“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.

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Talking With A Dietitian

Because of my skinniness and gluten intolerance, I saw a dietitian today. If you are gluten intolerant, I highly recommend seeing a nutritionist or a dietitian. One thing I’m so happy about is that I wasn’t told not to eat anything that I’m already eating! Too many ‘nos’ make me crazy and I’ve had enough of those lately. So, I got advice to add more meat so I can build muscle, to do some weight-bearing exercise every couple of days, to try dairy again (and hopefully I won’t get a rash from it), and to make sure I’m getting enough complex carbohydrates. Some days I have gotten enough carbs, and some days I haven’t. I am also supposed to weigh myself once a week, then email or call her in a couple of weeks, and let her know what the scales have shown. She expects me to have gained a pound in the next two weeks. She wants to keep it slow so what is gained will be muscle because I need that more than I need fat right now. I’ll also be getting my thyroid checked in a couple of weeks. She and I aren’t so sure that’s not messed up, too.

My dietitian (I like her advice, so I’m claiming her as my dietitian!) has a daughter who has Celiac, so she knows about this stuff, not just from the textbooks, but from a bit of experience. I’ve got to tell you, I was thrilled to see how much she knows.  She also has the knowledge to deal with Candidiasis, and when I talked about the skin problems and such that I’ve had, she understood what to do about carbs so that I’ll get enough of the right kinds to feed myself and I won’t be feeding yeast.

She wanted to make sure that I know about more than just what I need to do to gain weight, so we talked about gluten intolerance, too. There is a lot to know about hidden sources of gluten, and for the sake of getting the info out, here are a few things to be aware of:

If you eat a meal at a family get-together, or a club or church activity, and some dishes have gluten in them, make sure you go first in line. If someone mixes up the spoons between dishes, the gluten-free foods will be contaminated. Also, if someone picks up a roll or a slice of bread and lets it pass over a pot of veggies, or some other gluten-free food, and crumbs drop in the pot, it’s contaminated.

Don’t lick envelopes! The glue on them is made from wheat.

Check your medications and supplements for hidden gluten. You have to make sure that any starches they may contain come from corn and not wheat. Make sure your pharmacist knows you have to avoid gluten. One good website for checking over the counter, as well as prescription medicine, is Gluten Free Drugs. My doctor and nurse practitioner use this site and so do I.

Also, I get email from Jane Anderson at About.com. She writes a lot of good articles concerning gluten intolerance issues.

Cecelia’s Marketplace has a great little book which lists tens of thousands of gluten-free products. I take it everywhere I go!

Not only food, but also personal care products such as shampoo and makeup need to be checked to make sure they are gluten-free. Yes, it probably has to come in contact with your digestive system to cause a problem, but if you put lotion on your skin that has something in it, say, vitamin E that is derived from wheat, and you touch your skin and then touch your lips, you can be glutened.

OH…make sure there is no gluten on their lips before you kiss your sweetie. If you eat a gluten-free sandwich, and your sweetie has a sandwich made with bread that has gluten, and you kiss after eating, you will be glutened. I was getting my grandson out of his high chair once and I started kissing his sweet little cheeks, then realized he had cereal all over his face. Yikes! I washed my mouth off really quickly.

The only other advice I’m going to give is, again, see a dietitian or a nutritionist if you are gluten intolerant, plus one more thing. My dietitian told me, and I’m passing this on because it applies to anyone with gluten intolerance, not to let it bother you if people think you are neurotic about avoiding gluten. She said things just aren’t real to some people unless they have experienced it for themselves. Y’all take care.

It’s Monday and My Head is All Over the Place

I’m like this a lot on Mondays. Only this time besides just wanting to do a gazillion different things at once, I’m also thinking about things like the two lawyers that I had doing damage control last week when I was in a jury pool for a murder case.

The first one was a prosecutor who asked if we were all familiar with DNA. Of course, everyone has heard of DNA. Then he said something that I thought was a leading question like you see on TV when the a lawyer objects and the judge sustains it. He said something like, “So you all know and agree that DNA is accurate?” Everyone agreed except me. He was stunned. I had to explain that labs make mistakes and it’s not 100% reliable, you don’t get 100% certainty. He kept asking for specific times that I could tell him about when it wasn’t. Good grief. I kept telling him labs make mistakes and I’ve read about it and I have the impression, although I couldn’t give him details, that DNA is not 100% reliable and with 100% certainty. So, he ended up talking in an encouraging and persuasive tone of voice to everyone else about how people are set free when DNA exonerates them. (Of course they are. You can say with 100% certainty that someone’s DNA does NOT match, but not 100% certainty that it DOES.)

The other lawyer whose head I seem to have messed with was the defense attorney. He asked who all had police officers in their families or were close friends with any cops. I raised my hand and told him I used to ride with them in the Ride-Along program, and I knew a few over the years from church or from being in the same organization.

Then he asked if we would believe the testimony of a police officer over the testimony of another person. I thought his tone of voice suggested that we should. As everyone else was nodding their heads “yes”, I raised my hand. He looked over at me and said, “You wouldn’t?” He didn’t sound thrilled. I told him, “No. People are people.” We had a bit of conversation and a bunch of other people started talking and it’s all gone fuzzy in my memory by now, but then he said, “Well, she rode with them.” I told him the ones I rode with were good cops. I liked the ones I rode with, but people are people and I watch the news.

I was #11 out of 40 in the seating order, but I wasn’t chosen for the jury. Whew. I was glad because I had a bit of a stomach ache. It was from being glutened (accidentally ate gluten and I shouldn’t ever eat that stuff) for the second time in eight days and it took a few days for it to wear off completely. Thankfully, I feel great now.

The week before last when I was glutened, I was writing checks and I made a deposit and I wasn’t recording any of this. Normally, I would record it, but I’ve learned to take it easy when I’ve been glutened and my head isn’t all with me, so I did that. Only I forgot. One afternoon last week I went to the doctor and when I got to the office, it dawned on me that I better look in the checkbook and see if I had the money to pay the doctor. (I think my head was more messed up than I realized, so it’s really a good thing I was not put on a jury.) So, in the parking lot and within 10 minutes of my appointment time, I looked in the checkbook and saw that the checks I had written were more than the last amount of money that I had showing. Uh, oh. For over an hour, until I could get back home and get online and see where I was at with all this, I thought I might be overdrawn. I have overdraft protection so I would be covered by money in my savings and I think they would charge me something to do that, but at least nothing would bounce. When I checked on it, that’s when I discovered the deposit I forgot about. Whew, again. Oh, I used my credit card at the doctor’s office.

One thing I want to do today is order a set of cookware and a few other things that I need to replace. Mine is mostly old so it needs to be replaced anyway, but I’m having to do this because of gluten cross-contamination. I’m more sensitive to gluten than I was when I first came off of it. Sometimes that happens. I’ve learned that it’s not only plastic mixing bowls that can harbor bits of gluten, but also a non-stick pot with a single scratch. So, my scratched ones need to go, as well as my pitted aluminum. I can’t use my rolling pin because wood absorbs gluten, and my wooden spoons are out, too. It’s aggravating, but it’s worth it. I’ve had a bit of a problem with stomach acid at night, not as bad as before I came off gluten, but I may be getting just a tiny bit of it from my cookware. OH…cast iron and cooking stones absorb gluten, too. I read that they can be run through an oven with a self-cleaning cycle that goes up to about 900 degrees and that will kill it. I’m looking for a friend with an oven that I can use that does that.

My kitchen is inside out because of me going through everything and I hope to make some visible progress on that today. Also, I want to try out my new bread pans on some Basic White Bread. This will be my first attempt at making gluten-free sandwich bread. Baking gluten-free bread is different from baking regular bread, which I was only so-so at baking, so I hope I’m better at this kind.

There are about 50 things I want to clean here today. (Not really that many, but you know how it feels when you just want to clean everything?) And this evening, I want to work in the yard. And I need to make some soap. I want to try using a different recipe this time. I’ve been using recipe #8 on this list, but I want to try #7 today, just out of curiosity. I see one or two others that I also want to try later. There are some things I want to pack up to send to my grand-daughters in Canada. And some other things I want to send to another son near Houston. And I want to take some time to read the next section in a textbook that I’m reading. It’s a college literature book and it’s interesting.

Well, hubby went in to work at about the middle of the morning and my writing itch was too great to ignore, so it’s now early afternoon and I better get started on this stuff. OH…I am going to call the courthouse and see if the jury is still hearing that case. I haven’t seen anything at all in the news about the outcome.