Coeliac Journey Through Covid-19 – The Pain Of Coeliac Disease
The Pain Of Coeliac Disease
Celiac disease has caused a lot of pain in my life.
My Unhealthy Childhood
I was a very unhealthy and sickly child and all that was done was to remove my tonsils.
I also don’t think that London’s filthy air of the 1950s helped.
Certainly, my parents’ retirement to Felixstowe in Suffolk and then studying at Liverpool University in the 1960s, seemed to improve my health.
But if I’d been diagnosed as coeliac, would I have been so unhealthy.
Bullying At School
I was very small at school, due to my inadequate non-coeliac diet and at both Primary and Grammar School, I was bullied.
The bullying only ended after, my left humerus was broken in an incident, when I was fourteen.
Would I have been so small, if it had been known to be coeliac and was eating accordingly?
The Early Death Of My Paternal Grandfather
Whether he was a coeliac, I not know, as he died in 1929 and I never met him! But he died at 51 of pneumonia and acute asthma. My father told me he was a very heavy drinker.
The Early Death Of My Father
My father died at 69 of a stroke and I am certain he was coeliac, as he was so like me at fifty.
My father after the problems his father had with drink, made certain, that my drinking habits were similar to his, which were a few units a week. Although we shared a habit of drinking lots of tea.
My Granddaughter Was Born With A Congenital Hernia Of The Diaphragm
My granddaughter; Imogen, who is not coeliac, was born with a congenital hernia of the diaphragm.
Imogen was operated on within a couple of days at the Royal London Hospital and recently celebrated her twenty-first birthday. She hopes to go to University in the Autumn.
By chance, in my volunteering at the William Harvey Centre, I met one of the nurses, who had looked after Imogen twenty years ago. She told me, that they had given her no chance of survival. Miracles do happen!
The Early Death Of My Son
Imogen’s father was my son George, who like our other two sons refused to get tested for coeliac disease, after I was diagnosed in 1997.
This is recommended by the NHS and this page on their web site says this.
First-degree relatives of people with coeliac disease should be tested.
George died of pancreatic cancer in 2010. I wrote about George’s death in The Death Of My Son George.
Would he still be alive, if he had been diagnosed as the coeliac, I believe he was and had followed a more healthy lifestyle?
My Stroke
Like my father I had a serious stroke.
Mine was in 2011, whilst I was on holiday in Hong Kong.
Doctors, say I made a remarkable recovery.
Could this be because I am coeliac and Addenbrooke’s prescribed three-monthly B12 injections, which I still have?
In the United States B12 injections are used for stroke recovery. But not in the UK!
My Cataracts
Ceoliacs can suffer from cataracts. I had mine removed in 2022.
My Gallstones
Ceoliacs can suffer from gallstones. I had mine removed in 2022.
No Female Born Into My Father’s Male Line Has Ever Successfully Had A Child Since 1800
Even my sister, who was born in 1950, never had a child.
Other Coeliacs
I used to monitor an on-line forum for coeliacs and I’ve heard so many strange tales and pain caused by coeliac disease.
Conclusion
My life would have been so different, if I had been tested for coeliac disease as a child.
Coeliac Journey Through Covid-19 – Long Covid
Long Covid
In Should Those With Long Covid Be Checked For Coeliac Disease?, I wrote this.
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.
Unfortunately, my medical records from before 1969 have been lost.
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.
Coeliac Journey Through Covid-19 – Oxford And Cambridge Compared
Oxford And Cambridge Compared
In May 2020, I had been looking at the statistics of the two cities and the country around them and found that the numbers of Covid-19 cases were twice as high in Oxford, when related to population.
In Oxford And Cambridge Compared On COVID-19, I give my reasons for why Cambridge has lower levels of Covid-19.
Consider.
- Both cities and surrounding counties have a similar character.
- Both have well-respected hospitals, medical schools and medical research.
- Air pollution appears to be low in both areas.
- Both cities probably have a similar ethnic mix and large student populations.
As I used to live near Cambridge, I have my own mad personal theory.
Addenbrooke’s Hospital
I have used several hospitals in my life, but only two changed my life totally.
- I had my vasectomy in the old Hackney Hospital.
- Addenbrooke’s, who with a simple blood test decided I was probably coeliac.
So perhaps, I’m biased.
But consider these possible facts.
- My coeliac consultant at Addenbrooke’s told me, that he had more patients with the disease than any other in the UK.
- The manager at Carluccio’s in Cambridge, told me that they sold more gluten-free food, than any other restaurant in the group.
- In 1997, I was diagnosed fast, because Addenbrooke’s were using a new genetic test. I was later checked using an endoscopy.
Could it be that someone at Addenbrooke’s had decided they wanted to find all the coeliacs in and around Cambridge?
What would be the effects of diagnosing as many coeliacs as you could find in an area?
- A doctor of my acquaintance talked of coeliac disease as the many-headed hydra, as it led to so many other medical problems. So extra diagnosed coeliacs might improve health statistics in an area.
- Personally, I have said good-bye to migraines, nail-biting and lots of joint pains, after going gluten-free.
- I also haven’t had a serious dose of flu since diagnosis. Since 2005, I’ve probably had the flu jab.
- Joe West at Nottingham University, has shown that coeliacs on a gluten-free diet have lower cancer rates than the general population.
Consider.
- Immunotherapy is a medical technique, where the patient’s immune system is activated or suppressed to help them fight a disease.
- Coeliac disease is an autoimmune disease, where gluten causes damage to the gut.
So could coeliacs on a gluten-free diet have a more powerful immune system?
Undiagnosed Coeliacs
Coeliac disease is genetic, with mine coming from an Ashkenazi Jewish ancestor from Konigsberg in the Baltic.
- Other roots of coeliac disease are Irish, Italian and black people, who have slaves as ancestors.
- There was no test for coeliac disease in children until 1960.
- There was no genetic test for coeliac disease until the late 1990s.
- Research has shown that coeliacs are at least 1-in-100 of the UK population, but could be higher.
- The NHS quotes the 1-in-100 figure on this web page, which also says reported cases of coeliac disease are higher in women than men.
If coeliacs on a gluten-free diet have a good immune system, do undiagnosed coeliacs have a poorer one?
Oxford And Cambridge Compared
Is the large number of diagnosed coeliacs around Cambridge, the reason the area has a lower COVID-19 rate than Oxford?
Conclusion
What do I know?
I’m just a mad engineer and mathematician with coeliac disease.
Coeliac Journey Through Covid-19 – Thoughts On Leicestershire
Thoughts On Leicestershire
In High Risk Of Coeliac Disease In Punjabis. Epidemiological Study In The South Asian And European Populations Of Leicestershire, I wrote a section entitled Cases Of Covid-19 In Leicestershire, where I said this.
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!
Coeliac Journey Through Covid-19 – Keeping Calm And Carrying On
Keeping Calm And Carrying On
I decided that this was the best action to take.
- Coeliac-UK were still not giving any specific advice.
- Lockdowns didn’t bother me!
- During the pandemic, I didn’t have one food item or takeaway meal delivered.
- In March 2020, I wrote Carry On Blogging, which details how I was carrying on.
Throughout 2020 my blog posts on Covid-19 were only a trickle for much of the year.
These are some other thoughts.
Lockdowns
Lockdowns didn’t bother me, although as a Graduate Control Engineer, I’m against them in principle.
If you’re trying to control a complex system, you don’t use bang-bang control, where you switch something on and off.
Try riding a bike, by only steering hard-left and hard-right.
Interviewing Coeliacs
Coeliac disease must be the one condition, where you regularly meet others with the same condition as you shop.
So every time, I go shopping for gluten-free products and I meet someone in the Free From aisle, I try to get a conversation going.
I must have met nearly a hundred coeliacs in the last four years and I have yet to find one that has suffered a serious dose of Covid-19.
Conclusion
Admittedly, my research has been rather haphazard and random, but my findings generally follows the pattern of the Padua research I wrote about in Risk of COVID-19 In Celiac Disease Patients.
This is the paper on the US National Library of Medicine, which is from the University of Padua in Italy.
This is an extract from the paper.
Among the 171 patients included in our registry and on gluten free diet from at least six months, we contacted 138 CeD subjects (80.7%), aged 41.3 years old (SD 14.9), 73.9% were females on a gluten-free diet from a mean of 6.6 years (SD 6.0). Two patients had a diagnosis of refractory celiac disease type one and one of refractory celiac disease type 2. Among them, none reported to have been diagnosed with COVID-19, whereas 19 CeD patients experienced flu-like symptoms with 1 of them having undergone a negative naso-pharyngeal swab.
Their study certainly gave me confidence to carry on until the vaccines arrived.
Coeliac Journey Through Covid-19 – The Elderly And Covid-19
The Elderly And Covid-19
Note that this page is an updated version of A Thought On Deaths Of The Elderly From Covid-19, which I wrote in April 2020.
The main update concern dates and ages.
It has been shown, that a lot of the deaths from Covid-19 are over seventy.
I am seventy-five and a coeliac, which was diagnosed when I was fifty in 1997.
As my GP practice nurse said at the time of my diagnosis, as we read my doctors notes together, the signs are there of coeliac disease in a lot of my earlier visits to a doctor.
So why wasn’t I diagnosed earlier?
- There wasn’t a test for young children until 1960, so my early bad health couldn’t be diagnosed.
- No clue as to my problems was obtained until an elderly but extremely competent locum decided that my blood should be analysed as a fiftieth birthday present. I had no B12 and was running on empty.
- Eventually, I was sent to Addenbrooke’s and I was diagnosed by a blood test. I suspect it was a trial of a new genetic test, as I got the result by post in two days.
How many undiagnosed coeliacs are there in those over seventy, who because they are coeliacs, have a compromised immune system?
I would be undiagnosed but for that elderly locum!
How many other coeliacs were there in the UK population in 2020?
- Age UK had a figure of twelve million who were over 65 in the UK.
- If 1-in-100, as stated by Coeliac UK and the NHS, in the UK are coeliac, that is 120,000 coeliacs over 65.
- The NHS quotes the 1-in-100 figure on this web page, which also says reported cases of coeliac disease are higher in women than men.
Note that as of 2020, 177,388 have been diagnosed with Covid-19.
Conclusion
Many of those 120,000 coeliacs will have been born before 1960 and have a high probability of not having been diagnosed, for the simple reason, that a childhood test for coeliac disease didn’t exist.
Will these undiagnosed coeliacs have a compromised immune system, that makes them more susceptible to Covid-19?
It has been said, that a good immune system helps you fight Covid-19! From my personal experience of living fifty years as an undiagnosed coeliac and over twenty-three years after diagnosis, that my immune system is now a lot stronger.
A full statistical calculation of the elderly and Covid-19 needs to be done.
Coeliac Journey Through Covid-19 – Three Peer-Reviewed Papers
Three Peer-Reviewed Papers
As the pandemic took hold, I was spending more time looking for peer-reviewed papers concerning coeliacs and Covid-19.
By mid-2020, because of the lockdown in Leicester, the large numbers of deaths of South Indian medical staff in London and the situation in India, I had increased the number of searches to include papers about coeliac disease in India.
These three posts on my blog all have the same title as peer-reviewed papers I have found.
Risk of COVID-19 In Celiac Disease Patients
Coeliac Disease: Can We Avert The Impending Epidemic In India?
Coeliac Journey Through Covid-19 – Did I Have A Close Brush With Covid-19?
Did I Have A Close Brush With Covid-19?
In January 2020, I went between Liverpool and Sheffield on a ramshackle train formed of several one-car trains.
At Manchester Piccadilly station, the train filled up with a large number of Chinese students, who’d recently arrived at Manchester Airport and were returning to university at Sheffield and possibly other universities in the East Midlands.
The students were happy and laughing, but no-one would have complained about them, as everybody would probably have reacted in the same way, after just arriving in a strange country at their age.
But there must have been twenty taking most of the available seats in my carriage. I shared a table with three!
At the time, Covid-19 had hardly started to invade the UK, with most cases starting in March.
But, after hearing someone’s story on the radio yesterday, I wonder about the health of those students.
I certainly, didn’t catch Covid-19 seriously after that train journey and haven’t had the virus since to my knowledge. But thinking back I may have felt slightly unwell with a possible temperature the next day.
Coeliac Journey Through Covid-19 – Posts To Make You Think
Posts To Make You Think
Should Those With Long Covid Be Checked For Coeliac Disease?
Why A Lucky Few May Help The Rest Of Us Beat Disease
Coeliac Disease And Atrial Fibrillation
Why Do More Elderly Men Die Of The Covids Than Women?
Covid Leaves Wave Of Wearied Souls In Pandemic’s Wake
AstraZeneca May Explain Britain’s Lower Death Rate
Infection, Mortality And Severity Of Covid-19 In Coeliac Disease – Prof Jonas Ludvigsson
Voters In Trump Counties Far More Likely To Die Of Covid
Hay Fever, Coeliac Disease And The AstraZeneca Covid-19 Vaccine
My INR Readings Before And After My Second AstraZeneca Jab
Blood Clot Risk Eight Times Higher From Covid Than AstraZeneca Vaccine, Study Finds
Blood Clots In Young German Ladies After AstraZeneca Vaccine
Long Covid And Coeliac Disease
A Slight Problem With Covid-19 Vaccination
Should Coeliacs On A Long-Term Gluten-Free Diet Have The Pfizer Or AstraZeneca Vaccine?
Two More Life-Saving Covid Drugs Discovered
My Advice To Coeliacs On A Gluten-Free Diet Concerning The Covids
Did I Have A Close Brush With Covid-19?
Risk of COVID-19 In Celiac Disease Patients
Covid: Genes Hold Clues To Why Some People Get Severely Ill
Any Politician Who Advocates A Circuit Breaker Is Ignoring The Dynamics
Why The Covids Are Worse In The North
Is The NHS The Cause Of The Rise In The Covids?
A Curious Link Between Pancreatic Cancer And COVID-19
Thoughts On COVID-19 On Merseyside
Care Homes In England Had Greatest Increase In Excess Deaths At Height Of The COVID-19 Pandemic
Should The NHS Adopt A Whack-A-Coeliac Policy?
Coeliac Disease: Can We Avert The Impending Epidemic In India?
Dexamethasone Declared First Drug To Save Lives Of Coronavirus Patients
Oxford And Cambridge Compared On COVID-19
Thoughts On Coeliacs And COVID-19
What Happened In Hackney On Friday?
A Thought On Deaths Of The Elderly From Covid-19
Coeliac Journey Through Covid-19 – Worried About Covid-19
Worried About Covid-19
I think like many others, I was worried about the pandemic when it started.
These are a few of my thoughts and actions.
Attitude To The Internet
I have been an avid reader of the Internet since it started.
But as someone, who has worked with serious researchers off and on for fifty years, I like to think that I know fake news or untrustworthy research when I see it.
I am also in the lucky position, that if I have an advanced question about say DNA, I generally know someone I can ask, with my connections at universities.
I’ve also been used by my cardiologist friend, as an example patient in a couple of his lectures.
Being Coeliac
I was quite worried about whether being coeliac would count against me in the pandemic.
Coeliac UK were not much help and their advice seemed to be along the line of Keep Calm and Carry On!
The Ultra-Orthodox Jewish Community On Stamford Hill
It must have been in 2019, when I was asked by my GP, if I had been vaccinated against measles.
I said no, but I did have a bad case at about twenty-five, which I recounted in A Surprising Question From A Doctor.
He said fine and then added that there’s a measles epidemic in the North of the borough.
Apparently, the ultra-Orthodox Jews have a low level of vaccination and a lot of children.
This worried me, as will they bother to get the vaccine for Covid-19.
They should listen to the eminently sensible Chief Rabbi.
So in the end I just kept calm and carried on!
The Anonymous Widower 