It’s been a rough couple of months. Since celiac has a strong genetic component, we decided it would be wise to have our two younger children screened for celiac disease as part of their annual physicals. My wife and I were shocked when both of their blood panels came back not just positive, but strongly positive for celiac. (The most specific celiac test was literally “off the chart” for both of them. It exceeded the maximum measurement used by the test.) It’s been an emotional roller coaster. The odds that any first degree relative (parent, sibling, or child) of someone with celiac disease will also have active celiac are roughly 1 in 22, so we didn’t really expect either test to be positive, much less both. It was enough of a statistical oddity that my wife decided to get screened as well, just to make sure they weren’t getting a genetic double-whammy. But her celiac panel was normal, which means they both got it from me.

Of course, there isn’t anything I could have done about it. I didn’t control my own genetic makeup, much less the genes I passed on to my children. Rationally, I know that. But it still feels awful to know that you passed an incurable (though manageable) disease on to your children.

We’ve now gone through the cycle of gastroenterologist appointments and small intestine biopsies. The biopsies confirmed the celiac blood panel for both of them, so there’s really no room left for doubt. I’m proud of my kids. They’ve both handled the diagnosis surprisingly well. Obviously, they aren’t happy about it, but they are putting as positive a spin on it as possible. My son, who is headed off to college, commented that it would force him to avoid most fast food, which he called one 0f his “weaknesses”. He’s something of a fitness nut and was happy to confirm that his preferred protein shake powder was gluten free. College will be a challenge for him, but he’s going to a university that seems to have a pretty high degree of awareness about celiac and other special dietary needs, so that’s a plus.

Our youngest is just entering her teen years. I imagine the next few years will be particularly challenging for her. And she’s more visibly upset about the diagnosis than our son. Still, she tries to be more positive than not.

This does demonstrate the importance of screening, especially if someone in your family is diagnosed with celiac disease. The one positive from this is that neither of my children yet have any celiac-related health problems and if they maintain a gluten free diet, they will never develop any of them. The immediate effect of celiac disease — damage to the villi of the small intestine — rarely produces visible symptoms until significant damage has been done. So if you wait until visible symptoms appear to test for celiac, then you’re waiting for the person to be hurt enough by the disease that it will take a lengthy period of time to recover from both the primary and the secondary effects of the disease. My kids have had relatively little damage done to their bodies at this point and do not yet have any of the secondary symptoms. With a moderate amount of self-discipline, they’ll never develop the myriad problems I developed. That, at least, is something positive.  I try to reinforce that with both of them.

A negative celiac blood panel does not rule out the possibility that you will develop the disease. Only a genetic test can do that. So if you have an immediate family member with celiac, it’s probably a good idea to still be screened every 3-5 years after a negative blood panel. It’s a simple blood test and trust me, it’s much better than having the disease ravage your body undetected for years.

I guess I would say that I’m crushed both kids inherited this from me, but glad that we caught it before it really hurt them. I’m also really glad the new health insurance law allows both kids to stay on my insurance until they are 26 and prohibits coverage denial for pre-existing conditions.

On a personal note, I had my first annual follow-up appointment today for the celiac-related osteoporosis in my spine. After a bit more than a year gluten free and taking 1800mg of calcium spaced out three times each day in 600mg doses, my osteoporosis has improved to the less serious osteopenia. Basically, I’m gaining bone density without medication, which is a really good thing. (Nobody tests osteoporosis medication on middle-aged men.) Hopefully next year I’ll be at or near the normal bone density range. That was really good news to hear. I’ve been as careful as I know how to be and it’s good to have my effort validated. I’m also feeling better than I’ve felt in years. Now I need to get back on a more disciplined diet and exercise regime. I used to be really good at both, but that’s one of the things that fell by the wayside as I felt worse and worse before my diagnosis.

Some mornings before school my daughter likes to have a waffle and an egg for breakfast. I had already heard about Van’s Waffles, so I picked up a variety for her to sample. The minis were the clear winner for her. (I like the buckwheat ones myself.)

These are best heated in the oven, which is good, I suppose, since our toaster is full of gluten crumbs. On a frozen waffle scale, they are pretty good.

The other regular non-gluten free staple in my daughter’s lunches and one of her favorite snacks were granola bars. That one was easy. I’ve loved Larabars and Kind bars for quite some time now. It was just a matter of finding the ones she liked. While she likes a number of them, there is one clear winner in her mind.

Meet the Peanut Butter Cookie Larabar. Its only ingredients are dates, peanuts, and salt, but it does make a delicious snack. And, for now at least, it’s my daughter’s favorite. (She doesn’t have anything against the ones with chocolate in them either.)

I’ve also found a couple of other brands of gluten free snack bars and she likes them as well. So this replacement was the easiest of them all.

My daughter has never cared much for bread, even when she was preschooler. She’s been eating the meat, cheese, and pickles out of her hamburgers, hot dogs sans buns, and sandwich meat a la carte for her whole life. But this past year or so, she’s been taking a peanut butter & nutella sandwich to school. I immediately got her a couple of types of the more palatable bread to try and one of them she thought was okay, but hardly great.

I’d heard that Whole Foods had started carrying a new brand that was supposed to be really good, but hadn’t yet made it down to one to check it out. Lo and behold, as I was looking through Sprouts gluten free jubilee offerings, I saw this in the freezer!

I snatched a loaf to try. It’s more flexible than other gluten free breads and it tastes good without reheating it. That’s all good, but the critical thumbs up was my daughter’s. And this bread got it. It’s now the official instrument of nutella and peanut butter conveyance in her school lunches.

While I was at Sprouts, I saw and snagged the following as well.

Udi’s Gluten Free Pizza Crusts were also a hit. I made my daughter her favorite pineapple and canadian bacon pizza while I had a ground bison and black olive one. This was an important discovery because we can take some of these to her camp when she goes. They will keep them in the freezer and they will make her pizzas using them on nights when she would otherwise have few options.

If you haven’t yet tried any of Udi’s products, I highly recommend you give them a taste! Two thumbs up from both my daughter and me.

I was shaken when I got the call from my youngest daughter’s pediatrician informing me that her celiac panel had come back highly unusual. My wife and I wanted to have our daughter screened at her annual physical because celiac disease has a strong genetic component. Even so, our daughter had never had any obvious symptoms, so we didn’t really expect the tests to be positive. But her counts were worse than mine were when I was diagnosed.

While it hasn’t exactly been easy or always pleasant for me as I’ve adapted to a gluten free lifestyle, the disease has never felt overwhelming or unmanageable to me. I’m a tad ‘strong-willed’ and that trait has stood me in good stead this past year. Discovering that my little girl (even if she’s not actually so little anymore) inherited a genetic disease from me has been worse than anything in my personal experience over the past year. I feel worse for her than I’ve ever felt for myself.

I am glad that I’ve maintained a positive and mostly upbeat attitude over the past year about having celiac disease. That tends to be my approach toward things I can’t change anyway, but I feel that my example may have helped steady my daughter when she got the news about her test results. And she seems to be trying to approach it in the same positive way that I did.

I was immediately more concerned about the changes and adaptations she would have to make than I ever was on my own behalf. Most of our dinners are already gluten free because of me, so we didn’t need to make that transition. She has never cared for school lunches and has always taken her lunch to school, so that made it easier to manage as well. Moreover, with just a few exceptions, most of her lunch fare was already naturally gluten free. So we really only had to worry about those few lunch items, snacks, and breakfast food. I’ll have several food reviews in the future about products I found specifically to fill those gaps for her.

She’s been to a school dance and a birthday party already since her diagnosis and managed both fine. At the dance, she won a cake on the cake walk, and gave it to a friend while at the party, she just skipped the cake. Her friends know about her newly diagnosed celiac disease and have started trying to help look out for her. Socially she’s doing pretty well. Food does tend to crop up all the time in social situations, as I’ve become much more aware over the past year. But that hasn’t been an obstacle for her.

She’s inherited a lot of things from me, but this is one thing I really wish she hadn’t.

I am very proud of her and the way she’s handled this hurdle, though.

May is designated Celiac Disease Awareness Month. As I’ve gradually healed and continue to heal since my diagnosis roughly a year ago, I’ve begun to understand how important it is to raise overall awareness of this disease. While celiac disease is an autoimmune disease that affects roughly the same percentage of the population as type 1 diabetes, it has had a much lower level of recognition. In large part, that’s because it tends to have a more gradual onset presenting with over 300 possible symptoms. While some people are impacted so severely by celiac disease that they experience major distress, like kidney failure, in a fairly short period of time, most of us experience the slow development over time of a bewildering array of seemingly unconnected symptoms. In fact, I didn’t even recognize some of my symptoms as symptoms until they began to fade when I eliminated gluten from my diet after my diagnosis.

Study after study tells us that the vast majority of people suffering from active celiac disease remain undiagnosed. In that sense, I’m one of the fortunate few. My family doctor was alert enough to tie unusual blood work with several other seemingly unrelated things and referred me to a gastroenterologist even though I was not specifically complaining about any digestive tract symptoms. (I did and do have a number of such symptoms, but they developed so slowly that I didn’t notice the onset and were not severe enough to trigger any awareness that something was seriously wrong.)

The blood tests for celiac disease have now been improved to the point that, given its prevalence and difficulty of diagnosis, it should become one of the things for which we routinely screen. We know that 95% or more of those with active celiac are undiagnosed. We know that they have a 500% higher risk of developing certain cancers, are at a greater risk of developing other autoimmune diseases, and are at risk for a host of other long-term health problems. Further we know the disease is notoriously difficult to diagnose correctly from symptoms alone. Since we have pretty accurate blood tests now (which was not true as recently as 10 years ago), why would we not screen for it?

The Celiac Nurse has posted a great article for Celiac Disease Awareness Month that, among other things, provides the links to her year-long, in-depth articles on the categories of symptoms associated with celiac disease. I strongly recommend taking the time to read her post and the linked series. It’s very likely that somebody reading this post has celiac disease and doesn’t know it.

Yes, my body has turned into a form of the Soup Nazi this past week and emphatically denied me oats. Apparently I’m one of the small percentage of celiacs who also can’t tolerate oats.

I set up the test pretty well. I got tested and certified gluten free steel cut oats by Bob’s Red Mill. I prepared and ate them in the middle of last week. For the past week I’ve otherwise eaten even more conservatively than I usually do. We’ve not been out to eat at all and I haven’t eaten anything that wasn’t either made by my wife or me or a normal part of my diet. I loved eating the bowl of oatmeal. That was always one of my favorites.

But I’ve been paying for it ever since. Bloating, painful cramping, and a variety of symptoms I won’t describe in detail. I’m only now really beginning to feel better.

So I guess I got unmistakable results from my test, just not the results I wanted. Oh well. At least I don’t suffer from a dairy, corn, or soy intolerance like some celiacs do. I’ve managed without oats for a year with no real struggle. It would be a lot more difficult to remove any of the other three from my diet on top of gluten. So, all things considered, I guess I can’t really complain.

Still, I was really hoping for a more positive result.

It’s been roughly a year now since I was diagnosed with celiac disease and began a gluten free diet. It was quite a shift at first, but it’s almost become second nature now. I read the ingredients on everything I pick up and am still sometimes surprised. Just the other day my wife was making a Thai sauce when she noticed that the container of peanuts said it could contain wheat. (She noticed before she added them.) Who expects to find wheat in peanuts? Such is life these days.

We don’t go out to eat that often anymore, and when friends or family want to meet at a restaurant, I tend to skip the food and stick to coffee if it’s not a place I already know. It’s surprising how often food is involved when people gather for any reason, business or social. Whole foods are the safest at such gatherings. I always look for the raw vegetables, though I skip the dipping sauces that typically come with them.

It’s not been as difficult for me in many ways because I’ve always liked vegetables of different sorts, even as a kid. And many of my favorite dishes were already rice, bean, or lentil based and required little, if any, adjustment. The transition has also been easier since both my wife and I can really cook. I’ve always been grateful to my Dad for teaching me how to cook, but never more so than this past year. And my wife has been amazing. She was a little overwhelmed at first, but adapted quickly and has since become quite an accomplished gluten free chef. I know that a lot of people in our modern world never truly learn how to cook for a wide variety of reasons. But if your lifestyle and eating habits revolve around dining out and eating packaged, processed food, I’m not sure how you could make this particular transition. At the very least, it would have to be a lot more challenging than it has been for us.

Business travel remains a challenge. Fortunately, I don’t have to travel very often and I typically have plenty of advance warning when I do, so I can do research and plan how I am going to eat. It’s almost like putting together a battle supply plan in unfriendly territory. I know the stores, restaurants, and other resources in the Austin area pretty well. It’s much more of a challenge in an unfamiliar place. Moreover, the worst time to make yourself sick would be when you are traveling, so I tend to be especially conservative about what I eat when I’m on the road.

My family has also pretty thoroughly adjusted. Even though I’m the only one who has to eat gluten free, we don’t make separate meals for me. So much of what we eat at meals does not contain gluten. On my last business trip, my wife asked the kids if there was anything they had missed and would like for meals while I was gone. They couldn’t think of anything.

I feel better than I’ve felt in years, even if I’m still a long way from healed and healthy at this point. I’m not thrilled at all the doctors I’ve acquired over the past few years. I was used to having only one whom I saw infrequently. That’s not only no longer the case, it’s unlikely to ever be the case again. I’ve landed in a new phase of life.

Now that I’ve made the transition to life as a celiac and am feeling better, it’s time to start trying to get back into some kind of shape. I’ll make that my goal for this next year.

Last week I read Michael Pollan’s book, In Defense of Food, An Eater’s Manifesto. It’s quite well written and thoroughly sourced. He’s a journalist, not a scientist, but he is an academic as well and certainly able to document and defend his ideas. I plan to devote a post reviewing each of the three sections of his book. Pollan’s basic premise is actually simple and he unveils it immediately in the introduction.

Eat food. Not too much. Mostly plants.

Unfortunately, that’s easier said than done in the United States today. The first two sections explore why it has become so difficult and the last section explores ways to overcome those difficulties. If more of us begin to “vote” with our wallets, we may begin to have a real impact.

For the past year, since I was diagnosed with celiac disease, I’ve had to actually read and analyze the full ingredient list on absolutely everything (other than fresh produce)  before I eat it. I already knew that some common things were actually imitations, of course. For example, I’ve loved buttermilk my whole life. And it’s next to impossible to actually buy real buttermilk anywhere. Read the label on the “buttermilk” in the store next time you go shopping. Odds are it’s not actually buttermilk at all, but rather a chemical concoction designed to emulate the taste and texture of buttermilk. However, I didn’t realize until I began reading all labels just how little of our food is actually the food itself and how much is a processed imitation. That heavy whipping cream? Probably not real cream or at least not just cream. Those potato chips? You won’t find more than a few that are really just sliced, fried, and salted potatoes. Check that butter to see if it’s really just butter. Most of what is sold as “yogurt” is a lot more than milk with bacterial cultures. I even have to watch out for supposedly “raw” meat. It sometimes comes with a list of ingredients as well.

I’m not the sort of person who was blithely unaware of the health implications of processed foods. I grew up in a family that frequented health food stores and subscribed to Mother Earth News back in the 70s. My parents gardened so much that I was sick of it by the time I became an adult. We had a yogurt maker to make our own yogurt from scratch. My father co-authored an Indian cookbook and began teaching me how to cook (and letting me experiment) by the time I was in 5th grade. I’ve been somewhat aware of food and environmental concerns my whole life and have been partially engaged. I have friends with various sorts of food allergies and sensitivities and know their struggles. Even given all that background, I’ve been surprised this past year by just how difficult it is today to find real food.

Fortunately (or perhaps unfortunately), the Internet allows me to research each individual chemical ingredient and additive so I haven’t had to completely eliminate such things from my diet simply because I had no idea what it was. But I feel like cheering anytime I  find a short ingredient list with normal things in it that I recognize without online research. I find that I buy more from non-US companies.

Tasty Bites is a good example of one such company. In order to illustrate my point, let’s take a simple product like unflavored rice. Here is Tasty Bites microwaveable basmati rice. Look at the ingredients. There are three of them: water, basmati rice, and sunflower oil. That’s it. Short, simple, and easy to decipher. Compare that to the ingredients in Uncle Ben’s Basmati Ready Rice product (one of the shortest ingredient lists of all the Ready Rice products): WATER; BASMATI RICE; CANOLA OIL AND/OR SUNFLOWER OIL; SOY LECHITHIN; NIACIN; IRON (FERRIC ORTHOPHOSPHATE); THIAMINE (THIAMINE MONONITRATE); FOLATE (FOLIC ACID). I happen to know that most of that list represents an attempt to add “nutrients” into the processed rice. But I think it illustrates the point. Moreover, the Tasty Bites rice, simple as it is, tastes better than Uncle Ben’s processed rice product.

Or let’s look at a more complicated Tasty Bites product, their Zesty Lentils & Peas. Here is its ingredient list: Water, Bengal Lentils, Green Peas, Yellow Peas, Red Pepper, Coriander, Sunflower Oil, Sugar, Garlic, Salt, Pepper, Cumin, Chilies. It’s a longer list, but every single one of those ingredients is easily recognizable. Moreover, they are all food, not chemical additives or heavily processed food-like substances. Tasty Bites is just one example company, but it illustrates the lie that packaged foods require a preservative chemical bath. It’s a lie that too many of us have swallowed without question and authors like Michael Pollan are beginning to expose it.

I’ve waited until I visited Kerbey Lane Cafe a couple of times in different locations before writing this review. My readers have to understand that this was one of my favorite restaurants before my diagnosis. It was hard for me to believe that the restaurant that made the best pancakes I had ever had could also safely prepare gluten free dishes. I wasn’t willing to even risk disappointment until my wife had some health issues that left us greatly relieved right by the original restaurant on Kerbey Lane. After that experience, I risked another visit at a different location with my daughter.

I’m happy to report that despite their well-deserved pancake fame, Kerbey Lane Cafe is able to prepare certain dishes without cross-contamination. The first time I risked a visit, I discovered they have a gluten free menu. On that visit I ordered the migas. They were as good as they’ve ever been and I had no adverse reaction. On the next visit I ordered one of their enchilada options. It was similarly fantastic with no adverse reaction.

If you are a celiac visiting Austin, give Kerbey Lane Cafe a try. You’ll be glad you did.

I’ve realized that I don’t post many restaurant reviews. There’s actually a good reason I don’t. Since being diagnosed with celiac disease, I eat out significantly less than I once did. Moreover, when I do eat out, I tend to return to restaurants where I’ve had a positive experience in the past. Unless my experience changes, it seems rather silly to keep writing posts on restaurants I’ve already reviewed. I also tend to be rather cautious with new restaurants, which is another reason I only have one post about a more negative experience. (Ironically, that post on Red Lobster is one of the most popular I’ve written. Hardly a day goes by that I don’t get multiple visits from people who found it via a search.)

This past week was one of our large meetings with our business customers. Our development project team leader planned a dinner out at Jack Allen’s Kitchen after the last day of our meeting. I wasn’t optimistic that a restaurant with a Chicken Fried Anything section on their menu would have anything I could eat, but I dutifully emailed them to ask. I received a really nice response that I want to go ahead and share.

Hello Scott,

Thank you for choosing our restaurant for your office dinner.  We do offer a few Gluten Free items on our menu such as our taco platters, bacon wrapped Texas quail, smashed guacamole, chips and salsa, and our Country Club Fancy Chicken Salad.  We will also gladly grill you any piece of chicken, meat, or fish that we are offering that day.  None of our items are certified gluten free by the Gluten Intolerance Group and there is a chance that cross contamination may occur as we are not a gluten free establishment. I hope this helps you and if you have any other questions, please don’t hesitate to call or email.

Thank you,

Shannon

@Jack Allen’s Kitchen

I didn’t actually get to meet Shannon, but I decided to give them a try based on his or her response. (Shannon being one of those names that both genders get to use.) In Austin, when a restaurant is familiar both with the Gluten Intolerance Group and the risk of cross-contamination, I’ve never had a problem despite their disclaimers. I believe such kitchens have good food preparation discipline, at least in Austin. There tends to be a sensitivity here to special dietary needs that I’ve not found in other cities that I’ve visited.

I’m really glad I decided to give them a try. Our waitress, when I described my special needs and the response I had received, told me they had a gluten free menu and brought me a copy of it. Later, when she was describing the special of the day (tostadas with a layer of beans, pork belly, grilled scallops, and a relish of jicama, peppers, and some other things), I realized that it didn’t sound like it contained anything with gluten. I asked her if she could check with the chef and she did. When she came back, she said Jack (Jack Gilmore I presume) confirmed that there were no gluten-containing ingredients. However, the tostadas were fried in a fryer that was also used for dishes that did contain gluten. I was impressed that he immediately recognized the risk of cross-contamination, but the waitress went on to say that he could prepare the dish without the tostadas and substitute corn tortillas instead. The “crunch” would obviously be missing, but everything else would be the same.

So I ordered the special with that modification and I was not disappointed at all. Every element of the dish was exquisite. I loved the beans. The pork belly practically melted in my mouth.The scallops were grilled to perfection. And the “relish” was magnificent. Oh, and the corn tortillas were pretty good as well. It was a fun evening and I heard just how much our customers are going to miss me while I’m working on my new job.

My vegetarian and vegan friends can now be appalled at my dinner selection. What can I say? I can resist many things, but pork belly and scallops? In one dish? Willpower only takes you so far. Of course, my meal also didn’t conform to Orthodox Lenten fasting rules. So I guess that night it was a good thing I’m not Orthodox! The restaurant is a very long way from our home, otherwise my wife and I might be dining there a lot. I noticed they have shrimp tacos that sound exquisite and are a particular weakness of my wife. We will almost certainly go there sometimes, but not frequently because of the distance.

Jack Allen’s Kitchen, though, has definitely made my list of the restaurants at which I will eat. Even if you do not suffer from celiac disease, you will like them. In fact, you will be able to eat a whole lot more off their menu than I can. Everyone enjoyed what they got that night. It was a success all the way around, not just for me.

This month marks the ninth month since I was diagnosed with celiac and began the required gluten free diet. It also marks a full year since the physical which revealed iron deficient anemia and began the testing process that ultimately led to my diagnosis. I have a few more doctors now than I did a year ago. I’m not entirely sure how I feel about that.

I do know that I feel much better now than I did a year ago. I’m not exhausted all the time. My fingers and toes (and hands and feet and arms and legs) aren’t constantly going numb, tingly, or even hurting. My digestion is slowly improving. As much as the physical improvement, though, the mental relief has been a blessing. Simply knowing why these past few years have been so extremely rough has lifted a weight. It’s horrible when you know something’s wrong, but you can’t figure out what it could possibly be. I wondered at times if I was just losing it.

My wife and I have adapted pretty well. I won’t say it’s easy. It’s many things, but easy is not one of them. Still, it would be a lot harder if we weren’t both pretty good cooks and if product labeling was still as bad as I read it was a decade ago. It’s a hard change, but it’s manageable.

I’m sometimes asked if I’m ever tempted to “cheat” on the gluten free diet. I have to confess I’m always bemused by the question and never quite sure what to say. If you knew that eating something was going to make you sick and seriously damage your body — not in the long-term, but in fairly short order — would you be inclined to eat it anyway? Would any sane person? So know, I’m not tempted to “cheat”. I want to keep getting better. I would love to actually reach the point where my body recovers and I can say I’m truly in good health again.

That does not, of course, mean that are not foods I miss and which cannot easily be replaced by anything else. There are. And there are times when I grieve their loss. But that does not translate into a desire to actually eat or drink them. Yes, it’s annoying to always be on guard and always checking the ingredients in anything and everything before I put it in my mouth. It does get tiresome at times. But it’s a small price to pay not to be sick.

Today my wife and I decided to try a new pizza place in Round Rock, Promise Pizza (also on twitter @promisepizza), for lunch. They offer all natural and organic ingredients, have a gluten free crust, gluten free sauce, and gluten free toppings, and, for the vegans or lactose intolerant out there Daiya “cheese” and a vegan crust and sauce. They also have a great lunch special, a personal 8″ one topping pizza (additional toppings at a small added cost), a drink, and cinnamon knots for $5.95.

My wife got the lunch special with chicken and mushrooms for her toppings. She enjoyed the pizza (and I was jealous of the thick, puffy, chewy crust), but absolutely loved the cinnamon knots. She said they were much, much, much better than the typical cinnamon pizza or stix you get at most places.

As is fairly normal, the gluten free crust was only available in one size, the 10″, and wasn’t part of the lunch special. I checked and the italian sausage was gluten free, pretty rare for sausage at a commercial restaurant, so I decided to get that along with red peppers for my toppings. The pizza was very good. They use a more complex and flavorful dough than the typical rice flour crusts I’ve encountered since I was diagnosed with celiac. It was more than simply a platform for transporting the cheese, sauce, and toppings. I actually enjoyed the crust itself. Oh, and they had natural gingerale at the soda machine, immediately endearing their restaurant to me.

My wife’s assessment was that Promise Pizza is a place she wouldn’t mind going back to in the future. Since I have so few quick lunch options and the ones I find are not always thumbs up for her, that was good news. Moreover, it’s the closest place to our home that offers any sort of gluten free pizza. It’s my luck that it’s the best I’ve found so far. Pizza is not really “health” food, but more “comfort” food. But they offer pizza that is as healthy and eco-friendly as pizza can be!

This marks my first six months on a gluten free diet (or within a couple of weeks of six months, anyway). Since I got the results of my blood tests today during my appointment with my gastroenterologist, it seemed like a good time to post a status update.

I had great results! One test (I’m not sure what it measures) went from >160 to <1:10, which the doctor tells me is a dramatic improvement. Of the two TTG auto-antibody tests, one went from almost 100 to 2.8. The other went from almost 40 to 10.3 and was the only test that was still a little out of the normal range.

My doctor told me that I’m obviously complying with the diet, that what we’re doing as a family is working, and to keep doing it. He’s going to have the tests reworked annually to monitor my progress. He was a bit impressed at the rate of improvement. He mentioned that everyone has ‘cheater’ days on a medical diet. I actually don’t. While it’s very hard to be certain you have completely avoided gluten in all situations, I have never yet consciously eaten anything I knew to contain gluten. Any gluten I’ve consumed has been accidental. However, my wife and I have worked hard to avoid such accidents. It’s nice to see those efforts pay off.

For whatever reason, I’m less prone than perhaps some people are to ‘cheat’ once I have actually decided to do something. A friend once told me that most people aren’t like me. They don’t decide something and then do it. Or something to that effect. I didn’t and don’t exactly understand his comment, but perhaps my lack of ‘cheating days’ fits in there somewhere.

I was worried that I was missing something somewhere and that my blood work would not show significant improvement. Changing to be gluten free has not been the easiest thing I’ve ever done. While it takes significantly less willpower than quitting smoking did, eating gluten free is much more complicated. There is so much to check and it’s so easy to make a mistake, misjudge a restaurant or product, or even end up with a contaminated product. I was extremely relieved at the results today.

And, a couple of weeks ago, my HDL (good cholesterol) tested high enough to be in the normal range for the first time since they started testing it some years ago. So I’ve really had two good blood tests in a row.

It seems I really am getting better.

Several weeks ago a Sprouts Farmers Market opened in Round Rock just up the highway from us. On Saturday of their grand opening weekend, they were offering a “bag of goodies” to the first couple of hundred shoppers. So I got up early and went to stand in line. It was definitely worth it. I got a full bag of all sorts of products, many of which were gluten free. And it included hair and bath products my wife has enjoyed trying.

Compared to many people in other parts of the country, especially rural areas, I already had a wealth of stores that are very celiac friendly. However, Sprouts now gives us a very nice store with extensive options that is much closer than either Whole Foods or Central Market. Further, they often have excellent sales on the healthier meat we buy and their produce is great!

Week before last marked the first business trip I had to make since I was diagnosed with celiac disease last April. Fortunately, my job doesn’t require that I travel very often. I’ve never been very fond of business travel and it’s even more of a pain now. This trip was to Ogden, UT. Ogden does not exactly have a surfeit of the national restaurant chains with established gluten free menu options. Further, there were a number of coworkers with me on this trip and we were sharing a single suburban. They all know I have celiac, so that’s not a problem. Nevertheless, eating out together would have required both the lengthy conversation with a waiter and/or manager and would have either severely restricted the places they could eat or would have left me sitting at some places that offered little safe for me to eat.

So I decided to skip the whole eating out thing. I stayed at the Comfort Suites, which provided a small refrigerator and microwave in the room. I packed one of the smallest George Foreman grills so I could easily grill some chicken breasts (seasoned with Tabasco) and gluten free sausage — both of which you can find in just about any grocery store. I saw that there was a Super Walmart near the Comfort Suites, so I visited a local Super Walmart to prepare a menu plan and shopping list. Walmart is hardly my first (or even tenth) choice for grocery shopping. However, they do tend to have similar items stocked in every location, so it seemed like a safe bet. I also packed my insulated lunch box, so I could fix and keep cool my own lunch each day in the office in Ogden.

The week went pretty well and mostly according to plan. The first day, by the time we got to Ogden, checked in, and I had gone shopping, unpacked, and put everything away, I had gone some twelve hours with nothing but a Kind bar and a Larabar. I wasn’t in the mood to cook something to eat and clean up. But I did it nonetheless. I didn’t really get involved in any of the socializing, since what there was mostly revolved around lunches and dinners. But that’s OK. I enjoy being around people, but I’m fine being alone as well.

I did pick up a nasty upper respiratory bug (not the flu) that hit me not too long after I got home. That was no fun, and seems to be one of the little joys of traveling. But the trip was productive and I ate safely the whole week. I did put the mixed fruit (mostly melon) and the greek yogurt I bought under the little freezer compartment in the mini-frig after I had some for breakfast the first morning. The next day it was frozen solid. I was sad about that. But otherwise the menu worked out perfectly!

A couple of weeks ago, my wife was craving a good hamburger (as in nothing from a fast food joint), something we’ve not really gone out to get since I was diagnosed with celiac. I looked online and discovered that Red Robin might be a safe place for me to try since they had a gluten free menu online. So we headed out to the Red Robin at IH35 and Parmer in Austin.

The waitress was knowledgeable and helpful. She brought me the current gluten free menu and stayed around to answer questions. I asked about the fries and she said they were cooked in a dedicated fryer and that she had had other customers with wheat or gluten “allergies” (easier just to go with allergy than to try to explain celiac disease while ordering food) who had experienced no problems.

I decided to try their cheeseburger (with no Red Robin seasonings) in a lettuce wedge rather than simply without the bun. I have always thought the Atkins diet was a strange way to eat, but I was grateful that day that the craze taught restaurants like Red Robin how to create bun-less options. I also ordered the steak fries (again without the seasoning). The food was good. The burger was well-wrapped so I actually could pick it up and eat it like a burger, though lettuce is not the same thing as a bun.

I didn’t have any sort of reaction I could detect. And I loved actually being able to order and eat french fries at a restaurant! Definitely a thumbs up!

After skating at our favorite skating rink, my daughter and I decided to try the new zpizza in Round Rock. They use quality, organic ingredients and, most importantly from my perspective, offer the option of a gluten free pizza crust! As the employee who greeted us was explaining how to order for our first visit, my daughter actually spoke up and told him that I couldn’t eat gluten before I could say a word. He didn’t miss a beat and immediately told me the crust was available for the 10 inch pizzas and handed me the list of gluten free ingredients. I ordered the Greek pizza on the gluten free crust and my daughter ordered her personal favorite, ham and pineapple, on a white glutinous crust.

As we waited, I observed the preparation. While they don’t have a great deal of space in which to work, I noticed they have a smaller, separate work area for the gluten free pizzas. It had its own cutting board, its own slicing knife, and everything. I was concerned about the risk of cross contamination in the confined space and was impressed with how well they had thought it out.

The pizzas? Mine was delicious and my daughter assures me hers was as well. Two thumbs up to zpizza! We’ll definitely be going back again someday.

One of the joys of living in Austin has been the opportunity to experience the Alamo Drafthouse Cinema for years. We first visited Alamo Village not too long after it opened when the original downtown location and it were the only Alamo Drafthouse cinemas to be found. Recent years have seen a lot of growth with franchises and new owners. Today, the Ritz (downtown), Lamar, and Village cinemas are owned and operated by the founders. The also have their own, Original Alamo, site. I have visited some of the other Alamo Drafthouses and while you will have a similar experience at any of them, the ones operated by the founders continue to have a somewhat different quality to them.

I haven’t been to Alamo Drafthouse since I was diagnosed with celiac disease because the thought of trying to navigate the process of locating safe foods in the more chaotic theater environment intimidated me. However, when my wife said she wanted to see Inglourious Basterds this past week, I decided it was time to investigate. I easily and quickly found comments online about gluten free menus at the original Alamo theaters, but not much about any of the others. So I sent an email to Alamo Village explaining that I had recently been diagnosed with celiac disease and asking about their gluten free options. Jay Nolan quickly responded and attached a PDF of their current gluten free menu. (Note that this is the menu in August, 2009 and may not reflect the current menu. Ask for the current one when you get to the theater.) When I had questions about the menu, he referred me to the Alamo Village executive chef for answers.

We arrived at the theater early and ordered the Nachos Libre for an appetizer. For dinner, I had the Once Upon a Time in Mexico salad and it was spicy and delicious. (My wife had one of their amazing, but decidedly not gluten free pizzas.) The waitress understood that I was ordering gluten free and passed that information on to the kitchen so they could be aware as they prepared my food. For dessert, we shared the Creme Brulee. All in all, it was a great experience. Have I mentioned before that I love living in the Austin metropolitan area?

As I already mentioned, my wife and I watched Inglourious Basterds. It’s definitely a Quentin Tarantino film. Don’t expect any sort of correlation in the movie with actual history. It’s more a reimagining of the WWII war movie genre. And it’s a lot of fun in a rollicking, gory, tongue in cheek way. Every character in the movie has at least one screw loose and often more than one.

This film is not as good as Pulp Fiction, the standard against which every Quentin Tarantino film is judged these days. But it is a great deal of fun. If you liked Pulp Fiction or Reservoir Dogs, you will enjoy Inglourious Basterds. If you find the Quentin Tarantino style too gory or vulgar, you probably won’t much like this movie either. It’s very much in the same vein.

And, of course, if you live where you can watch the movie at an Alamo Drafthouse, so much the better!

My brother called last week as he was driving back to LA from working the past six months on a film that will be released in the future sometime and wanted to have lunch as he came through Austin. I had to pick something quickly and decided on P.F Chang’s because I haven’t had Asian food in a long time and they have a gluten free menu. I thought it would be a good time to test and see how well they managed meals for celiacs. I was impressed that their gluten free menu is apparently updated monthly.

I was very pleasantly surprised. After I went through “the explanation” of my condition with the waiter he immediately knew the menu I needed. Even before I saw the menu, he knew the only starter we could get that I could have was the lettuce wraps. He also told me that the soy sauce on the table was not gluten free and brought me a cup of gluten free soy sauce. And then he made a point of letting me know that he would discuss my order with the kitchen to make sure they knew to be careful about accidental contamination when preparing my food.

Wow!

The food was good and that level of knowledge and service was beyond what I expected from a chain, even a more upscale chain. I was definitely impressed by our North Austin P.F. Chang’s!

After an afternoon of rollerskating yesterday, my youngest daughter and I got dinner at the Brick Oven on 35th restaurant. The restaurant is an old house in one of Austin’s older areas near the Seton Medical Center. They have lots of artwork by local artists on display (and for sale) on the walls. The old plaster walls and hardwood floors provide a certain ambience. We enjoyed it.

They have an extensive gluten free menu that includes pizza! I ordered their Hawaiian pizza on a gluten free crust. Even though it was a small personal size, I thought I would only eat part of it and take the rest home. But it was soooo delicious I gobbled the whole thing. My daughter ate all of her pizza (with gluten crust) as well. It’s now the next day and I’ve had nary a sign of any gluten contamination. Of course, if they are going to claim a gluten free menu in the middle of all the medical buildings and practices that surround a major hospital, I suppose they better know what they’re doing!

This is now officially on my list of favorite restaurants! I just wish it was closer to us. Their gluten free pasta dishes are made using brown rice pasta. Their gluten free menu even included gluten free beer! I didn’t have any, but the fact that there’s a place in Austin where celiacs can safely order the classic American combination of pizza and beer is pretty amazing to me.

Definitely two thumbs up!

Actually, it’s more like 3 1/2 months now, but I decided it’s time for an update. I finally got the results of all the latest series of tests in and I have no other condition besides celiac causing bone loss. That’s the best news I could have expected under the circumstances, and hopefully means I will begin to recover bone density in my spine naturally at some point. The endocrinologist wants to do another scan next year. In the meantime, she’s increased the calcium + vitamin D supplement I’m taking to 3X daily: morning, midday, and evening. I do wonder how many years I had undiagnosed celiac for the malabsorption of calcium to actually lead to osteoporosis in my spine. I don’t think that happens overnight.

Otherwise I’m beginning to settle into something of a routine with the gluten free diet. I wouldn’t say it’s easy, but I try to keep my focus less on what I can’t eat and more on the goal for which I am striving. All things considered I could be in worse health. For now it’s a matter of taking it one day at a time.

Tonight after watching Harry Potter 6, my family and I decided to try the Outback Steakhouse for dinner. They are one of the chains that have a gluten free menu. Still, I wasn’t sure what to expect. But I needn’t have worried. The words, “I can’t eat wheat. I have celiac” were barely out of my mouth when the waiter interrupted, “You need the gluten free menu.” I said yes. Exactly. It’s always a relief when I get better than a blank stare. When I ordered, our waiter made a point of telling me he would double-check with the manager to make certain that what I had ordered was safe for me to eat and that he would make sure to let the kitchen know so nothing got accidentally contaminated.

Wow!

That’s the level of service, knowledge, and concern I had previously only associated with premium restaurants like Flemings and locally owned non-chain restaurants. I liked Outback somewhat before my diagnosis with celiac. My opinion of them just went up several notches. Needless to say, we will be going back. Definitely impressed.

Shady Grove is a wonderful and very “Austinish” local restaurant. It’s located on Barton Springs in south Austin and is one of the places the people with whom I work like to go for lunch. I haven’t been to Shady Grove (or many restaurants really) since I was diagnosed with celiac.

Last week, my coworkers were planning a lunch and were also planning to meet a friend of ours who is now retired. I really wanted to go, so I called the restaurant the night before and went through my normal spiel and discovered they had a gluten free menu! (I suspected they might. It’s that sort of restaurant.)

We went to lunch on Thursday and I explained my need to the waitress and she came back with a gluten free menu. Actually, it wasn’t just a gluten free menu. They had sections for dairy free, vegetarian, and vegan selections as well. I had the brisket tacos which were great. There weren’t a huge number of gluten free options, but there were enough for some range of choice. And mostly I was just happy to be able to go out and have lunch with friends safely somewhere.

Two thumbs up and a shout out to Shady Grove!

The video explains this Mayo Clinic study of blood samples saved from the 1950s. Celiac is about five times as common today as then and we don’t know why. Clearly human genetic makeup hasn’t changed in that period of time, so it has to be something environmental. And it is both so common now and so likely to impact survivability if undiagnosed that they are studying whether to switch from testing when symptoms present to general population screening the way we do for cholesterol. Right now about 1% of the population have celiac and most of them don’t know it.

Click here to view the embedded video.