ago. And yeah, I grilled him because I wanted to know everything and I brought references to research I wanted to know about, and I'm sure it took more than the allotted time a patient usually has. No, I don't think he's up about all the current celiac research, but that doesn't make me think he's stupid.

That said, there are some doctors I've met who I think are stupid, but generally I think most doctors and very smart but they hardly give me the time of day so they don't do their job right. And I know that I can come off as arrogant, but I honestly have no idea what I did or said to make him think that I thought he was stupid, I hardly said anything before the procedure. He asked if I was following the diet well and I said yes and he seemed dubious but I didn't feel like could go into detail right there, that's what my meeting with him is for, but I did mange to tel him that I feel like I'm not getting better fast enough and he assured me that it hasn't been very long and I've had celiac disease my entire life. I suppose I'm not sure I've had it my entire life, so maybe I said something about that when I was out?

 

This is really bothering me, and I didn't get a chance to talk to him afterwards then and there, and now I'm really worried about the follow-up meeting I'll have with him. I cried waiting for the drugs to wear off because I didn't want to hurt his feelings and also because I don't understand how, when I'm drugged up for like 10 min most of which I've got a tube in my throat, I could possibly make someone think they're stupid. Why do people read me so wrong all the time? Was it my previous appointment? I did see on the sheet that I he wrote duodenum healing, so that's good, so maybe he told me what when I was out and I said something like I wasn't feeling better so that's wrong or something???

 

I probably won't even have time to get into that when I see him to go over results, there's so little time and obviously I want to discuss my progress, not our relationship. This really sucks :-(

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gatita    32

Not a stupid thing doctors say, but maybe? I'm really bothered by it and I just need to vent anyways.

 

So I had my second biopsy yesterday and I was drugged up and this is what I remember. Vomitting fluid a bit (I drank water after I washed my hands a few hours before procedure, I shouldn't have but it was automatic and I hadn't even realized I had done so until I noticed my mouth was warm from the warm water I drank), people telling me to relaxed, forward in time to me being wheeled back to the bed area and the doctor saying "You think I'm stupid". I said "I didn't say you were stupid". While walking away he said "No, but you were thinking it", and I said "I don't think you're stupid" but he might not have heard that because I think I was being quiet and he had gone too far away.

 

The thing is I don't think that doctor's stupid. Far from it. He's the only doctor I've seen in well over a decade who I feel didn't ignore me or gloss over concerns the only meeting I had with him 7 months ago. And yeah, I grilled him because I wanted to know everything and I brought references to research I wanted to know about, and I'm sure it took more than the allotted time a patient usually has. No, I don't think he's up about all the current celiac research, but that doesn't make me think he's stupid.

That said, there are some doctors I've met who I think are stupid, but generally I think most doctors and very smart but they hardly give me the time of day so they don't do their job right. And I know that I can come off as arrogant, but I honestly have no idea what I did or said to make him think that I thought he was stupid, I hardly said anything before the procedure. He asked if I was following the diet well and I said yes and he seemed dubious but I didn't feel like could go into detail right there, that's what my meeting with him is for, but I did mange to tel him that I feel like I'm not getting better fast enough and he assured me that it hasn't been very long and I've had celiac disease my entire life. I suppose I'm not sure I've had it my entire life, so maybe I said something about that when I was out?

 

This is really bothering me, and I didn't get a chance to talk to him afterwards then and there, and now I'm really worried about the follow-up meeting I'll have with him. I cried waiting for the drugs to wear off because I didn't want to hurt his feelings and also because I don't understand how, when I'm drugged up for like 10 min most of which I've got a tube in my throat, I could possibly make someone think they're stupid. Why do people read me so wrong all the time? Was it my previous appointment? I did see on the sheet that I he wrote duodenum healing, so that's good, so maybe he told me what when I was out and I said something like I wasn't feeling better so that's wrong or something???

 

I probably won't even have time to get into that when I see him to go over results, there's so little time and obviously I want to discuss my progress, not our relationship. This really sucks :-(

 

 

Oh honey, try not to worry too much. If it were me, I'd get him a quick note, email or phone message mentioning in a friendly way that you recall some strange bits of conversation and just want to clarify that you respect him and are grateful for his abilities. You can use the pretext of thanking him for conducting a safe procedure. Then he'll know but you don't have to spend your whole appointment talking about it.

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TNfarmgirl    0

Oh brother!  I have been recently diagnosed through endoscopy and biopsy.  All of the symptoms I had - brain fog, migraines, stiff joints, etc have an explanation.  My diagnosis was curt and by phone by one of the Dr's office workers.  "Your biopsy results are back, you have Celiac Disease.  Quit eating gluten and we'll see you in 4 weeks."  I make the follow-up appointment and my blood is tested - I am supposing for being glutened.  The only advise I receive is a packet of xeroxed handouts with websites to go to.   When I asked the nurse about recommendations for seeing a dietitian, "That's your job, honey, not ours".  "You have to ask for it."  

 

I wonder how often one is diagnosed with cancer and is given the diagnosis, given handouts or told to "go check the internet".  

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