I’ve talked a lot recently about some of my greatest fears. Most of them do not involve the current virus pandemic, but more along the lines of an out of control celiac disease ravaging my body. That might be an exaggeration, but despite a strict gluten free diet, I don’t think things are going well for me. So, I went to the doctor and we had a chat.

I scheduled the appointment several weeks ago via their online portal. I think I even scheduled the appointment before the world stopped. I honestly, didn’t even know I had the appointment until I logged into the portal to schedule the appointment I really wanted to make.

Just a little background, my daughter had to go to the pediatrician for her 11 year old shots. My pediatrician and I were diagnosed with celiac at approximately the same time. She has had a complete recovery and mine has been less than stellar. The pediatrician suggested I go to the GI and have a chat and maybe I need to go to a celiac center for some additional help.

Anyway, back to my serendipitous appointment on Friday, I went to the office. The normally bustling waiting room was empty. I checked in and paid my copay. I was writing my list of questions, when the nurse called me back way faster than ever before.

In the chat with the doctor, we discussed what had been happening over the past two years since I was there the last time. He looked at my bloodwork from the vaccine trial and a quick glance at the endoscopy report showing all was normal. I said I think I have refractory celiac – my gastrointestinal symptoms have gotten worse in the last few months and we need to start looking at that. He said that the endoscopy shows normal. I said yes, but you and I both know that means nothing and that the only thing that matters is the biopsy and I cannot get those results.

Then we discussed the quality of my poop – which I will not torture you all with. But in our discussions we talked about the potential for the pancreas involvement in severe celiac disease. He said that we could do a whole bunch of stool studies or I could try the medicine to help. I’ve done some stool testing and my stool is always pretty fatty. He offered a drug for exocrine pancreatic insufficiency. I said it couldn’t hurt to try.

I didn’t know pancreatic involvement in celiac disease was a thing, but it seems that there is significant research regarding the pancreas and celiac disease. Here is just one article. I know we’ve all seen the ads for pancreas exocrine insufficiency. I thought it was a bunch of hooey. Here I am now trying the medicine. Who knew?

We then discussed a repeat colonoscopy because I’ve had some pretty gnarly polyps removed and goodness knows I don’t need colon cancer. Or maybe a colitis could be the cause of some of my gastrointestinal distress. At the same time we will have a repeat endoscopy looking for signs of refractory celiac disease. So, in late June, I get all of the joy of a day of colonoscopy prep and a great nap the next day!

They also took 5 vials of blood for a variety of tests including vitamin status, celiac panel, and other blood tests.

Overall, it was what I expected. I didn’t expect him to say, “well of course you have refractory celiac disease. Here is some medicine for the magical cure.” I think I just needed to create a plan to move forward and execute the plan. It isn’t the magical answers I was hoping for, but it is the next step in this frustrating process.

As an update to the EPI medicine I’ve started, you take the medicine with every meal and snack. It is sort of a pain to remember. Since I started taking it, the massive amounts of daily diarrhea seem to have stopped. I started Friday night and it is only Monday. We will have to wait and see what happens but so far so good. Yay!

Right now, the goal is to not receive a phone call from the doctor’s office. It is never good to receive a phone call from the doctor’s office after being there. They never have good news in that situation.

I am still going to call a celiac center to schedule an appointment to get some more information and have someone review my records. Maybe take a look and offer some additional insight. I would like someone to put this nagging feeling of impending doom out of my mind.

Anyway, thanks for reading. I know that I am constantly thinking about this celiac thing and can wind myself into knots – Am I gluten free enough? Is this symptom cause for alarm or is it nothing? What are the long term consequences of undiagnosed refractory celiac? Why isn’t my system healing? Will this lead to an early death? All of it. Again, at least now I have a plan to move forward to figure this thing out.

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