How Reliable is a Diagnosis?

[tex]

Here is a perfect example of why I don't believe we can ever be 100% sure of a diagnosis:

There was an article in the Wall Street Journal, (page R6), on March 20th, written by David P. Hamilton, a staff reporter for the WSJ San Fransisco bureau, in which he described his own personal search for a correct diagnosis. The title of his article is "Unsolved Mystery".

His symptoms were the same as those that most of us are so familiar with--diarrhea, aches and pains, occasional nausea, etc. He also had fever, initially. At first he thought he had the flu, but after it initially resolved, and then came back, worse than before, and refused to give up by itself, he sought medical help. After his doctor found no clues in a panel of blood tests, and a screen for parasites, he was referred to a GI. After initial tests, which ruled out bacterial and viral infections, the GI suspected either Crohn's disease, or celiac sprue.

During a colonoscopy, the markers of collagenous colitis were found, and so the doctor prescribed an oral anti-inflammatory drug, (which was not specifically named in the article), which did nothing to resolve the symptoms, (except that it made his pulse race, and his muscles ache).

A week later, he had an upper endoscopy, which resulted in biopsies which revealed erosion of the villi in his small intestine. The GI decided that rather than CC, the correct diagnosis was celiac disease. At this point he was down about 35 pounds, and basically living off canned "nutrition drinks". His wife was a good cook, so she decided that everyone in the household would follow a strict GF diet, in order to simplify things. Since he knew that the literature suggested that it would probably take several weeks at least, to start seeing results from the diet, he was absolutely amazed to find that he started feeling much better after only one day on the diet. Within a week, he was gaining weight again, and seemingly back to normal.

His GI didn't seem interested in helping him to learn more about his condition, in order to try to avoid any future complications, so he turned to Stanford University, which had just opened a new celiac-disease clinic in January. The Stanford doctors naturaly wanted to confirm the diagnosis, so they reviewed his original biopsy slides, and did some more blood tests, then did a follow-up endoscopy.

In August, they decided that he didn't have celiac disease, after all, based on these two facts:

1. He did not have either of the two common celiac genes

2. The original small intestine biopsy didn't show any infiltration of the villi with imune-system cells

The Stanford doctors told him to resume eating a normal diet, which he did, though his first few weeks were filled with anxiety, and fear of getting sick, again. He didn't get sick again, so the Stanford doctors are now convinced that he does not have celiac disease.

The article made no further mention of CC, or MC, so apparently no one thought that issue to be worthy of further consideration.

The remaining problem, of course, is that no one knows what was wrong with him. He was referred to another specialist to try to track down the problem, but he was so tired of being poked and probed, that since his symptoms were all gone, he just said to heck with it, and never pursued it any further. That's a heck of a note, of course, since the medical profession might possibly have discovered some valuable information if he had chosen to follow up on it.

The fact that his diagnosis went through so many metamorphoses, though, bothers me a lot, (as it obviously bothered him). At what point does someone in a situation like that decide that a diagnosis is correct? His pattern of evolving diagnoses reminds me a lot of the old joke about Texas weather--"If you don't like the way it is now, stick around a few minutes and it will surely change".

His final conclusion was that he probably would have been alright on his own, if he had just waited long enough.

My opinion is that he has CC, and is in spontaneous remission, (initiated by the GF diet). The medical profession still has a lot to learn about microscopic colitis.

Tex

[starfire]

A rather discouraging story, don't you think. It's too bad that all doctors don't follow through on persuing the "truth". I can forgive them for being misled but when proven wrong, they should follow a different lead.

Love, Shirley

[kate_ce1995]

I agree with your diagnosis Tex. I went through that and don't have major symptoms even after several ingestions of gluten. Of course after two or three days in a row, I know it, but it still takes a couple more for me to hit bottom so to speak. Probably because I try to be good in between.

Poor guy. Maybe someone ought to email him the link to our site and say, you're not crazy.

Katy

[Peggy]

It's not a wonder so many of us have a difficult time putting faith in the medical profession....

[tex]

Katy,

Good idea. I took your advice and sent him an email, which included a link.

Tex

[thedell19]

Hey Tex-

Interesting story. Is he still on the GF Diet? I surely hope when I go on my diet I will have this kind of luck!

[tex]

Andrew,

No, the Stanford doctors talked him into dropping the diet, when they decided that he didn't have celiac disease. That was last August, and apparently he is still doing ok, (as of March 20th, anyway).

Tex

[annie oakley]

Thanks for the read....that was interesting Tex. Maybe he will join us here at our home.
Love Oma