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Connie Shedlock

What Would You Do?

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My husband cancelled a follow up appointment with his doctor after having an endoscopy in August 2006. He went back to this doctor on July 21, 2008 and was told the endoscopy showed he has celiac sprue. The doctor told my husband, "See if you had kept your appointment [8/2006] you would have found out you have celiac sprue!!!!! The doctor said it is the patient's "responsibility" to find out test results by keeping appointments. The lab report was never forwarded to my husband's GP.

What would you do?

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Kinda depends on how much energy you want to invest in this. You could drop it, and just tell all your friends that you wouldn't recommend him. You could write a letter to his boss(es) and complain that you shouldn't have to pay an additional office visit fee to get test results (include something about 'would have made an appointment if anything wasn't clear'). You could complain to (state board? someone local and who has something to say about physicians) that this doctor withheld health information and you want to report him.

My guess would be that only the first one will actually achieve anything, but the second two might make you feel better (and wouldn't be a bad thing to do in any case).

Two years does seem kinda long to have withheld information.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Kinda depends on how much energy you want to invest in this. You could drop it, and just tell all your friends that you wouldn't recommend him. You could write a letter to his boss(es) and complain that you shouldn't have to pay an additional office visit fee to get test results (include something about 'would have made an appointment if anything wasn't clear'). You could complain to (state board? someone local and who has something to say about physicians) that this doctor withheld health information and you want to report him.

My guess would be that only the first one will actually achieve anything, but the second two might make you feel better (and wouldn't be a bad thing to do in any case).

Two years does seem kinda long to have withheld information.

Thanks for the reply. In two years my husband has lost a lot of weight (presently 139 lbs), now has to have Vitamin B-12 injections, a bone density scan, has lost teeth, etc. etc. And to think maybe this could have been prevented or avoided altogether if a more conscientous physician would have advised my husband of this disease two years ago rather than thinking of the billable hours another office visit would produce.

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I'm going to take a different view, and will probably get some flak, so I am putting on my kevlar vest.

The doctor did the endoscopy, and a follow-up appointment was scheduled. Your husband chose not to keep the appointment. Who is responsible for that decision? Certainly not the doctor. Yes, the doctor's office could have called to ask about rescheduling the visit (maybe they did?).

I do agree that the doctor's attitude was reprehensible, but the root of the problem, as I see it, is a decision made by the patient (your husband).

Bundling up the flak jacket and climbing down into the bomb shelter. :ph34r:


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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Just out of curiosity, what do doctors do in the case of a patient not coming to receive test results when the tests show the patient has cancer?


Gluten free 3/07 self diagnosed

Specific Carbohydrate Diet 4/08--yes, it works.

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I am shocked that the dr or someone did not call or mail some form of a note or results to you in the mail.

But on the other hand if I were in the situation I would have called the dr's office and asked if the test results came in if I didn't hear back in a about a month. A lot of dr locations have a medical records dept and you can also go their and sign a paper to get a copy of the test results.

I am sorry to say it but I agress with psawyer, the follow up appt was cancelled (I would have gone after how much you spent on the procedure -- unless your insurance covered all of it) but I also agree with some of what Jestgar said as well about writing a letter to someone higher up (about how the dr didn't inform you of his celiac situation and how things could possibly be different now).

I would be mad enough though to change dr's and I probably would not have anything nice to say if someone asked me my opinion of the dr.


Rebecca

Partial Gluten Free March 2007

Completely Gluten Free February 2008

Tapioca Starch/Flour Free April 2008

No MSG July 2008

Cut out Nitrates//Nitrites January 2009

Problems with Tomatoes and Potatoes -- Cut out Nightshades Aug '09

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I had a similar situation. I would have been diagnosed with celiac disease almost a year earlier, if I had not cancelled an appointment with my orthopedist after my bone density scan. I had intended to reschedule, but my broken heel was finally doing better, so I just never got around to rescheduling to get the results.

After I got really sick and was diagnosed with celiac, my GI requested a copy of my bone density scan. It showed I had less than 60% of my bone mass left. The report further stated that I needed further workup for a metabolic disorder like celiac sprue, given the profound bone loss.

The orthopedist never called to let me know that something very abnormal had been found on my scan. So what did I do about it? Nothing. I was the one that cancelled the appointment. I knew results were available, and I further knew there was a suspicion that something was wrong, otherwise the test would not have been ordered.

I was not happy that I could have known about this sooner, and I would have thought that the report was serious enough that I should have been notified. However, I also realize I am an adult, and should not expect someone to chase me down to give me a test result I knew very well was pending. I could have called and asked about the results if I really wanted to know.

I never considered it "withholding information" on my doctor's part. I imagine they thought I would reschedule. No one gave me any problem when I went to pick up the report from his office without an office visit, so they weren't holding it for ransom.

Anyway, I ended up being more angry with myself than the doctor, and would have felt too foolish to complain to someone else about it. But that is just me.


Positive Bloodwork January 2007

Positive Biopsy Feb. 2007

Gluten Free since January 2007

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

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For the common, yearly blood test kind of results, the doctor will usually just call with the results. For bigger things where a followup appointment is made, the doc usually just waits for the patient to come in. If an appointment is cancelled, I think it's the patients responsibility to call and ask for test results. It might be the nice things for the doctor to call, but I don't think they have to.

It's very common for test results to get overlooked, even for routine tests. I always mark on my calendar to call a doctor back if I haven't received results in a week or two just in case.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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I'm going to take a different view, and will probably get some flak, so I am putting on my kevlar vest.

The doctor did the endoscopy, and a follow-up appointment was scheduled. Your husband chose not to keep the appointment. Who is responsible for that decision? Certainly not the doctor. Yes, the doctor's office could have called to ask about rescheduling the visit (maybe they did?).

I do agree that the doctor's attitude was reprehensible, but the root of the problem, as I see it, is a decision made by the patient (your husband).

Bundling up the flak jacket and climbing down into the bomb shelter. :ph34r:

Your response was hysterical! I know it'll be my turn to don the kevlar after saying that, but the truth is the truth, whether people like it or not. :P

Connie.....I am sorry your husband's health declined during that 2 years and I know from experience myself, as I had some of the problems you mentioned in your post. However, if your hubby felt that badly and had 2 more years of additional damage and it got to the point where he was losing teeth and a lot of weight, doesn't it make sense he should have gone back to get his test results? Was the endo originally done to check for celiac disease? It almost sounds like he went through what many people do.....denial. He probably knew deep down he had celiac disease or something else serious and, subconsciously, didn't want to know. Sometimes people have to get that bad before they are willing to accept a diagnosis like this.

Hope he feels better soon and responds well to the diet!

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Something like this could get a plaintiff's attorney really excited. On the other hand, your husband must not have felt so sickly after the endoscopy if he never bothered to check on the results. It only takes a phone call to get them.

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Just out of curiosity, what do doctors do in the case of a patient not coming to receive test results when the tests show the patient has cancer?

This was my initial reaction too. The patient eventually does get sick enough to return to their doctor, as my husband did. Woulda, coulda, shoulda......but you would think my husband's gastroenterologist would be professional enough to want to prevent further damage that untreated celiac spure does cause.

Thank you all for your feedback. It has helped to diffuse my anger and confusion somewhat. I'll put the energy into helping my husband become gluten free. Thank you.

Connie

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I'm going to take a different view, and will probably get some flak, so I am putting on my kevlar vest.

The doctor did the endoscopy, and a follow-up appointment was scheduled. Your husband chose not to keep the appointment. Who is responsible for that decision? Certainly not the doctor. Yes, the doctor's office could have called to ask about rescheduling the visit (maybe they did?).

I do agree that the doctor's attitude was reprehensible, but the root of the problem, as I see it, is a decision made by the patient (your husband).

Bundling up the flak jacket and climbing down into the bomb shelter. :ph34r:

Gotta agree w/ you there Peter... there is only SO much responsibility we can put on doctors to chase us down when we cancel appointments. If he'd wanted to know... he could have rescheduled or called, at least.


luvs2eat

Living in the beautiful Ozark mountains in Arkansas

positive blood tests and later, positive biopsy

diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day

Dairy free since July 2010 and NOT happy about it!!

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This was my initial reaction too. The patient eventually does get sick enough to return to their doctor, as my husband did. Woulda, coulda, shoulda......but you would think my husband's gastroenterologist would be professional enough to want to prevent further damage that untreated celiac spure does cause.

Thank you all for your feedback. It has helped to diffuse my anger and confusion somewhat. I'll put the energy into helping my husband become gluten free. Thank you.

Connie

We also should remember that it is not the doctor who schedules and deals with no shows for appointments. It is the staff who may not even have seen the test results. One way to prevent this occuring in the future is to request that all lab and testing results have copies sent to your home. Also were you with your husband for the endo? Sometimes they can tell even before the tests are back that celiac is the most likely diagnosis and will state that when they visit in the recovery room. He may have mentioned it but the patient forgot or as stated before the possibility of denial is there also. I would most likely change doctors to one who makes call backs when abnormal test results are seen. His office staff should be able to tell you when you interview whether that is common practice for them.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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What ever happened to "take responsibility for your own health care?" A test was done for a reason and a follow up visit was scheduled to discuss the results of the test. It is easy, common, and probably normal and inborn to look around for someone else to cast blame on. (Genesis 3:12-13) Nevertheless it is not the fault of the doctor nor of the staff that the patient chose to cancel the appointment.

I have to agree completely with Peter on this one.

Considering how ignorant the medical profession is about celiac and gluten intolerance, I don't think I would change doctors. You have found one who recognizes it. It might take you decades to find another one. :o

JMHO


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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While I agree that the patient "should" follow-up, I have to wonder if the GP referred the patient to the GI. The OP said that the GP didn't get the report. If that is true, the GI doc was at fault for not sending the report to the GP. Referring docs should ALWAYS get the results back, and the docs should be communicating with each other.

Recently, my GP referred me to a radiologist, and the GP called me with the results.

When I had my endoscopy, the GI personally called me with results, and they weren't even looking for celiac.

When my son was referred to a GI by his pediatrician, the GI sent the report back to the pediatrician, who now has that report in my son's chart.

And when I had a bone density scan, the GP called and told me that I had osteopenia and should make an appointment for a follow-up visit.

Am I the only one who gets phone calls from doctors?

So, in my opinion, the GI (and the GP if s/he got the report from the GI) should have called the patient. The patient would not have had problems if the GI did their part.

There is enough blame to go around. And I think the lesson here is 1) always follow-up with test results and 2) ask that the lab report be sent to you AND to your GP.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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Just out of curiosity, what do doctors do in the case of a patient not coming to receive test results when the tests show the patient has cancer?

In my experience, they call you.

And docs that don't call in the case of cancer diagnoses, get sued and lose.

And a lot of us here would say that celiac is (or is almost) as bad as cancer.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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In my experience, they call you.

And docs that don't call in the case of cancer diagnoses, get sued and lose.

And a lot of us here would say that celiac is (or is almost) as bad as cancer.

~Laura

I think comparing celiac disease to cancer is not quite right.......cancer is many times worse than celiac disease and you will die pretty quickly from the cancer if untreated. It would take a long time for most people with celiac disease to get sick enough to die from it and they usually die from complications. That's why most people get a call from a doctor with cancer. I know as I watched a friend of mine battle ovarian cancer, I kept thinking to myself how thankful I was to have celiac disease compared to cancer. Considering how sick I was at diagnosis, I bounced back after 6 months and all I had to do was stop eating gluten. I did not lose my uterus, ovaries, half of my colon and the ability to choose whether or not I wanted kids at the age of 21, like she did. Hands down, I'd take celiac disease, with all it's complications, some of which I suffer from, every time.

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I think comparing celiac disease to cancer is not quite right.......cancer is many times worse than celiac disease and you will die pretty quickly from the cancer if untreated. It would take a long time for most people with celiac disease to get sick enough to die from it and they usually die from complications. That's why most people get a call from a doctor with cancer. I know as I watched a friend of mine battle ovarian cancer, I kept thinking to myself how thankful I was to have celiac disease compared to cancer. Considering how sick I was at diagnosis, I bounced back after 6 months and all I had to do was stop eating gluten. I did not lose my uterus, ovaries, half of my colon and the ability to choose whether or not I wanted kids at the age of 21, like she did. Hands down, I'd take celiac disease, with all it's complications, some of which I suffer from, every time.

I agree with that, of course. I'd much rather have celiac. But my point was that some celiacs are as sick as people that have cancer. And some cancers are treatable and some are not. Many celiacs don't get answers or treatment, because it's a different disease process.

For the individual patient, celiac should be treated as seriously as a doctor treats cancer. Just because it's not cancer, doesn't mean someone isn't sick.


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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I've been thinking about this topic a lot since I replied to it a couple of days ago.

I think most people assume no news is good news. For years when I had yearly checkups, I got a letter a few weeks later telling me everything was normal. If something was wrong, like an odd pap smear result, the doctor's office called me.

So I respectfully disagree with the stance that it is the patient's responsibility to follow up and find out the results of the tests. The mere fact that the patient went through an invasive procedure should be an indication to the doctor that the patient wants to know what's going on.

I suspect that some doctors (and non-doctors, too) do not take celiac seriously. And they should. There is a new article posted on the celiac.com home page stating that celiacs are 70 times more likley to get a certain type of cancer of the small bowel.

In any case, it shouldn't matter what disease or condition has tuned up in a test. The patient should be informed.That said, I agree that the patient should follow up if the doctor doesn't. And we should all be asking for written copies of results on all lab work and tests.


Gluten free 3/07 self diagnosed

Specific Carbohydrate Diet 4/08--yes, it works.

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Wow, as clueless as my GP is about celiac and testing, he at least calls to give me results of any tests. I still have to request copies of the lab results, but I at least get a call without an appointment scheduled.


Negative EMA test 8/08

Gluten free 8/08

Positive response to dietary change

Dairy free 3/09

Citrus free 5/09

Allergies: bananas, apples, green beans, mold.

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Wow, would that all of us health care providers had patients like all of you. It is the responsibility of the provider to inform you of abnormal test results!!

If he cancelled his appointment, he should have been either called, or results and literature sent. referrals to dietician should have been made as well.

I am a nurse practitioner, and would not think of letting something like this slip. Granted, mistakes happen, but...

I do, though, appreciate the sense of personal responsibility so many of you show.


Janet

DH diagnosed 4/2003. gluten free (for the most part) since.

Daughter diagnosed Celiac by biopsy after + endomysial and TTG Antibodies 6/08. (7 yo)

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I think the dr is a sob, a poor excuse for a dr anyhow. He probably wanted to be paid for the office call. I thought they all took an oath to do no harm. Withholding a positive celiac diagnosis is definately harmful.

neesee

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It does sound like the GI was acting defensively.......probably had the report in the chart for the day of the planned office visit which was cancelled...may have never laid eyes on the actual report until the patient was in the office in 2008! Offices are run differently, and that one might put results in a chart for same day appointments. I wonder when he cancelled? Same day? Days before? In my office , there is a laminated sign that says" IF YOU HAVEN'T HEARD YOUR TEST RESULTS BY 2 WEEKS, THEN NEITHER HAVE WE..PLEASE CALL"

Charts can be pulled away from clinical areas and if you don't have a tracking system for the results, they can be refiled into the record room until needed again! There are no infallible systems, but patients do need to ask for the test results if they haven't heard in a timely fashion. Subspecialists frequently send a letter of what they plan to do, but don't send the actual reports!! The GP/IM offices chase down results multiple times a day!If the GI's reimbursement was tied to the GP/IM actually receiving the results, well we might not have this problem!!!!!

I hope your husband is doing better now .


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

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It does sound like the GI was acting defensively.......probably had the report in the chart for the day of the planned office visit which was cancelled...may have never laid eyes on the actual report until the patient was in the office in 2008! Offices are run differently, and that one might put results in a chart for same day appointments. I wonder when he cancelled? Same day? Days before? In my office , there is a laminated sign that says" IF YOU HAVEN'T HEARD YOUR TEST RESULTS BY 2 WEEKS, THEN NEITHER HAVE WE..PLEASE CALL"

Charts can be pulled away from clinical areas and if you don't have a tracking system for the results, they can be refiled into the record room until needed again! There are no infallible systems, but patients do need to ask for the test results if they haven't heard in a timely fashion. Subspecialists frequently send a letter of what they plan to do, but don't send the actual reports!! The GP/IM offices chase down results multiple times a day!If the GI's reimbursement was tied to the GP/IM actually receiving the results, well we might not have this problem!!!!!

I hope your husband is doing better now .

We had a similar situation. My son was having severe head pain with very high blood pressure and rapid heart beat. Our pcp sent him for an MRI. We called several times for the results and were told not to call anymore, they would call us if there was anything to report. Ds kept getting worse. We waited from Jan. until Mar. before I finally took him back myself to see what the dr could do for him. Ds was 21 at the time.

I asked the dr for the test results. He told his office girl to look them up. When he came in the exam room, he wouldn't look at us. Finally he looked up and said you need a neurosurgeon. Your son has a very large cyst on his brain.

Ds has a sub arachnoid cyst. It had crushed a good portion of his cerebellum. We were lucky his brain didn't herniate. He had 3 surgeries and a shunt was put in. He is still in pain to this day. His blood pressure is still bad and he takes 100 mgs of lopressor twice a day for his heart rate. He lives on disability.

We should have been informed right away!

neesee

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Yes, I agree. You should have heard as soon as it was known to be a threat to your son. No doubt.


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

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