Not to start a post with a warning, but I will say that this post will be unpleasant... or maybe even boring depending on your life experiences. I think the topics and the information are really important though so if you are still willing, let's continue our travels. :)
In previous posts, we have discussed the basics of celiac disease, treatment and lifestyle, as well as skin problems that can go hand in hand with the disorder. For the next little bit, I wanted to talk about the numerous auto immune disorders that many patients may have to deal with as well. Because if there is one thing that seems pretty consistent, once you have one autoimmune disorder, your chances of developing another one are pretty high. Risks for several other health problems are pretty high as well and so I think it is important to acknowledge and discuss them for two reasons. One is that many people do not understand or have the knowledge of how these disorders do go together and are then unable to have themselves tested and utilize their medical providers for a full treatment of their symptoms and therefore, to be able to have the best quality of life they can attain. Someone who has celiac disease may attribute strange symptoms to that disorder and not discover and treat the other disorders that ail them. The opposite is true as well and someone with diabetes or severe arthritis may treat that disorder and not recognize that their disorder is so challenging because they also have celiac disease. This knowledge allows them to get tested or if they wish instead, to follow the gluten-free diet for a few months and see how it affects their body and the symptoms from the other diseases. Another important reason to discuss these disorders isn't just for those who need the information personally, but also for their friends, relatives, caregivers, etc... Knowledge is power and creates an awareness of challenges which in turn creates empathy, understanding and advocacy. As the Father has asked us to 'mourn with those that mourn', this insight helps all of us whether affected or not to not only help people as we meet and befriend individuals, but to also not hinder them accidentally in our ignorance. That is my hope any way!
I have not put these disorders in any specific order and so their listing is random. Signs, symptoms and their links to celiac disease could actually take a page or two for each one so I will out of necessity be fairly brief on each one and stick with the very basics. The debate on why people are more likely to develop some of these other disorders is still continuing. One of the most common theories is that undiagnosed celiac disease can potentially 'switch' on a immunological mechanism that can then cause some of these other disorders. However it does happen, what does seem pretty clear is that it is pretty easy for a person with celiac disease to develop another problem... and for someone with one of these other problems to 'catch' celiac disease. :)
Other Auto-immune Disorders
1. Type I Diabetes - This is a chronic lifelong condition in which the pancreas doesn't produce the needed hormone insulin or the body cell's failure to respond properly to insulin caused by insulin resistance. This hormone is needed for digestion to convert our food – the sugars, starches, etc... A complicated and chronic disease, this disorder is characterized by high blood sugar levels in the bloodstream over significant periods of time. Symptoms can include excessive thirst and hunger, frequent urination, fatigue and weight loss, as well as symptoms of neuropathy, inability to quickly heal from injuries, etc... Some studies show that as many as 30% of females with type 1 diabetes also have thyroid disfunction (most commonly Graves disease.) This disease if not well managed can significantly limit the individual's quality of life and usually lowers life expectancy as well.
2. Addison’s disease - a rare autoimmune disorder in the general population, this disease is characterized by insufficiency of the adrenal glands. The body depends on hormones developed by these glands and when enough hormone isn’t produced, the cells in different parts of the body respond; symptoms many include skin darkening, low blood pressure, muscle weakness or pain, hypoglycemia, joint pain, and neurological symptoms including depression and irritability. Other common complaints are nausea and vomiting, abdominal pain, salt cravings, body hair loss as well as weakness and fatigue. In bad cases, this disorder can become life threatening and cause death.
3. Crohn’s disease – most commonly characterized by chronic inflammation of the gastrointestinal tract- most commonly affects the ileum and the beginning of the colon. Symptoms may include diarrhea, rectal bleeding, abdominal cramps and sensations of incomplete evacuation as well as constipation or bowel obstruction. Other common complaints may be fever, weight loss, amenorrhea, fatigue and night sweats. One characteristic of this disorder is that it affects the entire thickness of the bowel wall although it has been known to skip areas… so that there can be a small area of perfectly healthy bowel surrounded by diseased and damaged tissue. (The symptoms of ulcerative colitis are similar, but these disorders are not the same and the areas affected by each are different.)
4. Hashimoto's disease – (also known as autoimmune thyroiditis) An autoimmune disorder of the thyroid that causes inflammation of the gland, but less hormone production- it is actually one of the most common thyroid disorders. Symptoms include fatigue, amenorrhea, intolerance to cold, enlarged goiter, weight gain, skin and hair that is dry and course, a hoarse voice, and neurological problems including forgetfulness, depression and anxiety. This disorder shares a common genetic disposition with celiac disease and some studies show that as many as 4.3% of individuals with this disorder also have documented celiac disease.
5. Graves disease - The most common cause of hyperthyroidism, this autoimmune disorder results in over production of thyroid hormones. Those individuals who have this disorder can suffer from a multitude of symptoms with include both physical (fine tremor, weight loss, enlarged thyroid, infertility, eye discomfort and vision changes, irregular and rapid heartbeat as well as skin abnormalities , etc...) and mental health challenges (anxiety, psychosis, mania, irritability, depression and personality changes.) Some studies show that around 4.5% of individuals with Graves disease also have celiac disease and the thyroid dysfunction most commonly caused by this disorder can cause a worsening of glycemic control and an increased needs for insulin helping to cause an individual to become diabetic or to make their diabetes significantly harder to control.
6. multi focal leucoencephalopathy – A rare disorder that causes damage to the myelin sheath on the nerves in the brain- a tissue that protects and covers all the nerves in the body. The damage causes the axions of the nerve cells to have difficulty communicating with each other and even the inability to do so. The symptoms are diverse due to the fact that this disorder can affect any nerve in the brain... which helps control the nerves in the rest of the body. Some common symptoms that are described by patients are clumsiness, headaches, memory loss, progressive weakness, visual changes, as well as speech and personality changes. This disorder can lead to disability and death.
7. Multiple sclerosis – It seemed fitting to follow up the last disorder with this one. MS is a disease in which the myelin sheath around the nerves is damaged, but the damage is not really restricted to the brain. Affecting the nerves throughout the body, communication and normal response between the nerves and their organs is interrupted and over time the nerves themselves are damaged. While the patient may have periods of time where the symptoms lessen, this damage is permanent. Symptoms include fatigue, tingling and pain in extremities as well as numbness and weakness. Patients may complain of double or blurred vision, problems with speech as well as tremors and a lack of body coordination.
8. Scleroderma – This is an auto immune disorder that is usually classified into two separate forms- localized and systemic. Affecting the connective tissue in the body, the major symptom in the localized form is hardened and sometimes waxy looking skin. In the systemic version, tissues in many organs may start to become hardened and less able to perform their needed functions. This causes many patients to suffer from high blood pressure and other cardiac problems, heartburn and other digestive complaints, as well as dysfunctions in the pulmonary, genitourinary, nervous, and other body systems.
9. Sjogren's syndrome - This immune disorder is caused by a person's white blood cells confusing and attacking the moisture-producing glands in the body. It causes dry eyes and mouth, difficulty with swallowing or chewing, vision problems, teeth cavities,fever, fatigue, vaginal dryness, dry skin and mucosal tissue, swelling, stiffness and joint pain, and enlarged paratoid glands. In sever cases, permanent damage to the liver, kidneys and lungs can result.
Separate Related Disorders
1. Rheumatoid Arthritis - a disorder caused by inflammation that is developed from an auto-immune response created by the body. Symptoms most commonly occur in the fingers and hands, feet and ankles, as well as the knees and the usual complaints are stiffness, localized heat or warmth, and aching or pain in the joints of the body. Over time, deformity in the joints can become prevalent as well.
2. Hepatitis - a medical term that describes the inflammation of the liver as well as inflammatory cells in the tissues that comprise the organ. This disease can be caused by many things including alcohol and viruses- When thinking of gluten sensitivity, the liver finds itself receiving blood that, instead of having finely digested nutrients, is filled with large amounts of undigested food and other waste products that can be toxic to the liver and cause the inflammation that is characteristic of all types of hepatitis. As the liver tries to deal with the unwanted substances, the white blood cells increase as well as the number of liver enzymes which cause irritation to the organ itself… which leads to the inflammation and permanent damage/ scar tissue.
3. Osteoporosis - A disease caused by weakening of the structure of the bones. As the bones are the body's structural foundation, this leaves the individual at risk for injury. It can be caused by either excessive or minimal bone growth and it usually happens without symptoms for a long period of time. Symptoms include breaking bones (easily), loosing height (becoming shorter) and curvatures in the spine.
4. Infertility, miscarriage and menstrual cycle irregularity – Anytime the body is struggling with a limited amount of nutrients for thousands of needy cells, some are going to get short shrift. And if you think about it, reproduction is really something that is a luxury- something that the body should be doing only when it's healthy and ready. While that doesn't always happen, it is fairly common for a nutrient-starved body to decide that it is in its own interest to not reproduce and so in many women, normal menstruation will stop. This can cause infertility on its own, but a lack of nutrients can also cause the eggs themselves to not be viable. I even found a study that suggested that gluten antibodies and damage can be found in the sperm and semen. Miscarriage can happen due to the inability of the body to provide the necessary energy and nutrition for fetus growth.
5. Epilepsy – A seizure disorder causes by inflammation is the brain (and sometimes the body) that manifests itself in a variety of ways including unusual sensations, muscle convulsions or stiffening, periods of staring and sometimes loss of consciousness – symptoms depend on the severity of the disease and where in the brain is affected by the electrical activity that causes the physical signs and symptoms. It is linked to both celiac disease and gluten sensitivity. Some ideas in the current debate as to why these disorders are linked are centered around calcium deposits in the brain and if the nutritional deficiencies themselves may cause the epilepsy.
6. Gluten ataxia – this term describes a neurological response by the body towards gluten which can cause irreversible damage to the cerebellum- the part of the brain hat is primarily responsible for motor control, balance and muscle tone. Due to the damage, individuals with this problem suffer with a loss of coordination in movement and other gross motor skills. Other symptoms may include dizziness, disorientation, problems with focusing by both the eyes and in thought processes, problems with balance as well as difficulty in swallowing or speaking. These symptoms tend to become progressively worse over time as more and more damage is done. It is linked to both celiac disease and gluten sensitivity. (This diagnosis is also still in the early stages of study with some physicians suggesting it isn’t a separate disorder from celiac disease… or even suggesting that it doesn’t exist at all.)
7. lactose intolerance – One of the few non chronic problems associated with celiac disease, it is caused by the systemic damage to the micro-villi in the intestines that destroys and limits the body's ability to break down lactose. The enzymes that help break down lactose are found in very small qualities in the micro-villi and are destroyed along with the intestinal wall upon gluten consumption. This problem usually resolves itself after a gluten free diet is instituted for a significant amount of time and the villi are able to begin to heal themselves and repopulate their enzymes in the 'brush borders' – also know as the micro-villi. The problem usually returns after renewed gluten consumption and intestinal damage.
8. vitamin / mineral deficiencies – This is a major difficulty for the newly diagnosed celiac and one that can take a significant amount of time and attention by the individual to attempt to repair. As the consumption of gluten causes the damage to the intestines, adequate absorption is limited and less able to be successfully managed. Some common deficiencies in this population are calcium, iron, zinc, many of the B vitamins as well as vitamins D and E. The 'cure' is to take great care to consume only items that have no gluten and, in some cases, to use supplements as well until the intestines are healing well enough to resume more normal digestion and absorption. As deficiencies in many of these vitamins and minerals are needed for normal function of many organs and body symptoms, it isn't really surprising when parts of the body start to fail or find themselves unable to heal and function normally.
A short list of other honorable mentions :)
Anemia, migraines, myopathy dementia, gall bladder malfunction, Raynaud's phenomenon, peripheral neuropathy, pancreatic insufficiency, many forms of gastro intestinal cancers, primary sclerosing cholangitis, juvenile idiopathic arthritis, idiopathic dilated cardiomyopathy, ulcerative colitis, microscopic colitis.... and probably many more that I missed. Whew!
That was a pretty long list... sort of depressing too! But a lot to think and talk about. As far as I know, celiac disease is the only auto immune disorder that I have... although my doctor is getting ready to test for two others. I have certainly struggled with infertility and serious nutritional deficiencies. I have started to show the signs of arthritis and Dry Eye Syndrome which is cause by immuno-inflammation. Otherwise, well I'm pretty good :)
Any thoughts on this? What experiences with yourself and others can you share? Did you read this post and wonder about your own health and the possibility of having more than one disorder when you become introspective and look at your current medical diagnoses? What are your thoughts?
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