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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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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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