Getting Diagnosed

So you’ve sat down.  You’ve been on WebMD.  You took Celiac.org’s Online Symptom Checker.  You’ve googled around and you’ve hit an impasse.  It looks like you might have celiac disease — or, at least, you’ve got a ton of symptoms that look like celiac disease.  Though, according to WebMD, it could also be cancer and a 100 other silly things you haven’t heard of.

It sounds counter-intuitive but if you think you’ve got celiac disease, keep eating gluten.  See your doctor.  There is a natural tendency to see if gluten is the problem and just eliminate it.  It’s a simple, straight forward fix.  If you feel better, awesome!  If you want a diagnosis, however…. not so awesome.  The first step to a celiac diagnosis is a blood test.  If you have celiac disease, your body is creating an immune reaction to gluten when you ingest it.  This reaction is detectable in the blood with certain blood tests.  If you stop eating gluten, you stop reacting.  No more blood test.

Please note, “However, it is possible for you to have negative blood test results and to still have celiac disease. Some people have too little of a particular antibody (a condition called IgA deficiency), and require different blood tests to screen for celiac disease. In a few other cases, the blood test results simply don’t reflect the amount of intestinal damage present. Therefore, if your blood tests are negative but your symptoms and family medical history still indicate a strong possibility of celiac disease, you should talk to your physician about further testing.” (Quote from About.com)

If you’re eating gluten and your tests are elevated, the next step is to have an upper endoscopy.  This is a procedure in which you get some sleepy medicine and they put a very thin camera into your stomach.  This allows them to look at your intestinal villi.  Characteristically, the villi become flattened in celiac disease and there becomes some damage in the lining.  The doctor performing the procedure will then take a sample of the villi to review under a microscope as some of these changes may not be visible to the eye until very severe. This is where most doctors will officially diagnose you with celiac disease.

There are some caveats to this and are not specific to everyone.  For myself, I had both an elevated blood test and a endoscopy.  My doctor was difficult to follow up with and I waited a good month for the results.  I also had a colonoscopy shortly after.  My husband had elevated blood levels on a semi-gluten free diet (as I had already been diagnosed) and he did not have an upper endoscopy.  My PCP at the time got both of our samples and felt okay with saying he had celiac.  He got entirely off the gluten and felt a ton better.  My diagnosis was more sick, sick, sick and his was one in which he didn’t really recognize his symptoms as symptoms until they were gone.  We have a great gastroenterologist now that does not push him to get an upper endoscopy to confirm — particularly if we know that it will make him sick.  He gets cross contamination now and is in the bathroom nearly immediately.  Our house is gluten free and we’re living that way already.

I feel like our story really demonstrates the importance of having a great primary care doctor and a great GI doctor.  I’ve heard doctors say that if you don’t have GI symptoms, then you don’t need to be tested for celiac disease.  Current research disagrees with that and there are a multitude of other symptoms that can occur.  I’m an RN by trade and have the benefit of having an inside look at the disease.  I was also a former endoscopy nurse and helped perform the procedures.  I think it would be difficult to advocate for yourself without that additional knowledge so definitely keep pushing for answers if you can’t get one from your doctor.  It doesn’t mean the answer is celiac disease.  It simply means something isn’t right and you need someone to keep looking with you.

Good luck!