Gastroenterology Symposium Session Four

The fourth session of the patient symposium was led by Dr R Howard from Birmingham, a clinical psychologist – and also mother to a coeliac teenager. It’s always nice to hear from people who understand the gluten free lifestyle at first hand!

She discussed the psycho-social issues around being diagnosed with a long-term condition, managing the diet, and dealing with undiagnosed symptoms. Here in the UK, it can take up to 13 years before getting a diagnosis, after numerous consultations. We were lucky that our family doctor considered coeliac disease from the outset. Not every doctor has this at the top of mind, because – as we all know – it can present in a wide range of different ways.

We need better diagnosis, for which we need a better education for our family doctors (who can’t, after all, know everything about everything: it wouldn’t be humanly possible). I was impressed to hear the third speaker (Professor Anderson) tell us that AstraZeneca put on a nationwide training programme on coeliac disease for GPs in Australia – and that 50% of family doctors (GPs) have done this training now.

Dr Howard discussed quality of life issues (QoL). Apparently, although there is initially a vast improvement in the quality of life in the first year after diagnosis – as reported by patients – after that, there is a steady decline in reported QoL in adults and adolescents aged 8-16, quite possibly due to poor self-management.

The issue appears to be that in some cases (especially for women) suffering a chronic condition increases anxiety and depression. Once diagnosed and on a gluten free diet, the level of anxiety decreases. However, if people find it difficult to maintain the diet, especially outside the home, then this can lead to increased anxiety, leading to the coeliac trap:

feeling unwell – diagnosis – gluten free diet – anxiety – poor self-management – feeling unwell …

Not surprisingly, parents of coeliacs also report increased anxiety, and a study found that children report more problems of distress and impact on their lives than parents are aware of. (Learning that could be the cause of even more parental anxiety!)

A key factor in achieving a good QoL is believing in one’s own ability to manage the diet. If you understand the issues and know how to manage the diet, you are likely to have a better QoL.

She suggested that counselling might help those people who struggle at managing the diet, in an attempt to break the cycle. If this is you, then don’t be shy of reporting this to your medical professionals; they may be able to help, and this might improve matters for you in the long term.

Gastroenterology Patient Symposium: Session Three

Would you accept a weekly injection if it meant you could eat a ‘normal’ diet?

The third session at the British Society of Gastroenterology Patient Symposium was the one that I found most interesting.

Professor Anderson is working on a treatment programme for coeliac disease.

How would it work?

His vision is of a desensitisation programme (one that ‘switches off’ the immune response to gluten) that would involve 3 injections a week for a month, then a weekly self-administered injection.

This wouldn’t be suitable for everyone, only for those with the appropriate genes. But discovering whether you have the ‘right’ genes is relatively straightforward via a blood test.

You’d also have to have a fully healed gut before starting, proved by endoscopy.

Once well into the programme, you’d need a repeat biopsy to confirm that it was working, and that you weren’t suffering from silent symptoms.

When might it happen?

After 7 years, Professor Anderson has ‘proof of concept’. He’s done pre-clinical tests, identified the 3 critical components of gluten, and has managed to switch off the immune response in mice.

He’s now in Phase 1, and is testing on 34 coeliacs with the appropriate gene, and has confirmed that he has correctly identified the toxic elements of gluten. The next study would be with over 100 people. If that were successful, then regulatory approval could be sought.

However, they need $15m for research and volunteers.

This doesn’t seem like such a vast sum to me. Yes, it is a huge lump sum, but surely not in terms of the amounts of money spent on pharmaceutical research in other areas.

Fascinatingly, his research so far has been part grant-funded, and part funded by gastroenterologists. How amazing is that! Gastroenterologists clearly see the need for this research.

So I wondered whether there’s an option for crowd-funding of this research. How many coeliacs are out there who would pay a small sum towards funding this research? How many would accept a weekly needle in exchange for a ‘normal’ diet?

There’s no guarantee that his research would result in a treatment programme, so it would be a gamble. But what do you think? Would you pay? Would you self-inject?

Gastroenterology Patient Symposium: Session Two

From my notes taken at the recent gastroenterology conference

Quotes from Proust, Nigel Slater and Laura Esquivel were not at all what I was expecting from a gastroenterology conference.

They were part of an interesting session on Food and Mood by Professor Nick Read, who talked about how food affects us all. Obviously food can affect health – we all know that from experience! And food can bring great pleasure. But Professor Read meant more than this: that food carries with it a great freight of memory and meaning, both at a cultural level, and at a personal or familial level.

He told us a story of a patient (A) who complained of an allergy to food. When he explored the start of the problem, it turned out that she’d gone out for a lovely meal with her boyfriend at their favourite fish restaurant. She expected him to propose marriage, given the setting, and given his announcement that there was something he wanted to talk to her about.

Instead he told her that he’d been having an affair with a colleague who was now pregnant, and so he wanted to break up with A.

She rushed outside and was violently sick.

Sionce then, she’d reacted in the same way every time she’d eaten fish – and the reaction had spread to other foods too. Her food issues were associated with grief.

Now, for those of you diagnosed with coeliac disease, this kind of emotional distress is clearly not the cause of the problem. Coeliac disease is a condition resulting from an actual physical condition, not an emotional one. Counselling won’t solve the problem – only a gluten free diet will do that. However, it is a story we all recognise. Food does indeed affect mood, and for those people with non-specific intolerances, such as IBS, the professor recommended reducing stress and anxiety, and keeping levels of fat and sugar low. Good advice for all of us!

While much of this session wasn’t directly relevant to me, I did take away this thought:

Don’t make food a stressful situation for your coeliac child. Dietary issues are stressful enough. If your child feels your stress and worry – for example at eating away from home, perhaps at a friends birthday party – it will raise their levels of stress, reduce their pleasure in eating and in the experience as a whole, and may cause some food-aversion in the future.

Keep it calm.

(I believe that Nick Read is speaking again at the Allergy Show in May – are you going?)

Gastroenterology Patient Symposium: Session One

From my notes taken at the recent gastroenterology conference… The first session was Professor Sanders, talking about food intolerance in daily life: any errors are mine, due to the speed of note-taking!

Did you know that the percentage of people reporting food intolerance in the UK is between 2 and 20%?

The top end of this is a surprisingly high figure, but covers a wide range of symptoms and underlying problems.

As an indicator of the rise in interest in food intolerance, Professor Sanders pointed to the rapid rise in the number of medical papers available on PubMed in each year:

  • 161 in 1970
  • 460 in 1980
  • 720 in 1990
  • 860 in 2000
  • 1601 in 2010

So there is a high level of interest within the medical profession, presumably because of the many people reporting problems, and the effect that these problems can have on the quality of life.

Professor Sanders spoke out strongly against some of the allergy-testing services available on the open market; he said that these can be very non-specific, and inaccurate, but that the most distressing part of the popularity of these tests is that patients pay for them out of desperation, because they have symptoms that are not being dealt with.

He made it clear that there are differences between disease, allergies and intolerances, but he also made it plain that he felt that intolerances should be dealt with and the symptoms treated, because this helps improve quality of life for patients:

  • disease: evidence of a physical problem
  • allergies: can be tested for
  • intolerance: can deal with symptoms

So, he suggested, no matter where you fall along this spectrum, don’t hesitate to ask for help. Even if all that can be done at the moment is to treat the symptoms of intolerance, that would help improve things on a day-to-day basis.

BSG Conference: The Patient Symposium

Last week I went to part of a gastroenterology conference: the symposium for patients.

This was organised by the British Society of Gastroenterology. I’ve never been to one before, and this was a particularly interesting experience. There were – literally – hundreds of medics around the conference centre, and about 60 people attending the patients seminar. Not all these were coeliacs, though Coeliac UK were there: some were Crohn’s sufferers, and others had IBS. Some (like me) weren’t patients at all, but were there out of interest, or representing a patient. I sat next to a dietician who was there as part of her professional development, which I was delighted to see. She told me that she’d been astonished to learn how variable the dietician service-offering was across the country. Where she’d worked, they had offered three-monthly checkups initially, until people got the hang of the gluten free diet, but in some places – as we know – people are offered much less than that.

I took copious notes, which I’ll try and decipher for you over the next few days, on each of these four topics:

  • Food intolerance in daily life: what’s it due to and what can you do about it?
    • Speaker was: Prof D S Sanders from Sheffield
  • Food and mood: how what you eat can change the way you feel
    • Speaker was: Prof N Read from London
  • Diagnostic and therapeutic challenges: coeliac disease as a cause of IBS symptoms and new approaches to treatment
    • Speaker was: Prof R Anderson from Melbourne, Australia
  • Psychosocial aspects of coeliac disease: can coeliac disease affect quality of life?
    • Speaker was: Dr R Howard from Birmingham

There was also a lively Q&A session at the end – and here my notes got very rough, but I’ll see what I can do!

I know I haven’t told you what I learnt yet, but I can tell you this: if you get the chance to go to one of these, take it. There was plenty of opportunity to ask questions, and the spearkers were clear, entertaining and informative.