Having said that though, as of the 12th of May 2012 (update: 2nd of October and still going strong), I am completely symptom free, gaining weight and feeling better than I have in over a year and I attribute this solely to undertaking a lactose-free diet. I will explain why in some detail below, but first a small amount of background to give some context.
I have so far received no official medical treatment of any kind for my Crohn's disease, mostly due to appointments constantly being cancelled, often delayed for periods of up to six weeks. Given that almost six months had passed since first going to the doctor, and with no treatment of any kind in sight, I was left to my own devices to manage the illness.
I first came across the idea of a lactose-free diet when I chanced upon a small website http://www.cureforcrohns.co.uk/ run by Mandy Boylett, which first introduced me to the idea and much of the information I relate here is taken from or inspired by the information on this site, so if you want to ditch this blog and read that site instead I won't blame you. I'll give a basic run down of some of the science behind the idea and also why I believe this idea has not been researched or discussed.
I'm not a scientist but if I was, this would be my vague hypothesis. For certain genetically predisposed people, the presence of MAP (Mycobacterium avium paratuberculosis) bacteria in the digestive system causes the immune system to go into overdrive attacking areas of the digestive system where the bacteria may be present such as the stomach and colon. This causes damage to the otherwise healthy digestive system resulting in what we know as Crohn's disease. Simple.
|Crohn was one of the first people to identify|
the disease for which he is named.
So, if a type of bacteria is the root of the problem, how can we solve it and what does this have to do with a lactose free diet? If the above hypothesis is true, then in theory, Crohn's could be solved or at least limited by removing the MAP bacteria from the digestive system, but how can we do this? MAP originates from cows and there is much evidence that it can travel through cows milk and thus enter the human body. Boylett hypothesises that the MAP bacteria survive by eating lactose, which seems entirely plausible. Lactose is a sugar; a common form of sustenance for different kinds of bacteria. This also explains why the MAP bacteria exists so prevalently in lactose-heavy cow's milk and why the bacteria is able to persist in the digestive system for long periods of time; most modern diets contain large amounts of lactose.
This is where the lactose-free diet comes in. In theory, if their food source is removed, the bacteria will be unable to survive in the digestive system and should quickly disappear; the damage being done to the digestive system should grind to a halt, effectively stopping Crohn's disease.
I hasten to add that much of this is speculation and this theory has not been definitively proved. However removing lactose is working excellently for me and others, so I really do believe there is something to this. However, more research definitely needs to be done to fully assess this link. So, why isn't it being done?
One would think that if a disease as serious as Crohn's could be solved by something as simple as changing your diet, it would be a well known form of treatment, but obviously this doesn't seem to be the case. In looking for why this is, we need to look at the economics of the situation and examine the major players involved.
1. The Dairy Industry
The dairy industry has steadfastly refused to acknowledge any responsibility for propagating the disease. Judith Bryans, director of the dairy industry lobbyist group The Dairy Council, claimed that "There is no need for anyone to alter their consumption of milk based on current scientific knowledge" which is awfully convenient for her and the industry. She also cast aspersions on the link between MAP bacteria and Crohn's by stating that "it is important to stress that not all Crohn's patients have MAP in their intestines" which is funny, because research from the VA Medical Center consistently isolated MAP "from 100% of patients with Crohn's disease". No seriously, all of them! One hundred percent!
The Dairy Industry has repeatedly hidden behind the lack of concrete evidence for the link, using the lack of conclusive research as an excuse not to try attempt further research, creating an infuriating tautology and perpetuating the status quo. Not that we should be too surprised by this; the dairy industry stands to gain nothing from establishing a link and stands to lose huge amounts if their product were to become linked to a serious, life-long disease. Dairy is a huge industry, and from a business perspective, maintaining the status quo clearly trumps propagating such information, in spite of the human cost.
2. The Pharmaceutical Industry
As free-market advocates are quick to remind us, many treatments, medicines and cures have their origin in private sector pharmaceutical companies creating drugs to be sold at profit to individuals or government healthcare initiatives like the NHS. In terms of money and power, such groups dominate modern medical research, whilst government funded research tends to be confined to a scattering of universities. Now I do not seek to turn this post into a debate on the merits of private vs public healthcare or anything like that, I will simply analyse how a business, dealing in pharmaceuticals, would likely approach this issue from a business perspective.
Currently, patients with Crohn's disease represent the ideal customer for the pharmaceutical industry for a number of reasons. Firstly, the disease is a life-long condition which only rarely kills those it afflicts meaning that any drugs used in treatment will be required for the rest of the patient's life. This, combined with the fact that Crohn's most commonly occurs at a young age (teens to early twenties) means that the industry can expect a the patient-customer to require their products for fifty or sixty years! Compared to other illnesses, such as the flu, where a patient may require drug-based treatment for only a couple months or even weeks, Crohn's disease is an incredibly economically viable disease simply because of it insures a perverse form of customer loyalty that lasts a lifetime.
Crohn's also manifests a wide variety of painful and debilitating symptoms that require a wide variety of expensive drugs to treat and limit. Corticosteroids (budesonide, prednisolone, prednisone) or aminosalicylates (sulfasalazine) to limit inflammation, immunosuppressants (mercaptopurine, azathioprine) to limit the damage done by your immune system, antiobiotics to prevent internal ulcers becoming infected and a whole host of painkillers ranging from paracetemol to morphine to fight the pain the illness causes. It may seem cynical, but there's clearly a lot of money to be made in traditional drugs-based treatment of Crohn's disease, so it makes sense that such companies would want to maintain the status quo. However, what money is there to be made in advocating of a lactose-free diet? Even if such companies did come across evidence that Crohn's could be cured drug-free with a simple dietary change, the most economically sound thing to do would be to conceal such information to prevent the loss of customers and revenue - something they are legally obliged to do, on behalf of their shareholders. As with the dairy industry, the pharmaceutical industry has nothing to gain and much to lose from this information.
While the industry should be lauded for providing treatment for Crohn's patients in the past, it's worth remembering that such drugs come with their own range of painful and crippling side effects. Using Corticosteroids can cause depression, suicidal thoughts, insomnia, bone thinning, cataracts and increased likelihood of infections to name but a few. Immunosuppressants also increase the probability of serious infections whilst also causing headaches, nausea, vomiting and fatigue.
3. The Government
The other major player in the game of Crohn's is the government. Unlike the pharmaceutical or dairy industry, governments have no financial incentive to not advocate lactose-free diets. In countries such as the UK where much healthcare is provided by the government, they'd be even keener to spread such information and thus save tax payer money not having to buy expensive medicines whilst also helping their citizens. So why hasn't this happened? Well, as I've stated before, the link remains unproven and governments simply don't have the same resources that private companies do to establish a connection. Milk is one of the most widely consumed drinks in the world and most governments wouldn't most likely wouldn't want to create a panic regarding something they weren't sure about, as this could prove politically embarrassing if it then turned out they were wrong.
Industrial lobbyists are also an incredibly powerful force in modern politics and both the dairy and pharmaceutical industries have their fair share, ready to quash potentially damaging (to them) ideas when they come up.
It's also possible that many government's simply aren't aware of the connection. Crohn's in not a widely known disease and as a health problem, there's very little voter demand for it to be addressed, especially when compared to other diseases, such as breast cancer and heart disease, which command a great deal of public attention and concern. Without a widespread scientific consensus or public demand, governments are unlikely to take risks or spend time or money dealing with a problem it most likely barely even registers.
If you're a Crohn's sufferer, I hope what I've said will persuade you to at least try a lactose-free diet. It's really not that hard to adjust to - lactose free butter, milk, cheese and even chocolate are available at many supermarkets. If you don't have Crohn's, but know someone who does, giving them this information would be great. If you have any questions, feedback or experiences you want to share feel free to leave a comment and I'll continue to update this post if and when new information becomes available.