Heather Abel: Are Doctors Missing Key Diagnoses?

Posted by Kendall Harmon

THE YEAR I was diagnosed with celiac disease, I wrote the following on a page of my journal: "Relafen, Famotidine/Pepcid, Lorazepam, Cyclobenzaprine, Vioxx, Vicodin, Soma, that steroid: forgot name, Celebrex, Valium, Prevacid."

The analgesics were for arrows of pain shooting from the nape of my neck to my fingers. The stomach soothers were for a constant, low-level ache that doctors diagnosed as irritable bowel syndrome. The Valium was for, as one doctor explained, "a certain anxiety you seem to have about your body." I kept the list in case a doctor might ask me what medicines I had taken.

None ever did, despite the fact that I spent many afternoons waiting in doctors' offices hoping to learn why I felt so sick. Many times while I sat in the waiting rooms, young, blow-dried women carrying briefcases with poetic names of prescription drugs embossed on them bypassed me and went directly into the doctor's office. I frequently returned home from my visits with jewelry-sized boxes of the same drugs. "Start with these free samples," the doctors instructed me. "Try them for four days, and call if you want a refill."

Later that year, my stomach pain reappeared in greater intensity. During the previous six years, I'd driven myself, screaming, to emergency rooms for treatment, and doctors had sent me home with samples of Prevacid and leaflets on irritable bowel syndrome. But my new doctor decided that my diet of Celebrex had caused an ulcer, so she abruptly took me off the drug and put me on a regimen of antibiotics. When this produced migraines, the doctor prescribed Ultram, which caused, as the side effects warned, dizziness, sleeplessness and anxiety. I was up for three consecutive nights until the doctor gave me Klonopin. It took me years to get off this soothingly addictive drug.

I never had an ulcer. I never had irritable bowel syndrome.

I have celiac disease. I was 30 years old before I knew this — and I was lucky. About 97% of people with celiac are undiagnosed.

Jerome Groopman's widely acclaimed book, "How Doctors Think," opens with an episode similar to mine. Anne Dodge consults nearly 30 doctors for her increasingly debilitating gastrointestinal symptoms, which include nausea, vomiting and diarrhea. She is diagnosed with anorexia and irritable bowel syndrome. After 15 years — and severely malnourished — Dodge finds a doctor who does something different. He observes her manner and listens to her — and diagnoses celiac disease. He saves her life. Groopman concludes that doctors must pay more attention to patient reports and resist the temptation to dismiss poorly understood complaints as psychosomatic.

Read it all.

Filed under: * Culture-WatchHealth & Medicine

Posted May 27, 2007 at 3:10 pm [Printer Friendly] [Print w/ comments]

1. Tom Roberts wrote:

Coeliac is one of the most undiagnosed conditions as it really isn’t a disease. You can’t catch it any more than you can catch epilepsy. But if you have troubles digesting wheat products, it can be tentatively diagnosed with a fairly simple blood test. Definitive diagnosis takes a biopsy of a small patch of the upper intestine.

The happy thing is that once diagnosed it is completely treatable in all but the worst cases (where untreated it can lead to bowel cancers). You just can’t eat wheat, rye, and some other glutin containing grains.

And you get funny questions like “If you can’t eat wheat can you eat bread (or spaghetti, etc)?”

The article has one gaffe: “This is beginning to change. U.S. researchers increasingly report that celiac disease is as common here as in Europe.” Being a genetic condition, virtually anybody with Norse genes in them is a possible carrier of this recessive gene wherever they live. The Norse or Scots seem to have been somewhat immune to the condition in their own lands due to their crops being weighted away from wheat and rye, and towards barley and oats.

May 27, 4:40 pm | [comment link]
2. robroy wrote:

Having one brother with this and being a physician, I can tell you that delayed diagnosis is the rule. There are diseases that are masqueraders that it is just bad luck to have. Most people with headaches have migraines, not brain tumors, etc. The good news that the time to diagnosis of celiac disease is decreasing because of greater awareness. It does mean a huge lifestyle change. Wheat gluten is everywhere.

May 27, 4:56 pm | [comment link]
3. drjoan wrote:

Isn’t celiac disease one of the conditions included in newborn blood screenings?  At least in the state of Oregon, babies are screened for several different conditions (PKU, maple syrup urine disease, others) which are generally treatable if caught early; they are usually treated with diet.  I had thought celiac disease was one of those screened for.

May 27, 6:13 pm | [comment link]
4. Tom Roberts wrote:

#3 No, as the screening only comes up positive when the individual is ingesting wheat products. My kids were taken off gluten for a year to see if they improved and the screens came back negative, and then got put back on for 6 months so that when the screens were done they came back positive. And finally they did the biopsies to be sure.
We found the diet not so hard except that you end up cooking from scratch a lot. Wheat and its byproducts are everywhere, with such weird examples as one type of Cherios having wheat starch and the other not. You end up patronizing organic foods stores that I would never dream of going to otherwise.

May 27, 8:21 pm | [comment link]
5. Capn Jack Sparrow wrote:

First, the presence of drug reps has absolutely nothing to do with delayed diagnosis of celiac disease, or any other disease. Some doctors are more aware of this diagnoses than are other docs. It pays to choose a doc who is thorough and has an interest in such things. Mostly, drug reps waste our time. However, they do leave samples which we give away to people who can’t afford their medications.

Second, many patients who have similar symptoms to this articles sufferer see doctors at top medical centers, have multiple tests and are never diagnosed with a treatable condition. There are limits to medical science and the knowledge available within the medical community at a given point in time. This is a fallen world with real diseases which will ultimately will kill us all. It is not the fault of doctors or drug companies that she has celiac disease or that her diagnosis took a while to make. At least she did, eventually, get diagnosed.

Doctors want their patients to feel better, or at least cared about. I’m no fan of nerve pills or addictive drugs for patients with symptoms that I can’t explain. I can tell you, though, that many patients WANT these pills and get angry when they are not prescribed. For alot of patients, especially middle aged or older, the prescription for a pill carries almost the same import as being annointed with holy oil or seeing the witch doctor. A big, big part of healing is the symbolism of caring. In our society, the prescribing of pills is a highly symbolic act and for many patients a sign that the doctor cares about them. For these folks, to leave the office without a prescription is a sign that the doctor did not care about you or didn’t take your complaints very seriously.

Finally, the movement back toward whole and fresh foods of unprocessed variety is more than just a fashion statement. It is common sense. Yes, it costs alot more, but I think in a society as wealthy as ours, it would be better to choose to eat fresh food over buying that new entertainment center or the bigger house. It’s especially sad to see my poorer patients struggle financially and being forced to buy poor quality cheap food. That’s part of the downside of urbanization and the loss of local food sources and the gardening tradition.

Thanks for this article, Kendall

May 27, 11:16 pm | [comment link]
6. libraryjim wrote:

I think also that doctors can only treat a patient to the extent that the patient tells the doctor what is wrong.  How many times will the doctor treat a patient who just says “I have bad gas, doc” but doesn’t go out of his/her (usually his—men are reluctant to admit weakness even to a doctor) way to tell the full symptoms?

Of course, the doctor should be asking more questions, but the patient is also responsible for answering truthfully.  (I know, the doctor also is pressed for time, and too often just accepts the patients response and prescribes extra-strength TUMS without delving further). 

But I think it a two-way street, anyway. Doc can’t treat what he doesn’t know about.

May 29, 6:14 pm | [comment link]
7. JonReinert wrote:

Interesting discussion my wife while not a full blow coeliac, has a definate gluten intolerance.  We manage this by simply avoiding all Gluten, even communion wafers.  I was interested to read of the ethnic link, however I feel a more likely cause of the increase in numbers is the selective breading of high gluten wheat for the noodle market.  As a parish priest (now turned chaplain) I worked in the wheatbelt and often spoke to farmers who were desperately trying to raise the gluten content to attract a premium price for their crop.  Modern wheat varieties have a far higher gluten content than traditional types.  I saw a vivid example of this with a row of loaves of bread baked with increasing gluten contents. The lightest and fluffiest loaf had the highest gluten content.

The increase in Coeliac disease is another example of the unintended consequences of manipulating the make up of our foods.

June 1, 1:26 am | [comment link]
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