Ulcerative Colitis – a mother’s experience
these days doctors are often taught that anecdote is not important in medicine – which is nonsense. If certain approaches clearly work, then they should be valued. Here is a first hand account of the experience of a mother who had a child suffering from Ulcerative Colitis; hopefully if you find yourself in a similar situation it will help you:
We first contacted George in March 2014. My daughter, who was diagnosed with ulcerative colitis in 2008 at the age of 8, was suffering very distressing and debilitating symptoms that seemed to be getting worse.
She had been on immuno-suppressants and anti-inflammatory drugs for 6 years with 3 courses of steroid treatment over that time when she had relapsed badly. Her consultant said that all she could offer my daughter were more steroids, another type of (more toxic) immuno-suppressant or the possibility of surgery. She also suggested we try a dairy-free diet which some people had found helpful though there was ‘no evidence to support it’. We had been experimenting with various diets for years, so we sensed that something more drastic than simply dairy-free was called for.
In our initial phone call, George suggested that we try the Specific Carbohydrate Diet outlined in Elaine Gottschall’s book: ‘Breaking the Vicious Cycle’. My daughter was so desperate that she agreed to try the diet. Luckily we found a website, scdlifestyle.com, which explained more lucidly than Gottschall how to start her diet, so we began with the Specific Carbohydrate Introductory Diet. This consisted of 3 days of mostly chicken broth, eggs, and plain minced beef patties, followed by the gradual introduction of new foods from the diet every few days.
On the first day of the introductory diet, the improvement was dramatic. Although it took about 6 months for her to be completely free of symptoms, from day one onwards the bleeding and other distressing symptoms stopped.
A week into the diet she had her first session with George who started treating her with Chinese herbs which she has continued to take ever since.
The diet is a real challenge, especially for a 14 year old. You cannot eat any complex carbohydrates (no disaccharides or polysaccharides) so no wheat, rice, oats, potatoes, milk, sugar etc. You eat a lot of meat, meat stocks, fish, eggs, nuts and vegetables. Butter and some hard cheeses are allowed as are homemade yoghurt and crème fraiche which have been fermented for 24 hours so that all the lactose has been digested (I bought a great yoghurt maker which I would recommend).
My daughter found the diet so hard that we tweaked it in consultation with George, so after a month or so, she re-introduced white rice. We were able to get hold of white rice noodles and white rice flour and that has made the diet sustainable for her. She also has a small amount of lactose-free milk.
It has felt like a miracle to watch her return to a healthy weight and have the energy to conduct a ‘normal’ adolescent life. Admittedly her diet is not at all normal, and it requires immense discipline and courage on her part to stick to it when her peers are eating crisps and pizza around her. But at least she doesn’t have to deal with rushing to the toilet continuously and feeling so debilitated.
She has even managed a few breaks from the diet for a few days at a time, for school trips etc, and has suffered no ill-effects. We have also introduced sourdough rye bread in the last few weeks which has been ok so far.
In December 2014, in consultation with George, she came off her immuno-suppressants and 8 weeks later her anti-inflammatory drugs. Thus far she has remained healthy. It is the first time in 6 years that she has not been on medication.
I am immensely grateful to George, his herbs, to Elaine Gottschall and her diet. We don’t know what the future holds and we don’t take anything for granted.
The basic premise of the diet is that complex carbohydrates are hard to digest and leave a residue in the gut on which unhelpful bacteria feed leading to all sorts of problems, ulceration etc. So by removing the complex carbohydrates, the unhelpful bacteria gradually die off (and you get flu-like symptoms for 3 days at the start of the diet while they die off).
We are a family of five and we have had to change our eating habits considerably. It can be a real challenge to think of meals that fit the diet and that everyone will eat and I do spend quite a lot of time cooking, making meat stocks and yoghurt and so on. But, with some adjustment, it really is possible, and every time I see my daughter looking healthy and getting on with her life, there is absolutely no question in my mind that it is worth the effort.
If you have a child in a similar situation and would like any information or tips about the diet, do contact me at firstname.lastname@example.org.