Celiac Update – Osteoporosis

Posted: July 23rd, 2012 | Author: | Filed under: Celiac | Tags: , , , , , , | Comments Off on Celiac Update – Osteoporosis

After I was diagnosed with highly advanced stage celiac in April 2009, my gastroenterologist ordered a bone density scan. The results showed full blown osteoporosis (I believe around -2.4) in my spine. I was shocked. No middle-aged man ever thinks about osteoporosis. My doctor referred me to an endocrinologist. She decided to treat me with a regimen of maximum calcium supplements (600mg three times daily) and see if that in combination with strict adherence to a gluten free diet would suffice. She noted that none of the medicines for osteoporosis are tested on middle-aged men and there’s no clinical data of any significance. She didn’t want to make me a guinea pig and I wasn’t inclined to be one.

The following year, my bone density scan had improved to the osteopenia range (-1.9 or -1.8, I believe) so my instructions were to continue my treatment plan. Last year, there was no significant change, but since it didn’t get any worse, my doctor wanted to continue the regimen.

This year my numbers improved to -1.1 (anything under -1.0 is considered normal). It’s still osteopenia, but barely. My doctor wants to wait two years for my next bone density scan since at this point there’s unlikely to be significant change in a year. But it looks like I beat osteoporosis! That’s good news in my book.


Celiac Family

Posted: July 12th, 2010 | Author: | Filed under: Celiac | Tags: , , , , | 1 Comment »

It’s been a rough couple of months. Since celiac has a strong genetic component, we decided it would be wise to have our two younger children screened for celiac disease as part of their annual physicals. My wife and I were shocked when both of their blood panels came back not just positive, but strongly positive for celiac. (The most specific celiac test was literally “off the chart” for both of them. It exceeded the maximum measurement used by the test.) It’s been an emotional roller coaster. The odds that any first degree relative (parent, sibling, or child) of someone with celiac disease will also have active celiac are roughly 1 in 22, so we didn’t really expect either test to be positive, much less both. It was enough of a statistical oddity that my wife decided to get screened as well, just to make sure they weren’t getting a genetic double-whammy. But her celiac panel was normal, which means they both got it from me.

Of course, there isn’t anything I could have done about it. I didn’t control my own genetic makeup, much less the genes I passed on to my children. Rationally, I know that. But it still feels awful to know that you passed an incurable (though manageable) disease on to your children.

We’ve now gone through the cycle of gastroenterologist appointments and small intestine biopsies. The biopsies confirmed the celiac blood panel for both of them, so there’s really no room left for doubt. I’m proud of my kids. They’ve both handled the diagnosis surprisingly well. Obviously, they aren’t happy about it, but they are putting as positive a spin on it as possible. My son, who is headed off to college, commented that it would force him to avoid most fast food, which he called one 0f his “weaknesses”. He’s something of a fitness nut and was happy to confirm that his preferred protein shake powder was gluten free. College will be a challenge for him, but he’s going to a university that seems to have a pretty high degree of awareness about celiac and other special dietary needs, so that’s a plus.

Our youngest is just entering her teen years. I imagine the next few years will be particularly challenging for her. And she’s more visibly upset about the diagnosis than our son. Still, she tries to be more positive than not.

This does demonstrate the importance of screening, especially if someone in your family is diagnosed with celiac disease. The one positive from this is that neither of my children yet have any celiac-related health problems and if they maintain a gluten free diet, they will never develop any of them. The immediate effect of celiac disease — damage to the villi of the small intestine — rarely produces visible symptoms until significant damage has been done. So if you wait until visible symptoms appear to test for celiac, then you’re waiting for the person to be hurt enough by the disease that it will take a lengthy period of time to recover from both the primary and the secondary effects of the disease. My kids have had relatively little damage done to their bodies at this point and do not yet have any of the secondary symptoms. With a moderate amount of self-discipline, they’ll never develop the myriad problems I developed. That, at least, is something positive.  I try to reinforce that with both of them.

A negative celiac blood panel does not rule out the possibility that you will develop the disease. Only a genetic test can do that. So if you have an immediate family member with celiac, it’s probably a good idea to still be screened every 3-5 years after a negative blood panel. It’s a simple blood test and trust me, it’s much better than having the disease ravage your body undetected for years.

I guess I would say that I’m crushed both kids inherited this from me, but glad that we caught it before it really hurt them. I’m also really glad the new health insurance law allows both kids to stay on my insurance until they are 26 and prohibits coverage denial for pre-existing conditions.

On a personal note, I had my first annual follow-up appointment today for the celiac-related osteoporosis in my spine. After a bit more than a year gluten free and taking 1800mg of calcium spaced out three times each day in 600mg doses, my osteoporosis has improved to the less serious osteopenia. Basically, I’m gaining bone density without medication, which is a really good thing. (Nobody tests osteoporosis medication on middle-aged men.) Hopefully next year I’ll be at or near the normal bone density range. That was really good news to hear. I’ve been as careful as I know how to be and it’s good to have my effort validated. I’m also feeling better than I’ve felt in years. Now I need to get back on a more disciplined diet and exercise regime. I used to be really good at both, but that’s one of the things that fell by the wayside as I felt worse and worse before my diagnosis.


3 Months Gluten Free

Posted: July 21st, 2009 | Author: | Filed under: Celiac | Tags: , , , , | 3 Comments »

Actually, it’s more like 3 1/2 months now, but I decided it’s time for an update. I finally got the results of all the latest series of tests in and I have no other condition besides celiac causing bone loss. That’s the best news I could have expected under the circumstances, and hopefully means I will begin to recover bone density in my spine naturally at some point. The endocrinologist wants to do another scan next year. In the meantime, she’s increased the calcium + vitamin D supplement I’m taking to 3X daily: morning, midday, and evening. I do wonder how many years I had undiagnosed celiac for the malabsorption of calcium to actually lead to osteoporosis in my spine. I don’t think that happens overnight.

Otherwise I’m beginning to settle into something of a routine with the gluten free diet. I wouldn’t say it’s easy, but I try to keep my focus less on what I can’t eat and more on the goal for which I am striving. All things considered I could be in worse health. For now it’s a matter of taking it one day at a time.


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?


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