Who Am I?

Osteoporosis and Celiac Disease

Posted: June 6th, 2009 | Author: | Filed under: Celiac | Tags: , , , , , , , , | Comments Off on Osteoporosis and Celiac Disease

As a middle-aged male, osteoporosis was not even on my radar. However, it’s one of the significant risks for an adult celiac of any age or gender, especially if the disease has been active long enough to significantly damage the small intestine and cause nutritional deficiencies. I’ve had a bone density scan, though I don’t have the results yet. And I’m gathering additional information. I’m a sponge. When I want to learn about something, I tend to learn a lot and learn quickly. In this video, Dr. Vikki Petersen answers a question from a 34 year old woman with osteoporosis that is not getting better on a gluten free diet. That’s a concern, of course, after any diagnosis like this. What if you do everything “right” (or as well as you can) and your body still never fully recovers?


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

Not the Fast I’ve Chosen – Part 2

Posted: May 9th, 2009 | Author: | Filed under: Celiac, Fasting | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Comments Off on Not the Fast I’ve Chosen – Part 2

Before I continue in the direction I pointed at the end of my first post in this series, I want to spend a little more time on the intertwined, interlocking, and interpenetrating nature of our body, mind, and spirit. I know it is often a foreign idea to those shaped within our American culture, but the concept is central not only to this series, but to the formative thoughts behind this entire blog. I think the common attitude of our culture is captured by a statement like this:

Celiac is an autoimmune disease. It’s a medical condition and the medical prescription is a gluten free diet. It’s purely physical (or some might say secular or natural). What does a disease or medical condition have to do with anything spiritual?

Such is the nature of our age. Even if we’ve never read Plato and never studied philosophy, we have absorbed from the cultural air we breathe and within which we live something of his deep dualism between the material and the spiritual. We see the two as separate categories. And thus we talk about a person’s body or a person’s spirit as though they were separate things and had little to do with each other. But that does not describe reality. Change the chemistry of my brain and you will change my personality. Much of the life of my spirit, for good or ill, is played out in the field of my body. I am not a spirit contained in a body nor am I wholly defined by the matter which forms my body. As a human being I am the union of the spiritual and the material. I am the dust of the earth imbued with the breath of God. I am a living soul – the union (and often disunion) of body, mind, and spirit. You cannot alter or remove any of the three without changing who I am in essential ways, without changing my very being.

So yes, celiac is a medical condition, an autoimmune disease. The treatment is a strict diet that requires me to fast from anything containing gluten – an entire category of food. And a fast is always spiritual as well, for good or ill, whether or not we acknowledge it as such. As the faithfulness of my adherence to this fast will heal or harm my body and my mind, so the spiritual impact of the fast will propel me along the way of life or along the way of death (as the Didache describes the two ways).

If I ignored the spiritual dimensions of this fast, I would effectively be fasting without prayer. And the Fathers of Christian faith have many warnings about such fasts. Fasting without prayer is the ‘fast of the demons’, they say, for the demons do not eat at all because of their incorporeal nature but they also never pray. So I see already that this fast must be intertwined with and shaped by a strong rule of prayer if it is not to shrink my spirit. Interestingly, we also find that fasting without love is another fast of the demons. St. Basil the Great writes:

What is the use of our abstinence if instead of eating meat we devour our brother or sister through cruel gossip?

I do not believe it is at all wise to be careful in the physical aspects of this or any fast and ignore the spiritual dimensions. I also do not believe our actions or inactions in such things are morally neutral by default. If I do indeed follow Jesus of Nazareth, then I am saying something definite about both God and man by doing so. And I must act and live accordingly.

In the next post in this series, I’ll continue in the direction I had originally planned for the series.