Coeliac Journey Through Covid-19 – Retirement
Retirement
After my stroke, I was not allowed to drive because of an eyesight problem.
As my late wife and myself had decided we would move back to London on our retirement, I decided to carry-out our plan by myself.
I sold my large house in Suffolk and moved to a smaller one in Dalston in East London.
This is an area, where my many and varied ancestors had strong roots.
My father was born close by and was a direct descendant of a Jewish tailor, who around 1800, was kicked out of Konigsberg in East Prussia, which is now Kaliningrad in Russia, for no other reason than he was male, eighteen and Jewish. I suspect my coeliac disease comes from this Jewish ancestor. No female born into the family has ever successfully given birth and my granddaughter was born with a congenital hernia of the diaphragm, which was successfully repaired by surgery, when she was a few hours old. She now suffers from endometriosis.
My mother’s family were a mix of Huguenots and Devon yeomanry and although she was born a few miles away, her mother was born just round the corner.
My father called himself a London Mongrel and I use the term about myself, as my genes are probably more mixed than his.
Since around the turn of the century, I have been a blogger and around 2008, I started my blog called the Anonymous Widower. The topics, I cover are very varied and have made me quite a few friends.
I am a strong advocate of using blogging to improve peoples’ lives.
Coeliac Journey Through Covid-19 – Medical Research
Medical Research
I first got involved as a lab-rat in medical research, when I had my second endoscopy to check for coeliac disease at Addenbrooke’s Hospital in 1997. Rebecca Fitzgerald took a sample of fluid from my gut for her Barrett’s oesophagus research.
After my wife died, I asked my contact in Alumni Relations at Liverpool University, if they did widowhood research.
They are one of the few universities that do and I did several interviews for PhD students in the unit, which is in the Psychology Department. It was very much a positive experience and certainly helped with my grieving.
In some ways the most enjoyable piece of research I have been involved in, was at the University of East London, where they were using computers to measure the balance of those recovering from strokes.
My GP also suggested that I get involved in drug tests at Queen Mary University. The tests were abandoned as the drug didn’t have any good or bad effects, but now I’m one of the William Harvey Centre’s lab-rats.
I also help to sponsor pancreatic cancer research at Liverpool University in memory of my son.
In There’s More To Liverpool Than Football And The Beatles!, I detail some research, that I sponsored in a small way.
I may be tempted to do the fund-raising trip again.
I always advise people to get involved in medical or psychological research, as I have found it such a beneficial experience.
One thing that is needed, is an on-line database of all research projects that are looking for volunteers.
Remember, that much medical and psychological research is about as dangerous as meeting someone in a GP’s surgery for a chat or perhaps in a cafe and having a coffee.
Coeliac Journey Through Covid-19 – A Few Bad Years
A Few Bad Years
In 2007, my wife died of what her consultant at Papworth said was one of the worst cancers he’d ever seen. It was a squamous cell carcinoma of the heart.
Her’s was the only occurrence in the UK that year and someone told me, there were four in the United States.
Our youngest son; George, then died of pancreatic cancer in 2009.
When I had been diagnosed as a coeliac in 1997, my wife and I had told our sons to get themselves tested, as is now advised on the NHS web site.
But George was a sound engineer in the music business, who lived the unhealthy rock-and-roll lifestyle.
A year later, I had a serious stroke in Hong Kong.
I had had a warning a year or so before and Addenbrooke’s recommended I go on Warfarin, but my GP in Suffolk, talked me out of it.
Now twelve years later, my GP and myself manage my Warfarin, where I do the testing of my INR on my own meter from Roche.
But then I am a Graduate Control Engineer!
A couple of doctors have said I have made a remarkable recovery, and I’ll go along with that as the only thing I can’t do, that I could before the stroke is drive, as the stroke damaged my eyesight.
On the other hand, the latest therapy for stroke in the United States is B12 injections and I haven’t missed one of my three-monthly injections since 1997.
If anybody is doing serious research into B12 and stroke recovery, then I would be happy to be a lab-rat.
Coeliac Journey Through Covid-19 – Coeliac Diagnosis
Coeliac Diagnosis
My health was very variable as a child.
I would often have months off school and my health only really improved, when my parents bought a second home in Felixstowe, where we spent most of our holidays.
Perhaps it was the sea air, as going to Liverpool University didn’t seem to adversely affect my health.
I had been having gut problems for years and then in Autumn 1997, I didn’t see my GP, but a very elderly locum, who as I had recently had my fiftieth birthday, gave me a present of my first blood test.
It turned out that I was very low on B12 and a course of B12 injections was arranged.
As the injections didn’t raise my levels, an appointment was made to see a consultant at Addenbrooke’s Hospital in Cambridge.
It was a Monday, when I went to the appointment and after a quick chat and no examination, the consultant said that they would take some blood. Which they did!
Within forty-eight hours a letter arrived on my door-mat saying that I was probably coeliac and it would be confirmed by endoscopy.
Two endoscopies without sedative or anaesthetic were performed and I was confirmed as coeliac.
The first was performed by Dr. Richard Hardwick and the second by Dr. Rebecca Fitzgerald.
My gut health has been better since, I’ve been on a gluten-free diet, backed up by three-monthly B12 injections.
A few years later, I was talking to a gastroenterologist in Cambridge and he told me that he thought he had more coeliac patients than any other in England.
The manager of Carluccio’s in the city, also told me that they sold a very high percentage of gluten-free food.
Were Cambridge testing a genetic test for coeliac disease or was it just a Whack-A-Coeliac policy?
They certainly had everything geared up for high-speed diagnosis. They even did the endoscopies without a sedative, so they didn’t need any recovery beds.
Coeliac Journey Through Covid-19 – Introduction
Introduction
I am coeliac and I had an interesting journey through the Covid-19 pandemic.
My experiences will be laid out in this narrative, as I believe they might be of use to someone.
I was born in 1947 and after a good education at Minchenden Grammar School in North London, I read Electrical Engineering and Electronics at Liverpool University, where in addition to getting a B. Eng degree, I met and married my late wife; Celia. We had three boys in the early seventies.
My working life was mainly spent in the solving of mathematical problems and writing software to perform complex calculations mainly in the fields of data analysis, project management, statistics and the solving of simultaneous differential equations.
The Artemis software, that I wrote in the 1970s, controlled the building of the Channel Tunnel, was the software of choice in the development of the North Sea oil and gas fields and was even used by NASA to plan the missions of the Space Shuttles and their refurbishment after each flight.
My business partners and myself sold the company to the American aerospace company; Lockheed in the 1980s.
Since then, I have been involved in various ventures.
The most successful was to back two inventors, who had developed an aerosol valve that used nitrogen as the propellant.
We sold that on to Johnson & Johnson, but the experience led to the development of the Respimat Inhaler for Boehringer Ingelheim.
Coeliac Journey Through Covid-19
I am writing this presentation for a meeting, in the next few days, so there will be several pages with similar titles to this.
The Luck Of The Genes
There’s an article in The Times, which is entitled When It Comes To Success, Luck Can Trump Intelligence.
It got me thinking about my life.
I have been pretty successful in life, and I put it down to winning the gene lottery, with a part-Jewish father and a part-Huguenot mother, who taught me hard work and everything they knew. So were my genes forged by religious persecution in the harsh conditions of the ghettoes of Europe?
But luck has always played a great part in my success. On the way, three or four successful men have chosen me for projects and I’ve repaid them by succeeding. I’ve been at the heart of the creation of two world-changing companies.
But the luck turned bad, a dozen years ago. My wife and our youngest son died from cancer and I had a serious stroke.
But the genetic lottery of being coeliac and therefore having B12 injections, has meant, I’ve made a good recovery from the stroke. The B12 injections is a stroke recovery method from the States, but is considered quackery over here. I believe it saved my life.
And then during the pandemic, those coeliac genes and the gluten-free diet I need for health, seem to have protected me from a severe dose of the covids. I’ve yet to find a fellow coeliac, who has had one either. Scientific research from Italy and Sweden, is also backing up my observations.
Lady luck has smiled on me. Or does the devil, look after her own?
Should Those With Long Covid Be Checked For Coeliac Disease?
One of my Google Alerts picked up this interesting page on the British Medical Journal.
In response to this paper on the journal, which was entitled Long Covid—An Update For Primary Care, a retired GP named Andrew Brown had said this.
The update reminds us that alternative diagnoses should be considered in patients presenting with long covid symptoms. I suggest that screening for coeliac disease should be added to the list of conditions to look for. Coeliac disease occurs in more than 1% of the population, with many more cases undiagnosed. Typical symptoms of fatigue and GI problems are the similar to those of long covid.
As a non-medical person, I would agree, as after the Asian flu of 1057-58, I was off school for a long time with long covid-like symptoms and my excellent GP; Dr. Egerton White was very worried.
But at the time, it is now known, I was an undiagnosed coeliac.
So was my coeliac disease meaning that I couldn’t fight the flu?
I cover the link between coeliac disease and long covid in more detail in Covid Leaves Wave Of Wearied Souls In Pandemic’s Wake.
High Risk Of Coeliac Disease In Punjabis. Epidemiological Study In The South Asian And European Populations Of Leicestershire
The title of this post, is the same as that of this peer-reviewed paper on PubMed.gov.
This is the abstract of the paper.
The purpose of this study was to measure the incidence of coeliac disease in different ethnic communities and investigate the hypothesis that the incidence is decreasing in most European countries and the role incomplete retrieval of data may play. In a retrospective study of histologically confirmed cases of coeliac disease between 1975 and 1989 in the City of Leicester, 106 patients with coeliac disease were identified. Of these 86 were European and 20 Asian. The overall incidence of coeliac disease in Europeans was 2.5/10(5)/year (95% CI 2-3.2), in Gujaratis 0.9/10(5)/year (95% CI 0.4-1.8), and in Punjabis 6.9 (95% CI 3.2-12.3). These differences were independent of religious belief. The relative risk to Punjabis compared with Europeans is 2.9 (95% CI 1.5-5.3; chi 2 = 12.5, p < 0.01) and to Gujaratis 8.1 (95% CI 3-22.4; chi 2 = 25; p < 0.001). Gujaratis were at 0.4 risk of Europeans (90% CI 0.2-0.8; chi 2 = 6.7; p < 0.01). The incidence in the urban populations of Leicester was 6/10(5)/year (95% CI 1.3-1.9) which was significantly lower than the 3.2/10(5)/year (95% CI 2.7-3.8; chi 2 = 5.6; p < 0.001) in surrounding rural areas. This study shows that the incidence of coeliac disease in Punjabis (Sikhs, Hindus and Muslims) is 8 times higher than in Gujaratis (Hindus and Muslims) and 4 times higher than in Europeans in Leicester.
I find the last sentence in particular very significant.
I’m no medic, but I think it is reasonable to assume, that in a particular community for every diagnosed coeliac, there will be several undiagnosed coeliacs out there.
In this overview of coeliac disease on the NHS web site, this is said about the incidence of coeliac disease.
Coeliac disease is a condition that affects at least 1 in every 100 people in the UK.
But some experts think this may be underestimated because milder cases may go undiagnosed or be misdiagnosed as other digestive conditions, such as irritable bowel syndrome (IBS).
Reported cases of coeliac disease are around 3 times higher in women than men.
The one-in-100 figure is often used in web pages in European countries or Australia, Canada and the United States, so I’ll go along with that.
So does that mean that Punjabis living in Leicester, have a one-in-twenty-five likelihood of being coeliac?
Whether you have been diagnosed though, is a matter of pure luck.
I had been having gut problems for years and then one Autumn, I didn’t see my GP, but a very elderly locum, who as I had recently had my fiftieth birthday, gave me a present of my first blood test.
It turned out my B12 levels were very low and after several months of B12 injections, which made little difference to my B12, my GP decided to send me to a consultant at Addenbrooke’s Hospital in Cambridge.
My appointment was on a Monday morning and consultant took about ten minutes to ask a few questions, after which he said they would take a few bloods.
On the Wednesday morning, I received a letter that said, that I was probably suffering from coeliac disease and this would be confirmed by endoscopy.
Was I diagnosed solely by analysis of my blood? This was in 1997, which is after the date of the Leicester study.
Two endoscopies without sedative or anaesthetic were performed and I was confirmed as coeliac.
The first was performed by Dr. Richard Hardwick and the second by Dr. Rebecca Fitzgerald.
Both doctors feature in this story on the Cambridge University Hospitals web site, which is entitled Familial Gastric Cancer – Case Study.
My problems have been minor compared to the two sisters in the story.
My luck had been good and I recommend that everyone who feels they could be coeliac should get themselves tested.
Cases Of Covid-19 In Leicestershire
This article on the Leicester Mercury is entitled 11 Areas Of Leicestershire Have Among Worst Infection Rates in the UK.
In Coeliac Disease: Can We Avert The Impending Epidemic In India?, I started like this.
The title of this post, is the same as that of this article on the Indian Journal Of Research Medicine.
With the high levels of COVID-19 in Leicester and an Indian population who make up 28.3 % of the population of the city, I was searching the internet to see if there was any connection between those of Indian heritage and coeliac disease.
I know you should not try to prove a theory. But as a coeliac, I’m very interested to see how the millions of diagnosed coeliacs on a gluten-free diet like me, are faring in this pandemic.
I then talk about some extracts from the Indian research.
In a section entitled, which is entitled All Wheats Are Not Equal, I say this.
The other dimension to this problem is that not all wheat is alike when it comes to inducing celiac disease. The ancient or diploid wheats (e.g. Triticum monococcum) are poorly antigenic, while the modern hexaploid wheats e.g. Triticum aestivum) have highly antigenic glutens, more capable of inducing celiac disease in India, for centuries, grew diploid and later tetraploid wheat which is less antigenic, while hexaploid wheat used in making bread is recently introduced. Thus a change back to older varieties of wheat may have public health consequences.
So did all these factors come together to create the high levels of Covid-19 in Leicestershire?
Conclusion
I am getting bored with saying this. More research needs to be done!
Why A Lucky Few May Help The Rest Of Us Beat Disease
The title of this post, is the same as that of this article in The Times.
This is the sub-title.
A British biotech firm believes patients who defy odds could hold the key in their blood.
These three paragraphs introduce the article.
Patient 82 should be dead. At the age of 63 he was diagnosed with pancreatic cancer. In most cases, he would not have lasted a year. But seven years on, patient 82 is alive. Not merely alive — thriving.
He enjoys gardening. He likes seeing his grandchildren. He enjoys life.
How? The answer, a British biotech company believes, could lie in his blood. Now, with the help of dozens of other anonymous patients, all of whom have defied their cancer prognoses, they hope to find it.
Note, that the company is Alchemab Therapeutics.
The article got me thinking about myself.
I belong to a group of people, who are twenty-five percent less likely to suffer from cancer according to peer-reviewed research at Nottingham University.
I am coeliac and adhere to a strict gluten-free diet.
There may be other benefits too!
I have not had a serious dose of the covids, although I may have had a very mild case at the beginning of 2020 after I shared a train with a large number of exuberant Chinese students, who had recently arrived at Manchester Airport and were going to their new University across the Pennines.
I have also since found at least another seventy coeliacs, who have avoided serious doses of the covids.
Research From The University Of Padua
This paper on the US National Library of Medicine, which is from the University of Padua in Italy.
The University followed a group of 138 patients with coeliac disease, who had been on a gluten-free diet for at least six years, through the first wave of the Covid-19 pandemic in Padua.
This sentence, sums up the study.
In this analysis we report a real life “snapshot” of a cohort of CeD patients during the SARS-CoV-2 outbreak in Italy, all followed in one tertiary centre in a red area of Northern Italy. Our data show, in accordance with Emmi et al., the absolute absence of COVID-19 diagnosis in our population, although 18 subjects experienced flu-like symptoms with only one having undergone naso-pharyngeal swab.
It says that no test subject caught Covid-19, in an admittedly smallish number of patients.
But it reinforces my call for more research into whether if you are a diagnosed coeliac on a long-term gluten-free diet, you have an immune system, that gives you a degree of protection from the Covids.
The Times article mentions the immune system.
I believe my immune system to be strong after the reaction I had to the Astra Zeneca vaccine. I didn’t feel well to say the least after my Astra Zeneca vaccine and my GP and other doctors felt that it could be due to my immune system, thinking that the chimpanzee virus-based vaccine was a danger and attacking it.
Significantly, I had no reaction to the second dose. So had my immune system recognised the vaccine as a friend not a foe?
My son, who my late wife was sure was an undiagnosed coeliac, died of pancreatic cancer at just 37.
How did my late wife know? Don’t question her intuition and also she felt that my son and myself felt the same to her touch.
It should be noted that my son’s daughter was born with a Congenital hernia of the Diaphragm. Congenital defects can happen to people, who have a coeliac father.
At the age of 20, my granddaughter is fine now, after heroic surgery at the Royal London Hospital, at just a few days old.
The Anonymous Widower 