Celiac Awareness Month

May is Celiac Awareness Month. Some of us are aware of Celiac every single day whether we have Celiac Disease, or are sensitive to gluten, which in either case a person is intolerant. Symptoms and the remedy are pretty much the same for both as symptoms are widely variable, and the remedy is to avoid all gluten always.

I’ve noticed when talking to folks who have been told they “might have a problem” with gluten, that there are things some people don’t know about testing for Celiac, so I thought it might be helpful if I pass on what I’ve learned from reading “The Gluten Connection,” by Dr. Shari Lieberman, and also from reading several web sites. (I have links to other sites in other articles in the “Learning to Live Gluten-Free” category on this blog.)

One study has shown that in Celiac Disease, the body sees gluten as an invader and it attacks the gluten. In gluten sensitivity, the body sees gluten as an invader and puts up a defense. This is partly why things get complicated when testing for gluten intolerance.

When the blood is tested for Celiac, they are looking for antibodies – antigliadin (IgA), transglutaminase (ATTA) and anti-endomysial antibody (EMA). If the first two are present, it shows that there is a problem with gluten, but only if all of the villi in the small intestine are completely flattened will all three be present. According to Dr. Lieberman, “more than 30 gliadin peptides (molecules) are not evaluated by this test.” Everyone pretty much seems to agree that blood tests can be inconclusive. Advanced Celiac will be evident in a biopsy of the small intestine, but it can be missed if it’s not advanced to the point of completely flattened villi. Also, gluten sensitivity will not flatten the villi. I’ve read that Canada approved a pin-prick blood test for home use, but I don’t think it’s available in the US yet. Not sure about other countries. The stool test seems to be controversial, just going by what I’ve read on web sites, with some people saying it’s not reliable and others saying it was a life-saver for them.

Since blood tests are sometimes inconclusive a person will say “they said I don’t have Celiac, but I have problems when I eat gluten.” The other reason that testing is complicated is that a person can be sensitive to gluten and not have Celiac. Again, the remedy is to avoid all gluten in either case. If I had a test done and it showed negative or inconclusive results, but I noticed that I feel better off gluten, then I think I’d just blow off the test and avoid gluten. Do you think it makes sense to continue eating something that is causing symptoms ranging from pain to depression to thyroid problems to intestinal upsets of various kinds and on and on, just because the test said something different from what a person’s body says? I think I’d listen to my body over a test result. They are still learning about gluten intolerance. One thing they do know is that gluten in any amount can affect the body for months, so if a person is sensitive it may take time to feel better when coming off of it.

Something else I’ve noticed while reading different sites is that sometimes the term “allergy” is used when this is not the same thing. An allergy, such as wheat allergy, causes a release of histamines. Celiac Disease and gluten sensitivity are not allergies. They are both a type of food intolerance.

Here is another site that I just found today: http://www.celiaccentral.org/ This is a site run by The National Foundation for Celiac Awareness and it looks like one of the best ones I’ve run across. There is information on all aspects of gluten-related items from diagnosis to shopping to research and more. They even have cooking videos.

There is a lot of information on various web sites, as well as in books and magazine articles. I’ve noticed some of it is conflicting. One reason is that gluten sensitivity hasn’t been recognized for as long as Celiac Disease has been. We need to be sure to keep it straight about allergy and food intolerance when we are reading about gluten. Also, we must listen to our bodies. Serious damage can be done if we don’t.

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.