Your Comments

From Ana on 29th July, 2009:

Hi Mandy and Sam

I read your with interest your hypothesis for the relationship between lactose and Crohn's. I think it's great you're gathering information and thinking with your own head rather than just blindly following doctors' orders.

Having said this, I am not particularly convinced about your hypothesis. It seems to hinge on the assumption that MAP feeds on lactose, and that you can starve it through a lactose-free diet. If MAP does survive on lactose, how would you explain that it causes Johne's disease in cattle? Adult cattle presumably are not being fed dairy products, so their own diet is likely to be lactose-free.

On the other hand, MAP is a slow-growth bacteria (hence being difficult to test for its presence, as it takes a few weeks to grow) in which case it seems unlikely that you would see it respond quickly to individual episodes of lactose ingestion.

I am wondering if Sam may have (on top of Chron's) lactose intolerance? This may also cause abdominal pain and diarrhoea and would be a simpler explanation as to why Sam reacts negatively to lactose. It seems lactose intolerance is a common problem in people with Crohn's (http://cat.inist.fr/?aModele=afficheN&cpsidt=13428226). Lactase pills (with the lactase enzyme, which digests lactose) may help people with lactose intolerance. But of course avoiding lactose in the diet sounds like an even better idea!

One way or the other I think you do very well to pay attention to the way Sam reacts to particular foods and try to adjust his diet accordingly.

Best wishes
Ana

My reply

Hi Ana,

Many thanks for your message.

I think the best way to test whether or not the MAP bacteria feeds on lactose would be (if this is possible) to isolate some MAP bacteria in a laboratory and divide them into several Petri dishes.

One group could just be fed water, another group a glucose solution, another group lactose, other groups other food sources? To see which group of MAP bacteria reproduced the most.

I feel a little "out of my depth" suggesting this as I don't know whether or not it is even possible to isolate the bacteria and feed them in a laboratory. However, if it is possible, then it would be straightforward enough to see what food source makes the bacteria thrive.

It typically starts in young calves (who presumably are infected by their mothers, either through faeces, milk or in utero) but symptoms are not seen until between 2 and 5 years later. I cannot hypothesise how the bacteria survives in cows once they are weened - if they were to survive by feeding on lactose in the human gut, perhaps they have some other way of surviving in a cow. http://www.cvmbs.colostate.edu/ilm/proinfo/cdn/96articles/JohnesNov96.pdf

Sam tells me his poo sample was tested for lactose intolerance and the result was negative. However, he has not had the H2 lactose breath testing referred to in the article you mention.

Of course, it could just be that lactose irritates Sam's gut in some way, and the removal of lactose stops the irritation that allows Crohn's disease to take hold. Sam remains in a drug free remission and given the current swine flu pandemic, I am relieved that he is not taking immunosuppressant drugs.

Kind regards,

Mandy

From Wendy on June 30th, 2009:

hi Ta for good advice Also zinc is supposed to help as it is healing for the stomach lining,and anti-inflamatory foods may help like cold water fish,leeks,black currrants,dark green veggies like kale .Hope this is of interest.

Also why do medical perscriptions have to contain lactose and would the small amounts contained still have an effect on the body? all the best

wendy

My reply

Hi Wendy,

My experience with Sam is that a very small amount of lactose does not affect him - for example, eating plain chocolate which although does not contain milk in the ingredients list, cannot be guaranteed milk free. It is not like an allergy. Having said that, I despair at the fact his steroid tablets were coated in lactose. It does seem somewhat counterproductive. I would have thought the manufacturers could coat their tablets in something else.

Mandy

From Rebecca on 10th May, 2009:

Hi Mandy, I followed your link from the Lactofree website. I think your site looks great and I think it's really brave of you and Sam to publish his story. It's hard to discuss bowel problems and it must be especially difficult for a teenage boy.

Thankfully, I don't suffer from Crohn's disease but have suffered from IBS (or what I thought was IBS) for many years. I've tried various elimination diets (wheat etc.) in the past but not dairy. I've now been on the lactose elimination diet for over a month now and have noticed improvements. Haven't reintroduced any lactose yet so will be interested to see what happens when I do!!

Good luck with your continuing research.
Rebecca

My reply

Hi Rebecca,

My niece is also lactose intolerant. Perhaps there is a genetic link between lactose intelorance and Crohn's disease, it could be that they share genetic markers that are yet to be discovered.

Mandy