Friday, May 21, 2010

The Three Kinds of Celiacs

I originally started to write this entry, titled "The Two Kinds of Celiacs," and then had a Monty Python Spanish Inquisition sketch moment, if you know what I mean.

It seems like I largely meet diagnosed Celiacs who roughly fall into one of the two categories:  1) learned about the disease on their own through research, collecting information from family members, and presented this to their healthcare provider begging for the test, and for answers about why they feel sick all the time, or 2) after prolonged illness, misdiagnosis, and having to almost die in the hospital, as a last resort, some doctor, as a last ditch effort, gives a celiac test, which turns out to be positive.

In the first category, most of us who did this met were dismissed as crazy by doctors, were refused the test, or in some lucky cases like mine, were listened to and given the test.  I've heard stories that relatives of diagnosed people would save all their money to go in and see a doctor to ask for the test and be refused, being told that Celiac Disease is a rare thing (1 in 133 is rare???????).

The second case is far more tragic, I think.  My heart goes out to those people.

In both cases, doctors have failed.

For people like me, the doctors over the years who just told me I was tired because I didn't exercise enough or that I needed to take iron pills, or the dentists who told me I should just stop eating candy and drinking sodas--all failed.  Failed to see the real thing that was going on, that I had a very common condition called Celiac Disease, and for me, the very staple of our diet, wheat, was killing me slowly.  I felt horrible all the time but people just thought I was lazy, because I was so tired and lethargic.

In both cases, the two groups have been failed by the US Medical system, because people are not routinely tested to rule out Celiac.  And if we were tested, many of us could avoid our related conditions altogether, like autoimmune disorders of the thyroid, neuropathies and ataxia, etc.  The conditions that once acquired, cannot be reversed.  I think that's a tragedy, and a crime by doctors.

The third type of Celiac is the undiagnosed.  Especially I am thinking of the people who are related to us, the already diagnosed.  Those undiagnosed people who refuse to be tested, despite the fact that there is a genetic link.  Doctors especially fail these people when they do not insist they be tested.  It seems like all of us have them in our families.

When someone says, "I have cancer," no one says, "No you don't.  That's not a real illness."

I hope that someday there is only one kind of American Celiac.  The one who is diagnosed early by way of routine screening, as a child, who successfully eats a gluten free diet and lives a long and healthy life.


  1. No, wait, Four Kinds of Celiacs!

    The fourth is the newest and growing group, who were diagnosed by physicians who are up on the latest about how common Celiac disease really is, and were tested before they became very sick.

    I'm excited to see this group of people growing in number. That means all we are doing to create awareness must be working. Hooray!

  2. Amen. As a celiac mom with two celiac kids, we've been through all of this. The dentist who thought my kids were fed candy and soda(we were a crunchy organic family) and I needed to be a better mom and feed them better, to the child nearly dying and me begging for the test several times in the hospital, to the cousins who show signs , but don't get tested.....

  3. Now we need to figure out how many celiacs it takes to screw in a light bulb....

  4. Ha ha Allison! would it be None, they are all busy complaining about their doctors?