Men's Osteoporosis Support Group
Celiac sprue is defined by the Feighery in a recent BMJ article (See review reference below) as having the following characteristics:
1. An inflammatory disease of the upper small intestine that
results from gluten ingestion in genetically susceptible
individuals.
2. Inflammation may lead to malabsorption of several
important nutrients.
3. Clinical and mucosal recovery after
institution of gluten-free diet is objective evidence that the
enteropathy is gluten induced. It is closely related to
dermatitis herpetiformis, a skin rash that also responds to
withdrawal of gluten.
Celiac sprue can be a very difficult disease to diagnose as it has many signs and symptoms or can be virtually asymptomatic. It affects many parts of the body, but is generally associated with gastrointestinal (GI) upset and diarrhea, osteoporosis, and can lead to cancer of the GI system. There may also be a problem with absorption of pain medications in people with celiac sprue. So failure to respond to oral pain medications can be another indication of this condition. Individuals with osteoporosis who have associated GI problems or who are not responding properly to therapy should ask their physicians for diagnostic tests to determine if they have celiac disease (CD). This document is provided as a link from the Men's Osteoporosis Support Group Web site in an effort to help men who think they might have CD get more information about that condition.
To give you an idea how difficult a disease to diagnose CD can be, I'm going to reprint a portion of two e-mails I received. The first is from a very nice person who lost a good friend to the consequences of osteoporosis caused by CD. It will give you an idea not only how hard CD can be to diagnose but also the severity of the consequences if a proper diagnosis isn't obtained in a timely manner. Here are the details:
"I had a friend who died of what was believed to be osteoporosis. He died when he was 35. He had started to develop bone deterioration symptoms approximately 8 years before his death. By the time he was properly diagnosed with celiac sprue his bone density was less than 30%. He had tried Fosamax, taken literally tons of calcium pills, vitamin D, magnesium, all the stuff they say helps your bones be strong. None of it was being absorbed into his bloodstream due to the celiac sprue. He went about 6 months with the proper diagnosis and had regained about 5% of bone mass, before he slipped and fell, breaking a rib which punctured his heart. His bones were just so brittle. He had seen some of the best orthopedic docs in Colorado but none figured out what he really had. Celiac sprue is a disease in which the lining of the small intestine is damaged by an acute allergy to wheat, oats, rye, etc. It causes the malabsorption of nutrients, especially calcium and vitamin D. And it can lead to severe osteoporosis!" [Editor's notes. From my readings, it has recently been determined that oats may not be a problem in CD, but wheat, barley, and rye gluten definitely are. However, until there is conclusive evidence that oats are safe, they should be avoided by people with CD. Also, note that this person's explanation of CD as an "acute allergy to wheat, oats, rye, etc." is not exactly correct. According to Feighery (see the review article referenced below), "Coeliac disease is an inflammatory disease of the upper small intestine and results from gluten ingestion in genetically susceptible individuals."]
After I wrote this section I had the woman who wrote the e-mail that I quoted from above and the mother of the young man who died from the punctured heart review this page. The young man's mom suggested that I add one thing, Physicians are generally not aware of celiac sprue and won't consider it as a diagnosis. You must print out this page describing celiac disease and take it with you when you see your physician.
The second email is from a 47-year-old man who was diagnosed with CD after finding he had severe osteoporosis. His case is important because he was totally asymptomatic, thus emphasizing the importance of testing for CD when there is no apparent cause of osteoporosis or the osteoporosis isn't responding to therapy. Here is his story:
"I have never had any symptoms of sprue and never suspected
it until my daughter's gastroenterologist suggested that my wife and
I have blood tests. My wife's were negative, while both of mine (I
think they tested for two antibodies) were positive for sprue. I then
went in for a gastroscopy, which was also positive. I spoke with my
gastroenterologist earlier this week and he told me that based on the
severe nature of my osteoporosis I've probably had celiac sprue for a
long time. Unfortunately, the long-term osteoporosis also went
undiagnosed until I had a bone
density test after breaking
my arm and then my leg within the span of a month a couple of years
ago. My primary care physician did some research and found that
osteoporosis is a common result of untreated celiac disease. Of
course, now that we know about celiac disease and osteoporosis, I've
been reading all kinds of information about it on the
Web.
Unfortunately, nobody looks for osteoporosis in a fairly
young male--or any male--for that matter. (My Fosamax packages still
say the drug is for post-menopausal women!) It was apparently so
uncommon in my immediate area that the only place with a bone density
machine was a local women's health center.
My daughter had all of the typical symptoms pretty much from the time she started eating solid food. She hated food that most toddlers like, such as pasta. Initially they thought she had "failure to thrive," but testing showed that her intestinal villi were completely flat. This explained the constant diarrhea, stomach aches (which she couldn't articulate at a young age), and other symptoms typical of celiac sprue. I had none of those symptoms, so I never suspected that I had the same problem. The disease is apparently common in people of Scottish and English descent, and my ancestry is not from the UK, so doctors weren't really looking for it. It was only after the osteoporosis diagnosis that we made the association to celiac-sprue as the cause of the low bone density."
The conventional "first step" in diagnosing
celiac sprue is to have a physician perform a series of serum
antibodies tests while the patient is
still eating the glutens in
question. The serum tests are known as IgG Gliadin Antibodies,
IgA Gliadin Antibodies, IgA Reticulin Antibodies ARA, IgA Endomysial
Antibodies EmA, and tissue Transglutaminase.
Ideally the tests
should be sent to an experienced lab such as the Pediatric GI &
Nutrition Laboratory, University of Maryland,
Baltimore
(1-410-706-3734); Specialty Laboratories
(1-800-421-7110); IMMCO Diagnostics (1-800-537-TEST); and
Immunopathology Laboratory, Department of Pathology, University of
Iowa Hospitals and Clinics (1-319-356-2688/8470).
If the
patient experiences itchy skin rashes, a physician may also want to
consider performing a skin biopsy for dermatitis herpetiformis, a
condition that is associated with some cases of celiac sprue.
Again, to ensure reliable results, the physician should take measures
to ensure that the test is done properly.
After the results of
the "first step" are known, the next step for the physician
to consider is an endoscopic biopsy of the small intestine
with
samples from multiple sites to determine whether the
intestinal villi show signs of damage associated with celiac sprue.
This is the "gold standard" for a diagnosis.
Following
a positive diagnosis, the adoption of a proper gluten-free diet is
likely to result in improvement that is measurable through
serum
antibodies tests and a follow-up endoscopic biopsy.
Furthermore, a patient may also experience improvement in bone
density and an alleviation of other symptoms.
Visit the sites linked here to learn more details about the signs and symptoms of CD, how it is diagnosed, dietary help, bulletin boards, and much more information available to people with CD.
American Academy of Family Physicians Celiac Web site
Gastroenterology section of Medscape
NIDDK Celiac Web site
Celiac disease information page
The Web sites above have an extensive amount of information about CD in general. I've also searched the PubMed database in an effort to locate current literature relating to CD and, when possible, to its relationship to causing osteoporosis. I have included the PubMed UI with each abstract mentioned. To actually view the abstract, go to PubMed and enter the numeric portion, not the letters "UI" into the search field and click on Go or hit enter.
For an review of CD, go to http://www.bmj.com/cgi/content/full/319/7204/236 to read the British Medical Journal article by Feighery C. See BMJ 1999;319:236-239, UI:99346054. Coeliac disease. This covers such topics as symptoms and signs, epidemiology, associated diseases, pathogenesis, diagnosis, treatment, prognosis, complications, and has a thorough list of references.
1. This study involved 81 women with CD who were on a gluten free diet. Compared to controls, these women had significantly less BMD in the lumbar spine and the hip. The authors conclude that bone densitometry should be a requirement when CD is diagnosed. Pistorius LR and others. UI:96148577
2. This study involved 165 people with CD to check for fracture risk. Twenty-five percent of the CD patients had 1-5 fractures in the peripheral skeleton compared to only 14% of controls. The authors concluded that early diagnosis and effective treatment of CD were the most relevant measures to protect patients from fractures since only 7% of the patients had fractures after they were diagnosed and treated. Vasquesz H and others. UI:20102118.
3. Three studies show that once patients get on a gluten-free diet, the BMD improves dramatically. UI:99423331, UI:20098334, and UI:93142707.
1. This review paper and abstract by Pruessner HT gives a nice summary of symptoms and diagnosis. It also states that CD is frequently associated with autoimmune conditions such as diabetes type I and thyroid disease. UI:98179454.
2. Several studies allude to the importance of using serum IgA antibody tests to diagnose CD. UI:94038449, UI:95299282, UI:79150590, UI:87120014, UI:87120014, UI:92268780. And, this study shows that if antibody tests are positive, but biopsy is negative, there should be follow up done later. Seven of 25 patients later developed positive biopsies. Collin P and others. UI:93369527.
3. An Italian study suggests that CD is more prevalent than previously thought. Catassi C and others. UI:95400070. Finnish investigators came to the same conclusion and they recommend screening even on minor suspicion. Kolho KL and others. UI:99127581
1. This study by Selby PL and others, UI:99250847, found that axial skeletal sites increase in BMD after treatment for CD, however, the peripheral sites don't. They attribute this lack of increased BMD to secondary hyperparathyroidism which should be investigated in all patients with treated celiac disease.
2. This study by Delco F and others, UI:99249684, found that many other organ systems and diseases were associated with CD than previously thought. Patients and physicians should look beyond the obvious for other areas of involvement when someone is diagnosed with CD.