Journey Forth #4 : Some Common Myths about Gluten and Celiac Disease

When I was first starting the process that led to my diagnosis of celiac disease, I heard many things that I found out later either were not true... or the fact that they happened to be true in my case was unusual. So I thought I would write a short post on the most common myths (at least the ones that I have heard) and mention the true facts behind them.

1. Celiac disease is a simple gastrointestinal disease – For people who have celiac, they soon learn that the disease is anything but simple and doesn't only effect the digestive system. As discussed in past posts, this disorder affects every part of the body and some doctors believe that this disease is primarily a neurological one with some symptoms being digestive... and not the other way around. Even if that viewpoint isn't entirely true, the evidence of how this auto immune disorder effects and damages all organs and body systems seems pretty conclusive.

2. Celiac disease is a children's disease – While children are more likely to be diagnosed and diagnosed early, adults have the disorder as well in pretty high numbers. Estimates on undiagnosed adult celiacs range from 1 in 20 to potentially 1 in 6 for simply gluten intolerance. The symptoms tend to be more noticeable and obvious in children and adults tend to have less obvious or more ignorable symptoms... as well as the unfortunate fact that they are also more likely to be wrongly diagnosed. It is estimated that only 5% of celiacs have been diagnosed which makes up about one percent of the American population. Also, this disorder cannot be 'outgrown' and once truly diagnosed... you will have the disease for your entire life. In essence, there is no cure.

3. Celiac disease is the same as a wheat allergy – this really isn't true. While some people with celiac disease also have a wheat allergy (I might be one of those), most do not. Celiac disease is an auto immune disorder and as such the body responds differently than it does to an allergy. While both are dangerous and not problems to take lightly, they are not the same. Those with a wheat allergy can still eat barley and rye, while those with the celiac disease cannot.

4. Eating Gluten makes you fat – This isn't a true statement at all. Many people have started eating gluten free as a diet choice- some celebrities have made it more popular and 'trendy'. When it comes to gaining weight the answer is usually very straight forward... it you take in more calories than you burn, you will gain weight. While there are exceptions, the vast majority of people who start a gluten free diet will actually gain weight for a few reasons. One is that the person's lifestyle hasn't changed at all. Their eating habits, social customs and physical activity levels are what really cause an individual to develop weight gain. Another reason is that gluten free foods are thought by some to have fewer calories in them then their regular counterparts- with few exceptions, that is an erroneous assumption. Gluten free foods tend to have more fat and sugar to balance the lack of gluten protein. In order to make texture, color, and taste more 'normal', these are the ingredients that tend to be tweaked... and are also the main things that cause weight gain. Also, the average person's diet is heavy on grains with fewer legumes, fresh fruits, vegetables, and other foods that are naturally gluten free. Processed food is another factor in weight gain and so simply changing an unhealthy way of eating for an unhealthy diet without gluten doesn't really change much. Last, exercise is important for anyone and most people will gain weight if they tend to be sedentary creatures (anyone seen a thin sloth? :D Just kidding) All in all, most people do not lose weight on the gluten free diet and most individuals will put on some pounds when beginning the diet.

5. People who suffer from Celiac disease are skinny - Hmm, mostly not true. Yes there are a small percentage of people who are too slender due to the symptoms of eating gluten and the damage that it causes to the patient. However, around 40% of people who are diagnosed with celiac are overweight at initial diagnosis. Less than five percent of patients are underweight. So, not only is a person's weight not necessarily a good indicator for diagnosis, it may actually help convince people that they do not have celiac disease simply because of their extra weight... not a credible diagnostic tool.

So... do you have any thoughts on these myths? Know of one that I missed? What are your thoughts?

Journey Forth #3 : Celiac Disease and its Ties to other Auto Immune Disorders

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?

Journey Forth #2 : The Dietary Needs of Celiac Disease Along with Skin Challenges

In principle, a gluten free diet is quite a simple thing. An individual who avoids four specific foods that carry the gluten protein / amino acids are safe and can refrain from more damage, but also begin healing as well. Those foods are wheat, barley, rye and triticale. That seems pretty easy on the surface especially if you look at the list of flours and foods you can eat- sorghum, soy, seeds, tapioca, teff, wild rice, yucca, amaranth, arrowroot, buckwheat, cassava, corn, flax, Indian rice grass, legumes, millet, nuts, potatoes, quinoa, rice, soy, beans, vegetables, fruit, most dairy and meat, eggs, etc... However, that is where the simplicity ends.

For anyone who doesn't cook... or cannot afford fresh and unprocessed food, the challenge has just begun because an individual who tries to navigate the waters of grocery shopping can become seriously depressed. Fresh food is great and healthy, but pretty expensive. Processed gluten free foods are becoming easy to get, but there is not a lot of choice (most of it is desserts, bread or mixes) and they are also expensive- sometimes several times more money than the 'regular' product. (An example would be bread... the average price of wheat bread is around $2 or less... a gluten free loaf is usually at least $5.) And gluten is in everything else... it's in soups, spices, drinks, dairy products, snack foods, and almost anything you can buy to eat. It's also in almost all personal care products, medicines, and cleaners too. To add a little more difficulty, gluten-free food is usually not fortified with extra vitamins and minerals so it is more crucial that balanced and appropriate foods are consumed. So, for the most mildly affected, they need only navigate the complicated food maze of shopping and cooking and only worry about personal care products that can accidentally be ingested such as lip balm, medicines, mouthwash... some basics that some people do not use anyway. But for the more challenged, the more sensitive... for those whose immune systems are completely 'wacked out', they are in serious trouble. (I will admit that I made up that scientific term :)

For most celiacs, the skin is a great barrier not only for protection from many disease, dehydration and from gluten. Holding a pile of flour in their hand is nothing if they wash carefully and wandering into a bakery with the air full of the smells of fresh bread and wheat is only a tease to a person who cannot taste. To those, the majority of celiacs, I am a bit jealous. I have found that sometimes I do not even have the luxury of recognizing the 'smell' of the baking and the gluten that has been atomized in the air before I am struggling to breathe and heaving... bent over and sometimes vomiting with a strength and a lack of control I didn't know I possessed. There are many places I will not go due to this extreme reaction that my body and my mind can not seem to control. If I go into a place and start to not feel well or suspect that there is very little chance of being able to avoid exposure or illness, I leave. I may be angry, sad, frustrated... but I leave anyway. It's just too terrible to contemplate the pain and distress of an exposure... the pain and vomiting that lasts for weeks, the shaking, twitching, itching, headaches... no church activity, no community activity is worth it to me. I've tried too many times and suffered for sometimes months afterward to really risk that much again. One challenge that I have is that my skin is not a good barrier; while it does protect me from many diseases and most dehydration, it is an unloaded shield against gluten.

Skin conditions that can go hand in hand with celiac disease range from the 'simple' to the more complex. Only two conditions – that of hives and of Dermatitis Herpetiformis- can be clearly labeled a cause/effect of the disease. These others are still under study by researchers and medical professionals to determine which came first... the celiac or the skin disorder. It is unknown why some of these disorders occur together so frequently; wether they share common genetic roots or that gluten may be a common trigger. where aren't too many so I'll give some basic information on them with the formerly mentioned first. :)

1. Hives – This word describes a rash or outbreak of red bumps on the surface of the skin that are warm, itchy and usually appear quite suddenly upon either contact or ingestion of a product/object that someone is allergic to – some common allergies that cause this form of swelling and rash are peanuts, cats, bug bites, etc... This is not a very common side affect in celiac disorder and is highly debated in the medical community with some for and some against. I have sometimes gotten hives from external contact with gluten and I do very much avoid it as I have felt sick or had some symptoms afterwords – this has happened EVEN when I didn't know the gluten was there and actually thought the food or product was safe. Other people have reported hives after gluten exposures on the cheeks and arms/wrists.

2. Dermatitis Herpetiformis – this is a painful and itchy skin manifestation of the disease. For many people affected, they will feel minimal digestive complaints so this is usually diagnosed with a biopsy of the sores and bumps on the skin which are caused by the immune system in the intestine itself producing an antibody that enters the bloodstream and can collect in the small blood vessels in the skin, causing the sores and rashes. This quirk in the celiac disorder affects more men than women and the skin problems usually resolve with the gluten free diet and usually are not exacerbated by touching gluten- very much an inside the body sort of thing. And I must stress that this skin manifestation is in no way related to the herpes virus – this is a problem with gluten and celiac disease, pure and simple. These blisters are painful and can be very challenging to hide which adds to the stress of the situation for the affected individual. It is also very often confused for other problems including bug bites and allergies, eczema, dermatitis herpetiformis, hives and contact dermatitis and psoriasis.

3. Psoriasis – This disease causes the skin to become thick, scaly looking and red. It is caused when the immune system sends out faulty signals that tend to speed up the growth cycle of the epidermis layer of skin cells and is thought to be one of the most common autoimmune disorders in the United States. So skin cells that would take weeks to reach and replace the outer layers of skin would now arrive at the surface of the skin within days and it is this action that causes the common symptoms. Many patients often have high levels of gluten antibodies in their blood even if they haven't been previously diagnosed. In some individuals, psoriasis will not only affect the the skin but the joints and will develop arthritis as part of the disorder.

4. Acne – The bacteria filled, painful bumps and 'whiteheads' that can form on the face and the rest of the body are fairly well known to many people- especially teenagers. They can be caused by general hormone fluctuations, but in celiac disease, they are thought to form from hormonal imbalances caused by the malabsorption of nutrients... robbing the body's systems of the correct tools it needs for homeostasis.

5. Dry Skin (chronic) – This is very common in those individuals affected by celiac disease and in its mild to moderate forms are pretty easy to control by lotions and even supplements. It is thought to be caused from the lack of nutrients that are able to get to the skin due to the inability to absorb nutrients and it has been found that thought who follow the gluten free diet may still be deficient in some of the skins specific nourishing needs (such as vitamin E) due to removing most or all grains from their diet... even the 'safe' ones. For individuals whose bodies are really unable to recover from the gastrointestinal damage that has been caused, this can be a life long problem.

6. Alopecia Areata- This auto immune condition attacks the hair follicles causing the hair to fall out and in some cases, fail to regrow even with treatment. While the majority of sufferers develop bald spots on the scalp, other areas of the body can be affected as well including areas of beard growth. Some individuals also report symptoms of skin tingling or pain in the areas of hair loss. There is some evidence that living a gluten free lifestyle can change the health of the hair follicles and allow for healing and some hair regrowth... but it is certainly not a given! Also, an individual with celiac disease who continues to eat gluten can get alopecia from nutritional deficiencies from the malabsorption of nutrients- these deficiencies include iron, vitamin C and the B's, biotin, selenium, calcium and protein.

7. Eczema – This is a skin condition that is more likely to affect people who already have some problems with allergies. The skin develops inflammation and raised bumps or areas of severe irritability. Depending on the affected individuals skin color, the affected areas make look reddish to brownish color or may look lighter or darker than the skin around it. All the stricken areas tend to also appear dry with thickened or even scaly skin. No matter what the rash or discoloration looks like, it is always itchy! This disorder is found more often in children and there is growing evidence linking the development of eczema in those with celiac disease.

8. Keratin Pilaris – This skin condition usually manifests itself through tiny goosebumps- like marks on the skin that feel a little bit like rubbing a shark skin the wrong way or even mild sandpaper. They are most common on the back of the upper arms or on the back itself, but can also be found on other parts of the body on the skin. When they appear on the face, they can sometimes be mistaken for acne. They are more likely to be more prevalent in winter or in an environment that is cooler with a lower air moisture content. The good news is that while this spots are not pretty and may be distressing to the person who suffers from them, they rarely hurt, itch, or do anything that caused discomfort to the patient. This disorder is also common amongst individuals who also have eczema.

I am extremely lucky. While I have challenges with dry skin often and hives occasionally, my health has not been affected by any of these skin disorders. As research continues on into the causes and needs of all of these disorders, I am hopeful that many of them will become more rare and less challenging for those who have to live with them. Are you or anyone you know affected by any of these skin disorders? If so, do you have any experience with any of the potential links above? Have you been tested for antibodies or attempted the gluten free diet for symptom relief? If you have followed a gluten free diet for a while, will you share your thoughts on it and how it has helped (or not helped) you and your health? Any tips for those navigating the beginnings of gluten elimination in the diet. Please share!