Two Months Gluten Free

Posted: June 10th, 2009 | Author: | Filed under: Celiac | Tags: , , , , , , , , , , | Comments Off on Two Months Gluten Free

It’s now been roughly two months since my diagnosis of celiac and thus two months attempting to eat and live free of gluten. It’s definitely continued to be a learning experience. I’m still not certain how well I’ve done in my efforts. But I think I’ve done pretty well. We’re still learning how to avoid cross-contamination, the art of reading labels, and techniques for dealing with restaurants (though I have not gone out to eat very much since my diagnosis). I’ve certainly not intentionally ingested any gluten. And I am getting more proficient at this life each day.

It seems most of the short-term benefits were the ones I experienced in the first month. There have been no dramatic or even noticeable additional improvements this past month. I suppose I’ve now settled into the long haul of healing and recovery where progress is measured in months rather than days or weeks. I can live with that.

I met with the dietitian and in addition to outlining the types of food I need to be certain to eat, the frequency with which I need to eat something as my intestines recover, and similar advice, she has me taking a lot of vitamin supplements (and refrigerated probiotics capsules) to try to compensate for my damaged small intestine over this interim period. That too is beginning to settle into a routine, though I’ll be glad when I don’t have to take so many pills every day.

I’m not yet finished with my rounds of new specialists, though. While the results from my bone density scan weren’t horrible, they did show some osteoporosis in my lumbar spine (lower back). So the gastroenterologist is referring me to another specialist. (I believe she’s an endocrinologist.) I think (or at least hope) that we’re done discovering the various things that are wrong with me as a result of celiac disease and can move on toward the part where I start getting better.


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.


Celiac & Autoimmune Diseases

Posted: June 3rd, 2009 | Author: | Filed under: Celiac | Tags: , , , , , | Comments Off on Celiac & Autoimmune Diseases

I’ve been looking at some of the other videos by Dr. Vikki Petersen and noticed this one. As an autoimmune disease, celiac makes you more vulnerable to other autoimmune diseases. I also have had canker sores inside my mouth frequently for a very long time now. I never thought much about them before. I guess I thought they were just things people get. They were more of an annoyance than a serious problem. Or so I thought. Ah well. Live and learn.


Celiac & Depression

Posted: May 31st, 2009 | Author: | Filed under: Celiac | Tags: , , , , , , , , , | 1 Comment »

I found this video by a Dr. Vikki Peterson interesting and helpful. As I mentioned in my post explaining celiac disease, as an autoimmune disease, it can damage your nervous system. If it does, it can produce a host of different symptoms up to and including altering the chemical balance in your brain leading to clinical depression. As I’ve looked through the list or neurological symptoms I’ve realized that though I never had severe gastrointestinal problems like some people, I have had the neurological symptoms for years, up to and including a bout with depression. Other nervous system symptoms I’ve had include numbness and tingling in extremities, periods of mental fogginess, unexplained irritability, sharp pain in different locations/muscles that would show up for no reason, last usually for hours, and then fade away. For me, the most significant short-term benefit of going gluten free has been that those symptoms are either gone completely or are going away.


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

Fasting and Humility

Posted: May 20th, 2009 | Author: | Filed under: Celiac, Fasting | Tags: , , , , , , , , , , , , , , | 1 Comment »

Only weeks into this gluten free fast, I already begin to understand the reason for the linguistic linkage between humility and humiliation, at least for someone with my longstanding private and often even stoic demeanor. That private aspect to my nature is the primary reason I never started my own blog. Celiac is taking that and stomping it into the ground.

My now familiar litany when I step into a restaurant, especially if I have not had the opportunity to research it online, is: Hi. I have celiac disease. Do you have a gluten free menu? Often, I have to clarify and explain exactly what that means. Frequently I end up speaking to the manager, who consults with the chef or cook to see if they can safely feed me something. The question becomes less about what I like to eat and more about finding something I can eat without damaging my body.

It is unpleasant to have to do that – every time. The great joy for me of the meal at Flemings was that this unpleasantness almost, but not quite, vanished. For a brief time, I felt almost normal. If I’m offered something to eat, I can no longer simply take it and try it. Instead I have to ask what is in it or simply decline the offer. It becomes impossible to simply be one of the group. If food is involved, I am forced to stand apart and always will be to one extent or another.

In a very small way I begin to understand the ‘chip on the shoulder’ that some of those with real disabilities can acquire. There is something soul crushing about always being the one who is different, the one who is limited in some way. My illness cannot even begin to compare to an actual disability. But through it, I can see how the perceived humiliation could easily turn to anger and anger to bitterness. Even though my situation is not a true parallel, I understand now in ways I would not have understood before.

Fasting, at least as described by Jesus, is something to be undertaken with humility. If not, then the recognition and honor you receive or expect to receive from others is all that you will receive. It’s hard to be humble. It’s hard to accept. It’s hard to be forced to expose your weakness and rely on the care and empathy of others – even in small ways. As I proceed forward, I also begin to understand that a little better than I did before.

I don’t know that I am any humbler than I was before, but I have certainly, in some ways, been humbled.


Red Lobster

Posted: May 19th, 2009 | Author: | Filed under: Restaurant Reviews | Tags: , , , , , , , | 7 Comments »

To celebrate our mother’s doctoral graduation, my brother took everyone out to Red Lobster. I told our server that I had celiac disease and asked if they had a gluten free menu. They do not have one. I ended up talking to the manager who consulted with the chef. They told me that anything grill off the fresh catch menu with broccoli should be fine for me. I order the grilled salmon with broccoli.

Everyone was helpful and nice. I have no complaints about the service. And the food was ok. I never had the sort of pain or other strong symptoms that some with celiac have before my diagnosis. I am only now beginning to figure the various reactions and symptoms I have had as a result of celiac as they gradually clear up and go away. So I am by no means certain, but I think something I ate during the meal did contain gluten in some form after all. I’m not sure at all, but it would explain how I felt and my body reacted afterwards.

That’s one of the frustrating things about my particular experience with celiac. I don’t get badly sick like some people do. I don’t have major pain or anything else obvious. It’s not that I want to be sick or feel pain. But since the damage to my body is the same whether I know I’ve eaten gluten or not, it worries me when I’m unsure as I was after the Red Lobster meal. It could have just been my paranoia over eating at a place I had not had the chance to research that was not very celiac friendly combined with the physical effects of all the driving I had done combined with a short night of sleep.

Or maybe there was some amount of gluten in the food.

I probably won’t go to Red Lobster again. Or if I need to for a social event, I think I’ll just get coffee. 😉


Not the Fast I’ve Chosen – Epilogue

Posted: May 17th, 2009 | Author: | Filed under: Celiac, Fasting | Tags: , , , , , , , , , , , | 4 Comments »

This series has barely managed to scratch the surface of many different and often deep topics. I never intended it to deeply cover everything in depth, but rather to lay the groundwork for my focus on this particular subject on this blog. I’m sure I will visit and revisit many of the topics touched on in this series in other posts and in other series. If you’ve read this series, you now know something of what I intend here, what my life has been, and how I speak and think.

I don’t know what this journey will be like. I don’t know what to expect. It’s very strange to have a whole category of food turn from something nourishing into poison. It’s even stranger when that category includes all that we normally think of in that most basic of staples, bread. Jesus, of course, transcends all. I’m not overly concerned that I am in any way cut off from his life-giving substance, especially after a reassurance from an Orthodox priest I know online and whom I trust. But bread is so central that Jesus described his body as the bread that comes down from heaven. He said that we the bread and the life. He taught us to pray, “Give us this day our daily bread.”

There are many worse diseases I could have and may one day have. I know that. And I’m grateful that I don’t need chemo, radiation, surgery, or any of a host of similar treatments. If I change the way I eat, I will recover. And yet it is disturbing at a very deep level when bread, the stuff of life, turns deadly for you. At least it is for me.

Thank you for reading. This particular series is concluded, but the discussion will continue.


Not the Fast I’ve Chosen – Part 9

Posted: May 16th, 2009 | Author: | Filed under: Celiac, Fasting | Tags: , , , , , , , , , , , , , , , , , , , , , | 1 Comment »

I closed my train of thought in my last post with the idea that, though God has not given me celiac disease for any reason whatsoever, he has been quietly at work preparing me and giving me the tools, should I care to employ them, to stand and perhaps even grow in the face of this disease. For the reality is this: though the diagnosis is still so new to me that I have a difficult time truly wrapping my head around it, celiac disease has been working havoc in my body for years now. My gastroenterologist can’t even say how long it’s been active, but from the visible evidence and the other physical effects, it has clearly been a long time. That means that for at least some significant portion of the journey of discovery about Christian fasting that I have described in this series, I was actually suffering from this autoimmune disease.

I may not have known I had celiac disease, but God certainly did.

Now, I suppose I could be angry at God for knowing I was sick and doing nothing to heal me or somehow making me aware of it sooner. But that seems rather pointless to me. Further, I know that God’s purpose is to bring me into his life, to have me and all humanity participate in union with God and with each other, to conform us to the image of his Son, who lived the life of the faithful man God intended each of us to live.

My core cultural formation was such that the center of my being was shaped in more hedonistic and narcissistic ways than not. Would God physically healing me, especially if I didn’t even know I was sick, move me closer toward the center of the life of God? Or is my true and holistic healing to be found in the proper ascetical practice that allows me to heal from the effects of this disease? Might not that path carry healing not only of body, but also of spirit and will? I see the possibility. I see it through the lens of all I have read and heard and encountered of Christian fasting. No, I’m not angry at God at all. I know him. I know how much he loves all of us. And I’m beginning, just beginning, to understand something of the way of life. I understand enough to know that I desire more than simply a body which functions properly. I want to become truly human.

So no, this is not the fast I’ve chosen. It’s not a fast I want. But this is the fast I’ve been given. Will I have it be a fast for the physical and spiritual healing of my whole soul? Or will I have it be a fast of misery and destruction? Will I take advantage of the tools that God has graciously prepared me to use, even if I am still a neophyte and clumsy in their use? Will I choose instead to fast the fast of demons, a narcissistic fast, a fast that is all about me? Or will I ignore the fast altogether and destroy my body? Those are truly the only real choices I face at this  juncture. As the Didache says, “There are two ways, one of life and one of death, but a great difference between the two ways.” Narrow is the way of life. Broad is the way of death and destruction.

I choose life, in the fullness of the sense of the word.

This is my fast.