Testing Testing 1,2,3 - Take 1

 Diagnosing
Are you familiar with the ways in which gastroparesis is diagnosed?  The "gold standard" is the gastric emptying study, also known as GES.  By eating food that contains a small amount of radiation, images can be taken to trace movement and the amount of time in which food takes to travel through the stomach.  The trouble with this test is how much it varies from place to place.  Some last 2 hours and others 4.  Different foods may be served, fasting times may vary with 12 hrs being typical, some are requested to stop medications for 24-48 hrs and others not.  I was introduced to this this study in 2008,  first a 2 hr test with oatmeal and an egg, second was a 4 hr test using a whole egg with white (wheat) toast.  Both showed a majority of the food remained in my stomach.


Another common way of looking at the motility of the stomach is during an upper endoscopy, where the gastroenterologist can view, through a tiny camera at the end of a scope, any abnormalities of the esophagus, stomach and small intestine.  The procedure is fairly painless and patients can go under anesthesia while it is performed.  The benefit to this test is that it can look for blockages and/or bezoars (solid collections of undigested foods) in the stomach and possibly remove or dissolve them.  The last time I had this done was in 2010.  I was told the stomach muscles were not contracting at all during 5 minutes of observation.

To learn more about diagnosing gastroparesis here are a couple of good links:
http://www.digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/#4
http://www.mayoclinic.com/health/gastroparesis/DS00612/DSECTION=tests-and-diagnosis

1,2, 3...
Over the years I've undergone many tests including colonoscopies, upper endoscopies, food allergy testing (positive to gluten), breath testing, thyroid, and numerous blood tests.  Now the testing flood gates are once again open and oh boy, are they pouring down on me.  I'm not sure how far I will go but I don't think curiosity ever really killed the cat, right?  Plus, the last thing I want is to be on TPN forever and though I can still eat, my GI doctor (Dr. M) and I both want to try and get an idea of what might be going on.

1. GES - Over a week ago I went in for the lovely radiated egg breakfast, with gluten free toast I might add, and images were taken over the next 4 hours.  The radiologists was laughing at me as I curled up on the couch, tuned into The View on TV (something I never take the time to do) and worked on knitting a hat to donate to my friends fundraiser.  He said his daughter would be doing the same thing.
It wasn't exactly unpleasant but I didn't like the idea of eating egg whites that actually came out yellow (hmmm...) and brick heavy toast, all in 10 minutes.  If you know me, I usually take 30-60 minutes on a meal, making sure to chew, chew, chew and giving it time to settle.

A few days ago the nurse called to report to me that the study actually came back normal.  HUH?  What does this mean," I said.  Why does food hurt and cause my stomach to spasm half the time and make me so full?

Well, for one, Dr. M had me take the test with Domperidone, the motility drug that helps food to move through the stomach.  I have been on this for 4 years now and notice symptoms are worse when trying to go off.  He wanted to see how well the medication was actually working.  In addition, I personally don't think the test is close at all to a "normal" meal.  In fact, it's a meal that should move through the stomach rather quickly due to zero fat and fiber content.  What do you think?  I can see how those with the challenge of vomiting food might have more of a problem keeping this down.  There are so many spectrums of GP, it's really hard to predict how each person would react to this meal.
Next step is to repeat the test, this time off domperidone for 5 days prior.  That is scheduled 8 days from now.

Second, he wants me to do the sitz marker test.  This is a pill taken that has "markers" in it and will show up on an x-ray throughout the entire digestive tract as the pill moves along.  I will go in 5 days later for imaging to help get an idea of how well the intestines are working.  You can learn more about this study here.

The third test is another repeat of the SIBO breath test.  I want to make sure this is clear to check it off the things to treat.  If not, then I know the protocol to take care of this.  SIBO can show many of the same symptoms as GP and I truly believe this should be a standard test in all GI clinics!  In the past, taking xifaxan for 2 months and following a low-FODMAP diet did the trick.  I still follow the diet which keeps the bloating significantly down with much less pain than before.  Type in "SIBO" or "FODMAPs" in the search box on the upper right side to learn more.

Other tests I'm looking into include seeing a neurologists at UW for mitochondrial testing (suggested but pretty sure I don't have) plus DNA stool testing through Metametrix.  The latter I am waiting on the doctor to order.

As time goes on I will post updates and share these experiences.  If you have been through similar testing feel free to comment and share your stories below or on Facebook.