I thought yesterday a bit about how sick I am. If you ask me, for the past year I would say I’ve been doing pretty well. When I ask my kids if I’m sick a lot, they will say emphatically, “Yes. Mom, you are sick all the time.”

Why is there such a disconnect?

I guess I’m sort of a suck it up kind of gal. If I am sick, I try to continue on with my life and not let it interfere too much. If I have diarrhea, which is my main symptom, I guess I have it often enough it doesn’t bother me. When I ask others how often they have diarrhea, they tell me they never have diarrhea.

Before my diagnosis, I was riding with my sister from my mother’s house to my house. It was about a two hour drive. In that two hours, we had to stop 5 times for me to be sick. Instead of anyone telling me that it was not normal to have to poo that often, they just thought it was my normal. It seems there was a long conversation within my family about my unusually active bowel habits without my knowledge. I’ve got a few other stories like this where my overly active bowel habits were discussed without my knowledge. I sure wish someone had talked to me.

There is an ad for an ulcerative colitis drug. They show the person missing life events because they are in the bathroom all the time. I guess that was my issue.

Constipation

For me, I don’t have constipation. I’ve never, ever, ever been constipated. I cannot even imagine how that would feel. So, I’m sorry because I cannot even fathom what you all go through.

Changes

For me, I recently went to the gastroenterologist to discuss my diarrhea that comes and goes. It went away in the fall and then came back in the new year. I’ve even had daily diarrhea in the new year. My celiac blood tests are all negative – which doesn’t really mean much. So, an endoscopy and colonoscopy for late June. I’ll let you know about those when they come up!

The doctor suggested I’ve been taking an Exocrine Pancreatic Insufficiency drug for the chronic diarrhea and continuing the fiber supplement I was already taking.. I didn’t know that an EPI drug could help.

So, I’ve been researching. From a 2015 study, “PERT in combination with a gluten-free diet reduced stool frequency from four per day to one”. I would have to agree. That has been my experience as well.

A 2017 study talks about how villous atrophy reduces the level of cholecystokinin. Cholecystokinin is a hormone secreted by cells in the duodenum and stimulates the release of bile into the intestine and the secretion of enzymes by the pancreas. Reduced cholecystokinin accounts for impaired gall bladder contraction and reduced enzymes from the pancreas.

I read about a lot of people having problems with their gall bladder before their celiac diagnosis. Then later they get the celiac diagnosis. Could celiac really have been the root cause of their gall bladder issues?

Anyway, back to me.

Conclusion

I’m not being paid by anyone to write this blog. I am here to tell you what goes on with me. I like to think I’m like most of us out there. I’m searching for answers and trying to feel good. Some days I feel good. Some days I feel terrible. Some days I spend a lot of time in the bathroom for unknown reasons.

For the most part, I think I feel pretty good. Even on the days I don’t feel great, I try really hard to put on a happy face and work through the problem.

The bottom line is that my diarrhea has stopped. I have an endoscopy and colonoscopy in June. And I put on a happy face more days that I probably am willing to admit to.