I wanted to talk a little about how I am physically doing and what is on my mind. I try to stick to scientific information or rants about how we need a cure, but today, I think it is important to let you guys know more specifically how I handle things.
I haven’t been “glutened” since I left the Nexvax trial over a year ago. I might have urgent needs to go to the bathroom occasionally, but adding a fiber supplement solves that problem pretty quickly. I fully believe fiber can solve a lot of issues for those of us with celiac disease and urgent needs to go to the restroom.
I don’t take a probiotic or prebiotic. I did in the past, but I didn’t find it made much of a difference in mood, sleep, or my urgent bowel movement needs. As I said above, a fiber supplement can normally help fix that problem for me. Also the science does not support the idea that probiotics help those with celiac. There is one probiotic that has helped those with Crohn’s and colitis – VSL#3, and that is the one that I took. Again, I just didn’t find enough of a benefit to justify continuing to take it.
I do take B12 injections because my B12 is terribly low. I eat a diet high in B12, but I just cannot seem to get enough to get me into the normal ranges without injections. I also have the MTHFR mutation, so that might contribute to the problems. But the injections help mightily.
I cook at home a lot and even more so since these stay-at-home orders have been implemented. I get bored with food easily, so I constantly scour the web for recipes that are naturally gluten free or that can be easily converted to gluten free. Tonight is chicken katsu with ginger rice and sauteed bok choy. The only changes for tonight are gluten free panko, gluten free soy sauce, and a little gluten free flour. I have all those in my pantry all the time, so this is an easy recipe to make.
I have always liked buying food from local farms. My CSA (consumer supported agriculture) subscription won’t start for another few weeks, so I found another source for farm fresh vegetables. I like buying vegetables from farmers because it forces me to use vegetables in season. I also use fruits and veggies I wouldn’t buy otherwise. Like the bok choy we are having tonight came in my box of selected veggies from the farm – I would NEVER buy bok choy otherwise and probably would not attempt the recipe I found if I didn’t already have the bok choy.
I do not live in a gluten free house. My kids make macaroni and cheese and my family eats regular bread. My children are old enough to understand the cross contamination rules and are excellent at keeping me safe. Since my blood test numbers are good – and we all know they have no correlation to damage in the small intestine.
Speaking of the small intestine, it is time for a endoscopy again, but with the Covid-19, I haven’t been able to get one. I had one at the beginning of the Nexvax trial, but we were unable to get the results. But a recently published study showed that only 6 out of 96 biopsies performed were considered “healed”. So repeat biopsies are important.
I do exercise. I find it helps keep things pretty normal in my body. It relieves stress, gets me outside, and gets me away from the family for a while. A little alone time in the middle of all of this family togetherness.
On the whole, I am pretty healthy – if a little overweight.
This Covid-19 stuff scares me. While scientists say that it should affect those with celiac disease at a greater rate, I don’t think there is any science to support this. They are making an educated guess. I certainly don’t want to get sick.
That’s sort of how I live and what is going on with me. I hope things are good with you all. Stay safe out there – wash your hands, practice social distancing, wear a mask, and follow the instructions of your local public health officials.