If It Doesn’t Walk or Quack Like a Duck, Is It Still a Duck?

Dear readers, this post is going to be indelicate.  It will mention bodily functions.  It is about bodily functions.  So if you have a delicate constitution, or just don’t want to go there, I won’t be offended if you stop reading right now.  However:  It is also about the way we neuro-atypicals are treated by the medical establishment when our body functions go wrong.  It is about the fact that we are pigeon-holed from the word “hello,” according to our medication list, and that we are, through the jaundiced eye of stigma, often the recipients of substandard care.

In a previous post, I discussed a medical aphorism: “If it walks like a duck, and quacks like a duck, then it probably is a duck.”  The simple meaning of this, of course, is that if a person exhibits the symptoms of a disease, then they probably have that disease.  Take, for instance, a case of appendicitis: if the person has severe right-lower-quadrant abdominal pain, with or without vomiting and/or fever, and certain specific signs on physical examination, then that person very likely has appendicitis.  Or migraine: severe one-sided headache, an aversion to light, perhaps with vomiting.  I’m sure you can think of your own examples.

What about Irritable Bowel Syndrome (IBS)?  Conveniently, there are a set of specific criteria called the Rome Criteria, which were developed by the Rome Foundation.  These are:

C1. Irritable Bowel Syndrome Diagnostic criterion*
Recurrent abdominal pain or discomfort** at least 3 days/month in the last
3 months associated with two or more of the following:
. Improvement with defecation
. Onset associated with a change in frequency of stool
. Onset associated with a change in form (appearance) of stool
* Criterion fulfilled for the last 3 months with symptom onset
at least 6 months prior to diagnosis
** “Discomfort” means an uncomfortable sensation not described as pain.
In pathophysiology research and clinical trials, a pain/discomfort frequency of at least
2 days a week during screening evaluation is recommended for subject eligibility.

Bolding is mine, to call attention to the fact that the single overarching diagnostic feature is recurrent abdominal pain or discomfort.

I have reason to be researching this condition, because I do not have it.  I have something else that has caused my intestines to misbehave badly.  I will tell you why I’m bringing this up in a minute.

Now that we have looked at the Rome Criteria (which, as paltry as it is, happens to be the “gold standard” for the diagnosis of IBS), we must consider some factors that absolutely rule it out.  Things that do not walk or quack like ducks.

The biggest, baddest one is unintentional weight loss.  If a person has IBS, by definition they do not lose weight.  Conversely, if they lose weight, they do not have IBS.

Onset in middle age is another factor that calls the diagnosis into question.  IBS generally starts in late adolescence or early adulthood.

But wait: if you have a mental illness, all bets are off.  Listen to this introduction to the subject by an author on Medscape, the physician’s information superhighway:

Irritable bowel syndrome (IBS) is a functional GI disorder characterized by abdominal pain and altered bowel habits in the absence of specific and unique organic pathology. Osler coined the term mucous colitis in 1892 when he wrote of a disorder of mucorrhea and abdominal colic with a high incidence in patients with coincident psychopathology. Since that time, the syndrome has been referred to by sundry terms, including spastic colon, irritable colon, and nervous colon. (Bolding mine.)

And after two-thirds of a page describing the physiologic understanding of the illness, this paragraph follows:

Psychopathology

Psychopathology is the third aspect. Associations between psychiatric disturbances and irritable bowel syndrome pathogenesis are not clearly defined.

Patients with psychological disturbances relate more frequent and debilitating illness than control populations. Patients who seek medical care have a higher incidence of panic disorder, major depression, anxiety disorder, and hypochondriasis than control populations. A study has suggested that patients with irritable bowel syndrome may have suicidal ideation and/or suicide attempts strictly as a result of their bowel symptoms.[2] Clinical alertness to depression and hopelessness is mandatory. This is underscored by another study that revealed that patient complaints that relate to functional bowel disorders may be trivialized.

Let me ask this simple-minded question: is it possible that someone with a debilitating physical illness could develop a reactive depression as a result of having to run to the toilet 10 or 20 times a day, never knowing when the desperate urge might strike?  Is it possible that a person, after being housebound as a result of this illness, might become suicidal?  How about if that person, despite intense suffering without respite or relief, is repeatedly told that there is nothing physically the matter, and it is “all in their head”?

I will give the author credit for the following statement:

“Whether psychopathology incites development of irritable bowel syndrome or vice versa remains unclear.”

The remainder of the section goes on to list a host of physical pathology noted on colonic and small bowel biopsy; this, in spite of the fact that the entire premise of the article is to maintain that there is no evidence of physical pathology in IBS.  Curious, that.

The point that I would like to drive home here, is that anyone with a psychiatric diagnosis who walks into a physician’s office complaining of abnormal digestive symptoms for more than three weeks is going to be labeled with IBS, whether their symptoms match the Rome Criteria or not.  In fact, a recent position statement by a GI professional organization stated that diagnostic testing beyond a simple blood count is unnecessary if the demographics suit the diagnosis and no alarm symptoms such as dramatic weight loss are present:

The 2009 American College of Gastroenterologists (ACG) evidence-based position statement on the management of IBS does not recommend laboratory testing or diagnostic imaging in patients younger than 50 years with typical IBS symptoms and without “alarm features”. Alarm features include the following symptoms and history:[14]

  • Weight loss
  • Iron deficiency anemia
  • Family history of certain organic GI illnesses (eg, inflammatory bowel disease, celiac sprue, colorectal cancer)

While rectal bleeding and nocturnal symptoms have also been considered alarm features, they are not specific for organic disease.

As a physician I find this shocking.  I can think of many possible pathologies that would cause abnormal bowel movements with or without abdominal distress, such as giardiasis, lactose or fructose intolerance, gluten intolerance, hepatitis, pancreatitis, diverticulitis, even appendicitis, that could cause such symptoms.  And given the fact that physicians today rarely lay a hand on a belly, many such problems could simply be written off as IBS.

My feeling is that IBS is simply a wastebasket name for “we don’t know what’s causing it, therefore we will trivialize it.”  Just think about fibromyalgia, and how it was written off for so long as “psychosomatic.”  Now there is a wealth of information about the pathophysiology of the illness; doctors take it seriously and even prescribe medicine for it.  I don’t think IBS is one entity.  I think it is a cheap moniker for a host of different enteric illnesses that have not been adequately described; and on the other hand, it is a convenient way to get rid of a pesky patient who doesn’t have something cut-and-dried like ulcerative colitis or Crohn’s Disease.

Of course I have a personal stake in all this.  Four years ago my immune system crashed.  I got all kinds of weird viruses that you’re not supposed to get in adulthood.  My doctor thought I had AIDS so I had test after test, and after four negative HIV tests they finally decided I didn’t have it.  Then my intestines began to refuse to digest my food.  I lost 30 (yes, thirty) pounds, all the while eating like there was no tomorrow, because I was starving hungry.  My body wasn’t getting any food!  I got vitamin deficient; I developed a rare anemia from lack of folic acid.  I broke my wrist because my bones had become brittle from lack of Vitamin D absorption.  My calcium level was on the floor.  I was in a foreign country at the time, and didn’t understand the language well enough to communicate with the specialists, so many tests went by the wayside.

Being a physician myself (which is not always an advantage when dealing with other physicians’ egos), I put two and three together.  I have had recurrent bouts of bronchitis and pneumonia since I was born.  I had developed malabsorption.  Then I got a nasal polyp, just to complicate matters.

These three items add up to one thing: cystic fibrosis.  At age 55?  I started doing the research.  Yup, it happens.

I got back to the States and cajoled a gastroenterologist into ordering the genetic testing for CF.  Yup. Positive, but in the carrier state.  She sent me to a CF center for a sweat chloride test, which is the gold standard for diagnosing CF.

The test value for absolutely negative is 20.  The value for absolutely positive is 60.  I came in at 58.  Twice, because they couldn’t believe it wasn’t a lab error and repeated it.

They tested my pulmonary function.  I have been a runner all my life, which helps me breathe.  I played wind instruments for 30 years.  I am a singer.  My lung function in 1981 was 150% of normal.  Now it is 110% of normal.  They said I can’t possibly have CF because if you do, your lung function decreases by 2% a year.  Do the math.

In the meantime, one GI doc literally threw a prescription for pancreatic enzymes at me from across his desk, because I was sitting there weeping.  I took them, and magically began digesting my food.  I regained 20 pounds over the next six months on the enzymes. In CF, you lose your own digestive enzymes and have to take them in pills.

Despite all this, when I went back to my GI doc last week for a recheck, she announced that she thinks I “just have IBS.”  I was floored.  I said, What about the fact that taking enzymes fixes it?  She says, Oh, sometimes that can happen.  I said, What about the fact that I have never had any pain?  She made a face.  I said, What about the fact that I lost 30 pounds before starting enzymes?  She snorted and ordered a very invasive and expensive test to look at my pancreatic ducts with an endoscope, and left the room.

Who’s the quack here?

 

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18 Comments

  1. Great post, and it is very often true that anyone with a mental illness gets stigmatised and their complaints trivialized by the medical profession. Even trans people etc are also discriminated. I’m going tweet this because of the good arguments!

    Reply
  2. My doctor has mentioned a few times when I have complained of something that he has to take into consideration that since I suffer from mental illness, there is a good chance that I am a hypochondriac. I find this extremely offensive. I finally told him how I felt the last time I was there and he went bullistic. His ego was exposed so badly that I thought he was going to break a window or something. Otherwise I like him as a doctor but I am a little afraid to go back there. Where I live there isn’t much choice.

    Reply
    • Wow, that is horrible, to be so blatantly pigeonholed by your doctor. I suppose if you gave him my line, “crazy people get sick too,” he might blow a gasket and start throwing chairs. How far would you have to travel to find a different doctor? Or even better (IMO), a Nurse Practitioner, since they are often much more attentive to the needs of real human beings than the egomaniacs in the white coats (and I am an MD myself!)? I have to travel half an hour to my MD, which isn’t too bad. Where I live, there is no such thing as confidentiality, so whatever is on the chart is immediately fodder for pit-pat among the office staff, and from there to the general public. Illegal? Illegal as hell. It sounds like your doctor crossed some serious professional boundaries by having a temper tantrum when you poked his ego a little bit by sharing your feelings about being stigmatized. I am very sorry that happened to you. I hope there’s some way that you can make it to another doctor (I’ve lived out west in very rural places, so I know that sometimes that’s geographically impossible, and the local doctor is king in his castle). You’re very welcome to vent on my blog whenever you need to: this is a supportive community of like-minded neuro-atypicals. Take care of yourself!

      Reply
      • thank you for replying. Change is something that is hard for me and going to a different doctor somewhere else is starting all over again with all of my issues, mental or otherwise. I am trying to see what I can do. Thanks for caring! xx

        Reply
  3. Wow, some doctors are just walking egos. I’m surprised they don’t respect you more since you’re an MD too. It’s amazing mental illness can make some doctors think we never get physically ill too. Maybe some of it is cost? or trying to save time by assuming the diagnosis to be the least serious possibility? I don’t think it’s fair to patients to have to be seen as their mental illness before anything else. I’m sorry you had to go through those experiences with doctors possessing over inflated egos. Are you still taking the enzymes?

    Reply
    • Actually, I think they are walking boxes of insecurity, easily threatened by anything or anyone they can’t control. Being a doctor myself threatens them, so I get treated worse, I think, than the general population. I have even had doctors snigger and sneer at me when they discovered that I am not able to practice due to mental illness! It is SO hard not to wish them ill.

      Yes indeed, the enzymes digest my food for me, so I have to take them, probably life-long. It’s like being a diabetic. I have to take them whenever I consume anything that has protein, fat, or carbohydrate in it. That about covers it 😉

      Reply
      • Geez, that’s lousy. I didn’t realize how prejudiced some doctors can be to their own kind when mentally ill. Seems very unfair to me. I wonder how it is with psychiatrists who become mentally ill?

        Well if the enzymes help you that makes them worth taking. I don’t digest some foods well but am horrible with taking pills. It’s enough to remember my anti depressants in the morning! LOL I’m not the best patient around 😉

        Reply
  4. Tom

     /  April 3, 2014

    I was diagnosed with IBS-D at 22, Im 24 now, i suffer with diarheaa and mucus in stool, and sometimes get dehydrated and feel weak etc.. However I hardly ever have stomach pains.

    I have the same fears of adult cystic fibrosis e.g salty sweat, mucus production, I even got Whooping cough which tends only to be contracted by elderly and children etc. On the flipside I am a large physically fit male, I smoke but dont have many respiratory problems…

    Doctors are always quick to diagnose IBS and I fit into that category but im pretty sure there’s more to my condition, perhaps not CF but maybe something yet to be discovered?

    Reply
    • I’m so sorry you are suffering. More and more I am becoming convinced that “IBS” is doctor-speak for “I don’t know what it is and to tell you the truth, I don’t give a sh*t either.” Keep digging and don’t give up. Don’t let the complacency of “big medicine” put you in a pigeon hole you don’t belong in.

      Take good care,

      Laura

      Reply
  5. Des

     /  August 23, 2014

    I am a carrier of delta F508 and have all the symptoms you mention. I have extremely low lipase and amylase levels, severe diarrhea, sinus and respiratory infections, salivary gland stones and a family history of bipolar. They’ve sent me to specialist after specialist and done all sorts of terrible tests but never been able to help me. Take fiber is the only advise I get. Recently I thought of the CF connection. We do only make half the CFTR protein right?
    Did you ever win this battle? I’m about to plunge in–yet again.

    Reply
    • Hi Des, sorry for the delay in answering. I feel bad, because I know that every day, every moment with this terrible illness is a nightmare.

      If we are a carrier of delta F508, allegedly we are supposed to be asymptomatic, but as you and I and, I suspect, many other “IBS” sufferers experience, it ain’t necessarily so. What the delta F508 gene does is to make a chloride transport receptor (CFTR) that regulates the passage of chloride ions into and out of ALL cells. So it’s not just a localized phenomenon. It affects ALL body functions and processes.

      Have you had a sweat chloride test? If that’s positive, then you’ve got a diagnosis: CF. If it’s intermediate, that doesn’t rule out CF.

      While I find having a diagnosis validating and comforting (even though the “experts” finally decided that I don’t have CF), the main thing is finding SOMETHING that gets rid of the diarrhea/malabsorption/malnutrition.

      That something is Creon, which is micro-encapsulated pig’s pancreas (yuck). It contains ALL of the enzymes your body needs in order to digest your food. It was literally THROWN at me, as I sat in a gastro’s office bawling my eyes out and getting snot all over the place. As in, “Here, take this prescription and get out of my office. If it works you can have all the refills you want, and I don’t need to see you anymore.”

      It worked! I went from having up to 14 bowel movements a day to one or two. They were still yucky, but hey, I’ll take that deal!!!

      And here’s some even better news: a few months ago my Medicare prescription plan hit me with a $1500 copay for my Creon. Now, I always keep a 3 mont backup supply of everything, because I’m paranoid and in case of national disaster I don’t want to be stuck without my meds, especially my Creon because I literally nearly died before I got it. So I had plenty around, enough to give me time to get the finances figured out.

      But I wanted to make an experiment: after four years on Creon I wanted to see what would happen if I didn’t take it. The worst thing that could happen is I’d spend a miserable day in the shitter. So I stopped.

      Miracle. That’s all I can say! Miracle! I now have normal poops, just plain normal! I have lots of enzyme deficiencies, like zero lactase, which means that if I ingest even the tiniest amount of lactose (check your pills!) I get horrible gas and explosive diarrhea. Fructose intolerance, so I have to be very careful with the fruit. Berries usually work out OK, but sweet fruits send me to the loo for a day or so.

      How the heck did this wonderful thing happen? My theory is that my small intestine took a hit when I got Cytomegalovirus in 2009, and since I am borderline on all the CF tests, I bet the infection just tipped my borderline-working digestive system over into non-working. I think the Creon not only took over the job of digesting my food (yay!) but also gave my poor intestines time to heal so they could take over the job once again.

      Now, about insurance, or non-insurance: Creon is VERY expensive (on the order of $4000/month) and there are several organizations that will get you your meds while you deal with getting an over-ride, prior approval, etc., but all of it will ride on your Sweat Chloride test and your documented enzyme deficiencies. If you have a cooperative gastro doc (hah!) the whole thing will be easier because they have the power to give you a special discount card from the makers of Creon. Also look at the official Cystic Fibrosis Foundation’s web page for more sources of assistance.

      Please keep me posted on your progress with this! I really want to know how you do on Creon. I suspect it might help you a lot.

      Blessings for a complete recovery!

      Laura

      Reply
  6. Sarah

     /  February 22, 2016

    Hi I stumbled across this website and have very similar issues for the last year. I’ve also been slapped with the label of IBS because I’ve had gad for ever. I’m 25 years old and now can’t work because of pain from my abdomen and diaherria when I eat anything. My question is as someone who is not a doctor how the hell do you get them to test you for cf. Because it’s really the only thing that makes sense. I went in one month last year from my normal to bam symptomatic. They’ve tested for ever infection under the sun and most every cancer/immune disorder. The only thing that came back inconclusive is lymphoma b. So I’m pretty sure I have cf I just have no idea how to get someone to believe me.

    Reply
    • That has to be so frustrating! I went through a lot of humiliation by so-called “doctors,” even after my positive sweat test, because my lung function was better than normal (I’m a singer, so duh). My approach to getting tests that my GP might not agree with is to say, “I really have a strong feeling that this test might be helpful in case I might have this disease. Could you please humor me and do the blood test for the CF gene?”

      One caveat is that there are several CF gene mutations, but the delta F508 is the most common. The definitive test is the sweat chloride, so some docs go straight to that. It just depends on your health care system.

      Two things you can do before going the CF route is to try an elimination diet, first cutting out all dairy (read labels!) for a week. If your diarrhea gets better, then you have lactose intolerance. Next, cut out all sources of fructose (fruit sugar), meaning ALL fruits and all foods sweetened with fruit sugar like grape juice, which is commonly used in “healthy” foods. Remember that tomatoes are a fruit. Fructose intolerance is common and can come on suddenly. If neither of these fix your problem, cut out gluten. That means no wheat, rye, spelt, barley, regular oats (there are gluten free oats on the market), beer, and anything else made with the above. You really have to read labels closely, because many processed foods contain hidden forms of gluten.

      If none of this works, you have more ammunition to bring to your doctor.

      After taking enzymes for four years, I went very strictly gluten free, and I take lactase enzyme with any dairy product (I still don’t drink milk at all), and my diarrhea is COMPLETELY fixed. So here are things you can try at home, and if one works, yay! And if not, then you can proceed with the CF workup.

      The other things that crop up at your age are Crohn’s Disease and Ulcerative Colitis, so if the dietary measures don’t work, you really should be tested for those, unless you have lung problems that would point more strongly to CF.

      Hope I haven’t overloaded you with information! Good luck, and let me know how things turn out.

      Reply
  7. Thanks so much!

    Reply
  1. Of course it’s all in my head. « The Life You Save May Be Your Own

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