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We Need To Start A Thread On Stupid Stuff Doctors Say!
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This was years ago, but the only thing off during the testing at a yearly physical was extremely low cholesterol levels. Despite that my doctor asked me if I was a vegetarian and my answer was no, and that I had never been, his treatment recommendation was "Eat more steak." and he sent me on my way.

For years I complained that I had abdominal pain. I can't tell you how many times I've been tested for the same three STDs without the doctors telling me that they are going to run the tests, if I've been tested before, or if I've done anything to acquire an STD. Most of the time, I find out that they've run the test when I get the bill for the lab work! Of course, that is better than the doctor who insisted that I must have been raped.

I have dozens more, but they are all pretty depressing and I don't want to revisit them. I have yet to find a doctor that I respect.

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My Doc humiliated me, talked to me like I was a child, and told me Celiac is an allergy to wheat. (and he's the one that diagnosed me) I feel like I did or said something wrong. Sorry, I just need to have a little pity party right now:(

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My Doc humiliated me, talked to me like I was a child, and told me Celiac is an allergy to wheat. (and he's the one that diagnosed me) I feel like I did or said something wrong. Sorry, I just need to have a little pity party right now:(

 

I started seeing doctors when I was 15 years old for severe and debilitating joint and muscle pain (among a myriad of other gloriously awful symptoms), it was ruining my life before I even really had one!  I was tested over and over again for RA (despite the several negative tests before each one, doc thought, well, let's try ONE more time...), one doctor told me at 16, it's just growing pains, you'll grow out of it.  At 18 a doctor told me, well, you're abnormally flexible (I was a gymnast for years before I hit puberty and it all went downhill from there lol) and that's the price I had to pay for that "gift".  At 20 a doctor I hadn't seen before put down her notes, looked right at me and said, "I'm not prescribing you any narcotics, so know that before we proceed"...the best part is I wrote on my medical history form, I don't take opiates because I can't stand the effect they have on me...  The last doctor I saw before I gave up and researched, reached out to the gluten-free community and then ultimately went gluten-free on my own, well, the last doctor responded to my multiple requests to be referred to a GI specialist for testing (my insurance required that darn referral) by saying, "you're more likely to die in a plane crash than have celiac, that's definitely not whats happening here.   You just have fibromyalgia and IBS and depression and ADHD, have 6 prescriptions and call me in the morning."  ...well, that last part wasn't a direct quote, but pretty much.  I've pretty much given up on doctors for help diagnosing my issues, I get my anti-depressant/ADHD meds from him every month and call it a day.  Western medicine, by a large majority, is a straight up joke!! I'm coming up on 4 years gluten free and have never felt healthier in my life, so they can take their "clinical" diagnosis and shove it you know where, no one wanted to help me when I needed it so I fixed the problem before they got around to testing me for it.  Absurd!

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My first real experience with a dr (aside from check-ups) was when I broke a finger as a 7 year old and my pediatrician told us it couldn't possibly be broken because I didn't seem to really be in pain, and x-rays "weren't worth it." so I walked around with a broken finger for 6 weeks until we finally went back to see an orthopedist since it still hadn't healed...and I have to say docs have been pretty consistent in disappointing me/meeting my VERY low expectations since then : )

 

I do give a lot of credit to the PCP i went to see who thought to test me for celiac this past after I told her that I was having lots of stomach pains and trying to eat healthy by "eating lots of whole grans," whoops. But minus 1000 points for when the results came back she called to tell me i "tested positive for gluten" and that I should stay away from it for maybe a year and then "I could probably go back to eating gluten again." Thankfully I'm cynical about drs that I asked her to see the actual results, researched the tests online and emailed her back to ask if the tests meant celiac disease, and if so, doesn't that mean for life? She basically answered me back with an "ummm..." and suggested I go see some random GI who could "answer all my questions." I'm trying to get the nerve up to send her a good medical book on celiac with some passages highlighted, and a note on the inside asking her to please not give her patients advice that could kill them, in future... but I know others have had much worse experiences.

 

My slightly uplifting stupid dr story was a few years ago - after going in to an ENT to find out why i was getting constant shooting pains through my nose (not to mention sinus infections, migraines, etc), the very lovely, intelligent dr and had me do a CT that found I had a giant, POINTY bone spur stabbing into the inside of my nose. Unfortunately I moved before I could have him do the surgery to remove it, so I then shopped around 3 different surgeons who all told me that the bone spur couldn't be causing any problems for me, that it was most likely allergies or all in my head or take your pick of condesceding things Drs like to say to 22 year old women.

 

The uplifting part, though, is when I finally did find a doc who was "willing" to humor me and take out the bone spur, and I came back to tell him after how ridiculously better I felt, he looked at me and said, "Huh, maybe I should stop telling all my patients this won't help them." So, progress? Or baby steps, at least? : )

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      When asking if there was a test to see if I was lactose intolerant the physicians assistant's nurse could hardly tell me the response from the physician's assistant with a straight face. She said to tell you to drink a quart of milk and see what happens. :) I immediately said I am not going to do that!

       I haven't actually got much help from the doctors unfortunately.

That sounds like my doctor, he refused to any kind of blood work and told me if it makes me feel better than just do it. Needless to say I'm looking for a new gp. I told my endo that gluten free foods seem to help my blood sugar, and he said that I was sensitive to gluten. My peditrist told me to eat gluten and a month later, no energy, dark rings under my eyes and the neuropathy that had been reversing was back!

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    • Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten. He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
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