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Connie Shedlock

What Would You Do?

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I second all those who think this "professional" is a poor excuse for a doctor. I have absolutely no respect for the medical profession in general, but do withhold and then freely give my admiration and love for those select few who practice the fine of art of giving a damn.

In fact, the majority of docs I have dealt with were down right insulting in their own magnificence. It is more than unfortunate that physicians are released into the marketplace with more ego than experience.

Before my wife was "officially" diagnosed with Celiac in November 2007, she spent many years being told nothing was wrong with her, and what's more infuriating, when my wife finally suggested celiac to the many specialists she was referred to, based on her own personal study and diagnosis no less, at least 4 physicians outright dismissed her suggestions as nonsense! ...despite the more than OBVIOUS list of growing and GLARING symptoms, which easily presented as gluten-intolerance! ...even more infuriating, they outright REFUSED to screen for Celiac!

Ultimately, it is "we the people" that need to wake up, and not drop our trousers every time an M.D. says bark! We continue to perpetuate the blustery egos of these kinds of doctors, when we do not insist on being acknowledged. Thankfully, a caring nurse practioner/PA took up my wife's plight and lead the charge to get an official diagnosis, even after she herself was dismissed by the specialists she worked with.

I also second all those who think it unspeakably irresponsible not to inform a patient of negative test results! I am incensed ad nauseum at the excuses people make for someone else's excuses.

I affirm the notion that pre-diagnosed Celiac can be as confusing, painful, frightening as cancer. My wife "knew" in her heart for over 6 years that she must have cancer. And the emotional trauma of being told time after time that nothing was wrong with you, while you felt you were dying is pain at another level altogether. For those that poo-poo the comparison, you are have either not experienced the depth and damage of all celiac symptoms or you have forgotten. It wasn't until my wife was at near-death levels that we finally got a professional to pay attention. Obviously (and thankfully), once the Celiac diagnosis did come, although bittersweet, it was much better to deal with than cancer. But up until the final months of pre-diagnosis (a journey that took lasted 12 years), conditions were very grim, and the burden of not knowing why you were "dying" would welcomed a diagnosis of cancer. You see, at least there would be the peace of "knowing".

In any case, there was no follow up appointment needed or scheduled for my wife's good practitioner to track her down by phone to report the results of the serological tests, showing all the positive markers for celiac.

A biopsy was scheduled to confirm diagnosis. Again, no followup appointment was needed or scheduled, and my wife's practitioner tracked her down again on her cell phone to give her the results: She was positive for Celiac Sprue.

Thank you, thank you, to all you physicians who take your oaths seriously. Shame on the rest of you who are either lost in your own self-importance, or who are so de-humanized that you don't care anyway.

My wife's life was saved by a practitioner who not only had the courage to protest and refute the thoughtless opinions of inneffective specialists by insisting on running a simple blood panel, but who also knew how to use a telephone.

Travis Hiland

Wife diagnosed with Hyperemesis gravidarum with accompanying dehydration/malnutrition during 2nd-4th pregnancies 09/1995-04/2003

Wife misdiagnosed for 12+ years with IBS, Depression, Anxiety, Gastroenteritis, Anemia, Chronic Fatigue

Wife begins to seek medical help after years of chronic gastrointestinal problems 02/2002

Wife's first Endoscopy performed WITHOUT biopsy! No results 03/2002

Wife diagnosed with Severe Iron Deficient Anemia 06/2003

Son diagnosed with Diabetes 05/2006 at 3 yrs old

Wife Positive Blood Test 10/2007

Wife Positive Biopsy 11/2007

Daughter shows possible antibody markers 03/2008

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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?

After having a similar thing happen to me three times I now ask for a copy of labs to be sent to my house.

granted that sometimes leads to me being paranoid but at least I do not lose results.

one more mile

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