“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.

Advertisements

From Tears to Joy

A while back I wrote about how upsetting it has been to be losing weight to the point of looking like a contestant on Survivor at the end of the contest. I’m getting used to being skinny. I seem to have leveled out at just a hair or two above 100 pounds. I guess that will be fine. Like I said, I’m getting used to it.

The other things that are happening are fantabulous. (I had to use my special made up word that I use for the very best things.) My hair is growing back. For years it had been getting thinner, especially last year. The lady who was cutting it even told me I sure was “losing a lot of hair.” I now have new hair that is about this long!

My eyebrows have also gotten thicker. I was talking to my nurse practitioner about these things today after I showed her my thumbnail. For the past few years my right thumbnail has had weird squiggly lines on it. They looked like wrinkles and covered half the nail. It was growing out from the nail bed like that. I knew it was something medical when I first noticed it, but I didn’t know what and I never said anything to anybody about it. Last week I noticed that it’s beginning to look like a normal nail. There is a small area with fewer squiggles and then it gets smooth. My nurse practitioner said it was squiggly because I had a deficiency of something when I was eating gluten and didn’t know I shouldn’t be. That’s also why my hair was falling out and my eyebrows had thinned out.

She said our bodies take the nutrients to our important (to keep us alive important) body organs and the skin, hair and nails get what’s left. They are also the fastest to recover, so it doesn’t hurt them to do without like it would other parts of us. Other things can recover, too. It just takes longer.

Another cool thing, and this is the one that put me over the top here and has me writing when I would normally be asleep because it’s after midnight, is this. I’ve had trouble keeping up with my flower beds and garden the past few years. I wondered why that was, because when we home schooled our sons it all looked much better, and I was a lot busier then than I am now. When I thought about it I remembered that I worked in the yard in the evening back then. I haven’t been able to do that the past few years because I couldn’t bend at all after I ate. A doctor told me years and years ago that I probably had a hiatal hernia and so I just thought that was why I got to where I couldn’t bend. I figured it bothered me more as I was getting older.

Well, yesterday evening after supper, I picked up my clippers and went outside to just walk around and piddle a bit with clipping small things and maybe dead-heading a few flowers. I noticed I could bend and it didn’t cause any problems. Now, I wouldn’t go outside after supper and stand on my head in the flower beds, but I can do a little bit of yard work. So, today I went out and cut some small branches that were broken during a thunderstorm this afternoon. I also dug out part of the ditch that needed it and took the dirt to the side yard and filled in holes that an armadillo dug.

It’s so much more comfortable outside in the evening. Mornings are more humid, and by the time the dew is dry and you can do something out there, it’s getting plumb hot. So, as long as I don’t stand on my head in a flower bed, I can now work in my yard at the end of the day. And that, dear readers, is a great time to do something that is so pleasant and relaxing.

ADDENDUM (June 8, 2012): I was so excited that I didn’t make it clear the reason I can work in the yard after supper is that I’m not having stomach problems caused from gluten any more! I’m still excited.

SECOND ADDENDUM (January 13, 2014): Sorry to keep adding to this post, but things just aren’t totally resolved, I don’t think. I still weigh barely over 100 pounds and I eat more than my husband. In years past, if I’d eaten like I am now I’d put on some weight. The hair on my legs went away again, then came back, then went away. The hair on my arms turned a funny color and some of it broke off last year. Reflux became a problem again. Osteopenia is now osteoporosis and it’s worsened over the past year. I’ve done all I can to take good care of myself. I’m active and my nutrition is great. I’m wondering if there is a problem with my endocrine system and plan to ask the doctor that I’ll see for the bone situation soon. I may have more than a gluten problem, which wouldn’t be unusual. None of what I post on here is medical advice for anyone in any way, other than to say that if you are having problems that seem strange to you, try to find a doctor who can deal with it. Don’t try to fix it on your own and don’t give up. Friends tell me there is an answer. We just have to keep looking.