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Doctors Not Listening To Me...even Laughing

gossamer

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mushroom Proficient
mushroom
Posted
that is really annoying that i have to diagnose myself. they're the professionals. and whenever i do diagnose myself...i bring in paperwork listing symptoms & prints from websites, etc....and then half the time they don't look at it, and if they do it's just a glance. and many of them have god complexes and seem mad that i'm diagnosing myself. grrrrrrrrr!

Well, No.1, they get darned annoyed that we would presume to usurp their territory (which, by the way, they have abandoned on us), and No.2, they find it really hard to believe that other people can read and deduce, put two and two together and actually come up with four. So no, they are not interested in anything we present to them, because how can we possibly know anything???

I kept saying to my doc, I want an x-ray of my back. He kept saying "it won't show anything." This went on for four months until I finally said, "Look, just humour me. Prove it won't show anything." Surprise, surprise, it showed a wedge compression fracture of T11 that has been there for a year!! Sometimes you just have to hit them over the head with it.

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phelipa Newbie
phelipa
Posted
3 GI docs????? thanks for the heads up! And to think i thought it would be rude to consult a different doc...silly me. ;)

I agree! I was so scared to ask for another GI consult because I had some ridiculous idea that he would hear about it and get mad at me...

However, I did ask my GP for a referral to another GI specialist who is said to be REALLY good (I've been 'diagnosed' with IBS by my current GI) but she refused to give me a referral! I was kind of shocked by that and now I'm intimidated, I don't know who to talk to or where to seek help. It was a nutritionist that suggested I be tested for celiac disease again (negative bloodwork in 08) through enterolab but I'm just so beyond confused...

phelipa Newbie
phelipa
Posted
I had the worst experience today ever!! I didn't even get to see a Dr. I saw a nurse practioner...OMG I told her all my symptoms I took my food/episode diary in she wouldn't even look at it. I tried to show her this "rash" that I have on my elbows she told me to make another appt that the rash had nothing to do with my problems.. I said can't we do blood test to rule it out at least start somewhere she said NO, it's IBS eat activa, take immodium, and if you still think it's a gluten problem don't eat gluten!!

Needless to say I left the place crying and upset!! I'm so tired of planning my activities around my toliet problems..

Symptoms I have-

diagnosed with ibs but still have PROMBLEMS

Recurring bloating, gas, or abdominal pain

Chronic diarrhea or constipation or both

Unexplained weight loss or weight gain

Pale, foul-smelling stool

anemia

Bone or joint pain

Behavior changes/depression/irritability

Missed menstrual periods

unexplained RASH on my elbows and couple other areas...

gall bladder out 8-08

She acted as if I wanted celiac.... ummmm No I really don't I happen to love lots, and lots of foods with gluten, I just don't like being sick after I eat it!! Finding a GI Dr tomorrow...

rAnT oVeR-

feel free to message me with any OKC, Oklahoma GI doctors they prefer...

I'm so sorry this happened :(

I had a similar episode with a GI Dr. and burst into tears in front of him because I was so frustrated. I have also been diagnosed with IBS-D and have almost every single symptom you have (no rash or gallbladder removal), my IBS is not controlled at all which makes me think it's someething else but right now anytime I even think about talking about my problems with a doctor I get so worked up, I've cried at my last three Dr's appts because I just don't know what to do. No one can give any advice, even if they say it is IBS, and they refuse to consider the idea that it COULD be celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted
I'm so sorry this happened :(

I had a similar episode with a GI Dr. and burst into tears in front of him because I was so frustrated. I have also been diagnosed with IBS-D and have almost every single symptom you have (no rash or gallbladder removal), my IBS is not controlled at all which makes me think it's someething else but right now anytime I even think about talking about my problems with a doctor I get so worked up, I've cried at my last three Dr's appts because I just don't know what to do. No one can give any advice, even if they say it is IBS, and they refuse to consider the idea that it COULD be celiac.

Unfortunately there are far to many of us out there that are or were in the same boat. I was blood tested repeatedly and I am in the 30% group that don't show up on blood tests so doctors took that as gospel and didn't even tell me what 'sprue' was other than to say to be glad I didn't have it as I 'Wouldn't be able to eat anything'. I was very seriously ill and seeing a physical therapist and it took her a month of nagging to get me to go to an allergist. I had by then given up all hope but that allergist saved my life. If you can find an allergist who does elimination diets do think about a consultation. They will test you for allergies and give you a starting point.

You do also have another valid option, read as much as you can here and at other sites like the NIH, and celiac.org and csa.org and give the diet a good strict try. You don't need a doctors permission to eat gluten free. If you firmly require a doctor acknowledged diagnosis you do need to keep eating gluten until all testing is done.

phelipa Newbie
phelipa
Posted
Unfortunately there are far to many of us out there that are or were in the same boat. I was blood tested repeatedly and I am in the 30% group that don't show up on blood tests so doctors took that as gospel and didn't even tell me what 'sprue' was other than to say to be glad I didn't have it as I 'Wouldn't be able to eat anything'. I was very seriously ill and seeing a physical therapist and it took her a month of nagging to get me to go to an allergist. I had by then given up all hope but that allergist saved my life. If you can find an allergist who does elimination diets do think about a consultation. They will test you for allergies and give you a starting point.

You do also have another valid option, read as much as you can here and at other sites like the NIH, and celiac.org and csa.org and give the diet a good strict try. You don't need a doctors permission to eat gluten free. If you firmly require a doctor acknowledged diagnosis you do need to keep eating gluten until all testing is done.

Thanks for the reply :)

So it is about 30% that show negative on bloodwork? I'll definitely look into an allergist - even if it wasn't celiac and they could help eliminate other foods if I do actually have IBS that would be fabulous. I didn't know that they helped with elimination diets as well! I've done a lot of research on it as well, as my cousin has it and for the longest time after she was diagnosed I suspected I had it - I did give it a try for a few months but still had attacks - I'm not sure if I accidently ingested gluten or whether it was due to something else/not celiac.

I was even more confused by a nutritionist today as I now have four people telling me four different things to do...I just don't even know where to start in trying to fix my guts ;)

pele Rookie
pele
Posted

gossamer--

I only have one bit of advice:

Please ask your doctors to give you written copies of all test results and read them yourself.

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