Part 5 Of 12 Part Series: Musculoskeletal (Rickets, Osteomalacia, Osteopenia, Osteoporosis, Arthritis, And Myopathies) Symptoms In Undiagnosed Celiac Disease
This is the fifth in a series of posts discussing the variety of symptoms that can be caused by undiagnosed Celiac Disease (CD). In this post, musculoskeletal symptoms will be discussed. In many with undiagnosed CD, the intestinal villi, responsible for absorbing nutrients, becomes damaged, creating a flattened mucosal surface (villous flattening) that is less able to absorb nutrients. Autoimmune reactions to ingested gluten cross-react with intestinal villi and create this damage. Various nutrient deficiencies can occur and this, along with inflammation and other autoimmune factors, can lead to various musculoskeletal symptoms (1,2,3,4).
Rickets And Osteomalacia
CD autoimmune factors, associated inflammation and malabsorption of nutrients can start demineralizing sketetal bones in infancy or childhood (rickets) and this can continue into adulthood (osteomalacia). In some, the pathological demineralizing effects of CD may not be triggered until adulthood. The bone structure becomes soft, weak, and bendable loosing it’s rigidity. This can lead to disfiguring disabilities such as bow legs, pigeon chest, pelvic deformities, deformed skull, and spine deformities (ex. lordosis, scoliosis, and kyphosis) possibly decreasing mobility (1,2,3,7,8,9,10,12-16,79). Osteomalacia can coexist with arthritis and osteoporosis (79). The damaging life long effects can be permanent. A CD diagnosis and a gluten-free could be the perfect primary prevention for those with undiagnosed CD. The symptoms of CD can be so elusive that diagnosis is often delayed for years (1,2,3).
Symptoms of rickets in infancy and childhood may include bone pain or tenderness, muscle weakness, seizures, failure to thrive, dental deformities and cavities, delayed or impaired growth, short stature, bone fractures, skeletal deformities (ex. bowed legs, pigeon chest, pelvic deformities, deformed skull, and/or curvature of the spine that is abnormal) muscle cramps/spasms, tetany, numbness, tingling, abnormal heart rhythms, difficulty crawling and sitting, and delayed walking (7,10,73,79). Early symptoms of osteomalacia in adulthood may initially be absent. During this initial phase, it may be diagnosed if apparent on a x-ray or other tests. As osteomalacia becomes chronic, symptoms may include muscle weakness, muscle cramps/spasms, tetany, seizures, numbness, tingling, abnormal heart rhythms, bone pain or tenderness, spine deformities, skeletal deformities, fractures, rachitic rosary, dental caries, reduced mobility, a change in gait, and a waddling gait (8,73,79).
Osteopenia And Osteoporosis
A number of studies have identified an association between osteoporosis and CD. Demineralization of the bones in CD may result from an immunological process that is destructive to bones combined with malabsorption of important nutrients, primarily vitamin D, calcium, magnesium, and phosporus. Decreased mineral content of the bone is evident in osteopenia and chronic osteopenia can lead to weak, brittle bones (fragile and porous) evident in osteoporosis. This increases the risk for fractures (1,2,5,6,17-23,47,79).
Symptoms may be absent initially. As the disease progresses, symptoms may include tetany, muscle weakness, muscle cramps/spasms, numbness, tingling, palpitations (irregular heart rhythms), convulsions, loss of height, low back or neck pain, stooped posture, bone pain or tenderness, collapsed vertebrae or other fractures (1,9,23-27,79). Testing for celiac disease and gluten antibodies is recommended for all individuals with osteoporosis, even in the absence of bowel symptoms (5,52).
Usually, supplementation with calcium and vitamin D along with a strict gluten-free diet and bone building exercises can result in remineralization of the skeletal bones (1,23-27). Your physician may prescribe additional treatment such as medications (ex. actonel, fosamax) to promote bone remineralization. However, Dr. Green, in his book “Celiac Disease”, recommends waiting until the intestine has healed to initiate this type of medication. Apparently, these medications might reduce blood calcium to a dangerous level potentially causing serious side effects such as arrhythmias, seizures, and muscular symptoms if given while the small intestine is still damaged. This is due to the bowel’s reduced ability to absorb calcium during the healing phase combined with the medications protective effect on bone breakdown. Usually, the blood can borrow the calcium from the bone to maintain homeostasis in the blood serum. The medication can prevent this from happening and this combined with the bowel’s reduced ability to absorb calcium can cause a deficiency in the blood. Diagnosed Celiacs with no intestinal involvement may not have this problem (1).
When I was diagnosed with CD, I was told I had osteopenia (borderline osteoporosis) and the bone density of my spine was comparable to a 76 year old (I was 38). I did some research, and then decided to choose the medication-free approach. My bone density returned to normal within 2 years on a strict gluten-free, nutrient dense diet, bone building exercises, and vitamin plus mineral supplements. I met with a Registered Dietician and my MD monitored me closely (with the Gastroenterologist’s guidance) during this time. While undiagnosed, I also experienced muscle weakness, muscle cramps/spasms in my calves and feet, numbness, tingling, palpitations, and tenderness in my lower back and my neck. I was informed about 10 years ago that I had a healed fracture on one of my ribs. I skydived, rock climbed, and white water kayaked frequently prior to having children and assumed this may have happened during this time. I’m surprised I didn’t have more fractures given that my bone density was likely poor for many years prior to diagnosis. My mother was diagnosed with osteoporosis and has CD. My daughter, also with CD, had occasional leg cramps. My mother and daughter did not have bowel symptoms prior to diagnosis.
Nutrient Deficiencies Contributing To Rickets, Osteomalcia, Osteopenia, And Osteoporosis
Nutrient deficiencies (common in CD) that may contribute to skeletal symptoms include vitamins A, D, E, K, and calcium, magnesium, phosphorus, protein, fatty acids, manganese, molybdenum, copper, boron, flouride, and zinc (1,5,6,70-74,79).
Arthritis And Joint Pain
Various types of arthritis, such as rheumatoid arthritis, osteoarthritis, polyarthritis, monoarthritis, sarcoilitis, ankylosing spondylitis and psoriatric arthritis, have been associated with gluten sensitivity and CD. In arthritis, joint inflammation can lead to destructive tissue damage within and around the joints. In addition to this, some types of arthritis can also damage other areas of the body (ex. skin and organs) (2,3,5,6,28-37,50,51,55). Arthritis symptoms can include swelling, pain, stiffness, redness, tenderness, and warmth in the affected areas, loss of function in affected area, and disfigured joint areas (50,56).
Over 100 types of arthritis have been identified (50). More research needs to be done to look at the effect gluten and other food sensitivities have on various types of arthritis. The effects of chronic arthritis symptoms can be debilitating affecting an individual’s psychological (decreased quality of life) and physical health. The risks associated with changing one’s diet is minimal (need to ensure foods are nutrient dense and that you consume all essential nutrients) compared with the possible risks associated with the side effects of medication (5,6). Many have found relief from arthritis symptoms by identifying sensitivities or allergies, then avoiding those foods (5,31,36,53,54,57,58). Dr. Gislason said that dairy, eggs, wheat, gluten, chocolate, potatoes, beef, pork, tomatoes, citrus fruits, almonds, wine, and certain medications can cause arthritic symptoms (58). A celiac screen and a consultation with an allergist and/or naturopathic doctor may be helpful. There are a variety of tests that are useful for identifying allergies and sensitivities. Some individuals use the core or elimination diet to do this.
Nutrient deficiencies (common in CD) that may contribute to arthritis symptoms include vitamins A, D, C, E, K, niacin, pantothenic acid, pyridoxine, and protein, fatty acids, calcium, magnesium, iron, selenium, manganese, boron, copper, and zinc (70-74).
Prior to diagnosis, I experienced pain and stiffness in both knees, my shoulder, my wrist, and my hip. Once diagnosed and gluten-free, the pain and stiffness disappeared only to return occasionally. I removed dairy from my diet and the pain and stiffness only returns when I eat dairy. Recently, I had a piece of gluten-free cheesecake (as an experiment) and I woke up the next morning with very stiff and sore fingers that were difficult to move. My arthritic symptoms appear to be linked to celiac disease and a dairy sensitivity. I now eat gluten-free and diary-free.
Muscular Symptoms
Muscle symptoms may result from immunological reactions affecting the nerves or muscle tissue, a compromised blood supply to the muscles, intramuscular bleeding, and/or nutrient deficiencies. Muscular symptoms can include cramps, stiffness, spasms, weakness, aching, pain, fatigue, swallowing difficulties (dysphagia), droopy eyelids, difficulty moving eyes, eye paralysis, limb weakness, weakness after exertion, tetany, decreased mobility, difficulty climbing stairs, difficulty breathing, myocarditis, decreased muscle mass, difficulty lifting objects or doing activities of daily living (3,12,13,38-46,48,49,56,59-63,65-70). If CD tests are negative, keep in mind that muscular symptoms can occur with gluten sensitivities, food allergies or sensitivities in the absence of CD. Gluten and dairy were specifically mentioned as possible antigens to try eliminating from one’s diet (48,49,58,76). An allergist or naturopathic doctor may be helpful to identify offending foods.
Myopathy involves a disease process that leads to dysfunctional muscle fibres. Various myopathies have been associated with CD and gluten sensitivity including dermatomyositis, polymyositis, inclusion body myositis, rhabdomyolysis, ocular myopathy, muscular dystrophy, neutrophillic myositis, muscular hypotonia of the infant or child, proximal myopathy and generalized myopathy (12,13,38-46,48,49,59-63,65-70). Intramuscular hemorrhage was also identified in one case study and this symptom was due to a vitamin K deficiency (75).
Nutrient deficiencies (common in CD) that may contribute to muscular symptoms include vitamins A, D, E, K, niacin, thiamine, pantothenic acid, pyridoxine, cobalamin, protein, fat, carbohydrates, calcium, magnesium, phosporus, potassium, iodine, iron, and copper (70-74).
I experienced muscle cramps, stiffness, weakness, aching, fatigue, and had weakness after exertion. There were times I felt so weak that I had to sit or lie down for awhile. My daughter and mother both had muscle cramps.
Other Influencing Factors
Other factors that may contribute to musculoskeletal symptoms include a poor diet, past stomach or intestinal surgery, decreased sun exposure, gender, age, obesity, type of work, pregnancy, lactation, exclusively breast feeding without infant vitamin D supplements (inquire with MD), certain medications, dark skin (more difficult to produce vitamin D), low body weight, smoking, family history, early menopause, alcoholism, increased homocysteine levels, chronic bedrest, lack of exercise, and the presence of diarrhea and vomiting. The presence of other conditions such as renal failure, renal tubular acidosis, tumor-induced osteomalacia, cancer, acquired disorders of vitamin D metabolism, liver disease, Crohn’s disease, hypoparathyroidism, hyperthyroidism, compensatory secondary hyperparathyroidism, Cushing Syndrome, Paget’s disease, scleroderma, lupus, and sjögren’s syndrome may contribute to the symptoms as well (1,5,7,8,9,50,80).
Do You Have Any Of The Above Symptoms?
CD can be present in children that are growing normally so normal growth rate should not be a factor that excludes the possibility of CD (11). Many individuals with undiagnosed CD will have no bowel symptoms (25,26,52,60). Weight loss may or may not occur, and is dependent on the amount of the intestine that is damaged (25,60). Therefore, the symptoms in this post could occur in the absence of stunted growth, weight loss, or bowel symptoms.
The presence of musculoskeletal symptoms as discussed in this post, indicates that you should talk to your MD about tests for CD and tests to rule out other possible causes of your symptoms. Testing for CD is important because undiagnosed CD increases the risk of developing other autoimmune diseases, lymphomas (skin, brain, lymph nodes, intestine), cancers (thyroid, esophageal, mouth, tongue, pharynx, tonsil, and small intestine), allergies, complications from malabsorption issues, possible decreased immune response to other illnesses (1,2,77,78), and many other health complications that will be discussed in the posts about CD symptoms. It is my hope that if you have musculoskeletal symptoms you can print out this post complete with medical references to take with you to the MD when you request a CD test. Highlight or underline the sections that apply to your symptoms. I’ll be posting a simplified summary and checklist in the 12th post.
It is possible to have a gluten sensitivity even if you test negative for CD. It is also possible that some of your symptoms could be due to a food allergy/sensitivity or other disease process. Allergy testing, and/or an elimination diet may help you to identify the offending food (5,6,31,36,48,49,53,54,57,58,76). Other tests can help rule out other diseases. I encourage everyone to have their symptoms thoroughly investigated by their MD and specialists before implementing a therapeutic diet. Keep your MD informed about any dietary changes you are making and also the results. Of course, I would love to hear your story as well.
I recommend waiting until CD testing is complete before initiating a gluten-free diet because it may create a false negative. Discuss this with your MD or specialist. USE CAUTION WITH SUPPLEMENTS. Toxicities can occur with over supplementation and this can lead to permanent damage. Consult your MD, Registered Dietitian, or other medical specialists involved in your care to determine which nutrients should be supplemented and to identify appropriate dosages for you. Review your symptoms and everything in this post with a Medical Doctor and your specialists before you make any changes. Your MD knows your medical history and the treatments that are appropriate for you.
Diagnosed Celiacs and people with food allergies/sensitivities, please comment about your symptoms and experiences at the end of each post. This will help other readers to see how the sometimes illusive symptoms of CD or food sensitivities can affect each of us. We are all unique!
References
1. Excellent Book: Green PHR, Jones, R. Celiac Disease A Hidden Epidemic. Collins, Harper Collins Publishers, 2006 http://tinyurl.com/ljeqjc
2. Pruessner Harold T, MD. Detecting Celiac Disease In Your Patients. American Family Physician. March 1st, 1998.
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5. Excellent Book: Lieberman Shari PhD,CNC, FACN, with Linda Segall. The Gluten Connection. How Gluten Sensitivity May Be Sabotaging Your Health. Rodale Inc., 2007. http://tinyurl.com/nwsc79
6. Excellent Book: James Braly, MD., Ron Hoggan, MA. Dangerous Grains. Penguin Group, Inc., 2002. http://tinyurl.com/knswhn
7. Rickets http://www.nlm.nih.gov/medlineplus/ency/article/000344.htm
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