Health professionals are often not discussing the importance of following national dietary guidelines with their multiple sclerosis (MS) patients, causing them to turn to other sources like the internet that may advise potentially harmful diets with serious consequences, according to an Australian study.
The study, “Dietary responses to a multiple sclerosis diagnosis: a qualitative study,” was published in the European Journal of Clinical Nutrition.
MS is an immune disorder that has no cure yet, and there is limited evidence to support the benefits of a particular therapeutic diet to manage MS symptoms or progression. Nonetheless, national dietary guidelines recommend patients follow a healthy diet.
In Australia, however, only a small percentage of adults actually follow the guidelines, according to a 2011–12 National Nutrition Survey.
Studies have estimated that up to 42% of MS patients make dietary changes after receiving a diagnosis. However, what these changes entail and whether they are in line with recommendations is not clear. Some patients even decide to follow alternative therapeutic diets that claim to help regulate the inflammatory response associated with the disease.
It would be beneficial for researchers to determine how MS patients respond to dietary advice at the time of diagnosis, and the type of advice needed to help guide these individuals.
To help answer these questions, Australian researchers set out to investigate the experiences of recently diagnosed MS patients living in Western Australia regarding their diet.
Researchers conducted semi-structured interviews with 11 adults with MS focused on responses to diet since their diagnosis. They noted three key themes that emerged from these responses.
First, there appeared to be a lack of general dietary advice at the time of diagnosis. Patients recalled that, when they were first diagnosed, there was little discussion regarding their diet. If patients did receive dietary advice, it was found to be either vague or not specific enough to MS.
The second theme that emerged was one of extensive personal research and information-seeking due to a lack of guidance offered at the time of diagnosis. Patients turned to a whole range of sources including the internet, friends, family, other MS patients, chiropractors, and naturopaths. However, they rarely mentioned MS organizations or dietitians.
The third theme that emerged was that of self-experimentation with diet to control MS symptoms. In an effort to either relieve symptoms or halt disease progression, patients often turned to diets they found online, including those generally thought to reduce the inflammatory response.
Unfortunately, these diets were described as being costly and causing a feeling of social isolation due to difficulty in following the diet — particularly on social excursions with family or peers.
Two patients in the group were following a special diet instead of taking medication, because they believed strict adherence to diet therapy would help reverse symptoms, prevent future relapses, or reverse the damage from prior relapses.
“We found that there was a lack of generalised dietary advice for people just diagnosed. In light of this, people with MS conducted their own extensive research or self-experimented with diet to either control their MS symptoms or to cure MS,” Rebecca Russell, the study’s first author and a student at the School of Public Health at Curtin University in Australia, said in a press release.
The team emphasized that there is a need to improve access to diet education for MS patients to help counteract the amount of misinformation on the internet.
“Given the seriousness of the disease, there is a perceived gap in dietary information provided at the time of diagnosis. Healthcare professionals should address concerns with alternative therapeutic diets advertised to treat or cure MS, and clearly convey the reasoning for the general healthy dietary recommendations,” the researchers wrote in the study.
According to the team, more information regarding therapeutic diets to manage MS is needed, and healthcare professionals should take the time to give their patients relevant and current advice on diet.
“Our findings may be of interest to healthcare professionals who can fill this apparent void and address concerns with alternative therapeutic diets advertised to treat or cure MS,” said Andrea Begley, co-author of the study and a senior lecturer at Curtin’s School of Public Health.
Neurologists are not trained in nutrition and in general do not seem too interested in the gut-brain axis, microbiome changes based on dietary intake and the use of prebiotics and probiotics. Seems to me that they do not discuss diet because they have not done the research themselves or have not received training.
Thank you for this post. I have been following a ketogenic diet for over a year now in an effort to reduce inflammation and provide sustained energy levels. This diet is costly due to the ingredients, and, as mentioned in the post, contributes to social isolation as you cannot “cheat” – you are either in or out of ketosis. Though I feel on some levels I feel better on it with low carbs and no sugar to sap my energy, I would love for some medical experts to weigh in as to the effectiveness of any diet in respect to MS. I have RRMS.
I’ve had two neurologists who said that diet doesn’t matter.
My son’s primary physician as well as his neurologist were absolutely
antagonistic to any dietary issues. I hd to push to get his primary dr.
to agree to have his d levels tested on regular basis.
The neurologist was total disinterested in any tho g that was not a MS med despite the success or side effects of the medication.
When you have MS you are basically on your own to research and try as you can to find the best lifestyle for living with Multiple Sclerosis.
Pat Schoen
( mother of MS patient * years)
I have just found out not only do I have RMRL but I have stage 3 kidney failure. my blood counts are low and I am always fatigued. I have been trying my best to eat clean. That is really difficult and I can do it for a few days and then I have to have some whole grain bread.I have tried Paleo but all of them have there ups and downs.
My Neurologists told me in her words “if you can grow it, kill it and grill it, caught but don’t fry it, and if it falls from the sky” in all stay away from processed foods. Simple food that doesn’t have to be altered. No bread or Dairy.
I have RRMS and have tried a few diets to reduce symptoms. The most effective by far was the Overcoming MS (OMS) diet. I take vitamins (especially vitamin D) and probiotics, lots of healthy greens and fish. No dairy. And while my neurologist was not a fan – the MRI results over two years have shown that my brain is! I’ve had only minor relapses, (I also increase flaxseed oil if I feel like it’s coming on which reduces inflamation). I have had only 1 new lesion in two years…
I don’t know if it works for everyone, but managing my diet has been a good move for me personally.
Also – to reduce stress: massage, exercise and meditation are good.
Good luck everyone x
What is a “therapeutic diet to manage MS”?