(Edited by GF Lex on 03/13/2016 to amend broken links)
By the end of 2014, I was feeling decidedly… weird.
Diagnosed with celiac disease 12 years ago, I was accustomed to the odd, painful sensations and myriad systemic disruptions that come with accidentally ingesting gluten. As a patient who also bears additional autoimmune diagnoses (Ulcerative Colitis and autoimmune autonomic nervous system damage), I am likewise used to flare-up symptoms, to localized and generalized pain, to low-grade fevers, and to the ever-present “brain fog” that has integrated the word “huh?” into my expansive vocabulary far more frequently than I had ever dreamed possible. But by the conclusion of last year, something was definitely askew, well outside the norm of my decidedly abnormal physiology.
Dog-tired, disoriented, and weak, I stumbled into my physician’s office one afternoon to have some tests run. A few days later, I received the results I had been waiting for.
“This is pretty bad,” I remember the nurse saying, my vision blurring as I gazed across my bedroom with the phone to my ear. “We’re going to have to shoot you.”
Oh God, I remember thinking. Has it really come to this? Am I so hopeless at this point that they have to drag me, Old Yeller-style behind the barn and put me out of my–
“…huh? I mean, I’m sorry?”
“I said, we’re going to have to give you a shot.”
“Oh.” Well, thank goodness I misheard that one.
As it turns out, I had developed a longstanding B12 deficiency. My teetering (and occasionally falling over), extreme fatigue, and the increased numbness in my lower legs were not a part of my normal disease progression (…any of them). It took six months of intramuscular injections to seat my serum levels snugly back within normal ranges.
Until I was able to climb a flight of stairs without noticing it, (i.e. without effort, without pain, and without the accompanying anticipation and dread), I hadn’t realized how cumbersome my body had become, and how disoriented and out-of-sorts I had been feeling. Supplementation was the change I had needed to feel more like myself again.
But how had I deteriorated into such a depleted state? Nourishing myself through diet had become an obsession for me. I had been consuming so many whole, raw foods at that point that I should have had produce sprouting from my hair follicles. Celiac disease, however, is a disease of malabsorption, affecting several vitamins and nutrients, often despite our best efforts. With a little research, I discovered that this is not exclusively a problem possessed by the newly-diagnosed or the untreated.
When patients are initially diagnosed with celiac disease, they are commonly diagnosed with vitamin deficiencies as well, with as many as 90% of patients presenting with at least one low level. This is due in large part to the damage the gluten protein has done to the villi of the small intestine, flattening them in an autoimmune response and causing them to be unable to function. Most water-soluble vitamins are absorbed (or are supposed to be) by the villi in the proximal small bowel, the area most affected by celiac disease. After the gut begins to heal itself once gluten has been removed from the diet, most nutritional deficiencies do resolve themselves, but this is not always the case. These deficiencies can persist in certain individuals for longer periods, or even for life.
Several vitamins are commonly deficient in celiac disease. If you are experiencing any of the symptoms listed below, or are noticing that you are feeling a bit “weird” yourself, you may want to ask your doctor to test for some of these vitamin levels – a simple blood draw is all that is required for each.
B12 – B-vitamin deficiencies are common in people with celiac disease, with B12 becoming a particular culprit for several reasons. B12 is absorbed in the last part of the small intestine, but in celiac disease, this is often damaged. Also, certain gluten-containing products are routinely enriched or fortified with B vitamins, although their gluten-free counterparts are not currently required to be so; this could result in a relative dietary insufficiency of B12 in people with celiac disease. Additionally, certain individuals are simply unable to absorb B12 through dietary means, and require the synthetic form of the vitamin in a supplement. In vegans in particular, B12 deficiency is common, and supplementation is often warranted by one’s physician.
B vitamins perform several important actions in the body, from enhancing heart and nerve function to aiding in the production of red blood cells. B12 deficiency can lead to anemia, peripheral neuropathy (numbness or strange sensations in the hands and feet, or arms and legs), balance disturbances, and can even result in dementia.
Iron – According to a 2007 study, 46% of celiac disease patients (particularly the newly-diagnosed) suffer from iron-deficiency anemia. Iron is likewise one of the vitamins with which gluten-containing foods are fortified, although gluten-free versions are not, leaving many people with celiac disease with a dietary dearth.
Iron is used in hemoglobin, the component of red blood cells that carries oxygen to every human tissue, organ, and body system, and as such is a nutrient of vital importance.
Low iron levels can result in fatigue and weakness, and can lead to headaches, irritability, and difficulty concentrating. Iron-deficiency anemia can be life-threatening, and can require transfusion to counter its effects.
Vitamin D – Temporary lactose intolerance is common in newly-diagnosed celiac disease patients. The avoidance of milk products may be recommended by one’s physician during the institution of the gluten-free diet, which may lead to temporary deficiencies in Vitamin D. Vitamin D deficiency persists, however, in up to 64% of men and 71% of women with celiac disease, due to a lack of sun exposure (vitamin D is generated in this way), decreased intestinal absorption, inadequate dietary intake, or a combination of these factors. As vitamin D helps absorb calcium, a vitamin D deficiency may present as a two-fold conundrum, resulting in a deficiency in this nutrient as well.
Vitamin D plays several vital roles in human physiology. In addition to strengthening bones, allowing them to grow and preventing osteopenia and osteoporosis, Vitamin D also helps regulate many biological functions, from blood pressure and insulin activity to muscle operation and immune system performance. It may even play a role in preventing cancer or other autoimmune diseases.
Vitamin D deficiency may become evident as muscle and joint pain, but it can also cause many other symptoms, as it affects so much of our physiology. In celiac disease patients, there is also a particular risk of developing psoriasis with a vitamin D deficiency.
Though vitamin D is vital to health, it should be noted that even with a deficiency, supplementation should be monitored by a physician, as overdosing on oral supplements is possible. A few years ago, I discovered that I, too, was vitamin D deficient. If you have experienced the joys of vitamin D supplementation, you may have noticed the incredible spectrum of available dosages. Your doctor will prescribe and monitor these, and will want to draw levels to see how your body in particular is processing this vitamin.
Calcium – Either alongside a vitamin D deficiency or on its own, calcium deficiency is also common in celiac disease. Lactose intolerance or avoidance in early diagnosis may lead to a calcium deficiency. Alternately, long-term absorption damage may have occurred prior to a celiac disease diagnosis, resulting in chronically low levels. Certain drugs reduce the body’s ability to absorb calcium, as well; these include corticosteroids (for instance, I needed to supplement calcium while on various courses of prednisone to prevent bone loss), thyroid hormones, and certain antibiotics. If you are taking any such medication, ask your doctor if you need to be monitoring your calcium levels.
Calcium is vital in maintaining bone structure and in rebuilding it. It is also needed for effective muscle functioning, for maintaining normal heart rhythms, and for blood clotting.
Calcium deficiency can cause osteoporosis and osteopenia, but can also result in parasthesias (strange nerve sensations like tingling or prickling), or even convulsions.
A, E, and K – These essential, fat-soluble vitamins are absorbed in the upper small intestine, which can become damaged in celiac disease.
Vitamin A is required to keep the retina’s photoreceptors functioning optimally, and also helps maintain skin health and the linings of the lungs, urinary tract, and intestines.
Vitamin A deficiency can result in night blindness and vision problems, but can also cause anemia, tissue damage, and growth and reproductive problems.
Vitamin E is an antioxidant, destroying free radicals in the body.
Vitamin E deficiency can result in neurological symptoms such as faulty reflexes and a lack of coordination, and even in hemolytic anemia, a severe blood disorder in which red blood cells are destroyed.
Vitamin K is vital for blood clotting.
Vitamin K deficiency can subsequently cause in bleeding disorders, and can result in hemorrhage.
Folate, Folic Acid – Folate and folic acid are forms of a B vitamin, with folate found in food, and folic acid its synthetic form. Folate is absorbed in the jejunum (the central part of the small intestine), and folic acid, in the duodenum (the first part of the small intestine). As both of these areas may be damaged in celiac disease, both folate and folic acid deficiencies are common in people with this condition.
Folate and folic acid are necessary for the formation of red blood cells, and in DNA synthesis. They are also essential for the healthy neurological development of a growing fetus.
Folate deficiency can cause irritability and forgetfulness, and can result in depression and other neurological defects. It can also affect the blood, resulting in anemia and other disorders, and can cause gastrointestinal disturbances.
A few additional nutrients that may be deficient in celiac disease include:
Magnesium – Magnesium is necessary for bone growth and neurological and muscle function.
Magnesium deficiency can cause fatigue, nausea, weakness, and even seizures.
Phosphate – Phosphate is necessary for nutrient utilization, tissue repair, bone structure, and energy production.
A severe phosphate deficiency can result in alarming symptoms, such as extreme fatigue or coma, but treatable deficiencies are often seen in celiac disease patients.
Zinc – Zinc is a necessary component of many bodily enzymes, and is important for skin health, wound healing, and growth.
A zinc deficiency can result in hair loss, slowly-healing wounds, and sluggishness.
Despite a literal alphabet of vitamins and an ensuing book of symptoms their deficiencies can compose, people with celiac disease need not struggle with confusion when feeling “weird.” Any concerns a patient has can be easily assuaged by one’s doctor through simple blood draws. If treatment is required, levels can be monitored in exactly the same way, and these vitamins and nutrients can often be supplemented with a simple pill (always verify that any medications or supplements you take are gluten-free). There may even be options to enhance one’s diet so that no pills are necessary at all.
When it comes to your wellbeing, it is worthwhile to investigate your vitamin levels. Treating deficiencies is an easy step you can take to make your life fuller and more comfortable, goals toward which we, as people dealing with a celiac disease diagnoses, constantly strive. You never know how much better you can feel until you understand what your body may be lacking.
Works referenced, and further reading:
“Gluten Free and Healthy – Dieticians Can Help Reverse Nutrition Deficiencies Common in Celiac Disease Patients” by Christen Cupples Cooper in Today’s Dietician: The Magazine For Nutrition Professionals.
All photos copyright Alexis, aka GF Lex, 2015.