My day.

Today is prep day. All day. I’m not happy about it but I am happy about what we may learn. I have a repeat colonoscopy and endoscopy tomorrow.

Colonoscopy

I’m not really concerned about the colonoscopy, although I probably should be. It will be my third. In my first colonoscopy about 5 years ago, they found a serrated adenoma in my colon. A serrated adenoma is typically a precursor to colon cancer. Something I should probably worry about. At the year follow up colonoscopy, they didn’t find another polyp. Now, three years later, we have to look again. Here’s a study on the particular type of polyp I had, follow up interval, and cancer rates.

The prep for the colonoscopy isn’t terrible. I’m really used to having diarrhea. I guess for the folks that aren’t used to it, the prep is awful.

I have my clear juices, Sprite, Jell-O, and baby wipes. I’ve also learned that the less I do – like cleaning or shopping, the better this goes. I also have a very cranky pre-teen so it will be a good day.

Endoscopy

But the bright spot in all of this is the endoscopy. This will be my fourth endoscopy. One in 2014 and one in 2017. In 2014 a year after I started a gluten free diet they could tell there was healing, but I was still a Marsh 3b. In 2017, I was a Marsh 3a.

I had an endoscopy during the Nexvax trial in 2019. I got the initial report from the procedure, but could not get the pathology report. The only information I got was when they published the results from the endoscopy studies in general. Here is a link to what they published. The bottom line is greater than 60% of those reporting a year of a strict gluten free diet showed enough damage to qualify as Marsh 3 or higher. Here is what I wrote on Marsh scores.

The best part was when I showed him the results of my Nexvax endoscopy, he said, “Oh the report looks good.” I said, “Yes, but we both know that celiac damage isn’t always visible to the naked eye.” He said yes and we moved on to the next topic.

Now, for me, the question is…is there still damage? If there is still damage, what do we do? Would I be considered to have refractory celiac? Things get a little more complicated.

I hope to get some answers and a plan for moving forward over the next couple of weeks. Otherwise, wish me luck and eat some gluten free goodies for me today!!!

Here’s a pep talk for you if you need it!

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