P.F. Chang’s

Posted: August 1st, 2009 | Author: | Filed under: Restaurant Reviews | Tags: , , , , | Comments Off on P.F. Chang’s

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!


Brick Oven on 35th

Posted: July 26th, 2009 | Author: | Filed under: Restaurant Reviews | Tags: , , , , , , | Comments Off on Brick Oven on 35th

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!


And If I Don’t Heal?

Posted: June 17th, 2009 | Author: | Filed under: Celiac | Tags: , , , , , , , , , , , , , , , | 1 Comment »

I prefer the best and most accurate information I can obtain. At all levels and circles of my life I try to interact with reality as it is rather than as I desire it to be. That does not mean that my understanding of reality does not adapt or evolve. It is constantly doing both — anything less would simply be another form of hiding from reality. I think I understand some of the reasons I am shaped that way. Some of it probably has something to do with developing some sense of control in situations where I often had very little.

But sometimes reality can be a little disheartening.

I’ve read this article, When Celiac Disease is Diagnosed in Adulthood, Intestines Don’t Always Heal Completely, several times now. The article reports on two studies presented by two different research teams at a recent medical conference.

The Irish study is not too bad — though I do have a lot of Irish in me, so that catches my attention. In it, at least two-thirds of those who did not have intestinal healing at the two to three year mark also had poor compliance with the gluten free diet. They did not stick to the fast. That stresses the importance of strict adherence to a gluten free diet over the long haul, but I had already absorbed that. Believe me, I am taking this seriously.

The Mayo Clinic study, though, does not share that problem. Most of their participants had good adherence to a gluten free diet. But their percentages were not markedly different.

In one presentation, Dr. Alberto Rubio-Tapia and colleagues from the Mayo Clinic in Rochester, Minnesota described their study of patients whose celiac disease had been diagnosed (and confirmed with a biopsy) during adulthood and who later had additional biopsies to determine whether or not their intestines had healed.
— Of 141 adults who had been gluten-free for less than 2 years, only 79 (56%) had healed intestines.
— Of 65 adults who’d been gluten free for 2 to 5 years, only 37 (57%) had healed intestines.
— Of 27 adults whose intestines were examined more than 5 years after they became gluten-free, only 14 (52%) had intestinal healing.

It seems that my odds are about even that my small intestine will heal completely. I can do everything I’m supposed to do and it still comes down to a flip of a cosmic coin. I do not appreciate the irony.

It seems that two of the factors that appear to influence recovery are age when diagnosed and the extent of villi damage. Neither of those are in my favor. I’m a middle-aged guy in my forties and my villi were basically gone when I was diagnosed. Visually, instead of white shag carpet, my small intestine looked like pink tile. Under the microscope, my doctor said it looked like my villi had been mown down by a lawnmower on its lowest setting.

On one level it doesn’t really change anything. I have to continue to develop the rythms and patterns of a life free from gluten. I will continue to work to shape my life with the rythms of prayer, not because I believe it is some form of magic or that I can somehow manipulate God, but simply because I know I need help to maintain this fast. It goes back to that integration between body and spirit I’ve discussed elsewhere.

I’ve already seen some of the acute symptoms, including ones I had no idea might be related, subside. And as I maintain the fast from gluten, I will heal at least some. And some healing has to be better, even if I remain at greater risk for complications associated with celiac. And who knows? My particular coin might still be heads. I might heal completely. If these studies had not been done, I wouldn’t even know that it’s something we need to monitor.

Still, I would be lying if I said the study didn’t bother me. I had more of a sense of control before I read it. And at least when it comes to my closest circle, the circle of my mind and my body, I strongly dislike loss of control. I suppose I find it threatening.

Oddly, I’m already doing as well as I know how on the gluten free diet. I will try to make it even healthier to the best of my ability. And I will continue to learn more. But there is little more I can do in that arena.

I can, however, do much better at developing and maintaining the rythms of my practice of prayer. Perhaps a place to start?


The Didache 1 – The Two Ways

Posted: June 10th, 2009 | Author: | Filed under: Celiac, Didache | Tags: , , , , , , , , , , , , , , , , , , , , | 3 Comments »

This series is reflecting on the Didache if you want to read it separately.

There are two ways, one of life and one of death, but a great difference between the two ways.

I’m not the sort to separate the crunchy physicality of the Christian story from its spirituality. Yet, as I’ve read this opening line from the Didache lately, I realize that I have nonetheless kept its earthiness at a certain level of abstraction. Celiac makes that starkly real to me.

I face two ways. I can continue to consume gluten if I choose. If I do, I will pay a price. My health will continue to degenerate. I will get sicker though there is no specific, predictable progression. But it will certainly involve pain and decline leading to an unpleasant death after decades of ill health.

Or I can cease consuming all gluten to the best of my ability. As I succeed in doing so my body will heal, my health will improve, and the ultimate quality of my experience of reality will take on brighter hues.

There is a way of life and a way of death. Which way will I make the rule of my life?

It seems obvious to me, but I understand there are some celiacs who refuse to stay on a gluten free diet though they know the price they will pay. Even when the choice is so stark and obvious, because it is not immediate, some choose the way of death.

I’ve been captivated by this line since my diagnosis. It runs through my mind unbidden and at odd times. The choice for the human being is just as stark. We can choose to consume God and be progressively healed, experiencing ever more of true life, learning to taste, touch, smell, hear, and see reality around us as God pierces our delusions. Or we can consume that which is not God and take death into the core of our being.

Yes indeed, there is a great difference between the two ways.

There is more connected to this one line. It’s deeply Jewish in nature. The Way of Torah was a way of shaping life and experiencing God through the mitzvots, feasts, and rituals of Torah. It’s in that context that Jesus’ statement about being the way stands revealed. As the fulfillment of Torah, he places himself in its stead. Follow Jesus and shape your life through his commands, through his body, through his blood.

Jesus is the way of life. Certainly life in the present, but also a life that endures.

Why would we choose to eat death instead?


How long have I had celiac? (Or musings about the ancestral sin)

Posted: June 4th, 2009 | Author: | Filed under: Celiac, Faith | Tags: , , , , , , , , , , , , , , , , , | 3 Comments »

How long have I had celiac disease?

It’s an interesting question that should be relatively straightforward to answer. But it’s not actually that easy.

On one level I have had celiac for less than two months. That’s how long it’s been since I was given a firm diagnosis, I began attempting a gluten free diet, and how long I have lived with the certain knowledge that I have a specific, definable disease.

But on another level, it’s been more than three months (or a quarter of a year) since celiac was mentioned as a possible cause for my anemia, I began researching the disease, and realized that I had many other symptoms of the disease as well. This is how long celiac has been in my consciousness as something that might relate to me.

Of course, on a physical level, based on the damage to my intestinal villi, my blood auto-antibody levels, and my broad nutritional deficiencies, it’s clear that celiac has been active at least a decade, perhaps more. Since I had something like what they call “silent” celiac, we’ll never know for certain.

So perhaps the question can’t actually be answered. Perhaps it’s indeterminate.

Or maybe it’s not.

The other night I had a sudden epiphany. There is an absolute answer.

I have been a celiac for a little more than 44 years — ever since I was born.

How so? Celiac disease is an inherited, genetic autoimmune disease. You either have the genes for celiac when you are born or you never get it. They even know the genetic markers for which to test. If you have inherited the genes, the disease can be triggered and become active by any of a very wide range of triggering events.

In the case of celiac, inheriting the genes does not necessarily mean the disease will ever be triggered into an active state. It’s my understanding that perhaps as many as a third of those with the celiac genes will never manifest active celiac. However, if you don’t have the genes, you aren’t a celiac and cannot ever become one. It’s a disease with which you are born — or not.

I then considered that according to the most recent rigorous studies, from 75% to 90% of active celiacs are currently undiagnosed. The disease is quietly destroying their ability to absorb nutrition from food and perhaps causing any number of other symptoms while they continue through their lives blithely unaware of that which is at work in their body. In other words, they are like I was until a few months ago. I had some awareness that everything was less than copacetic, but had no idea why and no awareness of the seriousness of my problem.

Those who know me will probably not be surprised that I next began pondering the ancestral sin and the ways in which celiac disease acts as a metaphor for it. 😉

We are all born mortal. Unlike celiac, for which perhaps only about 1% of the population carries the genes, we are all born with the seed of death at work in our bodies and in and through the entire world around us. This is our inheritance from the ancestral sin. It’s obviously not a direct genetic transmission or limited only to human beings in its impact, but is more of a spiritual inheritance with physical effects.

As we mature in a damaged world carrying our own mortality, we inevitably fail in our trust of God in ways that are typically defined in Christian circles by the word ‘sin’. It’s a label, really, for what happens when human beings worship something or someone that is not God. In many ways, this is like what happens when the genetic disease of a celiac is activated. Of course, assuming we survive childhood and have sufficient capacity, it is inevitable that “sin” will become active in our lives. Once activated, sin begins working within us in ways that intertwine with death, which may sometimes turn quickly and painfully destructive or which may be largely silent and unnoticed for years as it wreaks its damage.While we all tend to develop some sense of the brokenness of the world we inhabit, some may live out their whole lives only growing aware of death working within them and not of sin reshaping and distorting their humanity.

With celiac, we restore ourselves to health by removing gluten from our diet. By contrast, we are healed from sin and death by consuming God. The healing and restoration of our body and spirit flows from God through Jesus, the one who joins our nature to God’s and makes it possible for us to take God into our being. As we submit our will to God’s through our believing and active allegiance to Jesus of Nazareth and learn to cease fighting God’s healing presence our ability to relate to God and to other human beings in unbroken ways is restored.

We often find metaphors for our whole life in odd places, but the parallels in this one seem striking to me — perhaps because I’m the celiac.


What Is Celiac Disease?

Posted: May 30th, 2009 | Author: | Filed under: Celiac | Tags: , , , , , , , , , , , , , , , , , , | 2 Comments »

Update 10/12/2009: The Gluten-Free Doctor has posted just about as comprehensive a list as I can imagine of the possible symptoms of celiac disease.

Given that I often have and will refer to celiac disease on this blog, I realized I should write a post that explains the disease. I know that prior to my diagnosis I had a number of misconceptions and it’s likely, if you’ve heard of the disease at all, that you do as well. Everything I write here is based on my best current understanding, but that certainly doesn’t mean there won’t be some errors in what I write. As I discover any potential errors, I will update this post so it remains as accurate as I can make it. There are actually a variety of terms used to refer to celiac and “celiac” is not actually the most medically accurate. However, it is the common term and the one I will use on this blog, so I won’t bother going through all the possibilities.

First, I think I need to clarify what celiac is not, since this is the area where I was most confused prior to my own diagnosis with the disease. Celiac is not an allergy nor is it an intolerance. An allergic reaction, for instance to wheat, is your body’s mistaken immune system response to a substance that is actually harmless. Your body creates antibodies that attach themselves to the molecules of the substance and then floods your system with histamines to cause other cells to attack the substance. An allergic reaction can create a wide array of symptoms, but subsides when the allergen is removed or antihistamines take effect. As long as you stay away from the allergen there is no further long term effect. The amount of allergen that triggers an allergic reaction will also vary from individual to individual and may change over time. It is even possible for people, especially children, to grow out of an allergy.

A food intolerance (gluten intolerance, lactose intolerance, etc.) occurs when your body is unable to metabolize a particular food. Typically a food intolerance will produce a lot of gastrointestinal symptoms, but as long as you don’t eat the food in question you’re fine. Even if you do eat the food in question, you only have to deal with the immediate short-term result of your decision or mistake.

Celiac disease, on the other hand, is an autoimmune disease.  If you aren’t familiar with that category of disease, that means that your body’s immune system inappropriately attacks itself. With celiac, we know that the inappropriate immune system response is a response to gliadan, a protein in the gluten molecule which is found in wheat, barley, and rye (and cross-breeds and other related grains). We do not know what activates the disease in those with the appropriate genetic makeup. From what I have read, it appears that the disease will never activate in about one-third of those with the genetic markers. And there is apparently no way to predict the age at which it will activate in those who have it. This is actually something of a blessing, though. As far as I can tell, this is the only autoimmune disease with which we actually know the trigger for the inappropriate immune system response. With celiac, if you remove gluten, you send the disease into full remission.

The direct effect of celiac is that your immune system attacks and damages the villi in the small intestine that have absorbed the gluten you’ve ingested. The villi are tiny hair-like tissues (described as something like a shag carpet in the intestine) that absorb the nutrients from the food we ingest. As they are blunted and flattened, your small intestine loses its ability to absorb nutrients. Over time, that will lead to the malabsorption of food and nutritional deficiencies. I know I have struggled with calcium deficiencies in the past, in retrospect probably as a result of celiac disease. Despite both medication and altering my diet, I’ve also remained severely deficient in the “good” cholesterol, again likely as a result of celiac. It was when I became anemic, though, something which is highly unusual in an otherwise fairly healthy middle-aged male, that the warning flags went off for my physician and the sequence of events that led to my diagnosis (fortunately only one month later) began. In my case, when the EGD and endoscopy were done, the first part of my small intestine looked completely pink and smooth like tiles, not like a shag carpet at all. Clearly, I had been suffering from celiac for a long time, probably a decade or more.

However, that is not the end of it. Since celiac is an autoimmune disease, it also does not respond immediately to the removal of gluten from your diet. Most people begin to feel better in days or weeks, and I have begun to feel better in areas unrelated to digestion. However, it usually takes about six months for your immune system to return to normal as determined by blood tests. And it takes from six months to two years for the damage to the small intestine to heal. Basically you stop eating all gluten and in a few weeks you’ll begin to feel better. Maybe in a year you’ll be well. That aspect of the disease is a little frustrating to someone like me who, at the time of this writing, is still in the early stages of recovery.

Also since it is an autoimmune disease, if someone with celiac does not stop eating all gluten they have an increased likelihood that their malfunctioning immune system will trigger another autoimmune disease such lupus, thyroid disease, type 1 diabetes, liver diseases, or rheumatoid arthritis. Celiacs also have an elevated risk of developing gastrointestinal cancers. Celiac may also cause neurological damage and is hereditary. It’s a nasty disease and the consumption of as little as an eighth of a teaspoon of gluten (1/1000 of a slice of bread) is sufficient to keep it active if you continue to ingest that small amount each day or even several days a week. The occasional accidental ingestion of a small dose, which will happen despite your best efforts, won’t significantly affect the health of most people. It’s not like a severe allergy where even a tiny exposure can cause shock and death. But it is imperative that any ongoing exposure to gluten be eliminated.

Recent rigorous clinical studies have demonstrated that 1 out of every 133 Americans suffer from celiac disease. It is hereditary, so first degree relatives of a celiac are much more likely, about 1 in 22, to have the disease. That makes it comparable to type 1 diabetes in prevalence. However, the vast majority of those with celiac, perhaps as many as 90% are currently undiagnosed. Why? Because until things get really bad, for a lot of people celiac doesn’t have a lot of clear and overt symptoms. (And there is still a fair level of ignorance or misinformation in the medical community as well.) That was certainly true for me. Looking back, my digestion has probably been a little off for a long time, but no serious pain or anything that pushed me to think something was wrong. I  have had a lot of symptoms that are not digestive tract issues but which are directly related to celiac. I just didn’t know the various disparate symptoms were even related to each other.

This is a list of some of the symptoms that could indicate celiac disease:

  • anemia
  • autoimmune disorders
  • behavioral changes (think depression, mental fogginess, irritability, inability to concentrate, etc.)
  • bloating and gas or abdominal distention
  • bone or joint pain
  • changes in appetite
  • chronic diarrhea
  • colitis
  • collagen vascular disease
  • constipation
  • dermatitis herpetiformis (skin rash)
  • delayed growth in children and delayed onset of puberty
  • dizziness
  • easy bruising
  • failure to thrive in infancy
  • fatigue and lethargy
  • fibromyalgia
  • hair loss
  • headaches
  • hypoglycemia
  • hyposplenism
  • increased risk of infections
  • infertility and miscarriage
  • iron deficiency
  • irregular or speedy heartbeat
  • lactose intolerance
  • liver disease
  • lupus
  • lymphoma
  • malnutrition
  • missed menstrual periods
  • mental fogginess
  • muscle cramps
  • nausea
  • vomiting
  • neurological problems (schizophrenia, ataxia, epilepsy, etc.)
  • nosebleeds
  • osteoporosis or esoteopenia
  • pale, foul-smelling, bulky, and/or fatty stools that float
  • pale skin
  • seizures
  • short stature
  • shortness of breath
  • Sjogren’s syndrome
  • some intestinal cancers
  • thyroid disease
  • tingling or numbness in the hands and feet.
  • tooth discoloration or dental enamel defects/loss.
  • type 1 diabetes
  • ulcers inside the mouth
  • vitamin or mineral deficiency
  • weight loss or weight gain

There are now blood tests that will detect the antibodies (and probably other markers – I haven’t studied the details of the three blood tests in the panel) associated with celiac disease that can be used to screen for the disease and to monitor progress on a gluten free diet post-diagnosis. An endoscopy of the upper portion of the small intestine remains the certain form of diagnosis. The damage to the villi is not always visually evident like the damage to mine was, particularly if the person has not had the disease for very long. But it will show up in the biopsy.

That’s a quick intro to celiac disease based on what I currently understand about the disease. For a more detailed look into the history of celiac disease, recent studies and developments, and future research directions, watch the following presentation by Alessio Fasano, MD, the founder of the Center for Celiac Research at the University of Maryland.

http://www.youtube.com/watch?v=MQHiBC_O9Y4