Thursday, 5 February 2015

ME,Coeliac Disease, Leaky Gut Syndrome, and PoTS

For the sake of providing a little background information on what we are dealing with, I’ve outlined the most prominent health problems that Mike has been diagnosed with along with links to further information.

Chronic Fatigue Syndrome is exactly as it sounds – long term, debilitating exhaustion persisting longer than six months, interchangeable with ME
Myaligic: muscle aches and pains
 Encephalomyelitis: inflammation of the brain or spinal cord.

CFS/ME is a controversial illness for a few reasons. There is no one test to diagnose a person with CFS/ME. It is up to the discretion of the Physician to label a person with this condition after observing a set of symptoms associated with the condition, which isn’t always easy because the symptoms and their severity range from person to person. There is also no proof of inflammation in the brain or spinal cord, which brings the “Encephalomyelitis’ into question. While doctors often use the Chronic Fatigue name, patients often prefer the ME diagnosis because the Fatigue in CFS doesn’t accurately describe just how debilitating the accompanying exhaustion is.

There is no known cause of CFS/ME, just theories. One popular theory is that it is triggered by a viral infection like influenza or glandular fever. It is almost as if the person affected becomes ill with a flu like virus, and then never fully recovers the strength they had before becoming ill. Everyday is a fog-filled fight with aches, pains, and debilitating fatigue. Not everyone with CFS/ME is set off by an illness however. Other known triggers are: poor immune system, imbalance of hormones, stress, depression, emotional/physical trauma, and possibly a genetic predisposition.

Treatment for CFS/ME is virtually nonexistent and vague at best. Patients might be advised to take on Cognitive Behavioral Therapy to help deal with the diagnosis, given graded physical therapy, or prescribed pain relievers or antidepressants to help manage the pain. It is also advised to avoid stressful/traumatic situations, avoid caffeine, sugar, or other foods that might cause reaction, and to relax more.


Autoimmune:
relating to disease caused by antibodies or lymphocytes produced against substances naturally present in the body.
In other words, your body attacks it’s own cells.

Coeliac Disease in an autoimmune condition where the body recognizes gluten (the protein found in wheat, rye, barley, and more) as an unwanted foreign object and responds as such by attacking healthy tissue throughout the body. Symptoms for Coeliac Disease are often associated with gut issues i.e. abdominal pain, bloating, gas, diarrhoea, but can also include things like mouth ulcers, weight loss/gain, hair loss—the list could go on. Symptoms can also result in more serious problems when left unattended for too long, such as: arthritis, infertility, osteoporosis, and possibly even cancer of the small bowels.

In a healthy gut, the small intestine is lined with villi (small finger like projections). The villi works to absorb nutrients and electrolytes from food as it passes through, leaving the larger undigested food particles to continue on to the large intestine. When a person afflicted with Coeliac Disease consumes gluten, the small intestine becomes damaged and the villi is unable to absorb the nutrients of the food as these particles pass through which in turn leads to malnourishment.

The only known treatment for Coeliac Disease is to remove gluten from the diet entirely. Unfortunately, this is a classic case of easier said than done. It’s not just a matter of ‘don’t eat bread and pasta’. Coeliac’s must also be aware of what’s in their medicines, lip balms, and vitamins because gluten is commonly found in everyday products. Cross contamination is also a very serious problem that people with gluten intolerances face. Since gluten/flour is an airborne substance, food prepared in factories and kitchens that work with gluten containing products can and do easily contaminate seemingly gluten free foods. It’s also transfers from worktop surfaces, and through frying oils. To put it bluntly – this is a total bitch for Coeliac’s who want to eat out in restaurants like everybody else.



Leaky Gut Syndrome is the plain English name for “Hyper-permeable Intestines”. In other words, the small intestine in the gut becomes porous due to intestinal damage, allowing undigested food particles, known as macromolecules, to leak out of the intestine and into the blood stream. When the macromolecules enter into the blood stream, your body reacts as if foreign invaders are attacking the body and attacks right back. This can result in a wide range of inflammatory responses like brain fog, headaches, IBS, arthritis, etc etc. Now, not only is gluten considered the enemy, by formerly safe foods can set off an inflammatory response because of the macromolecules entering freely into the blood stream.

The problem with Leaky Gut Syndrome is the fact that it is not yet formally recognized fully by the medical profession as being a legitimate condition. While it is known that consuming excessive amounts of alcohol, taking non-steroidal anti-inflammatory drugs, undergoing chemotherapy, eating dairy products, and taking antibiotics can irritate and damage the seals between cells causing the gut to become temporarily porous, this is only seen as a temporary reaction of the body. According to the NHS “Leaky gut syndrome” web page, certain diseases are also known to cause inflammation and damage the gut for a limited time. Treatment usually involves some sort of elimination diet to give the body time to heal itself or by taking Probiotic supplements to balance out the flora in the gut.  

The theory of Leaky Gut Syndrome is currently too vague of an idea. It hasn’t been proven wrong, but it hasn’t been proven to be right just yet.




            Postural: posture
            Orthostatic: moving in an upright position
            Tachycardia: abnormally rapid heart rate
Syndrome: a set of symptoms that cause or relate to one another

In other words, people with PoTS experience an abnormal rise in heart rate when moving into an upright position which then triggers a number of different symptoms like: dizziness, headaches, brain fog, fatigue, palpitations, nausea, and fainting. The trouble with PoTS, is that most of the symptoms (aside from the fainting) are invisible. Symptoms often get blamed on other problems: dehydration, exhaustion, stress, not enough food, or like most invisible illness symptoms get passed off as being; “all in the head”. Because of the lack of awareness and understanding surrounding PoTS and the difficulty in detecting visual symptoms, it can be a tricky disease to diagnose which is why the final diagnosis cannot be made without wearing heart monitors or performing a tilt table test. Cognitive Behavioural Therapy is even listed one of the possible treatments for PoTS patients, not because they are dealing with an imaginary illness, but because PoTS patients often develop other forms of health anxieties after being told for so long that their symptoms do not actually exist.








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