“You Most Likely Have Celiac”

That’s what the nurse practitioner said. She went over test results with me and then said, “You most likely have Celiac.” I’m not sure what she expected, but I expected the results we got. There are no antibodies to gluten in my bloodstream, which makes sense because I have not been eating gluten. I even had to quit eating things like almonds and “gluten-free” pasta that had the words “Processed in a facility that also processes wheat” on the package. I also expected to be told that I have genetic markers for Celiac; the test said I do. You can’t have Celiac without having genetic markers, but you can have the markers and not develop the disease. Celiac is an autoimmune disease, by the way. I expected to be told I have the markers because I read that bone loss occurs with Celiac and not with gluten sensitivity, and I have bone loss (osteopenia in my early 40s and now osteoporosis). Also, I had absence seizures when I was a kid, and those can be associated with Celiac. Added to that, I have thyroid antibodies. In Celiac disease, the body can confuse thyroid proteins for gluten proteins, go nuts and attack the thyroid. Those are some of the reasons…so looking at my symptoms, my medical history and my medical family tree, this was no surprise at all.

There are people who have Celiac, but the antibodies are not showing up in their blood tests. (This is pretty technical, but it does explain a bit about that.) It’s possible that if I were to do a gluten challenge followed by the blood test, I might have some antibodies in my bloodstream. But, maybe not. They are produced in the small intestine, and sometimes they just hang out there and there aren’t enough to measure in the bloodstream. I’m not going to do a gluten challenge. I’m so sensitive to that stuff that I’ve had to stop eating anything that has been anywhere near gluten or wheat. No gluten-free deli meat that is sliced on the same machine as the products that contain gluten. Nothing from a facility that is not totally wheat-free.

It’s only been about a month or so since I made the discovery that eating cross-contaminated food is probably why I’m having the symptoms I’ve been having. Candida overgrowth and gluten intolerance can cause the same symptoms. Since I have both conditions, there was some confusion. It takes a while to get the body back in order, but it’s lurching along toward better.

In the meantime, I’m gaining some weight back. I had a problem with weight loss last year before coming off gluten, then it stabilized when I went gluten-free. Earlier this year, I started losing weight again, probably because of the cross-contaminated food I was eating. Now that I’m not eating those things, and I’m following the advice of my dietitian, I’m gaining weight.

So, what’s next? I’ll be going to a gastro doc because I’m curious about probable damage to my small intestine, and I want to check on that. I’ve learned that different areas of the small intestine absorb different nutrients. The first part to show damage in Celiac is usually where nutrients that bones need are absorbed. That would explain my early bone loss. Another part absorbs cholesterol. If that is damaged, that would explain my fantastic better-than-ever cholesterol numbers on my last two blood tests. Also, maybe the doctor will have some advice concerning yeast over-growth. Celiac damage creates a good environment for yeast to grow, and that may be why I’m having such a difficult time with it. This is all speculation, of course, as to what is going on in there. We won’t know anything until I see the doctor.

Folks sometimes ask how I feel. Well, it’s been a few weeks since I felt so bad I had to remind  myself that I’m not going to die, so I’m better. I’m still having some problems like acid reflux, and my hair hasn’t stopped falling out yet (again), so there is room for improvement. Someone told me a while back that I was eating something that I shouldn’t have been eating for decades, and it takes more than a few weeks for the body to recuperate. Oh, how right he was, that fellow who told me that. I’ll get there though. Not sure where ‘There’ is, it’s different for everybody, but I’ve had days lately where I felt not just OK, but really good, so I’m expecting to be just fine.