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Top Five Reasons To Get A New Doctor
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(1) Your doctor tells you that your symptoms are IBS, which you should just learn to live with, because most women over 40 get IBS. (My mainstream doc misdianosed my celiac disease symptoms with that explanation for 20 years.)

(2) Your doc tells you that your symptoms are caused by stress.

(3) Your doc recommends you see an eating disorder therapist, when you complain of chronic constipation and cramping pain.

(4) Your doc recommends tummy massage to alleviate your 'chronic pain' cycle.

(5) Your doc recommends acupuncture to cope with the stress causing your intestinal cramps.

My naturopath, who diagnosed 4 allergies with the ELISA test, could not believe I still had gut symptoms after stool tests had diagnosed and he treated 2 previous bacteria (Klebsiella and Enterobacter Cloacae). He considered my symptoms 'stress related' and recommended tummy massage when I really had the cryptosporidium, a very pathogenic parasite. One year later he told me my gut symptoms were caused by a mental 'chronic pain' cycle and recommended therapy and accupuncture, when I really had clostridum difficile (c-diff), a life threatening bacterial infection. I've since learned to just ask for the stool test for bacteria and parasites, rather than tell him my symptoms. He may be experienced with celiac disease and food allergies, but he needs a refresher course about bacterial and parasitic infections.

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(1) Your doctor tells you that your symptoms are IBS, which you should just learn to live with, because most women over 40 get IBS. (My mainstream doc misdianosed my celiac disease symptoms with that explanation for 20 years.)

(2) Your doc tells you that your symptoms are caused by stress.

(3) Your doc recommends you see an eating disorder therapist, when you complain of chronic constipation and cramping pain.

(4) Your doc recommends tummy massage to alleviate your 'chronic pain' cycle.

(5) Your doc recommends acupuncture to cope with the stress causing your intestinal cramps.

My naturopath, who diagnosed 4 allergies with the ELISA test, could not believe I still had gut symptoms after stool tests had diagnosed and he treated 2 previous bacteria (Klebsiella and Enterobacter Cloacae). He considered my symptoms 'stress related' and recommended tummy massage when I really had the cryptosporidium, a very pathogenic parasite. One year later he told me my gut symptoms were caused by a mental 'chronic pain' cycle and recommended therapy and accupuncture, when I really had clostridum difficile (c-diff), a life threatening bacterial infection. I've since learned to just ask for the stool test for bacteria and parasites, rather than tell him my symptoms. He may be experienced with celiac disease and food allergies, but he needs a refresher course about bacterial and parasitic infections.

I just posted the above, but somehow someone else's signature info replaced mine. So I wanted to add another post to see whether my signature info appeared.

SUE

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You should find a new doctor when you talk to him/her about going off of gluten for awhile because your symptoms fit, and he/she then tells you that celiac is quite rare and very unlikely, and besides, it's really impossible to eliminate gluten from your diet (laughing while he/she says this).

Grrrrr....btw, this "nice" doctor then proceeded to diagnose me with a heart condition (because my heart rate was elevated due to having stomach cramps and diarrhea for weeks), making it next to impossible to get health insurance. I am now "uninsurable" because of all the disturbing possible diagnoses she put in my file :(

Still fighting with the health insurance companies over this...

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When your GP looks at your chart after the intake nurse's interview and asks you why you want Cialis.

When your rheumatologist, after a very positive endoscopic biopsy and a positive DX from your GI Doc for celiac says that you can't possibly have celiac, that your rheumatoid arthritis can't possibly be responding positively to a gluten free diet, that it is an impossible diet to follow anyway, that you likely really have IBS and that he has some really great drugs to give you for the IBS and RA. Oh, also that you are being a fool for refusing to take Fosamax for bone density issues and you will be a dead foolish non compliant patient if you continue to ignore all his advice. I double checked the sign on the way out and it didn't actually say "Dr. God's office" but I sure had a feeling that it should have.

When the orthopedic and neurological specialists tell you it's time to come to grips with the fact that it's all in your head.

When multiple dentists marvel at how your dental health is so atrocious and that you really are a liar about your personal dental hygiene measures. They do share with you that you are, perhaps, only the second patient they have ever seen who needed multiple root canals. One dentist was convinced I was some sort of irrational addict when I desperately needed a tooth extracted and he wanted to do a root canal on a totally occluded canal which would have been impossible. He then let me know I was no longer welcome at his practice when I got up and left ..still in excruciating pain, because he left me sitting in the chair so long the local had worn off and he wasn't going to come in and do the work. I was just trying to go someplace where they wouldn't all hear me screaming in bloody pain.

Yeah, that's about it... for now.

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5) I thought my current doc was a decent doc. Then DH and I went in to ask about fertility testing (we'd been trying for over a year so we wanted to just see what our options were). He told us that we shouldn't worry yet because we're too young (I'm 23 and DH is 24). He also asked if we had intercourse regularly (um no, we're TTC by abstaining...), and why we were so worried. He also went on and on about how his wife is 37 and she is pregnant, so don't worry, we can always try later.

After being hospitalized/taken to the ER more times than I can count since my very first period, with lengthy/heavy/inexplicable periods.

First OB-GYN, when I was 10, gave me medication for post-abortion/miscarriage. Not only did it not stop the bleeding, it intensified the cramps.

Another OB-GYN, 6 years later, insisted I had been bleeding for 30 days because I had a tubal pregnancy. I told them I was the farthest thing from active - they didn't believe me, told me I had been pregnant and had to own up to my actions. Then sent me home with a request to have an ultrasound, and recommended Advil for the gut-wrenching cramps.

Third OB-GYN (all this before I was active) told me that my irregular, heavy, painful periods with clear ultrasounds and varying bloodwork (surprise, anemia!) said it was "nothing to worry about. You just might not ovulate at all. You probably won't be able to conceive without fertility treatments. But nothing to worry about."

Last August/September, I went to the ER with abdominal pain. Had a CAT Scan, ultrasound, physical exam, etc. All came back clear except for a distended appendix, so they decided to take it out. They found a ruptured ovarian cyst during the surgery - the same cyst they supposed was there, and that no tests ever seemed to see.

And a nurse story - post-op, I was given Flagyl via IV. I was already itchy from the morphine, being given the max dose of Benadryl allowed. Within minutes of getting a dose of Flagyl, I began having an anaphylatic reaction, and my BP shot up, and my pulse was at 130bpm. I called out for the nurse, who told me to stop faking it, and grumbled at stopping the drip. She said she'd call the doctor for an alternative antibiotic, but only to appease me since I obviously was not having an allergic reaction.

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#1 You are told that it is all stress related "in your head", he speaks to your mother about you being a bulimic?!?!?, yet you are over weight!

#2 After you end up in the hospital, you undergo emergency scopes, and are told you have IBS, acid reflux and prescribe a high fiber diet...again....

#3 They take out your gallbladder to explain your gut pain and then when it only gets worse your GI says "Maybe we need to remove a section of your intestine and see if it helps?" WHAT?!?!

Fired fired FIRED!

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It wasn't a doctor, but it was a friend of mine whose mother-in-law has Celiac's. "You can't possibly have any type of food intolerance because you don't have diarrhea."

At least my doctor was smart enough to admit that, "There are constipation Celiacs out there." Even if she did diagnose IBS due to no weight loss. She also refused to let me go on a high-gluten diet for a month and have a blood test done before I move (I'm moving two states away in a month) because the doctors there might not take my results as valid.

Also, the, "But you've been eating breads your entire life without any problems," When I've specifically stated that I believe it began with a bad infection a year and a half ago due to foods that I used to love making me feel utterly sick now.

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If you were already on the gluten-free diet when you had the blood test you may have had a false positive. If you had not eaten any gluten you would not have had the antigliadin antibodies. If someone is going for diagnosis either by blood work or duodenal biopsy DO NOT GO GLUTEN FREE RIGHT BEFORE THE TEST.

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If you were already on the gluten-free diet when you had the blood test you may have had a false positive. If you had not eaten any gluten you would not have had the antigliadin antibodies. If someone is going for diagnosis either by blood work or duodenal biopsy DO NOT GO GLUTEN FREE RIGHT BEFORE THE TEST.

Sorry, I meant False negative not positive. If you were gluten free when the test was done you might have had a false negative.

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How about this one:

You ask to get your son tested for gluten sensitivity/celiac and he says "Geez, I haven't heard anything about that since med school. I wouldn't even know what tests to order". He then proceeds to give you a blank requisition and tells you to "fill out whatever tests you need, just don't go too crazy cuz it can get expensive".

Seriously? 1) How the heck am I supposed to know what test to order? 2) Isn't it your job to figure it out and learn if you don't know?

Geesh.

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Enjoyed this thread.

I had an ER doctor to ask me if I was there for her to find out what was wrong with me or control my pain. I replied to find out what's wrong. She rolled her eyes and said That's not going to happen!

I had my PCP give up and pat me on my knee and said, well it's probably something for the GYN, he'll fix you up. If something was going to rupture, it all ready would have.

I had CC and didn't know I had done it last month. I was in so much pain when I called the gastro on Monday, the nurse said we have no appointments until Friday, you'll have to go to the ER. What?! I didn't go to the ER BTDT!

My dietition was the bigeest help!

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When your doctor's P.A. is a hopeless incompetent and/or has it in for you :unsure:

You leave a message that you need an urgent appt. (instructions from the ER) and a prescrription for potassium. You get her voice mail which states that your call will be returned in 24 hours and DO NOT call again "because this only delays the process", :ph34r: and then she not only does not call you but claims you didn't even call.

When you call scheduling and finally get an appt. and ask her to leave a written message for the P.A. about the potassium prescription. And she claims she did not get the message. :huh:

When she actually calls you just prior to discharge from the hospital (which you would not have needed to go to if you had gotten the */@#* potassium), and tells you she is calling in a prescription for overnight oxygen to a company (I have COPD and have trouble with the altitude). When you get home you call the company at 4:45 p.m. to confirm you are there to receive it, and they tell you they don't have a prescription :angry::blink: And they have to wait for the doctor to get free to get it from her. :rolleyes: And it is coming from Reno :o Fortunately the driver lives in Carson City :)

And all that is just this one week, this year. We won't go into last year....

Trouble is, I love my doc :wub:

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My doctor said.."My wife and I had a few friends over the other night, we were sitting around drinking beer, and I brought up my 'Celiac Patient' (meaning me)...next thing I knew, we had spent hours talking about how much that would suck."

Really?

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My dad's doctor refused to let him get tested for Celiac disease (and I have it) because he showed "no symptoms."

After 20 plus years of having that grouchy bastard doctor, this was the last straw and he finally changed doctors.

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I just got super scared to go see my doc about getting tested. :unsure:

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Don't be. I had two docs convinced that celiac was the issue despite negative tests.

And then a sensible one who did more comprehensive testing and found more nutrient deficiencies that were also issues, as well as pushing me to do an elimination diet.

I also had an incompetent GI years ago who lost blood and never sent me any test results. But hey.

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When I created this post a few years ago, it was mainly a comic relief effort to some really serious reactions from disengaged doctors. It has been gratifying to check in from time to time, because it still gives a chuckle; still gives a great vent and still educates us to keep pushing until you find a doctor who cares to be a partner in YOUR health and healing.

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If it is clear from your first meeting with a doctor that he is trying to prove you wrong, run, and I don

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These are quite something and I take them to heart!

My GI told me just the other day that "Because you've had IBS so long, that's what it is" I also got the *antidepressant* speel and of course the ever popular eating more fibre. She had nothing to come back with when I told her I am already on antidepressants for PMDD.

So if your an idiot for 30 years I guess you will always be an idiot and there is no cure?

BUZZZZZ

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Gastro's report says you have an "aversion to food."

Another gastro tells you that your weight loss is only becuase your're not eating enough food. (Heck with the fact that you've had diarrhea for 3 mos and lost 30 lbs.)

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My favorite all time reason for changing doctors is when they look at you and say,

"You look healthy."

I recently had a cardiologist tell me (on a morning when I was especially sick), "You're better than advertised.... You advertise yourself! All you need to do is cheer up, be happy... you'll feel better!"

And, at the end of that meeting, we both walked out thinking, "Next!"

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When you tell your cardiologist you are consulting a nutritionist, and all he has to say is (playing to the peanuts back-desk gallery here): "Is she a good-looking chick?" :unsure:

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When the doctor suggests that you walk around carrying a sign that says "Will work for Pampers."

Seriously though, when the doctor takes blood tests then looks only at celiac and not at gluten intolerance -- only at IgA and not at IgG.

Great thread!

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"Loose twenty pounds and all your problems will go away."

"Yeah, ah, the joint pain and the nausea too? Really?"

"Absolutely."

I never went back to him. He was way too young anyway, and his hands were clamy and cold and shook when he examined me.

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When your doctor says " in over 25 years I have never had a patient with negative bloods for celiac be celiac "

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    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
    • Celiac disease sufferers or those who embrace a life without gluten can check out Canada's Gluten-Free Market when it makes stops in London and ... View the full article
    • I too have heart palps, flutters, skips whatever you want to call them. Ecg shows nothing. I was told by my doctor it is due to my low iron which is due to celiac. They pretty much went away after being gluten-free. But occasionally do come back. I've actually been having them for the past 3 days. But I was glutened with really severe reaction about a week ago so not sure if its due to that. Or if iron is low right now. I am on supplements but it still goes up and down. I hear you about doctors. It seems if you don't do research yourself or ask questions they don't say or do or test for anything. 
    • For a number of years pre diagnosis I had irregular heartbeats - anything from a fluttering type thing to seemingly skipping one or more beats to rapid beats to something like a short drum riff. I had multiple ECG's which didn't find anything odd. It never did it when I was at the doctors or getting the ECG's. Sometimes it seemed to pound very hard & rapid, at these times I discovered if I just laid down flat on my back, it would restore normal rhythm almost instantly. These things happened at random whether I was at rest, sitting, standing, running or working hard. It was always short lived -- lasting only 1 to several seconds, perhaps the longest was close to a minute. I too have little faith in docs as I've had my share of being blown off, to misdiagnoses. The whole heart thing quit after I had been gluten-free for a while but if I get glutened, it returns.
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