Another Gluten Free Holiday Season

Posted: October 18th, 2010 | Author: | Filed under: Celiac | Tags: , , , , , , , , | 2 Comments »

We’ve had our first real taste of fall here and the signs of the holidays are popping up everywhere. Halloween is around the corner. Thanksgiving will be here in a blink of an eye. And I can sense Christmas looming just out of sight. I haven’t had much to write about celiac because I’ve largely settled into a routine. I mostly eat at home and mostly things we have cooked ourselves from scratch. When we do eat out, we tend to go to one of the same few places we know are safe. I feel better than I’ve felt in years and indications are that my body is steadily healing. I still haven’t found the right balance of foods to eat now that I’m actually absorbing more from them which, combined with erratic exercise habits as my new job has taken more of my time, means my weight has been jumping up and down (though more up than down lately). And, to put it delicately, my digestive tract still doesn’t quite function normally. But I’m doing so much better than I was that the issues which remain seem more like minor annoyances.

This will be my second gluten free holiday season, but the first for my two younger children. Our celebrations at home are easy since we cook everything ourselves. It also shouldn’t be too difficult for our son. The cafeterias at Baylor do an excellent job of meeting all sorts of dietary needs, including his. Our daughter, though, will face the round of middle school parties where she will probably not be able to eat much of anything. And there seems to be somebody bringing food to work during this period for one reason or another almost every week. And they tend to forget that I can’t eat it and offer me some or ask why I’m not having any. It doesn’t particularly bother me, but I remember enough about those middle school years to know that it’s uncomfortable to stand out at that age. Being different is not a good thing. But our daughter has a solid group of friends who help look out for her. And one of those friends recently found out she also has celiac disease.

My wife and I have the gluten free candy lists at hand, so we’re ready for Halloween. My wife adapted her secret family recipe for cornbread dressing (which my wife had already improved) to be gluten free last year, and that’s one of the most important holiday dishes that wasn’t naturally gluten free. Both kids have learned to be cautious and think before they eat, which is really the most important thing during this time of the year when food is everywhere around us. I think we’re as prepared as we can be.

I did get one bit of really good news a few days ago. My older son was tested for celiac disease and he does not have it. So at least one of my kids didn’t inherit it from me. And they know enough to be aware if my granddaughter develops any signs or symptoms, but so far she’s fine as well. I was so relieved to hear the news. They are young, don’t have a lot of money, and live in a small town setting. Celiac would have been a lot more difficult to manage for them than it has been for me. I was worried, especially after discovering both my youngest children had inherited the disease.

That’s my periodic celiac update. I hope everyone reading has a wonderful holiday season this year. Peace.


May Is Celiac Disease Awareness Month

Posted: May 4th, 2010 | Author: | Filed under: Celiac | Tags: , , , | 2 Comments »

May is designated Celiac Disease Awareness Month. As I’ve gradually healed and continue to heal since my diagnosis roughly a year ago, I’ve begun to understand how important it is to raise overall awareness of this disease. While celiac disease is an autoimmune disease that affects roughly the same percentage of the population as type 1 diabetes, it has had a much lower level of recognition. In large part, that’s because it tends to have a more gradual onset presenting with over 300 possible symptoms. While some people are impacted so severely by celiac disease that they experience major distress, like kidney failure, in a fairly short period of time, most of us experience the slow development over time of a bewildering array of seemingly unconnected symptoms. In fact, I didn’t even recognize some of my symptoms as symptoms until they began to fade when I eliminated gluten from my diet after my diagnosis.

Study after study tells us that the vast majority of people suffering from active celiac disease remain undiagnosed. In that sense, I’m one of the fortunate few. My family doctor was alert enough to tie unusual blood work with several other seemingly unrelated things and referred me to a gastroenterologist even though I was not specifically complaining about any digestive tract symptoms. (I did and do have a number of such symptoms, but they developed so slowly that I didn’t notice the onset and were not severe enough to trigger any awareness that something was seriously wrong.)

The blood tests for celiac disease have now been improved to the point that, given its prevalence and difficulty of diagnosis, it should become one of the things for which we routinely screen. We know that 95% or more of those with active celiac are undiagnosed. We know that they have a 500% higher risk of developing certain cancers, are at a greater risk of developing other autoimmune diseases, and are at risk for a host of other long-term health problems. Further we know the disease is notoriously difficult to diagnose correctly from symptoms alone. Since we have pretty accurate blood tests now (which was not true as recently as 10 years ago), why would we not screen for it?

The Celiac Nurse has posted a great article for Celiac Disease Awareness Month that, among other things, provides the links to her year-long, in-depth articles on the categories of symptoms associated with celiac disease. I strongly recommend taking the time to read her post and the linked series. It’s very likely that somebody reading this post has celiac disease and doesn’t know it.


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

One Month Gluten Free

Posted: May 11th, 2009 | Author: | Filed under: Celiac | Tags: , , , , , , , , , , | Comments Off on One Month Gluten Free

It’s been more or less one month since my EGD and since I began working to be gluten free. With the help of my wonderful wife, I think I’ve been mostly successful at it. It’s been quite the crash course learning curve. I thought I would pause for a moment to compare the state of my physical health, or at least the things I’ve noticed so far.

Like many of those with celiac, I did not have major digestive symptoms or any intestinal pain. My intestines and nutrient deficiencies will take more than a month to heal, so nothing major on that front. I do think now that some of the things with my digestion that I had considered normal may have been related. I’m certainly adapting to a radically changed diet! Time will tell the rest here.

The place of biggest surprise, though, are in the improvements I have felt in a host of other areas unrelated to digestion. Celiac is an autoimmune disease, so its impact and symptoms are not limited to the digestive tract. I’ve been gradually learning some of these other symptoms and its in these areas that I’ve seen dramatic change.

My hands and feet no longer go numb and tingly frequently and easily. I just thought they went to sleep easily, but it turns out this is a neurological symptom. And its mostly stopped for me. I can lean on my arm or elbow without my hand ‘going to sleep’. Same with my feet when sitting crosslegged or in a chair with one leg curled up. It might seem very minor, but it’s so nice.

I’ve almost stopped having sharp, shooting muscle pains. I didn’t realize how bad these had gotten until I went skating with my daughter again. Right before my diagnosis, it had gotten so bad that when she went as fast as we go in the rink, my back and side and leg hurt enough that I couldn’t even come close to keeping up. A week ago? I was going as fast as she was and had no pain at all. No limping. No sudden back pain. I guess I thought I was out of shape or getting old or something similar. They didn’t cripple me. They just hurt enough to slow me down. And they are almost gone.

I used to almost constantly have canker sores inside my mouth. After the ones I had at the time of my EGD healed, I’ve had only one.

My mind has been noticeably less ‘foggy’. And my overall mood has been greatly improved. I simply have more energy. I’ve been recovering little things I thought lost forever. This past week, for instance, I’ve started waking up again many days a few minutes before the alarm goes off. I used to do that all the time and haven’t in a very long time.

It’s only been a month and already the change has been greater than I ever expected. This autoimmune stuff is nasty.