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 #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...?