The Gluten Free Diet is NOT a Fad Diet!

Posted: October 31st, 2013 | Author: | Filed under: Celiac | Tags: , , , | Comments Off on The Gluten Free Diet is NOT a Fad Diet!

I wrote the following as a comment on another blog after someone said they couldn’t wait for the gluten free fad diet to go away. Usually I ignore those comments. This time, for whatever reason, I didn’t. The words poured out and I decided to edit it and post it on my blog. So without further ado, here is my response to those who believe the gluten free diet is just another fad diet.

Okay, that’s going to prompt me to pull out my soapbox. šŸ˜‰ I have to confess, I have mixed feelings about the current faddish aspect of the gluten-free diet. On the one hand, it’s educated the broader population. A lot more people now at least know what gluten is. That makes it much easier for me to explain what I can and can’t eat. Restaurants have become a lot more sensitive and knowledgeable about food allergies, sensitivities, and intolerances in general and gluten specifically. (Even though what I have isn’t an allergy, the treatment is the same as that for an allergy.) And it’s now a lot easier than it was to identify a gluten-free food product with confidence. (Part of that is also a result of the labeling regulations the FDA has developed.)

With that said, it has also led to a widespread dismissive attitude by people who treat it like just another fad diet. Mostly I ignore it, but the stories of restaurant chefs and servers who deliberately contaminate food because they are irritated about this “fad”, though thankfully uncommon, are always in the back of my head any time we eat out. Even when someone isn’t malicious, they can still be careless if they think it’s just a fad. We’re very selective in the restaurants in the area that we know and trust, but there is always that first time you try a restaurant that isn’t already on your list. There have been times I simply haven’t eaten the food because something about the food or the service set off warning bells. ( I don’t make a scene based on a gut feeling, but I don’t like that I have to worry about it.)

Fundamentally, the gluten free diet is emphatically not a fad; it’s a medical diet. Nobody would dismiss a diabetic diet as a fad even if, for some reason, it gained a faddish quality among some people who did not have diabetes.

Celiac disease is at the top of the list of medical conditions that are treated with a gluten free diet. Celiac disease remains widely misunderstood by the general population, even when they’ve heard of it. It’s not an allergy or food intolerance. Nor is it limited to GI symptoms.

Rather, celiac disease is an autoimmune disease like lupus, type 1 diabetes, and a number of other pretty serious diseases. When a person has an autoimmune disease, their body produces auto-antibodies that attack itself rather than an invading pathogen. Unlike all the rest of the autoimmune diseases, we actually know what triggers the autoimmune response for those of us with celiac disease — consuming gluten. In a way, I consider myself fortunate. At least I have a chronic, incurable disease that I can keep in complete remission simply by maintaining a strict medical diet. People who have lupus, for example, aren’t so fortunate. All they can really do is try to treat the symptoms and keep it under control, but they are never symptom-free. And none of the medication is free of side effects. And if the first medicine used becomes ineffective, the next one is actually a chemotherapy drug. Similarly, I’ve known a number of people with type 1 diabetes. They have to follow a fairly strict medical diet, watch their blood sugar, and give themselves insulin shots. And their disease is never in remission or fully controlled.

A lot of studies have been done over the past decade or so, including a controlled study here in the US that tested something like 13,000 people in the general population across the country. So we know the rate of celiac disease. In the US, roughly 1% of the population has active celiac disease. That’s roughly the same rate as type 1 diabetes, making those two diseases by far the most common autoimmune diseases. Unfortunately, nearly 90% of those with active celiac disease remain undiagnosed. Moreover, other studies have shown that the rate of celiac disease in the general population has been increasing for decades and is still increasing. (They tested blood samples going back to the 50s and discovered active celiac disease back then had about a quarter of the rate it currently does.)

And that’s because celiac disease can be largely asymptomatic for years as it creates long-term damage. Or its symptoms can seem unconnected to each other and and can range across all the bodily systems. Since even most doctors still associate it exclusively with GI symptoms, if someone doesn’t present with those symptoms, they never consider celiac disease. In reality, celiac disease has over 300 potential symptoms ranging from the classical GI symptoms to neurological to diseases related to nutritional deficiencies and many more. The list is mind-boggling. Over the long-term, it can trigger other autoimmune diseases. It can cause depression. It can trigger ADHD or make it worse. Active celiac disease can even lead to cancer.

The presenting symptom for me when I was finally diagnosed was iron deficient anemia. However, I was then discovered to have osteoporosis in my spine (now almost completely returned to normal). I discovered the “aches and pains” I thought were just part of growing older largely went away. They were apparently the result of systemic inflammation. I was suffering from depression, which is now completely gone. I had mild neuropathy and “brain fog” now also gone. I was an extremely advanced case when I was finally diagnosed and even after almost five years, my body is still healing.

Active celiac disease will kill you. (Studies have shown it significantly reduces longevity.) And it will do so slowly and with significant suffering.

There is a strong genetic component to celiac disease. If you don’t have certain genes, it’s extremely unlikely you’ll ever develop celiac. As a result, though, that means that family members, especially first degree relatives, of someone with celiac disease are much more likely to have or develop active celiac disease than the general population. So after I was diagnosed, I let all my family members know, including my older children. (Unfortunately, except for my older son, I don’t think any of them have actually gotten tested.) My two younger children were both still minors at the time, so we had them tested as a precaution. We were shocked to discover they both had full-blown celiac disease. They were completely asymptomatic. Fortunately, unlike me, we caught it early with them. So they’ll never suffer the extensive systemic damage I did.

However, the diet is extremely strict. I forget the exact threshold, but something like 20-50 milligrams of gluten in a day will trigger a full-blown autoimmune response. (Yes, they’ve studied that as well.) And even smaller levels can trigger some autoimmune reaction. As a result, we talk about gluten as “parts per million” in any given food we consume to avoid reaching the very small daily thresholds. 20 parts per million is the threshold used in the FDA regulations, if I recall correctly. (Mostly I think that’s because we don’t have a test that will reliably detect lower levels of gluten.) But that means that food that has been fried in the same oil as flour battered items or has otherwise been in contact with a gluten-containing food is typically not safe for us to eat.

Moreover, once triggered by exposure, the autoimmune response can take weeks to completely subside and for the disease to return to full remission. (Generally, the acute symptoms from an exposure, if any, subside in a matter of days, but the autoimmune response itself takes much more time.) I recall another case study of a nun who strictly adhered to the gluten free diet except for weekly communion with only a small piece of the eucharistic wafer. Her celiac disease remained fully active even from that small weekly exposure. (I will note that both the Catholic and Orthodox churches hold that communion with either bread or wine alone remains the fullness of communion and can commune those with celiac disease with wine only.)

The doctors who research celiac disease are trying to get it added to the regular screening process like diabetes and cholesterol. Given that around 3 million people in the US have active celiac disease and roughly 2.7 million of them remain undiagnosed and since the disease can activate at any age, that seems reasonable. It’s especially reasonable since it’s so hard to diagnose from the symptoms and can even be largely asymptomatic for years as it damages the body. Moreover, they now have a blood test that is highly accurate and specific, so it’s relatively easy to screen. But the medical community generally moves pretty slowly on such things. Hopefully we’ll get there.

I’ll put the soapbox away now. But please, even though there is presently a faddish quality to the gluten free diet, don’t dismiss it as simply another fad diet. It isn’t. It’s a life-saving necessity for those of us with celiac disease.

 


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. šŸ˜‰

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.Ā  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. IĀ  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