This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi
is anyone out there living on the Best Bet diet? - no milk, no dairy, no gluten, no legumes, very low saturated fat?
I am on a modified form of it - I got ELISA food intolerance test done and I showed up as being intolerant of gluten, milk, eggs and slightly intolerant of soy and lentils.
I eat some soy and lentils occasionally. I am also finding I'm "breaking out" from the diet more frequently recently , eating cheese etc. It's so difficult, I do feel better on the diet but it's really strict.
WW

hi no sorry, as far as all the gluteny deal goes, i only cut out what i know i'm sensitive to and that's oats. i had skin patch tests done years ago and i didn't react to anything else. however i'm about to go on the anti-candida regimen again which i think has a lot of overlap with best bet. i didn't stick with it long enough and my problems like the rash are getting worse again, so, back to fish and vegetables for me :S it's horrible i love everything that's food for candida - carbs, vinegar, mmm pickles and cheeeeeese.....sigh chocolaaate...... boo hoo hoo! ah well, i think having functioning nerves again might be worth the sacrifices... but ya it's tough to stick with these things isn't it!!

Hi
it is hard

Actually I am a coeliac so gluteny stuff was out anyway. I find dairy and eggs hard to cut out but the funny thing was I was told I was allergic to them as a child, but gradually my parents reintroduced them into my diet when I was younger as I seemed to be less allergic.

I think your anti-candida diet sounds even worse than mine!!! Hope your rash clears up soon
WW

ya fortunately i like fish and veggies lol but it gets boring and fish is ridiculously expensive here!! ah well. thanks i will get rid of these damned beasties in short order. i've been pussyfooting around with it for too long!!

Jimmy you should get tested every 2 years or there about as your sensitivities can change that often.

For John I removed him form all sensitive foods as well as allergens as they would be toxic to HIS system. (Exp smoking-caffeine-aspartame etc)You need to listen to your body and you need to know it's every reaction. Sounds hard but if you listen your own body holds all the answers. Tapping on wood and I hate putting this in writing as the jinx aspect frightens me but since we have changed Johns diet his restless leg has gone over a year now as well as eczema and all other numbness. Had no seasonal allergies this spring and that's from a guy that used to take needles weekly for it. He still has his optic neuritis in one eye but even it has improved in the last year. As of today he can make out smaller objects like fingers and such but still can't see me stick out my tongue.

_________________
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.

Hi WW

I have followed the BBB diet for 10 years now and am all the better for it. I commend you for adopting it and encourage you to perservere. I truly feel it is worth the "sacrifice".

I first revised my diet while I was awaiting my ELISA results and soon started to feel better. Suspecting a placebo effect, my test results came back and showed a high sensitivity to to all of the big five (gluten, dairy, legumes eggs and legumes.

After straying from the diet once, I soon had an exacerbation and that was all I needed for motivation to comply. I reasoned too that my improvements were not attributable to the placebo effct. After a decade on this routine, I have no yearning for any of the off limit foods which used to be my staples.

Cheers
Nick

Hi there,
I've been trying to follow a version of the best bet diet. I have eliminated wheat, gluten, legumes and dairy. There is one exception which is milk chocolate (which I KNOW is forbidden) but a girl needs a treat now and again. I have done this over an 18 month period.
One word of advice is try &and introduce it all gradually. That way I learnt what to have to compensate and then move on to cutting more out. I know there's no scientific proof on this one but personally I have felt so much better. I won't tell people to try it but just say that it has helped me-not only have I not had a relapse since starting it but I feel it helps countersthe MS lethargy and I have also lost 16lb which restores some of the self esteem MS deprived me of.
Muu

Hi Nick and Muu
thanks for your posts.
Nick, 10 years - that's amazing. I admire your perseverance. I am finding it tough to stick to the diet for long and find I am breaking out by eating cheese or milk chocolate about once a month. Even at that I am so much better than I was before. I am determined to stick to the diet rigidly after September.

Muu, I also feel much better, energy much imrpoved. I recently had my first relapse in 2 years but that in itself is a vast improvement on how I used to be.

WW

WW

I comply quite faithfully to the diet because I was in such dire straits with respect to my health. Your situation might not demand such extreme obedience and an accentuation of the protective factors (e.g. vitamin D and omega 3 essential fatty acids) should allow you to partake in the odd indulgence.

Over time I suspect you will come to recognise how you do and don't react to your regimen and any dietary indiscretions and will act accordingly. Good fortune in your pursuit of well being.

Cheers
Nick

Testing the Effectiveness of the Best Bet Diet for Decreasing Disease Activity in Multiple Sclerosis

Introduction – Direct-MS is very pleased to be funding a rigorous clinical trial which will test the effectiveness of the Direct-MS recommended nutritional strategies, often referred to as the Best Bet Diet for MS (BBD), for affecting MS disease activity. Such research is of critical importance for determining if the recommended nutritional strategies are of value for MS and thus worth serious consideration as a therapeutic option. Recruitment for the trial began in July, 2006 and it is hoped that results will be available early in 2008.

Leaders – The chief investigator of the clinical research is Dr Jonathan O’Riordan, Consultant Neurologist and Director of Tayside MS Regional Service and Research Unit, Ninewells Hospital, Dundee, Scotland.
The principle investigator and study doctor is Dr. Pushkar S. Shah, Registrar and Research Fellow, MS Research Unit, Dept. of Neurology, Ninewells Hospital, Dundee. The MS Research Coordinator is Mrs. Sally Wilson also of Ninewells Hospital.

Ethics – The study has been approved by the Ethics Board of Ninewells Hospital. It will be conducted in accordance the European Clinical Trials Directive and associated guidelines, the International Conference on Harmonization Guidelines on Good Clinical Practice and the Principles of the Declaration of Helsinki, as well as all other national and local laws and regulations.

Goal – The main goal of the study is to compare the effectiveness of the Best Bet Diet for MS (BBD) with that of the dietary advice provided by the MS Society of Britain for decreasing MS disease activity over one year of use.

Methods – The study will involve 30 participants, all of whom have relapsing-remitting MS and EDSS disability between 0 and 3.5. Fifteen participants will be randomly assigned to the BBD and the other 15 to the dietary advice of the MS Society.

The study will last one year and each participant will have an MRI scan at baseline, 2 months, 4 months, 6 months and at 1 year. The MRI scans will measure T1 and T2 lesions as well as brain volume.
The participants will also have a complete physical and neurological examination at baseline, 6 months and 1 year. At these times disability will be measured using the EDSS (Expanded Disability Status Scale) and MSFC (MS Functional Composite) scales.

At baseline and every 4 weeks the participants will complete questionnaires including a Fatigue Severity Scale (FSS), MS Quality of Life Inventory (MSQLI) and Patient Global Assessment (PGA).

Best Bet Diet Nutritional Protocol –
Eat fruits and vegetables for carbohydrates and micro-nutrients
Eat fish and skinless breast of chicken and turkey, for protein
Eat extra virgin olive oil for fats
Avoid all dairy, grains (except rice), legumes
Avoid all allergenic foods, which are identified by skin and ELISA tests.
Avoid all red meat and margarine

Supplements:
1. Grape seed extract 2 capsules/day
2. VitaminD3 2000 IU/day in summer and 4000 IU/day in winter
3. Calcium 1200 mg/day
4. Vitamin A 5000 IU/day
5. 10 grams salmon oil
6. Vitamin B-complex 50 mg/day
7. 500 mcg of B-12
8. 1 g of vitamin C
9. 400 IU of vitamin E
10. up to 750 mg of magnesium (a good Ca/Mg ratio is 2:1)
11. 25 mg of zinc
12. 1 mg of copper
13. 200 mcg of selenium
14. Manganese 20 mg/day
15. up to 5 g of evening primrose oil or borage oil
16. 4 capsules of acidophilus
17. 4 capsules of enzymes
18. 500 - 1000 mg of Lecithin.
19. Ginkgo biloba 120 mg/day
20. Co-enzyme Q10 60 mg/day.


MS Society of Britain Dietary Advice –
1. Five portions of fruit or vegetables everyday including one portion of dark green, leafy vegetables.
2. Use polyunsaturated margarine and oils such as sunflower oil or corn oil, instead of saturated fat such as lard and butter.
3. Grill, Bake, steam or poach food instead of frying.
4. Choose lean cuts of meat. Avoid sausages, pates and beefburgers, as they are often high in saturated fat.
5. Avoid too much saturated fat and hydrogenated vegetable oil in foods like pastry, cakes and chocolate.
6. Eat at least two portions of fish a week, one of which should be oily fish like mackerel, pilchards, salmon or sardines.
7. Use low fat dairy products such as skimmed milk, low-fat yoghurt or low fat cheeses.
8. Eat whole meal bread and whole grain cereals.
9. Drink six to eight cups of fluid daily (about 1.5 litres). Don’t rely on high-caffeine drinks, such as coffee, tea and cola.

Monitoring Dietary Compliance – The participants will complete food diaries every 3 months and, in-between the visits to the clinic, subjects will be given reminders via phone and letters. They will also have daily access to the research unit for dietary advice.

Results – The effects on MS disease activity after one year will be assessed through the measured changes in disability scores, brain volume and lesion load. An assessment of symptom control and quality of life will be obtained from the completed questionnaires. The various results from those participants on the BBD will be statistically compared with the results from those following the dietary advice of the MS Society to determine if the BBD has a measurable positive effect on MS disease activity.

Discussion – This clinical trial is basically a “Phase I/II” trial and will determine if the BBD has a measurable effect on MS disease activity and if such dietary research can be accomplished in a scientifically acceptable manner. If positive results are obtained, a larger trial, involving up to 100 participants in each arm, will be necessary to confirm the positive effect of the BBD and to allow a better assessment of the strength of that effect.

Cheers
Nick

What is the Elisa food intolerance test? Is it necessary to do that test?

hi it can't hurt, i don't think. as far as i understand it, the body reacts inappropriately to certain things. you do the test to ascertain which things. i hope to fix the inappropriate reaction for myself, but in the meantime avoidance seems to be a smart idea. incidentally since i last posted on this thread i had been off bread for a while coz of the candida but then i just had toast with a breakfast at a restaurant and my guts swelled up like a balloon it was quite a painful day! so i've been off bread again since. i don't know if it was a wheat reaction or just a candida feeding frenzy. time will tell i suppose, i'll try bread again after my diflucan treatment.

any time you wonder what something on here means, you can get a bit of instant grat off wikipedia, or at least that's something i've found very helpful. http://en.wikipedia.org/wiki/ELISA_test

Hi Jim/Jimmylegs
I did the Elisa test because I wanted to find out if I was intolerant to more foods than just the BBD list of banned foods.
As it turned out, I had intolerances to exactly the banned list for BBD, but also eggs.
As I child I was dx'd with milk/egg allergies, so maybe they never went away for me after all.

I also am a coeliac (only dx in my 30's), so I know that I cannot eat even the tiniest trace of gluten (wheat, barley, oats, rye).

Jimmylegs, funniliy enough, the title of this year's international coeliac awareness day was called "if bread makes you ill"....I would really advise you to get tested if you haven't already. You have to eat gluten before going for the test, otherwise it can turn up a false negative. Coeliac is very underdiagnosed, and some people have linked MS and coeliac see http://www.celiac.com/st_prod.html?p_pr ... 6466436.e2
However, my suspicion is that we are talking about genetic groups of susceptibility rather than any disease link....

WW

yikes well if i do that i'll make sure i don't have anything else planned for the rest of the day! guess i should start looking into it, thanks.

haha Jimmlegs!!!
Seriously though I would check it out, as my MS did improve a bit once I found out I was a coeliac and was on the diet a while. It made an enormous difference to my health.
Occasionally I meet people who I think "they're coeliac and they don't know it" - especially if they describe tiredness, joint pain, dry skin, gas, digestion problems...although it is different for everyone.
Good luck if you do go for the test.