Zilker Summer Musical – Little Shop of Horrors

Posted: July 13th, 2013 | Author: | Filed under: Personal | Tags: , , , , | Comments Off on Zilker Summer Musical – Little Shop of Horrors

Zilker Summer Musical PosterLittle Shop of Horrors!

Seymour! Audrey! And that strange and interesting plant, the Audrey II!

What time is it, everyone? It’s time once again for the longest running free summer musical in the country, the Zilker Summer Musical! Personally, I’ve been to almost every performance since the 80s. I know that since 1990, the performances in 1996 and 2007 are the only ones our family has missed.

As sponsors, my wife and I attended the BBQ dinner and preview performance on 7/11. The performance was wonderful. (If you’ve only ever seen the movie version, there might be a surprise or two in store for you.) The dinner put a slight damper on things. I could have sworn I read something that indicated Green Mesquite would be catering it again like they did last year and I had researched the food and knew what I could eat. As it turns out, though, Pok-e-Jo’s catered it instead. Unfortunately, I didn’t notice until after I had eaten the food. And while I saw after I checked their site that I could have eaten safely, unfortunately two of the items I ate were not gluten free. 🙁 Sometimes it sucks to have to celiac disease. It just reinforces that I always have to check and double-check every time before I eat anything my wife or I didn’t prepare.

I apparently didn’t get a ton of gluten, so while I didn’t feel great later that evening and yesterday, it wasn’t as bad as it has been in the past. Of course, I don’t tend to have as strong a set of acute symptoms as some people who have celiac disease, which is why I had such extensive systemic damage by the time I was finally diagnosed. Still, it didn’t ruin my evening. My wife and I loved the performance and had a great time.

After the dinner and before the show, we headed down to Barton Springs pool and stuck our feet in the water for a while to cool down. It really helped a lot, especially since my wife is sensitive to too much sun and heat.

Tomorrow I’ll be headed back with my youngest daughter and one of her friends. We’ve been doing Shakespeare in the Park and the summer musical for some years now. When we go, we make it a full day. We spend it at the pool, which has lots of space to lounge and read and relax between dips in the pool. My daughter and her friend never stop talking until the show starts! Even as teenagers, sometimes they’ll head over to the nearby Zilker Playground. We pack plenty of drinks and food and make sure to get our blankets out right at 6:00 (the earliest you’re supposed to place unattended blankets).

If you live in the Austin area and you’ve never been, try to work it into your summer schedule this year. It’s a lot of fun and you won’t regret it!


FrankenWheat

Posted: August 20th, 2012 | Author: | Filed under: Celiac | Tags: , , | Comments Off on FrankenWheat

There are parts of this article that are over the top. Among other things, there isn’t generally gluten in vodka (distillation removes the heavy proteins) nor is there gluten in envelope adhesive. However much of it is quite true. The wheat we eat now bears little resemblance to the wheat we have eaten for most of our history — and even that wheat is a relatively recent introduction to the human diet.

I do want to note the distinction he makes in the article about modern wheat being more likely to trigger celiac disease. That does not mean older wheat is somehow safe for celiacs to eat. The autoimmune disease doesn’t work that way. Once triggered, any gliadin based gluten will trigger an autoimmune response. But we have so many more with celiac disease today because the disease is now triggered much more often than it was even as recently as the 1950s.

I also like the way he stresses the fact that gluten-free processed food is still bad for you. Do I indulge at times? Sure. And it shows in my weight gain over the past three years as I’ve come to terms with this disease and struggled to adapt to an entirely different way of eating. Too many people today seem to assume that simply removing gluten by replacing foods with gluten-free junk food is all you need to do. It isn’t.

My wife actually forwarded me the above article and even though she doesn’t have active celiac disease, she’s now considering going gluten-free herself. She already has auto-immune issues and, since her husband and two younger children do have active celiac disease, it’s not really a stretch for her. She would just have to stop eating gluten when she goes out to eat. Pretty much everything in our house and every meal is already gluten free.

Thoughts from anyone? Should those without a diagnosed problem with gluten but with other potentially related health issues consider going gluten free? Heck, should everyone start avoiding FrankenWheat?


Celiac Update – Osteoporosis

Posted: July 23rd, 2012 | Author: | Filed under: Celiac | Tags: , , , , , , | Comments Off on Celiac Update – Osteoporosis

After I was diagnosed with highly advanced stage celiac in April 2009, my gastroenterologist ordered a bone density scan. The results showed full blown osteoporosis (I believe around -2.4) in my spine. I was shocked. No middle-aged man ever thinks about osteoporosis. My doctor referred me to an endocrinologist. She decided to treat me with a regimen of maximum calcium supplements (600mg three times daily) and see if that in combination with strict adherence to a gluten free diet would suffice. She noted that none of the medicines for osteoporosis are tested on middle-aged men and there’s no clinical data of any significance. She didn’t want to make me a guinea pig and I wasn’t inclined to be one.

The following year, my bone density scan had improved to the osteopenia range (-1.9 or -1.8, I believe) so my instructions were to continue my treatment plan. Last year, there was no significant change, but since it didn’t get any worse, my doctor wanted to continue the regimen.

This year my numbers improved to -1.1 (anything under -1.0 is considered normal). It’s still osteopenia, but barely. My doctor wants to wait two years for my next bone density scan since at this point there’s unlikely to be significant change in a year. But it looks like I beat osteoporosis! That’s good news in my book.


Lab on a Chip

Posted: June 11th, 2012 | Author: | Filed under: Celiac | Tags: | Comments Off on Lab on a Chip

I ran across the following article, about an inexpensive and easy to use celiac disease test, and it’s description of a “lab on a chip” intriguing. My younger kids suffer no real acute physical symptoms from celiac. Before I was diagnosed, even though my villi were completely flattened, I had osteoporosis (though I didn’t know it), and a host of other issues, I didn’t have the severe gastrointestinal symptoms some celiac sufferers have. Even now, I’m not always certain if I’ve been exposed or not.

For people like us, any sort of test like this — especially one we could do at home — would be invaluable. And, as they mention in the article, it’s a technology that could be used for more than celiac disease.

Yes, there are potential ethical questions always surfacing from our research in biotech and genetics. But it also greatly enhances the quality of our lives and our ability to help those who suffer from disease. It’s impossible to have one without the other. All things considered, I’ll take the good even with the issues that it raises.

Even just three years ago when I was diagnosed, hardly anyone I knew seemed to know what celiac disease was. Now it receives more attention than I could have imagined. The world changes quickly sometimes.


KinniToos Chocolate Vanilla Sandwich Cookies

Posted: May 28th, 2012 | Author: | Filed under: Food Reviews | Tags: , , , | Comments Off on KinniToos Chocolate Vanilla Sandwich Cookies

KinniToosMy son and daughter have both handled their celiac diagnosis really well. Obviously it’s not what any teenager wants to learn, and I still feel irrationally guilty for passing the genes for this disease on to them, but they’ve made the most of it and adapted well. Recently, when students were seeking choir officer positions at school, many of them brought the traditional food bribes for votes. My daughter noted somewhat ruefully that she couldn’t eat any of the cupcakes, cake balls, or cookies. But at least there was some gluten free candy, so she could have something.

One of my daughter’s favorite cookies before she was diagnosed was Oreos. It’s not something she ever ate frequently. But for picnics, especially at events like the Zilker Summer Musical and Shakespeare in the Park, at sleepovers, and at Girl Scout outings Oreos were a “go to” cookie. Unlike most of the other foods she enjoyed, that’s also not one either my wife or I had any idea how to recreate from scratch at all, much less using gluten free ingredients.

Fortunately, we discovered KinniToos! Frankly, though I’m not sure how good my memory of Oreos really is, these seem pretty much identical in texture and taste. More importantly, my daughter thinks they are as well. (And when she shares with her non-celiac friends, they love them too.) The cookies are, of course, significantly more expensive than Oreos, but well worth the price from my perspective. I don’t want my daughter to feel like this disease is depriving her of things she loves — at least to the extent that I can prevent it.

At any rate, we highly recommend them. KinniToos are fantastic!


Happy Thanksgiving!

Posted: November 25th, 2010 | Author: | Filed under: Celiac, Personal | Tags: , , , , , , , , , | Comments Off on Happy Thanksgiving!

I wanted to take a moment to wish everyone who chooses to read my reflections and musings a Happy Thanksgiving! (If any of you aren’t US natives, it’s a thing here where we celebrate an idealized conception about the formation of our nation and during which we are supposed to give thanks.) I know that the holidays can be a deeply depressing time for many and I hope that’s not the case for any of you.

I am deeply thankful, as always, for my family. And though it perhaps sounds strange, I am deeply thankful for a God who became one of us and who meets me always where I am. I can love a God who understands me that deeply. I can worship a God who has suffered with us. And I long for a God who makes all things new.

My wife mastered gluten free holiday cooking last year, so it won’t be a problem this year when most of us have been diagnosed with celiac. I couldn’t tell the difference in her cornbread dressing last year. If anything, it was even better than it had been in the past. And the dressing was the main thing that needed to change. My wife always made her giblet gravy with corn starch, not flour. Most of the other staples of the holiday are naturally gluten free if you don’t introduce gluten during preparation. Cranberries, turkey, potatoes, and sweet potatoes are all naturally gluten free ingredients.

We also bought a free range, organic turkey from Sprouts this year. We are least trying to eat less industrialized food and have some care about the way our food animals are treated — which matters both for ethical and health reasons. It’s hard in our modern society where we are so disconnected from our food. But we’re committed to at least making the effort.

Grace and peace to all!


Another Gluten Free Holiday Season

Posted: October 18th, 2010 | Author: | Filed under: Celiac | Tags: , , , , , , , , | 2 Comments »

We’ve had our first real taste of fall here and the signs of the holidays are popping up everywhere. Halloween is around the corner. Thanksgiving will be here in a blink of an eye. And I can sense Christmas looming just out of sight. I haven’t had much to write about celiac because I’ve largely settled into a routine. I mostly eat at home and mostly things we have cooked ourselves from scratch. When we do eat out, we tend to go to one of the same few places we know are safe. I feel better than I’ve felt in years and indications are that my body is steadily healing. I still haven’t found the right balance of foods to eat now that I’m actually absorbing more from them which, combined with erratic exercise habits as my new job has taken more of my time, means my weight has been jumping up and down (though more up than down lately). And, to put it delicately, my digestive tract still doesn’t quite function normally. But I’m doing so much better than I was that the issues which remain seem more like minor annoyances.

This will be my second gluten free holiday season, but the first for my two younger children. Our celebrations at home are easy since we cook everything ourselves. It also shouldn’t be too difficult for our son. The cafeterias at Baylor do an excellent job of meeting all sorts of dietary needs, including his. Our daughter, though, will face the round of middle school parties where she will probably not be able to eat much of anything. And there seems to be somebody bringing food to work during this period for one reason or another almost every week. And they tend to forget that I can’t eat it and offer me some or ask why I’m not having any. It doesn’t particularly bother me, but I remember enough about those middle school years to know that it’s uncomfortable to stand out at that age. Being different is not a good thing. But our daughter has a solid group of friends who help look out for her. And one of those friends recently found out she also has celiac disease.

My wife and I have the gluten free candy lists at hand, so we’re ready for Halloween. My wife adapted her secret family recipe for cornbread dressing (which my wife had already improved) to be gluten free last year, and that’s one of the most important holiday dishes that wasn’t naturally gluten free. Both kids have learned to be cautious and think before they eat, which is really the most important thing during this time of the year when food is everywhere around us. I think we’re as prepared as we can be.

I did get one bit of really good news a few days ago. My older son was tested for celiac disease and he does not have it. So at least one of my kids didn’t inherit it from me. And they know enough to be aware if my granddaughter develops any signs or symptoms, but so far she’s fine as well. I was so relieved to hear the news. They are young, don’t have a lot of money, and live in a small town setting. Celiac would have been a lot more difficult to manage for them than it has been for me. I was worried, especially after discovering both my youngest children had inherited the disease.

That’s my periodic celiac update. I hope everyone reading has a wonderful holiday season this year. Peace.


Health Care in the US

Posted: September 20th, 2010 | Author: | Filed under: Celiac, Personal | Tags: , , , , , , , , , , | 10 Comments »

As a rule, I don’t tend to post on political issues, mostly because I don’t tend to write about or otherwise wrestle with such matters at any significant level. I do stay generally informed, and I also find that much of what passes for political discourse in our country is pretty abysmal.

Health care, however, is one issue which does concern me a great deal, especially since at least two of my children have inherited celiac disease from me. Personally, my wife and I are somewhat insulated and secure from the worst of what has happened to health care in the US over the past decades. I’m a federal employee and as such we are covered under the FEHB. Twenty years ago, the FEHB offered pretty average employer insurance plan with low to average benefits and costs. Over the past couple of decades, I have watched our health care coverage become better and less expensive than that of almost everyone else I know.

And my health care plan has not significantly changed.

Let me say that again. Over the past twenty years, I’ve seen my health care plan go from, at best, a middle of the road plan, to one that seems to be better than that of most of the people I know without changing. I have watched the overall level of health care access and coverage dramatically decline for almost everyone else around me.

That’s not to say they aren’t constantly tweaking and adjusting my health care plan each year. Some years we pay a bit more in deductibles and other copayments. Some years we pay a bit less. Premium costs have pretty much risen every year, but at a less dramatic pace than that of many people I know. They did add a PPO network in the nineties, and reduced coverage for care received by non-participating medical practitioners and facilities. But the plan’s PPO network is so large, that’s been a non-issue. I don’t think there’s ever been a doctor or facility we wanted to use that was not a preferred provider on our plan.

As a result, my wife and I have been somewhat insulated from the abuses in health care coverage in this country and it’s less likely to ever be a critical issue for us personally. However, at least two of our children inherited celiac disease from me — that is they’ve been tested and positively diagnosed with active celiac disease. Thus, they already have one strike for a pre-existing condition and it’s a condition which can manifest in a huge variety of ways. They also have a family history for a variety of other conditions they could develop over the course of their lives. So from a personal perspective, the issue of health care does strike close to home.

However, that statement is true for every single one of us. The odds that we or someone we love will face some sort of serious, life-threatening, and individually unaffordable (unless you happen to be a Bill Gates or Warren Buffet) health crisis at some point in our lives approach certainty. And within the context of the privatized, for-profit system we allowed to balloon over the course of the past two decades, the odds were unacceptably high that during that almost inevitable health crisis, we would not have access to the level of care we might expect and our family would be crippled by debt for the care we did manage to receive. This is clearly the sort of problem that can only be mitigated by sharing the risk, responsibility, and cost as a society. It’s for reasons like this that we group together as a society and a country. There are many things we can do together that we simply can’t do alone.

Of course, it’s a scientifically demonstrated fact that the way our minds function leaves us remarkably poor at evaluating and acting on those sorts of risks. Even when we know the odds, we tend to have irrational optimism that we can beat the odds in some situations. (That’s one reason why, in every flood here, there are usually people who get in trouble and even die from driving around barriers and into flooded low water crossings.) Conversely, we tend to inflate threats that seem riskier, but which actually have a comparatively lower and often even minimal chance of impacting us. The biggest risk many of us personally encounter on any given day is the risk of simply driving to work, school, or the grocery store. But if you ask people to list or rank risky activities, that rarely makes the list at all.

In this instance, managing health care at the societal level in some way is the common sense thing to do from a self-oriented, pragmatic perspective. Ironically, it’s also the only thing you can do if you claim to love your neighbor. In this country, we have organized ourselves as a form of representative democracy. One of the things that means is that we all share in the responsibility of ruling our country. As Christians, that has particular implications. It means we face, though perhaps on a more distributed scale, exactly the same sort of dilemmas that Christian emperors and other rulers have faced throughout history. We are the powers and authorities who will be held accountable by Jesus for the way we have exercised that power. We cannot escape that responsibility and we cannot abdicate it. There are no easy answers to the proper use of that power. There never have been.

Unfortunately, there is no easy button.

So what are our options? I’ve studied what other countries do to some extent and it seems to me that most employ variations of one of three different general approaches. (Yes, I know there are a lot of ideas out there, but most countries seem to actually end up doing one of three things.) It also seems to me that part of our problem is that we are trying to use them all in a disorganized and hodge-podge manner rather than selecting one approach for everyone in our country. If we are going to truly share the risk, responsibility, and cost, it doesn’t seem effective to me to take that approach, especially if, as you’ll see, we segregate pools of those with higher risks and costs from those with lower risks and costs.

So what are these options?

  1. Government run health care. In this system, the government owns the hospitals. Most doctors and other health care practitioners work for the government in those institutions. And basically, health care is delivered directly by the government. England is one example of a system like this. There are many variations and permutations.
  2. Single payer health care. In this system, the doctors and other practitioners largely do not work for the government, nor does the government own or directly operate most of the hospitals and other facilities. Instead, the government is the single payer for health care services. They negotiate payments and they usually distribute the costs to some degree across the populations based on your ability to pay. Canada is one example of a system like this. Again, there are a lot of different ways to do it, but they do share the same common characteristics.
  3. Government regulated health care insurance exchange. Here, the government does not directly pay most health care costs. Instead, it establishes and regulates an insurance exchange and mandates the participation of all citizens in order to spread the risk across the population. Such a system typically must include subsidies for groups like the poor. Switzerland’s system is generally the model for a system like this.

Those are the basic, widely used options. And here’s where the arguments of those who seem to oppose almost anything that is proposed turn irrational. Why? Because we employ all of the above approaches in our country and have for a very long time. Yes, I know there has been widespread demagoguery over government taking over health care or socialized medicine, but though it has been noisy, it’s had no basis in reality. I don’t personally have any strong preference for one system over another. But my life has been such that I prefer to maintain some connection to the world as it actually is rather than my fantasy about it.

Let’s start at the top of my list. Because we are so large as a country, we actually have a government run health care system that rivals that of some smaller countries. It’s called the Veteran’s Administration. While the VA operates many programs on behalf of veterans, one of the largest is certainly the network of doctors, hospitals, and clinics it runs. We hear about it in the news when there is a problem with a VA hospital, but they mostly do pretty amazing work — especially when you consider that we usually choose to underfund them. If a government-run health care system is good enough for those who have served us in our military, tell me again why it wouldn’t be good enough for all of us? Be careful how you answer that question. Though I’m not eligible for care through the VA, I am a veteran.

Or let’s move to the next item on my list. Our government-operated single payer system is the largest single health care system in our country and is much larger, I believe, than Canada’s entire health care system. Our single payer system, of course, is called Medicare. In the debates over health care, both Republicans and Democrats publicly defended Medicare. I remember some of my older relatives, especially the ones with serious illnesses and inadequate coverage, anxiously waiting to reach the Medicare enrollment age. It has problems, of course, because of the way we’ve chosen to structure and fund it over the years, but as a system it works well enough that threats to take it away seems to raise the ire of those who have it.

Finally, even before the recent Act, we had government-regulated insurance exchange option available. It’s the one that has covered my family and me for most of my life, the Federal Employee Health Benefit (FEHB) program. OPM has regulated the program pretty well over the years and overall it’s worked pretty effectively.

The recently passed health care reform act requires that similar exchanges be established at the state level (or the state can opt into a national exchange), but the only population of those exchanges will be those who do not have health care coverage through their employer and who do not participate in any of the above health care systems. (And yes, I know I left Medicaid off my list, but it’s similar to Medicare in the way it functions.) That’s certainly an improvement over our current situation, but it means the pool will be a lot smaller which isn’t very good for sharing the cost and risk across the population.

Personally, I believe we need to move toward some single system. As I said, I don’t have any strong feelings about any particular system. Since I’ve participated in the FEHB for twenty-five years, I probably have a slight preference for expanding it to be the single exchange for all United States citizens. That’s not necessarily easy. In order to fund it and make it affordable, we would probably have to mandate that large businesses pay at least the same portion of the premium for their employees that the Federal Government does for its employees. And then we would need to develop appropriate subsidies for individuals and people in various categories such as the poor and the elderly. And it would obviously require a larger regulatory body than OPM currently has in place. But it could work if we had the will to make it work. Switzerland has proven that it’s possible.

In the interim, the health care act has some excellent features. The changes to prohibit denial of coverage of preexisting conditions and the end of the evil practice of rescission alone are very worthwhile. The extension of coverage under parental plans until the age of twenty-six means I will be able to keep my younger two children (both with celiac disease) on my insurance for as long as should be necessary. The insurance reform requiring that a minimum of 85% of premiums be used to cover medical loss is a great first step. I still remember when the typical medical loss by our mostly non-profit insurance companies was 95%, so I’m not impressed by the 85% number. Still, it’s better than the current 70%-80% medical loss. 85% is at least less egregious than the current situation. There are others, but those were the ones that I found particularly relevant.

Nevertheless, it’s a patchwork law that really doesn’t do enough. That doesn’t upset me terribly. That’s how things usually work with us. The health care reform act was a good start. Now we just have to keep making it better while trying not to take any steps backwards.


Van’s Waffles

Posted: May 31st, 2010 | Author: | Filed under: Food Reviews | Tags: , , , , | 1 Comment »

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.)

Van's Minis

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.


Larabars and Kind Bars

Posted: May 28th, 2010 | Author: | Filed under: Food Reviews | Tags: , , , , , | Comments Off on Larabars and Kind Bars

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.

Peanut Butter Cookie Larabar

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.