Journey Forth #6 : The Accidental Relationship between Gluten and Casein

When I was first diagnosed with celiac disease and started to research the disorder but also the foods that were available, I ran across many people who started pushing me towards a gluten free-casein free diet not only for myself but for Bug as well- we both have the disease and I think he can thank my genes for that ;) I was skeptical and I am still a bit questioning about some theories behind the diet. This particular diet is recommended for many people with celiac disease and other food allergies and it has become one of the diets of choice for individuals with autism and other developmental disorders and is sometimes recommended for people with mental health disorders such as schizophrenia. So I'll cover the basics of both. (Can I stress that I am wading into territory that is not firmly entrenched in science or statistics yet.)

The basics of this diet are that the individual not only avoids gluten but also all foods that contain the dairy protein. Some need to do this due to a true allergy and some people report that they have reactions that are similar to gluten intolerance when consuming the dairy protein. This protein can be found in butter, cheese, cream and milk, as well as yogurt and countless other products including chocolate, lunch meat or other prepared meat products and other non-dairy products. Symptoms of a true milk allergy are very similar to gluten intolerance as well as wheat allergy and celiac disease so trying to separate out the allergies and sensitivities can be pretty rough and time consuming. The most common symptoms may include; multiple skin reactions, anaphylaxis, multiple digestive complaints (including diarrhea, vomiting, and pain), multiple reactions in the lungs (coughing, sneezing, shortness of breath or wheezing), migraines, irritability, hyperactivity and other personality changes, insomnia, fatigue, depression and anxiety... to start the list. ;) If the challenge of eliminating gluten from the diet seems to be formidable, adding the need for casein removal can make the challenge seem like a herculean task.

There are a few reasons put forward for the similarities in symptoms and the immune reactions in the body between ingestion of gluten and casein. All three have been and are currently under study by researchers.

Casein is one of the most common food allergies and some studies suggest that as much as thirty percent of the general population have elevated amounts of the antibodies in their blood.

Casein has a similar molecular structure to gluten and they both create similar metabolic byproducts from their breakdown and digestion.

The enzyme that is needed to digest dairy is found in the brush borders and the tips of the villi in the small intestine... which is the first area that is damaged in gluten consumption for those individuals who are susceptible. With the necessary enzymes being in low numbers or decimated, the digestive process fails until healing and enzyme re-population has commenced... in some cases, a year after a gluten exposure.

For many parents of children with mental health disorders or developmental delays such as autism, this diet is not seen as a “diet” per se, but as a necessity and way of life. The changes in both behavior as well as mentation have been pretty well documented in self reporting and other unofficial forums. From personal experience, I feel a lot more in 'control' of my mind when I haven't had gluten- celiac aside. These experiences as well as watching and learning from friends and parents who have navigated these particular waters, I have found a great deal of confirmation in my mind that there is a great deal of positive evidence for recommendation of this particular diet for people with specific diagnoses or conditions. So even as I stress that the scientific evidence isn't there yet, I feel like I would be remiss if I hadn’t taken the time to discuss it. Whether the problems are due to the body's confusion of the proteins, lack or appropriate digestive enzymes or even another allergy... the problems are very real and need to be dealt with by individual sufferers on a daily basis.

What are your thoughts? Do you personally have experiences with this diet and individuals who use it? Please share if you are willing to...! :)

Journey Forth #5 : Causes of Poorly Responsive Celiac Disease

For the majority of individuals with celiac disease on a strict gluten free diet, their intestines will, over time, heal and they will not feel pain or have to deal with many of the challenges that can be caused by the disorder. However, there is a small percentage of individuals with the disorder in whom the body and its ability to heal is either blunted or unable to function. This is sometimes known as poorly responsive celiac disease. There are a few situations that can continue to either cause the damage, keep the body from healing in a timely or appropriate matter, or even continuing some of the symptoms due to other physical malfunctions. The known reasons for these continued difficulties are:

1. Continuing gluten ingestion – In case many people haven't noticed, gluten seems to be in everything! So it can be very challenging to make sure that everything consumed is gluten free. To make that more challenging, affected individuals must be introspective and know themselves and their habits well. So, for those who wear lip gloss, lipstick, etc...that must also be gluten free. If you tend to suck on the ends of your hair... it might be a good idea to now what is in your shampoo. Eye drops and other medications can have systemic interactions and therefore can cause damage... even if it was just one drop into an eye. Hands contaminated with gluten and then used to chew nails, etc... can also cause a small exposure. And as mentioned in an earlier post, any exposure no matter how small is dangerous and can cause damage.

2. Refractory celiac disease (refractory sprue) – Approximately 5% of patients can end up with this diagnosis and it reflects the body's inability to heal from the damage caused by the past gluten ingestion. Any future exposure will continue to cause damage while past damage remains... leaving the individuals digestive system crippled and unable to perform its necessary duties with any efficiency at all. More energy is used to digest and important nutrients are less able to be digested even with the expense of the added energy. These individuals tend to struggle for the rest of their lives trying to improve their digestion and health and may take supplements and medicine to try and help the body not only digest but continue to function in a positive way by providing missing needed nutrients.

3. Pancreatic insufficiency - For some patients, their ability to appropriately digest food can be hampered due to the lack of needed enzymes.

4. Small intestinal bacterial overgrowth - This is actually a fairly common problem that can happen alongside the damage in the intestines, but doesn't necessarily repair itself when the intestinal walls themselves are starting to recover. In this instance, the bacterial balance in the small intestine changes in two ways -first, the bacteria in the small intestine changes form and becomes more like the bacteria in the colon (which is pretty different.) Secondly, this abnormal bacteria tends to grow faster in the small intestine so that there is simply too much of it around.

5. Undiagnosed sister disease – some patients do not get better very quickly for the simple reason that celiac disease wasn't the whole answer. So many patients as they begin the gluten free diet and continue to have symptomology and difficulty after several months discover that they also have a concurring digestive disorder. The most common of these are microscopic colitis, Crohn's disease and ulcerative colitis.

6. Casein ingestion – Some people find that their symptoms do not clear up until they stop consuming Casein as well. Casein is the protein found in almost all dairy products such as milk, yogurt, cheese, ice cream, etc... even breast milk. This reaction is not well studied or proven and is listed here because it is being studied and discussed among researchers, doctors, and patients. I have found for myself that, because the gluten protein is similarly built to the casein protein, I do have more problems for the first few months after a gluten exposure if I continue to eat dairy in large quantities... Bug has found the same thing. That is just my experience however. I'll discuss the theory more in another post. :)

In my case, I have been told that I do probably have refractory sprue. I have not been healing well and even a small exposure can really mess me up for months. Even without exposures, my digestion is not improving a lot. I can have what appears to be random pain that comes and goes and is fairly consistent over months. I have discolored patches of skin causes by the digestion issues in a few areas. As soon as I have insurance, my physician is planning on another upper endoscopy with biopsies to check on the healing process.... or lack there of. I won't deny I am not looking forward to it.

What are your thoughts? Experiences... please share. :)

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 #1 : What is Celiac Disease and its Common Symptoms

So, what is celiac disease... also known as celiac sprue, non-tropical sprue and gluten sensitive enteropathy? The easiest definition is that it is an genetic autoimmune disorder which is caused by the body's hyper response to gluten in its system. When gluten is ingested and the patient is exposed, the proteins cause the immune system to produce antibodies (transglutaminase or tTG) that cause damage to the intestinal system- mostly to the small intestinal villi. At a minimum, the small intestines are damaged and they can no longer fully aid in digestion and nutrient absorption. So no matter how much the individual eats, they will be unable to get the nutrients needed from their food... or even supplements, causing many of the symptoms that characterize the disorder. And in severe cases, the intestines develop small holes which can cause leakage into the other areas of the body. It affects on average 1 in 100 people around the world and it is estimated that in America alone, over two million people are currently undiagnosed leaving themselves open to serious long term health consequences. Some doctors suggest that celiac disease is primarily a nearological disease and that the intestinal damage itself is a symptom... and not just a 'cause'.

The list of common symptoms is actually quite long... this post would probably be a page longer if I described all the symptoms that have been attributed to celiac sprue. No patient will have all of these symptoms (at least I hope not!) and many will only have a few of them. However, no matter how you look at it, these symptoms cover more than just the digestive system which explains why this disorder affects the individual in almost all aspects of their life.

Abdominal pain and cramps
ADHD - like behavior
Anxiety, depression and 'foggy mind'
Bloating and gas
Bone and joint pain
Canker sores
Chronic fatigue, sometimes 'knock out' sleep
Constipation or diarrhea
Emotional challenges including anger and irritability
Headaches and migraines
Missed menstrual periods, infertility and miscarriages
Nausea / vomiting
Restless leg syndrome
Rheumatoid arthritis
Tingling in the extremities

In some ways, I am very typical. I have struggled with canker sores since my childhood and have thrown up at least once a day since the age of sixteen until a few months after diagnosis and the subsequent dietary changes. One thing about the vomiting is that the abdominal pain would lessen or disappear after throwing up... a blessing in the yuck. :) I can sometimes struggle with depression, but most of the time my major emotional changes focus around anxiety and irritability. I have been told several times I am infertile (Bug is the best miracle I have ever received!) and I have never had a regular cycle until about a year after dietary changes. I have struggled with headaches, random abdominal pain and sometimes I wake up because my legs are shifting and 'twitching' while I'm resting. I also tend to feel tired all the time and sleep is something that I am not very successful with as often as I would like.

There is only one treatment for celiac disorder that is effective and allows the individual to lead a relatively healthy, normal life. The patient must adhere to a strict diet that is free from gluten and its proteins. Even the smallest amount of gluten, such as crumbs from wheat toast or a smidgeon of regular soy sauce can cause the unwanted immune response. Also, those individuals who are most sensitive can get an exposure not just from eating gluten, but from breathing it in or getting gluten into sores and other openings in the skin. And while it takes only a short amount of time for the damage to start, it takes weeks and even months for the healing to be effective enough for digestion to get back to a decent absorption rate. And for some, they may never recover fully due to the extensive damage done to the intestinal walls and villi. Depending on how long it took the patient to be diagnosed and to change their diet and lifestyle, there could be only small amounts of damage... or years worth of serious impairment and harm. In my case, when I was diagnosed with the disorder with the usual endoscopy and the unusual over forty biopsies, I was over thirty years old and the damage was pretty bad. My physician said that my stomach and the first several feet of small intestine looked like shattered and splintered glass. The pictures I've seen are quite horrifying and when I look at them and try to imagine what I see 'inside' me it's challenging. It's not difficult to understand why I tend to feel so much pain though. :)

There is a big difference between celiac disease and gluten sensitivity although it is not as easily seen. The big difference is that people with gluten sensitivity have the majority of the symptoms, but they do not have the intestinal damage as part of the package- the autoimmune part isn't their burden. Don't get me wrong- their bodies sensitivity to gluten is still uncomfortable and probably many other descriptive words. But the immune system doesn’t try to tear apart the body and that my friends, it a wonderful thing! How a person is diagnosed is quite simple. If you have the problems with gluten, but have no antibodies in your blood and a clean endoscopy.... then you are simply gluten sensitive. (Living it isn’t quite that simple, but I digress.)

So here is the first part of the journey! Next up I'll write about the a few of the less common problems – such as skin trouble as well as appropriate food and items to avoid. Thoughts...?

Start of a Journey: Discussions on Celiac Disease

If there is one thing I have learned over the last several years after my diagnosis with celiac disease, it is that this disorder is so complex and causes so many different challenges to the body that even those who have been diagnosed and struggled with the disorder for years still find that their knowledge may not explain all the questions and concerns that they uncover going forward in their lives. I still have so many questions that my physician cannot easily answer or that science hasn't discovered an answer for yet that I find trying to explain the condition to some one who has never had it and make sure they truly understand feels near impossible for a few reasons. One reason is that every person with celiac sprue is different and exposure, heredity, years before diagnosis, and past eating habits can make a really big difference in how the disease is perceived and managed. The confusion that some people feel from knowing both individuals with celiac disease and also from knowing individuals with gluten sensitivity and not knowing the differences between the two disorders as well as the other differences mentioned above is truly understandable. After some recent conversations with a few friends and a wonderful Relief Society President, I have decided to try and take the opportunity to explain the basics about the disorder but also to explain how it affects me... understanding that my experience is not nor can it be the same as anyone elses. My symptoms, my challenges all may be different from the majority of other patients. What I can do is try my best to explain what I do know to the best of my ability- allowing people to correct me in the comments or mention their own experiences and try to start a conversation that will bring more understanding and acceptance for those of us who struggle with it, but also to those around us... who want to help and are not sure how and don't really understand what all the fuss is about anyway. :)

So I am going to break down the information into different posts based on topic and space as its actually a lot of a convoluted information. I will try and cover the most common symptoms as well as sister disorders. I think it's also worthwhile covering long term problems, foods both allowed and unacceptable, and other topics that may become a part of the life of someone with celiac disease. If anyone reading this has questions, wants to add things, etc... please do not hesitate to comment. Let's start a conversation and help and educate each other! That will make the effort that I am putting forth now worthwhile and a joy indeed.