My Sister and her Autoimmune Disease CREST
It was early in the 1980’s when my sister told me she had been diagnosed with CREST. She didn’t know much about it and neither did I.
Those were the days when you had to go to the library and look up periodicals to understand the medical and science world.
There wasn’t a lot about it, but what came through loud and clear is that my sister had a life span of only 10 more years. The only advise was to keep warm, give up smoking and to take a medication that would reduce the severity of the inflammatory disease.
CREST is an acronym for five diseases and as we know today they are all autoimmune diseases.
C – Calcinosis – is a systemic form of scleroderma and can cause small white calcium lumps to form under the skin on fingers or other areas of the body.
R – Raynauds – short term interruption of blood flow to the extremities
E – Esophagitis – inflammation that causes damage to the tissues of the esophagus
S – Scleroderma – results in hardening of the skin. In the more severe form, it also affects internal organs, which begin to harden.
T – Telangiectasia – also known as spider veins or angioectasias, and are small dilated blood vessels near the surface of the skin
In her mid 20’s this was a devastating disease and prognosis. On top of CREST she also had gut issues, but looking back, this was ignored until further symptoms occurred. My sister did what she could to help the condition. She tried her best to eat a good diet, but she loved her chocolate biscuits. She moved to a warmer climate, from Victoria to Queensland, didn’t take any medication although she failed to give up smoking.
Lisa managed to live another 20 years, dying at the age of 46. The disease that eventually took her life was Esophagitis.
My sister ignored signs that there was something wrong with the tube between her mouth and her stomach. She found it hard to swallow and many times when we were eating together she would run to the bathroom because she needed to vomit as the food would not go down. She believed it was just a badly inflamed esophagus, but in fact it was a growing tumor.
One day she called me to say she couldn’t even keep down water, and that was when she finally went to the hospital. She was referred to a specialist after a NG tube was inserted from her nose to her stomach enabling her to have water. The diagnosis was an 8 cm tumor on her esophagus stopping the passage of food and water. She was given 3 months to live.
She chose not to have an operation, chemotherapy or radiation, but instead had a PEG put in her stomach. This tube was inserted directly through the skin into the stomach allowing her to feed herself purified food through a large syringe. The dietitian at the hospital gave my sister a food formula. The formula ingredients were soy protein, fructose, vegetable oil, isolated minerals and synthetic vitamins as well as other additives and preservatives. There was no real food in the formula at all.
How was Lisa to heal, have energy, and stay alive eating artificial food or live the best life she could in the time she had left?
Lisa returned home and I helped her devise a meal plan consisting of pureed boiled vegetables, broths, pureed fruit, food based supplements and other alternative modalities. Having a PEG made it easier than a NG tube. The NG tube would become blocked, whereas if the PEG became blocked she merely cleaned it out with a straw cleaner.
Lisa continued to work as a Chiropractor, went snow skiing, and lived the best life she could considering all that was going on in her body. And you’ll be happy to hear that she stopped smoking.
On the Friday before she died, 12 months after her diagnosis, she called me to tell me she was feeling amazing and that maybe she was getting on top of the cancer. On the Saturday we went to a play and she fell asleep, she told me she had hit a wall and she wasn’t sure what was happening. On the Sunday she began to vomit blood, we took her to emergency, where we were told there wasn’t much that could be done, but to care for her through to the end of her life.
She died on the Monday at 10.57am, the exact hour that she had been born.
Her passing was peaceful. She knew that she was dying and told me that she was ready to go. She was sick of her body, a body that never did what she wanted it to do. Lisa had such an active mind and her body stopped her from achieving some of the things she would have liked to do in her life. Having said that she traveled the world and went to many different cultures, living a very full life in just 46 years.
I miss my sister. She had an amazing mind and we talked about many things in depth, those conversations were important and continue to guide me. In hindsight and with more knowledge I now understand what was going on in her body.
Disease is NOT something that is for the unlucky.
A family and personal history begins to bring out exactly the process of disease. By knowing my sisters history I can see that this was not about luck or no luck but rather about a sequence of events that caused her demise. My sister was born in 1959 in Iowa USA. Our mother was the oldest of 11, born in 1937, into a corn farming family.
Our mother was exposed to arsenic and lead in 1938 and 1939. She also was exposed to a decade of the spraying of DDT, a known neurotoxin, until is was banned in the US in 1955. Fat cells accumulate toxins for the protection of the body. No doubt my mother had stores of body fat that had numerous heavy metals and toxins. Many women lose fat during pregnancy and breast feeding, allowing the fat cells to rid themselves of toxins and exposing their baby to these toxins.
No doubt my sister bore the brunt of the toxins my mother had accumulated over the whole of her life. Today umbilical cord studies reveal a huge exposure to man-made chemicals, many of them endocrine disruptors and neurotoxins, are transmitted from mother to baby.
My sister was the one that was always sick, my brother and I never seemed to get sick. We were both born in Australia, shortly after my sister. Lisa at the age of 10 had her tonsils and adenoids removed as well as given a course of antibiotics. She had recurrent ear infections and wasn’t an energetic child or teenager. Lisa started to have digestive issues from the age of 16, so it was just under a decade later when she was diagnosed with 5 autoimmune and inflammatory diseases.
An autoimmune disease is where the body has lost its ability to know self from enemy and so begins to fight, inflame and destroy body parts.
Autoimmune diseases include; type 1 diabetes, RA, Lupus, MS, Hashimotos, Graves, Addisons, Psoriatic arthritis, Scleroderma, Coeliac, Crohns, Dementia to name a few. It has been identified that there are over 100 autoimmune diseases affecting every organ and system in the body. Autoimmunity back in the 1980’s was rarely spoken about, yet today I know many people who have the diagnosis of an autoimmune disease.
Autoimmunity as we know today requires 3 main factors:
- genetic predisposition
- environment
- compromised GUT lining
You can’t change your genetics, however you can change your environment by being aware of the chemicals around you, the food you consume and the water you drink, as well as reducing your stress.
The environment plays a large role in epigenetics – the turning on and off your genes.
“Genetics load the gun, lifestyle pulls the trigger.” Caldwell Esselstyn
One of the most important factors with autoimmunity is the compromised GUT lining and the destruction of the microbiome that lives within the GUT.
The microbiome helps in the protection of the GUT lining (epithelial layer) by producing a mucus layer. When the microbiome is compromised this protective mucus layer is destroyed causing GUT and systemic issues. Dysbiosis can also cause a decrease in Vitamin B, reduction in production of neurotransmitters, compromised immunity, lack of Vitamin K, poor food digestion and poor clearance of hormones. Our GUT lining is one cell thick, each cell connection is called a tight junction. These junctions open and close depending on the exposure to pathogenic bacteria and gliadin (gluten).
A protein called zonulin, is the gate keeper. The opening and closing of the tight junctions happens on a daily basis. The problem is when the tight junctions remain open allowing undigested food particles and pathological bacteria to get into the blood system. When foreign particles such as undigested proteins get into the blood system, it results in an immune response, as it sees the undigested proteins as the enemy. This response may be local or it can become systemic.
In the case of a systemic immune response a process called molecular mimicry is one way the body loses it’s ability to know the difference between an undigested protein and an organ or system in the body. This is one mechanism that leads to autoimmunity. If the GUT lining and microbiome are never fixed then the autoimmune disease perpetuates, rendering the joint, system or organ dysfunctional.
The medical protocol of treating these autoimmune diseases, is to use methotrexate (a cancer drug), an anti-inflammatory or an immune suppressant medication. While this method of treatment may treat the symptom for a time, it does not stop the disease, as it doesn’t look at the root cause of the disease.
As we know better we can do better.
Back in 2007 when my sister died, I didn’t know better, I did what I knew and that was to feed the body real food and give it the opportunity to use the nutrition to heal the body. My sister had obvious GUT issues, we did not address them. In hindsight (and what a wonderful thing that is) we should have been healing her GUT so that the nutrition she was consuming could heal her body. In the last decade there has been a plethora of research around the GUT and Microbiome, and the importance of epigenetics and the environment and their impact on our genetic switches.
There are also many individuals who have healed themselves from autoimmune diseases by healing their GUT issues, here are just a few;
Dr Terry Wahl and Sue Moore cured themselves of MS by healing their GUTs, changing their diet and environment.
Dr Natasha Campbell McBride, healed her sons GUT and in turn reversed a diagnosis of Autism.
Dr Sarah Ballantyne had many autoimmune conditions and inflammatory issues and healed her GUT first then changed her diet and environmental factors.
We regularly receive emails from people who have told us that their ‘auto immune symptoms’ have reduced and/or disappeared when they have made changes to their diet. We are now seeing research out of Deakin University from Dr Felice Jacka in healing mental disorders by healing the GUT. With research becomes knowledge and with knowledge becomes the ability to change.
If you have been diagnosed with an autoimmune disease or a GUT issue than you live in a time where there is hope. We know how the GUT is compromised and we know the steps we need to take to heal both the GUT lining and the microbiome.
Once upon a time autoimmunity and the diseases associated had no cause and no cure. However that is not the case in current times. There is hope, but that hope involves education and action.
Any disease should not be taken as a death sentence but rather an opportunity to:-
- understand what your body needs
- address the root cause
- make appropriate changes that are relevant for the individual
The realization that if we continue to do the same thing then we will continue to get the same result, but if we take the opportunity and make changes then we will get a different outcome.
At Changing Habits our team are all about education, and then we help you put that education into action. If you want to discuss your specific health concerns, you can book a health review with one of our nutritionists here.
Can change make a difference? You bet!
Cyndi O’Meara
Love your article Any suggestions on treating lichen planus and and burning on top of the head ??!
Many thanks … Mary
We have loads of blogs and information regarding Gut Health over on the Changing Habits website (https://changinghabits.com.au/?s=gut+health&et_pb_searchform_submit=et_search_proccess&et_pb_include_posts=yes) if you’re interested. If you need further individualised support and guidance I would recommend you consider getting a consultation with someone who is up to date with all of the latest Gut Health information so you can begin to heal the root cause of your issues.
I was diagnosed with Graves’ disease back in November 2016
I’m willing to do anything to help myself and hopefully save my thyroid from RAI treatment
I’m currently taking carbimazole and have changed my diet to gluten free, organic fruit and veg, grass fed organic meat and poultry and limited organic dairy
Also make my own cleaning products and have purchased organic makeup which I now only wear when going out
Wow congratulations, it’s so great to hear how many positive changes you have implemented into your own life. I hope you’re starting to see some really positive shifts and changes in your own health issues.