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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.

Top Five Reasons To Get A New Doctor
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184 posts in this topic

This is a great thread! Thanks for the laughs...

Here's a couple:

You go to the G.P. to look at a very red, sore fistula in your mouth, and he goes, "Wow! You should have somebody look at that!" (Then he hands you a referral slip to an Ear, Nose, Throat doc, saying "I think we both want to rule out cancer." You instead head straight to your dentist, who tells you that you need a root canal--which proves to be the case. [How can a G.P. not know about an oral fistula?])

Or this one (same G.P. doc):

After telling him for years that I'm having relentless G.I. problems and right flank pain and that I'm thinking I might have Celiac disease and have gone off Gluten, he smirks and says, "Yeah, a lot of people think that after they surf the Internet..." Then, when I press him to include the Celiac Panel in my blood tests, and some of the numbers come back elevated, he goes, "You might want to avoid flour." ?! I remind him I've been off gluten, for the most part, for several years and ask "Does the elevated IgA refer strictly to gluten, or does it mean I have a lot of antibodies circulating in my blood?", and he goes, "That's a good question. I don't know."

This, and other reasons, have FINALLY prodded me to make an appointment with somebody else and we'll find out this coming week if SHE is any better than HE has been! (FINGERS CROSSED!)

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Oh, forgot to mention this one:

When you go in to Imaging Center for a mammogram, and the radiologist looks at your bare breasts and goes "Nice," with a sick grin on his face (and a thing hanging out of his nose)!!!

--This really happened! And every time hence have always specified, "DO NOT LET DR. ____ ANYWHERE NEAR ME OR MY TESTS!"

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And then there's this one...

Go in to doc (different GP) with severe Acute Pancreatitis of almost two weeks' duration, high fever, nausea, severe pain, incredible odorous diarrhea in technicolors of black & yellow hues, fatigue, even itchy cellulitis... and (male) Dr. surmises "You may have issues about aging."

Right! (The only time I've seen him since that brilliant diagnosis was when I nearly ran him down in the parking lot, out of sheer disgust... Good thing my Impulse Control was "ON" that day...)

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And then there's this one...

"You may have issues about aging."

One would hope he ages in the way you described :o

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Youngest DD went to her GI w/ research she'd done in the internet... desparate to find an answer to her symptoms that being extremely carefully gluten-free weren't solving at all. He saw her papers and said, "Oh great... you've been on the internet. Why don't YOU tell ME what's wrong w/ you?"

DD burst into tears and told him she was just trying to find ANY answers for her debilitating symptoms.

She never saw him again and sent him a scathing letter about his crappy "bedside" manner!

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Youngest DD went to her GI w/ research she'd done in the internet... desparate to find an answer to her symptoms that being extremely carefully gluten-free weren't solving at all. He saw her papers and said, "Oh great... you've been on the internet. Why don't YOU tell ME what's wrong w/ you?"

DD burst into tears and told him she was just trying to find ANY answers for her debilitating symptoms.

She never saw him again and sent him a scathing letter about his crappy "bedside" manner!

Good for her! More doctors need to be lambasted about their "crappy bedside manner"--not to mention their disdain for patients, their thin-skinned "professional jealousy" ("I'M THE DOCTOR HERE, NOT YOU" attitude), and their all-too-frequent lack of essential medical knowledge.

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Forgot this one:

I describe recent Atrial Fibrillation to G.P. doctor and he goes, "That's not atrial fibrillation!" and proceeds to hammer me with "There's absolutely nothing wrong with your heart. There may be a psychological component..." I insist on a heart monitor test, and on the first or second night of wearing it, my heart goes into Atrial-fib at a rate of over 200 beats per minute and keeps this up all night long...

--Sorry, there wasn't any way I could make that little encounter "funny"!

(Will find out later this week, after I see a Cardio specialist, what if anything needs to be "done" about my so-called "psychological" A-fib!)

In the meantime, to the G.P.: 'YOU'RE FIRED.'

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Reading all these responses leave me flabbergasted! My doctor was SOOO nice and really well informed. My symptoms were unrelenting diarrhea and a hugely noisy tummy... I used to say it sounded like wolverines were fighting their way out!! I had no pain or any other symptoms.

He tested me for parasites, put me on a course of medicine for that, and scheduled blood work and a colonoscopy (cause I was 49 and it was a good time for an initial screening).

After the colonoscopy, he came to me w/ the bloodwork and said, "I have good news and bad news."

The good news was that he said he knew how to stop my diarrhea/tummy wolverines. The bad news was that I had celiac disease and could never eat wheat, etc. etc. again.

Done and Done. I consider myself so lucky!!

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Reading all these responses leave me flabbergasted! My doctor was SOOO nice and really well informed. My symptoms were unrelenting diarrhea and a hugely noisy tummy... I used to say it sounded like wolverines were fighting their way out!! I had no pain or any other symptoms.

He tested me for parasites, put me on a course of medicine for that, and scheduled blood work and a colonoscopy (cause I was 49 and it was a good time for an initial screening).

After the colonoscopy, he came to me w/ the bloodwork and said, "I have good news and bad news."

The good news was that he said he knew how to stop my diarrhea/tummy wolverines. The bad news was that I had celiac disease and could never eat wheat, etc. etc. again.

Done and Done. I consider myself so lucky!!

I am soooooo jealous. B)

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Had my first ridiculous doctor moment today.

Dr: "I was told this was an emergency appointment, this doesn't seem like an emergency appointment!"

So I blurt out "I'M BLEEDING WHEN I GO TO THE LOO!"

Dr: "Oh... this seems like an emergency appointment!"

And then after looking through my negative blood results and asking about all of my symptoms : "Well, you seem to have a lot of the symptoms" - NEVER!

And after mentioning my cousin was diagnosed recently, and asking about it being genetic... "Well, there's always a possibility..."

And to top it all off

Dr: "Well, there's nothing I can do, I'll refer you to someone"

Me: "Who?"

Dr: "I'm not sure yet, but I'm sure I'll think of someone..."

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The nurse repeatedly says to the phsycian, "Oh, my she's so skinny. Can you believe how skinny she is?"

(I'm almost in tears.)

The physician replies, "She's fine."

2nd this one. I just had to go to the ER for my symptoms yesterday and was told by 4 different people in the hospital how skinny I was. NO SH** MY INTESTINES AREN'T WORKING. And then I explain what happens when I eat gluten and get eyerolls. Please..

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This thread is heart-breaking and scary.

I just changed doctors today. :)

My hubs is healthy as a horse so his GP is more of a stand-by for the annual physical than anything else. Little did we know that was literally true for his abilities/office. Ugh. I've always been sickly, and in the five years we've been married I've been in and out of that office for stomach problems, headaches, and allergies, mostly. The receptionist refuses to let you speak to the doctor or nurse, and only ever insists we're busy, make an appointment. And cuts you off mid-sentence to put you on hold, and then says, we'll have to call you back. (Call-back rate maybe 50%). The doctor himself listens with half an ear, never sends for tests, but is very good at writing scripts and telling you to come back in two weeks. The common diagnosis for ALL your problems (minus the allergies and asthma, those are real)? STRESS.

Also, he diagnosed me GERD and gave me a prescription that didn't help but never re-visited the problem.

However, the thing that made me not want to go to him from the start (maybe he could tell?) is this: it's a private practice and the doctor let his dog wander around the entire office. Because it cheers people. WHAT?! I KNOW that can be therapeutic, but you're a doctor's office. People could be coming to you for allergies to dog fur and who knows what else. Keep him in a designated area, for pete's sake!

So after trying to have a celiac panel ordered and being completely not listened to and dismissed, I finally said enough. I have an appointment next week with an office I think I'll like, and with a specialist in late Oct, so hopefully things will get moving (no pun intended, as C is my major symptom) and they'll go well from now on and I won't have any more stories.

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Practitioner 1 presses on your belly, about 2 inches Southwest of your belly button and tells you: "That's your uterus"

Practitioner 2 (because you have already fired practitioner no. 1 for failing basic anatomy) presses 2 inches south of your belly button and tells you: "That's your aorta"

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Right! (The only time I've seen him since that brilliant diagnosis was when I nearly ran him down in the parking lot, out of sheer disgust... Good thing my Impulse Control was "ON" that day...)

Can I just tell you how much this made me smile? :) Thank you.

I am actually flying out to the Health Now Clinic in California (I live in Wisconsin) along with my husband and a very good friend because we all just got sick of playing the incompetence game. They seem to know what they are doing and it is better then spending a kagillion dollars and wasting time on docs and tests that are worthless.

At least that is my hope...and hope is something that previous docs had taken from me so I'm happy to see a glimmer of it again.

How about, "Your thyroid is swollen." After getting a very expensive ultrasound done because my thyroid was swollen.

Me: "Yeah...I know that but now what? What do we do about it, why is it swollen?"

Never did get an answer, until going off gluten.

The Internet has been ten times the doc I've ever had. Instead of embracing it they are choosing to be jealous of it. Green is an ugly color on a doctor. Very ugly indeed.

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Oh, forgot to mention this one:

When you go in to Imaging Center for a mammogram, and the radiologist looks at your bare breasts and goes "Nice," with a sick grin on his face (and a thing hanging out of his nose)!!!

--This really happened! And every time hence have always specified, "DO NOT LET DR. ____ ANYWHERE NEAR ME OR MY TESTS!"

As a health professional, this sickens me. I am sorry this happened to you. He was completely out of line with that comment.

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As a health professional, this sickens me. I am sorry this happened to you. He was completely out of line with that comment.

AGREED. Actually, this thread is really sad. I tried to read all the way through but it just made me sad so I stopped. I hate bad doctor stories. Sometimes I wonder how these idiots ever made it through med school. Maybe the 45 hours of standardized testing that comprise MCAT and USMLE Steps 1-3 filter out the sane, nice people and allow the idiotic jerks who are good at choosing multiple-choice answers to get through.

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"Oh here lemme give you a medicine to force your period to come." At this point, she was telling me this over the phone without having seen me. And the medicine could be very hazardous to an unborn child. So I went and of my own accord to have a blood test done to verify before I took the meds.

A few months before, "I never even suspected it was a possibility." When referring to my miscarriage. *headsmack*

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AGREED. Actually, this thread is really sad. I tried to read all the way through but it just made me sad so I stopped. I hate bad doctor stories. Sometimes I wonder how these idiots ever made it through med school. Maybe the 45 hours of standardized testing that comprise MCAT and USMLE Steps 1-3 filter out the sane, nice people and allow the idiotic jerks who are good at choosing multiple-choice answers to get through.

How bout when you're diagnosed after being bedridden for 6 weeks with the big D and your new GI does all the tests and they come back positive for Celiac. You move to a new state literally the day after your GI gives you all of your test results. She wants you to have a capsule endoscopy as soon as you find a new GI. Your new GI thinks it's unnecessary (and you're in excruciating pain) and treats you like you're not really sick. After putting your foot down the test is done. The results show an ulcer in addition to the Celiac. The new GI totally changes his attitude and is no longer dismissive. My calls are now returned immediately and I'm schedule for a biopsy in two weeks (I moved to a small town and he wants a special anesthesiologist).

An I live happily (and healthily) ever after...

Loey

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Or when the doctor directs you to the internet for information.

That really was good advise, as this is where I met all of you wonderful people.

Cathy

I agree but my doctor didn't tell me to look at the internet. I googled a question myself and then was directed here. It's been a lifeline!!!!!!

Loey smile.gif

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How about the ever famous answer of "It's a female thing". Followed in a close second to "It's all in yuor head. Here's a prescription for Prozac." Yeah I'm sure that Prozac is just gonna make me happy that I have lower right abdominal pain, weight loss, diarrhea, gas, bloating, more weight loss, and chronic anemia.

We should start a list of favorite quotes from relatives and doctors!

Don't get me started on the "all in your head." I swear that's what my new GI thought about my pain (not about the Celiac diagnosis). I think he thought I was after pain meds but the last thing I want to do is mask the pain or get addicted. He seems to FINALLY be taking me seriously after the capsule endoscopy (which i had to insist on) showed an ulcer) but I have a referral to someone else in case he's not the one to hep me.

Loey smile.gif

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Upon your first visit to this doctor; never having had a prescription for anything from this doctor (prior prescription from this facility was that they gave "Colace" to someone with non-stop diarrhea!). You're sick, scared, exhausted, weak and desperately wanting to feel better; you ask for what is state of the art in those days (lower barium GI series - meaning thru rectum test) and the GI accuses you of only being there to get drugs "You junkies are all alike. You only come here for drugs!" You respond to Dr. Jerk, "I don't want any prescription drugs! What kind of a nut do you think I am asking fo a barium enema?" You leave the facility without test or prescriptions and realize you need a new non-Govt Issued doctor.

1977 East Orange Veteran's Hospital (no wonder Walter Reade Hospital has been found to be unfit)

As I just mentioned I think my new GI thought I was just looking for pain meds. I WASN"T!!!!!!!!!!!!!!!!!!!!!!! I actually have some from an old injury and won't touch them!

Loey mad.gif

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First he told me I had lactose Intolerance, which he had, too. Funny, going off dairy made me L.Intol. Since then, I've gotten back on it.

Then he said my back pain was from slouching and to do more situps (I was aerobics queen as it was)...plus then I'd look at my fat, slouching husband and wonder how his back didn't hurt...????

I begged for the bloodtest and the Dr. INSISTED that I go gluten free to see a dietary response and then if I felt better he'd do the blood test.

When my IgA or whatever levels were "elevated but not enough to diagnose". I said, "What do I do?" He said, keep on a gluten free diet!

btw

Every time I went in he'd say "I think I have that, too". I think they teach them to say that to show compassion. But I can tell it's BS. When he sent in my bloodwork he sent his own in to test his levels, supposedly. what a dork.

And as we all know we need to not be following a gluten-free diet to get an accurate reading. That is if you care about a a definitive celiac diagnosis. Some people prefer to be gluten-free and just feel better.

Loey smile.gif

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I would formally and in writing fire this doctor. I would be very specific about your treatment by her and I would also send copies of the letter to the head of whatever medical group or hospital she is affilated with. Make sure you get full copies of ALL your records from her ASAP (you have a legal right to them and don't let them try to tell you that you don't, you may have to pay a copy charge, and let your new doctor know what happened.

And contact the AMA or any other association that deals with uncouth doctors. This HAS to stop!!!!!!!!!!!

Loey mad.gif

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I was also sent to the internet for information... had no idea what to eat those first few days. Got a great start here at celiac .com :)

There's a thread that lists foods to eat (you still need to check the label and be very careful) and I found a list of gluten-free medicines. Will post below. Hope they help. I have also purchased the Triumph Dining Trio. It contains a books with restaurants in the 50 states that have gluten-free menus, a book of products in the supermarket that are supposed to be gluten-free (again check ALL labels) and finally a laminated set of dining cards that fold and fit in your wallet. The cards are my favorite. They have cuisine from 7 countries. One side lists the information in the language of the country and the other side is in English.

Hope this helps!

Loey smile.gif

http://dearpharmacist.com/?p=755&print=1

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Doctor #1- An internist. I'm 45 and the doc is a woman a bit older. I go in complaining of bloating and "bathroom" problems, with several symptoms of ovarian cancer and wondering why I feel so bad. She poo-poos me but pokes me and does a blood test for ovarian cancer, which is negative. Tells me I'm just overweight (I am, by about 25 pounds) and to go away. Of course, if she had really cared, she might have asked me my other symptoms and diagnosed celiac. A year later I got really sick and had stomach pain, so she did refer me for an endoscopy for an ulcer. That was the only good thing she did.

Doctor #2 - A GI specialist set up to do my biopsy. He was great because he didn't see any evidence of celiac (and wasn't told to look) but he took small intestine samples. No blunting villi BUT there was cellular evidence of an immune response, so he said to eliminate wheat & gluten. Sent me to a dietician. On the followup where I told him how much better I felt and how quickly, he diagnosed celiac. HOWEVER, he told me that since I had a "mild" case, I didn't have to be as careful with CC and could occasionally cheat. So, in the end, a dud.

Doctor #3 - Another internist, a woman in her 30s. I wanted a better doctor, so I went to her on a recommendation from a family member. I told her I felt better after the celiac diagnosis/gluten elimination but still crummy and, based on symptoms and research, I wanted to be tested for autoimmune thyroid problems. She refused, saying that I had no symptoms and all I needed was my TSH tested and I argued with her. She snarkily commented that "not everything you read on the internet is correct" and I argued back that what I read is PubMed, and I also am an intelligent person and expect to be treated correctly and with dignity. I fired her and am seeing a naturopath next week.

Doctor #4 - My long-time OB/GYN who also had the opportunity to diagnose me based on sypmtoms 2-5 years ago. Yesterday when I saw her, she was interested in the celiac and asked what my sypmtoms had been. I told her and stated that that was why I was worried about ovarian cancer and there is some overlap in the symptoms. She sarcastically said, "EVERYONE is worried about ovarian cancer!" HELLO of course we are when CNN or some other media says "IF you have bloating, gas etc. etc. ask your doctor to ckeck for ovarian cancer". And some women do have it. Why she was so defensive I don't know, except maybe because I pointed out that there were symptoms of celiac over 4 years ago. I didn't blame her explicitly but... there you go.

Doctor #5 - My son's Pediatric GI. Talking about my diagnosis, he tells me that without total villious blunting, many doctors would have said that I don't have celiac. Yeah, and since I went off gluten in February, who's to say that by now or next year I wouldn't have been even more sick and by then I would have shown totally "gone" villi due to more gluten damage? Do they really expect someone to have to get so sick before they diagnose? The one good thing that he told me is that even though the insurance company won't pay for my son's gene test until all other test options (i.e. EGD) have been exhausted that I should get MY gene test done and paid for by insurance to see if I "really" have celiac. So I will, but even if I don't have the gene, I would never go back on gluten. But it's a good idea and will help me help my son, even if the doctors won't.

You know the most frustrating thing is that without all you guys, I would feel so alone. The docs make me feel abandoned and unsupported, which is not a good thing - I'm sure you'll all agree - when you're faced with serious illness. I'm happy that I don't have cancer or diabetes but those diseases at least get you some concern from doctors.

We're all here for you and each other. I know I was feeling depressed an isolated because of moving to a new /state the day after my diagnosis. Now I don't feel alone and have made two friends who live in my state.

Whoever started this forum is a Godsend!!!!!!!!!!!!

Loey biggrin.gif

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