Please Learn Some Manners

It’s not like you are my friend, asking the question because you care about me. It’s because you are so freaked out about someone like me that you don’t know what else to do other than say what naturally falls out of your mouth. Funny. I feel like anyone else until I run into someone like you.

You are the grocery store checker who when I tell you that all these groceries are together, I had to leave space where there is white powder on your conveyor belt because it might be flour and I’m allergic to that and also I can’t have even a smidgen of gluten in my kitchen, just has to say, not with a note of curiosity, but with a shocked tone of voice, “You’re allergic to flour? What do you eat?!” Would you say to a person in a wheelchair, “Gee. How do you get out of bed every day and get into that chair? How do you ever have any fun?” Of course you wouldn’t. That would be rude. Why do you think it’s OK to comment on any other health issue that a person has? And why don’t you clean off the conveyor belt so the next person who comes along with my same problem (there are more of us than you probably think!), won’t have to skip the white powdery part?

There have been times when the entire belt was dirty and I had to ask the checker to please clean it before I could put my groceries on it. I think grocery checkers ought to know that some people have these issues so they can keep the belt clean. After yet another rude checker today, I wonder if rather than go into an explanation in order to try to educate, which may just be a colossal waste of time and energy, I ought to just tell them their question is a bit rude and why don’t they clean off that conveyor belt? Maybe I ought to just ask them to clean the belt with no explanation. But I think that’s just a self-protective move and fails to educate the ones who are polite and teachable. Maybe writing this will help? I try not to let ignorance and rudeness get to me, but after about three years of this, it’s really getting old.

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“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.

Gluten, Gluten, Where’s the Gluten?

Oh, good! The store brand of loratadine I got from HEB is gluten-free! I had just called Kroger and asked about their store brand of acetaminophen, (it has starch and cellulose with no indication of where it comes from), and talked with one of the nicest sounding ladies on the planet, who told me that she would have to have the bar code off the box so she could tell me who manufactured it. Then I could call and ask them. I almost didn’t bother to call HEB. Their loratadine has a starch that comes from corn, but I didn’t know where it came from until I asked. I’m glad I did. My face hurts and allergy med will help.

This is a common experience with medicines. Generic drugs, whether over the counter or prescription, are obtained from different companies at different times. The company that manufactures the medicine would have to be contacted. I guess they use some kind of number off the bottle  to check the batch to see what is in it. From what I’m reading on this website I’ll stick with the brand name for acetaminophen, but I can use HEB’s loratadine.

While I’m here… In my last post, I said I thought an antibiotic might have messed me up. I still don’t know for sure. The name brand would have been fine, but I took the generic. I didn’t think to ask the pharmacist to call the company. I’ve read that it helps if a medical professional makes that call; they tend to be able to get better attention to their call.

A couple of other things could have been the problem though. One is if I ate out at a place that used the same knife to put the mustard or whatever on my gluten-free sandwich that was used on regular bread. Or, even if they dip the knife in the same jar of mustard or whatever. Maybe they use a squeeze bottle? Or, if the bread or corn tortilla or something else that I might have eaten, was laid on the same surface that was used for foods that have gluten. Surfaces have to be cleaned in between or the gluten-free food will be contaminated. I’ve read that if there are people living in the same house, and some have gluten issues and others don’t, that they need separate toasters and have to be careful not to cross-contaminate food.

Another thing that could have happened is envelopes. I’ve licked the glue on several envelopes recently. Wheat is used in that glue. It’s also on stamps. Yea, for self-sticking stamps! Otherwise, I would have been exposed to even more gluten.

So, if you have come off gluten to see if it changes your energy level, your sense of optimism, your digestive issues, or whatever, make sure to check all sources, including meds and glue on envelopes and stamps. Now, I need to go call that lip balm company.

Learning to Live Gluten-Free

What? Acid in my throat again? This is the second night in a row. I just got out of bed after lying there for an hour wondering why? What did I eat? Was it three days of spicy food? Maybe the first day when I ate at the Mexican restaurant that has the great HOT sauce to dip chips in wasn’t too much, but that followed by two days of chili was too much? Maybe it wasn’t the spice, but it was too much dairy? Could dairy be a problem, too? I had a lot of cheese at the restaurant and ice cream last night, but not much dairy the day in between. It could be that since it was really cold night before last and I was sliding down off the wedge that I sleep on so I could get way under the cover, that I was lying too flat and that is why I had acid that night, and then last night it was a different problem. Like…too much chocolate? I have been eating a little bit of a Hershey bar sometimes and that hasn’t bothered me, but last night I had birthday cake and it was chocolate. It was gluten-free and gluten is what started this whole investigation. (Only I didn’t know at first that gluten was a problem. I thought the whole gluten-free thing was a fad. Unless, of course, one has Celiac Disease.) And the corn chips that I had with my chili were two different brands, but the first one is processed on machinery that also processes wheat. The second brand has been tested below a certain level of gluten, but not totally gluten-free. Can I really be that sensitive? Gee, I hope not. Could it be tomatoes? I hope not, but it has to be something. Maybe only if they are cooked tomatoes because the pico de gallo and the HOT – wonderfully HOT! – sauce didn’t bother me.  How many possibilities have I come up with so far? Too many. See how complicated this can be? I’ll have to play detective with my food diary to figure this out.

I know one thing. I sure have enjoyed the nights of sleep without acid and whatever caused this will have to go. “Without acid” started after I stopped eating gluten. Until now, anyway. And it may be that if tomatoes are bothering me now, they won’t after my system has had more time to recuperate from exposure to gluten. I’ve also enjoyed not being bloated and feeling much better in general. People are even telling me that I look like I feel better.

Up until now, my life has been defined as the Days BC and the Days AC – Before Christ and After Christ. Now, I may be adding the Days BG and AG – Before and After Gluten. Well, there’s no “may” to it. I don’t want to feel like I used to feel.

I quit eating gluten at my doctor’s suggestion. In September when I saw him my whole digestive system felt like it had been to a rock concert. You know how when you go to a concert and the music is loud and you’re right up front at the stage and then when it’s over your whole brain feels like it’s pulsating from sound waves that are still reverberating around in there? A few years ago, I had two sons in bands together and I spent quite a bit of time having fun with loud music. Lots of reverberating afterwards. The head gets over it pretty soon. My digestive system was miserable. My doctor suggested that I try a really good probiotic with lots of different bacteria in one capsule and digestive enzymes. He said if that didn’t work after a couple of weeks to try cutting out dairy. If two weeks of not eating dairy foods didn’t help, then cut out gluten. The only time I could tell that the enzymes helped was when I ate something like pancakes or a big ol’ donut. So, I started with eliminating gluten. I’m still taking the enzymes and probiotic until I get everything figured out. Then I’ll see about cutting back on some of that.

So, what do I think of all this gluten-free eating? And what does my husband think? I’ll start with him; he’s pretty cool. He has liked the pasta and the pancakes and the cornbread. He liked the cake, too. He told my parents that everything I’ve fixed that has been gluten-free has been “delicious.” This morning he told me that it’s probably a good idea for everyone to avoid gluten since it can cause so many problems for so many people. Well, I think it’s great and wonderful that he’s so easy to work with here, although I wouldn’t go so far as to say everyone should avoid it. He might decide he’ll avoid it, except for beer. He likes beer. It’s a good thing I’ve never liked beer; that is about the only thing I haven’t been able to find a substitute for.

So, how has this changed my grocery shopping so far? To tell you that, I’ll tell you how I was shopping to begin with. I have a list to take to the store. It’s a master list. I’ve listed vegetables broken down into categories of green leafy, root, cruciferous and others. On my list, I also have fruit, nuts and seeds, grains and beans. I start in the produce department, checking what is in season and on sale, where it came from and what goes well with what and put meals together as I shop. I was only buying a few packaged foods like oatmeal, pancake mix, lunch meat (icky, I know – my husband eats it), bread, nut butters, canned soup, tofu. Most of what we eat is fresh produce and dried beans and grains. We eat pasta every few weeks. Rarely, I buy boudain or tamales. More rarely than those things, any other meat. It’s hard for me to say “never.” About the only dairy I was eating before I started having so much acid at night, was a little bit of milk in my coffee and butter in oatmeal or on pancakes. I did increase dairy though when I stopped eating cooked food for supper and started eating fresh fruit with some cheese, nuts, or peanut or almond butter. I was trying to get through a night without waking up with my throat burning. Nothing was helping with the bloating or the general sluggishness that my system was having. I’m not drinking coffee or tea, except herbal tea, more than once a week now.

Canned soup had to go. No biggie. Oatmeal in the US isn’t safe from wheat contamination. I miss oatmeal and plan to try it in a few months after my system has had time rest. (Europe and Canada are way ahead of us on this. I plan to write about some of that later.) Our couscous and pancake mix had to go. I had gone from being able to eat a stack of four small pancakes in May to only two pancakes by September and they sat in my stomach like a rock until I started taking digestive enzymes. The enzymes helped, but they weren’t fixing the problem.

The only time I’ve really felt lost is at breakfast. No barley cereal, no oatmeal, no French toast, no rye toast with almond butter and sliced apple or banana. We’re better off not eating a lot of eggs, because of my husband’s cholesterol. I’d like to have toast sometimes. I’m thankful for gluten-free pancake options. I’ve ordered Better Batter flour so I can make bread and do a bit of holiday baking. I picked up a small magazine, “Gluten-Free Recipes”, at the grocery store the other day because it has two recipes for flour blends that can be made up in bulk, one for breads and the other is all-purpose. So, I have some exploring to do. In the meantime, I’ve found some good websites with recipes. I LOVE the cornbread recipe that Nicole has on “Gluten-Free on a Shoestring”! Like a lot of folks, I live on a shoestring and once my Better Batter flour gets here I’ll be able to make pancakes with it and it won’t cost as much as the mix. I was desperate when I bought the mix. Oh, and pizza. I’d like to have pizza sometimes.

That reminds me of something else that I was thinking about when I woke up with acid in my throat. I’ve thought of this often over the years. It is just a question that I ask myself about different aspects of life. In this situation, I’m asking, “Do I live to eat, or do I eat to live? Am I a servant of food, or is food my servant?” I really enjoy food. I was cooking eggs and boudain for breakfast the other day and I thought, “I can have boudain and chocolate! What else do I need?” But, really. Am I remembering that this life and its goodies are temporary and what I have to look forward to is going to be better? Do I hold onto things here lightly? Really? Even favorite foods?

ADDENDUM (January 2, 2012): I kept seeing things about gluten-free beer here and there, so I thought for those of you who are interested, here’s a link to a website with reviews of gluten-free beers: Switch2GlutenFree This site is written by a man named Mike. The “About Mike” page is pretty interesting; this looks like a good place for a guy, especially, to do a little reading. Ladies aren’t the only ones writing about living gluten-free and I imagine a few guys might like to read another fellow’s writing.