The First Year – Celiac Disease and Living Gluten-Free

One of the books I picked up on celiac (and by far the best so far) is a book by Jules E. Dowler Shepard, The First Year – Celiac Disease and Living Gluten-Free. Jules has celiac and shares her story in the book. In a guide intended for those who are newly diagnosed that’s a critical factor. As she describes things to do and how to work through all the issues we encounter, you know she has been there. She’s not just imagining them.

The book is formatted so that it could be read and followed over a period of adaptation lasting a year from your diagnosis. I suppose some people might read that way. I’m not sure. I definitely don’t. I’m a sponge. I read it the first time over the course of a couple of day, marking pages of particular interest as I went. I’ve since referred back to it a number of times.

The days of the first week are focused on providing the history and the most accurate current information available on celiac disease. The information is easily the most current and most accurate of any book I’ve read. It’s also extremely thorough without ever being dry or overwhelming for someone who just received a pretty major disease diagnosis requiring a fairly dramatic life change.

The book is divided into sections on learning and on living. The sections on living include a wealth of recipes and extremely practical advice for a wide array of situations: birthday parties, business lunches, handling college, eating out, and talking to friends and coworkers about celiac. I highly recommend this book. If I had three thumbs, I would give it three thumbs up! As it is, Jules with have to settle for two thumbs. 😉

The foreword is by Alessio Fasano, MD, the founder of the Center for Celiac Research at the University of Maryland. (I recall that my father did some of his education at the University of Maryland, but I don’t remember any details.) For additional historical information, details on the research done by the center, and studies underway, I recommend watching the following video.

What Is Celiac Disease?

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.