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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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    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
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