Showing posts with label nutrients. Show all posts
Showing posts with label nutrients. Show all posts

2014/07/09

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. :)

2014/07/05

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!

2014/07/04

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...?