Why Are Dr's Incompetent?

[sariesue]

Last year I finally got tired of feeling like crap all the time and had started to suspect celiac. So I went to my dr and he agreed based on my symptoms to test me. I was told that all my blood work results were normal but, was going to do the endoscopy with biopsies. Where he did a total of 8 biopsies, only two were in my small intestine. I was told the biopsies came back normal,so I continued looking for a different answer and was tested for food allergies. I am changing allergists next week and it restarted my desire to get an actual diagnosis. So I got copies of the blood work that was done as well as the endoscopy and pathology reports. I was shocked to find that the only somewhat relevant test that was done for testing for celiac was a b-12 test. Which was normal at 500 because I was already supplementing 1000 mcgs daily since july when the level was dropped to 205. I apparently never had the blood tests for celiac. And since I went completely gluten free several months ago and have no desire to eat gluten for several months to be tested. So I will never get a diagnosis. I just don't understand why the blood tests weren't done when I had to have blood drawn anyways. The way that blood work is done in that office is rather backwards too. They draw blood there and run what tests they can and send what they can't do off, so I never saw the slips of what tests were being done.

[GlutenFreeSA]

  On 11/23/2011 at 3:50 PM, sariesue said:

Last year I finally got tired of feeling like crap all the time and had started to suspect celiac. So I went to my dr and he agreed based on my symptoms to test me. I was told that all my blood work results were normal but, was going to do the endoscopy with biopsies. Where he did a total of 8 biopsies, only two were in my small intestine. I was told the biopsies came back normal,so I continued looking for a different answer and was tested for food allergies. I am changing allergists next week and it restarted my desire to get an actual diagnosis. So I got copies of the blood work that was done as well as the endoscopy and pathology reports. I was shocked to find that the only somewhat relevant test that was done for testing for celiac was a b-12 test. Which was normal at 500 because I was already supplementing 1000 mcgs daily since july when the level was dropped to 205. I apparently never had the blood tests for celiac. And since I went completely gluten free several months ago and have no desire to eat gluten for several months to be tested. So I will never get a diagnosis. I just don't understand why the blood tests weren't done when I had to have blood drawn anyways. The way that blood work is done in that office is rather backwards too. They draw blood there and run what tests they can and send what they can't do off, so I never saw the slips of what tests were being done.

I have been there - done that bought the T-shirt but not to come up for the doctors Celiac is known to be a chameleon throwing the doctors of the course. It is easily missed as the symptoms often show something not even remotely obvious as a gluten issue. a Blood test could revile a probability for Celiac BUT it has to be confirmed via biopsy. I have been with a gastroenterologist that claimed poisoning (Hello who did it my husband..) I think the bottom line is you need to spill all the beans, give a full profile, when talking to the doctor, explain all the issues and ask to be tested for Celiac. Most GP's do not know the first thing about Celiac thus "confuse" the symptoms with something ells. My advice to people not knowing if they have Celiac or not is: If first you do not get better from the doctors treatment find another doctor and ask to be referred to a specialist. We take for granted that doctors should know everything. We need to trust our instincts if the doctors diagnoses does not fit your gut feeling you are probably right get help from someone ells!!

[ravenwoodglass]

  On 11/23/2011 at 3:50 PM, sariesue said:

Last year I finally got tired of feeling like crap all the time and had started to suspect celiac. So I went to my dr and he agreed based on my symptoms to test me. I was told that all my blood work results were normal but, was going to do the endoscopy with biopsies. Where he did a total of 8 biopsies, only two were in my small intestine. I was told the biopsies came back normal,so I continued looking for a different answer and was tested for food allergies. I am changing allergists next week and it restarted my desire to get an actual diagnosis. So I got copies of the blood work that was done as well as the endoscopy and pathology reports. I was shocked to find that the only somewhat relevant test that was done for testing for celiac was a b-12 test. Which was normal at 500 because I was already supplementing 1000 mcgs daily since july when the level was dropped to 205. I apparently never had the blood tests for celiac. And since I went completely gluten free several months ago and have no desire to eat gluten for several months to be tested. So I will never get a diagnosis. I just don't understand why the blood tests weren't done when I had to have blood drawn anyways. The way that blood work is done in that office is rather backwards too. They draw blood there and run what tests they can and send what they can't do off, so I never saw the slips of what tests were being done.

Sounds like the doctor was not the greatest. Hopefully you don't still see him and have told him why. If the diet is helping you that is the most important thing though in the long run. Since false negatives on both blood and biopsy are all too common even if he ran the tests he was supposed to you still might not have gotten the answer that just doing the diet gives you.

[sariesue]

  On 11/23/2011 at 6:49 PM, ravenwoodglass said:

Sounds like the doctor was not the greatest. Hopefully you don't still see him and have told him why. If the diet is helping you that is the most important thing though in the long run. Since false negatives on both blood and biopsy are all too common even if he ran the tests he was supposed to you still might not have gotten the answer that just doing the diet gives you.

At the moment he is still my dr. Currently serving two functions he is my primary care dr and GI as he is board certified in both areas. Unfortunately it is hard to change because he is also my husband's dr as well. And he really likes him. But, I may try to find a female dr and use that as a guise for changing drs....

[ravenwoodglass]

  On 11/23/2011 at 6:58 PM, sariesue said:

At the moment he is still my dr. Currently serving two functions he is my primary care dr and GI as he is board certified in both areas. Unfortunately it is hard to change because he is also my husband's dr as well. And he really likes him. But, I may try to find a female dr and use that as a guise for changing drs....

He may be board certified in both areas but it doesn't sound like he is proficient in either. If your husband isn't angry with your treatment IMHO he should be. Switching to another is going to be a good idea. You shouldn't have to have an excuse to do so but if you do use whatever reason works for you as this doctor sure doesn't.

Be sure to tell your new doctor your whole history and the results you have had on the diet. You may find a more savvy doctor gives you an 'unofficial' diagnosis based on recovery and your response to either deliberate or accidental challenges.

[nora-n]

some order the gene test from enterolab, and the stool test for antibodies can maybe pick up antibodies to gliadin several months after going gluten-free. Enterolab cannot diagnose celiac, just gluten sensitivity.

[sariesue]

Thanks, I know I need a new dr I just hate searching for them.

[Roda]

I don't see any reason for you to stick with this doctor just because he is your husbands doctor. My husband and I have different doctors. While I am less than thrilled with his, he still sees him. I'm working with my husband to switch to the office I go to because of the incompentence from his. He is slowly seeing this now. Even then he will be seeing a partner in the group I go to not the same one. We don't even accompany each other to our appointments unless it is something we need to discuss together.

[Di2011]

Make sure you have of a copy of your medical records/results etc for any new doctor.

Can you get in touch with any people or support groups/societies in your area and ask for someone with a good reputation dealing with celiac/gluten intolerance?

[beebs]

  On 11/23/2011 at 3:50 PM, sariesue said:

Last year I finally got tired of feeling like crap all the time and had started to suspect celiac. So I went to my dr and he agreed based on my symptoms to test me. I was told that all my blood work results were normal but, was going to do the endoscopy with biopsies. Where he did a total of 8 biopsies, only two were in my small intestine. I was told the biopsies came back normal,so I continued looking for a different answer and was tested for food allergies. I am changing allergists next week and it restarted my desire to get an actual diagnosis. So I got copies of the blood work that was done as well as the endoscopy and pathology reports. I was shocked to find that the only somewhat relevant test that was done for testing for celiac was a b-12 test. Which was normal at 500 because I was already supplementing 1000 mcgs daily since july when the level was dropped to 205. I apparently never had the blood tests for celiac. And since I went completely gluten free several months ago and have no desire to eat gluten for several months to be tested. So I will never get a diagnosis. I just don't understand why the blood tests weren't done when I had to have blood drawn anyways. The way that blood work is done in that office is rather backwards too. They draw blood there and run what tests they can and send what they can't do off, so I never saw the slips of what tests were being done.

This sounds so similar to my story. As a precaution a few years back I had a celiac panel and genes test (my mother has it). The panel came back negative and the Dr told me my genes weren't the common ones so there was no way I could be celiac anyway. A few years later my symptoms started to come thick and fast - although not the usual type. I ended up seeing a GI for intussusception episodes but because my genes were negative he never ever entertained the thought of celiac. I went gluten free because I had nothing left to lose - my life changed and all of my crazy symptoms and severe GERD, the intussusception episodes etc stopped. Now if I ingest gluten I get intussusception every time. So bad. A few months ago I found out that the genes test was never done and the Dr just told me I was negative for the genes and I have no idea why - I think he must've forgotten to do them but didn't want to admit it! Now its clear that I am Celiac - I was talking to a bigwig celiac specialist the other day and the said he absolutely thinks I have celiac but I will never be able to get a proper diag - unless they bring in that new way of testing (applying the gliadin straight to the biopsies) but that could take years and years! I don't mind so much now that he has said that he knows that its celiac - I was having a lot of issues before when no-one believed that I was better being gluten-free because my genes were neg - now that they all know there was a mistake its ok and I don't have to keep explaining all the time. But geez - that Doctor lost me a diagnosis and caused me about 3 years of drs thinking I was insane!

[shakemysoul]

This sounds so similar to me.. Although I went over 2 years of symptoms and through 3 different doctors that never even thought of celiac or tested anything relevant. I have no GI symptoms at all, but really they should know all symptoms to look for. My dad called me one day after doing research online and said I think you have Celiac. I brought it up to a nutrition specialist and he agreed and wanting to order tests, but I had already gone gluten-free. Wasn't about to go back after feeling so much better! Glad to know there are other "non-official" diagnoses out there!

[shakemysoul]

I have also yet to find a new Primary Care Dr. It can be so frustrating!