17 Frequently Asked Questions and Answers
These are short answers compiled from emails and our previous blog entries. If you scroll through our website blogs you will find more information on the following topics.
1) What exactly is MS?
The symptoms come at first in fits and starts (relapsing-remitting), followed by constant degeneration (secondary) or as primary progressive. The damage is thought to be caused by activated immune cells passing through the blood-brain barrier into the central nervous system (CNS). In the CNS, there are two distinct disease pathways; myelin (the fatty sheath protecting the nerve cells) and the underlying nerve cells are attacked causing inflammation and damage (sclerosis), but the other pathway of axonal apoptosis (long nerve cells that act like the fiber optic cords die) for no apparent reason more determines the disability. The nerve damage/destruction prevents proper message conduction and symptoms result. The disease process overwhelms the body’s ability to heal and repair making MS a degenerative disease.
2) What is the MS Diet?
The first step is to stop eating the trigger foods that activate the disease process. Reduce intake of saturated fats- keep to less than 15 grams per day- and sugar in great quantities. There are 5 food groups to which people with MS are found to be most often sensitive. These are gluten-containing grains and wheat, dairy, eggs, legumes and yeast. Each person has a unique food sensitivity profile, which can include foods not among the usual suspects. Digestive tract health is crucial so use caution or cease to use: tobacco, caffeine, NSAIDS (aspirin, Tylenol), antibiotics, antacids, and alcohol as they can be damaging to the digestive system.
It is very important to be well nourished with nutrient dense foods. The following will help to heal the digestive system (leaky gut) and speed recovery: lean protein, vegetables/fruits, foods rich in antioxidants, raw foods for enzyme support, and probiotics. Drink plenty of water; get sunshine (vitamin D), and exercise. As time goes on you can reclaim movement, sensations, your cognitive abilities, and full energy.
3) How can the diet be implemented simply?
The initial healing will be with ups and downs. The return of abilities is fragile at first and setbacks happen easily due to stress, fatigue, illness. Don’t be discouraged. Keep following the diet. When subtle changes in symptoms can be discerned, you can begin testing foods to see if they are triggers for you. As you continue to progress, you will refine and individualize the diet for your healing. Begin to exercise more as your healing becomes more solid and permanent.
For the best healing make sure you eat enough nutrient dense food with an emphasis on protein and vegetables. Keep stress to a minimum. Remember that sleep and rest are treatments. When you have a return of energy or abilities, don’t overdo it. You still need to use your body’s energy continue to heal.
4) For whom will it work?
How quickly improvements are seen is highly variable. The road is bumpy, but if you stick with it and listen to your body, you will heal and recover. Most people return to full functioning with no lingering symptoms after a few years. It takes time, persistence, patience and determination.
5) What about testing for food sensitivities?
To have this test done, you need a health care practitioner, alternative or conventional, contact a testing lab like the Meridan Valley Clinical Laboratory, 515 Harrison Street, Kent, Washington 98032, or any other lab that offers this test. They will send a kit to your health care professional who then draws a blood sample and mixes it as directed by the lab and sends it back. The results will come to your professional. The test is not too expensive, probably now around $200. You will still need to refine for yourself what foods you can and cannot ingest.
Note: For folks in the UK: The ELISA test is York6 in UK, not available on NHS, and costs around £200 private. It is usually covered by medical insurance.
6) How does the diet work if you are a vegetarian?
You might need to become a vegetarian in your mind, but not your body. Eating fish and poultry might become necessary if you cannot digest most legumes properly. After you have recovered sufficiently on the diet (at least 6 months to a year), you might be able to eat a small amount of soy and goat dairy products without having a negative reaction or rotating and moderating foods might allow you to eat some of the foods that you could not before. The immune system may stop finding those foods objectionable after enough time has elapsed.
7) Please discuss legumes.
Another factor that is cited is that all of these foods are relatively recent to the human diet, being introduced since agriculture began about 10,000 years ago in the Middle East. Interestingly, it wasn’t until about 6,000 years ago that agriculture reached northern Europe, like Scandinavia, where the incidence of MS is very high.
All of these named culprits seem to be also troublesome in other diseases and often named as allergens. Peanuts, a legume, are well known as a potentially deadly allergen. Wheat and legumes, in particular, contain substances known as lectins, proteins that are often hard for us to digest and often to some degree toxic to us. It is thought that these substances have to key to the receptors on the cells of the blood-brain barrier as well as the endothelial cells of the gut, essentially allowing them access to the blood stream where they may activate the immune cells and then the central nervous system where the immune cells wreak their havoc.
There is so much that isn’t known—obviously not all foods, even in one category like the legumes, are created equal or cause equal problems in MS.
From the science and theory, let’s go to how this applies to the MS recovery diet. Legumes are not troublesome to everyone; on the list they seem to rank below fat, wheat, dairy, eggs and sugar. However, they are triggers to many people. As you work with the diet and your body, you should be able to tell fairly soon if legumes are a problem for you. If they aren’t one of your triggers go ahead and eat them, but use some judgment on how often and how much.
8) Can stress result in symptoms?
9) How do you know if recent flare-ups are due to incorrectly following the MS diet or stress?
Check to see if you recently experienced changes or distress in any of the following areas- Relationships: Jobs: Money: Children: Sudden Crises with Self/Friends/Family: Time Management. There are, of course, other areas, but those are typical focuses for worry, anxiety, anger and depression.
The MS diet works at optimal efficiency when we eat well, rest well, exercise well, and relax well. Stress makes it difficult to stick to the Recovery Diet but that is when our bodies most need the right foods. Use the diet as a stabilizing force in the midst of turmoil. Remind yourself of the gains you have made and try not to focus on the temporary setbacks that life's stress-makers might be causing you right now. Find support where you can, and know that when the stressful issues resolve themselves, your body will be ready to get back to healing and repairing on the MS Recovery Diet once again.
10) I started the diet and now I feel worse? Is the diet not working?
If you have had spastic (overly tight) musculature keeping you upright and ambulatory, those same muscles may now release and lose their tone and become weaker for a while (too loose). That actually is a good sign and means that healing those neuromuscular connections can now begin. We have also heard from those same concerned folks that then their symptoms shifted in a positive direction- and we certainly hope it will be the same for you.
11) At first I recovered, but now I am as bad as ever. What is that about?
Though we can’t answer specifically to your situation, let us give some examples of what has happened in some cases. One woman wrote that she had made 80% recover in her legs, then had a bad infection for which she took antibiotics for a month. After that she was as bad as ever. What happened? In this case, recovery was very slow to start in the first place because of the time it took to heal her digestive system, which in her case is very reactive and easily damaged. The MS cycle had begun again, so she needed to re-heal her digestive system to get recovery going again.
If you are experiencing a set back, analyze what you are doing with the food, rest and stress.
12) Do I have to exercise while doing the diet?
If you are in a wheelchair, you want to transfer more easily and ultimately stand up and get walking again. If you walk with an aid, you want to leave it behind you. If you still tire rapidly you want to increase your stamina and endurance.
13) Do I really have to keep resting, when I feel like I don’t do anything already?
Ann recently discovered some finer points to finishing her recovery that she hadn't considered before, namely getting her best and healthiest movement patterns back. Since she can walk just fine, it never occurred to her that her walk, which had changed during her MS years, had stayed that way because of muscle memory. What brought this to her attention was her proclivity to repeatedly sprain her ankle. You can imagine her upset that after successfully fighting MS, she was hobbling about due to a sprained ankle.
She is now retraining her walk and gait--undoing the tendency to flat-footedness that she acquired during her MS years, retraining her left foot to roll and push off as she walks. It has been really quite exhilarating to rediscover and may save her future problems with hips, knees and ankles. We suspect this kind of problem goes beyond MS, as injuries and weight gain or loss causes us to change how we move.
15) How can I more easily do the diet? I don’t get to the store very often and have little energy to cook.
Also consider that if you have someone who can help you cook just once a month, they could help you roast whole chickens and turkey breasts, and then cut up meal-sized portions to put in your freezer for you. A pot of cooked rice lasts for a week. Apples and citrus fruits may not last for a whole month in the fridge but they will if they are fresh enough. Frozen fruit slices are also available in most grocery stores. These days, vegetables and fruits are bagged and fresh frozen or canned on site and may often contain more digestible nutrients then foods that are picked green and then shipped long distances so that they ‘appear’ to be ripe by the time you buy them. No one need forgo the benefits of the diet if they can shop wisely.
16) What are the pitfalls in beginning the diet?
The next common mistake is to not watch how much saturated fat you are ingesting. This can be challenging since fat is everywhere. The healthy oils all contain a gram or two, nuts are full of saturated fats, and they are plentiful in chips. Even what can look like healthy, baked chips are not advised on this diet, at least in the beginning of eating this way. When any oil is heated to a high degree it changes chemical composition. It is best to keep the amount of saturated fat to under 15 grams a day, which is very little considering it is found in such a wide variety of foods.
Some people have recovered from MS by just cutting their saturated fat-- that is how important it is to watch your intake. Sugar is also ubiquitous and needs to be watched for many people. Fructose, glucose, and sucrose are all sugars and their effect is cumulative.
Above all, listen to your own body. None of us are alike and our paths to healing reflect this.
Fats play an important role in the MS Recovery Diet. The recommendation is to limit saturated fat intake to less than 15 grams a day and then to ingest between 4-10 teaspoons of the healthy oils daily. (Swank) The question naturally follows; exactly what are these fats and oils?
The term, saturated, comes from the type of chemical bond that exists between atoms that make up the fat molecule and the number of hydrogen atoms in it. In MS, saturated fat molecules form emboli in the microcirculatory system that can damage the blood-brain barrier. (Swank) It is hard to avoid saturated fats totally since they are found in small amounts in even the healthiest oils. This needs to be taken into account as you develop your diet.
Transfat is the result of processing oils by adding hydrogen to it. Food labels will often list "hydrogenated oil" as the ingredient; it is transfat. Many margarines as well as processed foods contain transfat as it keeps better than the other types of fats and oil. Transfats should be avoided not only because of MS, but for general health. There is a move to ban them from the human diet because of their harmful effects on health.
The best source of monounsaturated fat are canola oil, olives and olive oil, sesame seeds, pumpkin seeds, caashews, macadamia nuts, hazelnuts, pistachios, and pine nuts. These are beneficial foods.
Polyunsaturated fats (aka PUFAs-polyunsaturated fatty acids or essential fatty acids) can be broken down further into two categories; Omega 3s and Omega 6s. In the modern diet, it is hard to maintain the healthy ratio of 1:4, Omega 3: Omega 6.
These oils are liquid at room temperature and even under refrigeration. They are some of the building blocks for cell walls, nerves and myelin, all crucial to MS recovery. These oils easily oxidize and become rancid so they need to be refrigerated. Also, read the label for what temperatures they can tolerate for cooking purposes.
Omega 3s are found in fish, especially cold, deep ocean white fish, salmon, sardines, tuna, flax seed and flax seed oil, walnuts and walnut oil.
Omega 6s are found in most vegetable oils like corn, safflower, sunflower, soy. To keep closer to the recommended 1:4 ratio with the Omega 3s, mix in the other monosaturated oils in your cooking.
To follow the MS Recovery Diet simply substitute a healthy oil wherever you previously used a saturated fat. It works very well and can make a big difference in your recovery.
Gluten is to be avoided until you find out if you are reactive to it. Spelt flour contains gluten! It is used in our book in some recipes because many people can tolerate its’ low gluten content. Others of you may not tolerate any gluten at all, so all of the spelt flour recipes should be avoided until you discern your trigger foods.
Oatmeal has been determined by the Celiac Foundation to contain no gluten. However, some people do react to oatmeal’s sticky nature as if it were glutinous. If you suspect gluten is a problem for you and if you want to be strict on this diet in the beginning- avoid oatmeal! Then you will not be taking a chance on it triggering symptoms for you.
Rice does not contain gluten. However, white rice especially can be problematic for some people with MS. Until you know that rice is not a problem for you, keep a careful watch on your symptoms when you eat rice in the beginning of the diet. Wild rice is a distant cousin to rice and can usually be well tolerated. Also try soaking the rice grains for up to an hour and then rinsing them before you cook them- you may need to shorten the simmering cook time by 10-15 minutes. This may also help to make rice more digestible for you.
Dairy is problematic because of its protein molecules- not because it is lactose free or skim or has low fat content. The proteins in goat, sheep and water buffalo products can be tolerated more easily than in cow dairy products by some people with MS. Until you are sure that dairy is not a trigger for you- avoid all dairy no matter what form.
Eggs can be bought from organically fed, free-range chickens or other poultry and still they are high on the list to be avoided when starting out on the diet. It is the protein molecules in the whites and the yolks that are the problem, not how healthy the chickens are. Until you know that eggs are not a problem for you, avoid all whites and yolks. See the question on vegetarianism if this is an issue for you.