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  • Maura

    eunicebediako wrote:

    Hi Everyone, I have been diagnosed for only a year and have tried it all from Gluten Free, to only eating fruits and vegetables. Nothing can has changed but made more tired and weak. Can I get any suggestions or ideas.

     

    Thanks,

    Eunice Bediako

    Denise Nowack, RD:

    Without knowing specific information about what (and how much) you’re eating, my first question would be whether your diet is providing the nutrition you needs to fuel your body. The weakness and fatigue you’re experiencing may be related to not ingesting enough calories or missing nutrients that are important in energy metabolism.

    If fatigue goes unmanaged it can result in a decrease in appetite, activity, and less interest in food preparation. There may be an interrelationship between your diet and fatigue. This can be somewhat of a vicious circle. Fatigue can be a contributor to poor nutritional status. Pay attention to your eating habits when you’re tired. Do you skip meals when you’re feeling tired? 

    Your eating habits can also contribute to being fatigued by depriving you of the energy and essential vitamins and minerals your body needs to function effectively.  Food is the fuel; so missing meals can compromise your energy levels and in turn be a contributor to fatigue.  For some, healthy snacks that act like mini-meals is one way to make eating more manageable and keep energy levels high.

    If fatigue has made it difficult to meet your daily nutritional needs, you may find that your diet may be low in certain nutrients that could compound the problem.  One consequence of these deficiencies can be anemia or “tired blood.”  See if the following areas of your diet could use a boost!

    Low Iron: Iron is an important part of hemoglobin, which carries oxygen in your blood.  Anemia can be a common problem if you don’t get enough iron. Find it in your diet from:

    • Foods from animals—“Heme iron”—the most absorbable form of iron in your diet—comes from animal sources.  Usually, the deeper the red color of the meat, the higher the iron content.
    • Foods from plants –provide another source of iron called “Non-heme iron.”  It can be found in good amounts in fortified breakfast cereals, pumpkin seeds, bran, spinach, beans and prune juice.  You can help your body absorb iron from non-heme sources by consuming them with a source of vitamin C or heme iron foods

    Low Vitamin B6: Vitamin B6 or pyridoxine helps in the production of hemoglobin.  Too little B6 can also result in anemia. Find B6 in your diet from chicken, fish, pork, liver and kidney.  It can also be found in reasonable amounts in whole grains, nuts and legumes.

    Low Folic Acid & Low B12: Folic acid works with Vitamin B12 to make red blood cells. Find folic acid in your diet from fortified grains including cereals, breads, and pasta, and also in dark, green leafy vegetables, and citrus fruits (like oranges). Find B12 in your diet from meat, fish, poultry, eggs, and dairy foods.   Animal products are the key source to Vitamin B12.  It can also be found to a lesser extent in fortified foods.  (Note:  Vitamin B12 is often touted to be beneficial for those with MS, it is best to have a physician test for B12 deficiency before exploring B12 supplementation.)

    Low Protein: Too little protein in the diet can also cause anemia and weaken your immune system. Aim to include 1 gram of protein in your diet for every kilogram of body weight. Find protein in your diet from lean cuts of meat, fish, poultry, eggs as well as lowfat or nonfat dairy products.  Plant sources of protein can be found in tofu, beans, peas, lentils, nuts and seeds.

    I would also recommend that you share this information with your doctor if you haven’t yet done so, to rule out other factors that may be contributing to your fatigue and weakness. 


     

  • optica7
    Having worked in the food service industry for most of my life in both commercial and institutional facilities, the last one being a long term seniors home, I have come to understand that food not only provides physical sustenance but also a crucial psychological support. More often than not, to an individual or group isolated by remote location, prison or familial concern, meals and meal times are the one constant that creates order and allows a reasonable expectation of the short term future. Hope, if you will. That being said, the expectation of something familiar to be eaten based on the history of the individual or group is crucial. To have a drastic change in fare is comparable to no meal whether it be nutritionally sound or not. The modification of diet is a slow process of becoming familiar to the new tastes and textures, cooking and purchasing regiments. These are points usually overlooked by the patented diet plans put forth to an already shaken MS victim trying live day to day with some normalcy. Diet modifications need to be able to first address what the individual has on hand, what and when they eat. First regulate time, then substitutions of items and eventually dropping the more harmful items slowly. The overwhelming amount of "healthy" foods put forth is daunting and quite frankly questionable. Who really eats quinoia? Who can afford it? In my opinion, to start with something like a good breakfast that can ensure a healthy bowel movement on a regular basis can not be overstated. Who among us hasn't suffered through extended periods of constipation? With seniors an old recipe called BAP has been used in hospitals and extended care facilities for years. Bran, Apple sauce, Prunes blended into a puree. This has slowly been slowly moved aside, no pun intended, for a half teaspoon of ground flax seed sprinkled over a breakfast cereal with very good results. And let's not under estimate the simple pleasures of the occasional piece of cake or a fried egg. Sometimes the psychological benefits of something so friendly far out weigh the dietary task master. Cheers Jim
  • ispeir

    My experiences are similar to many of those posted. I cannot tolerate barley or soy.  I tried going totally gluten free, but the real culprits are processed foods, and rice.  So I use whole grains as much as possible.  I eat a low fat diet, and struggle every day with my personal nemesis...processed sugar.  I focus on only certain organic foods..peaches, grapes, to keep costs in line.

    i work on portion control and focus on more vegetables and fruits.  Exercise is a challenge, but I do my best.  Every day is an adventure!

  • AquaGoddess

    Because of the nature of most #MS diagnoses--that is, the high proportion that are RRMS--it is difficult to determine whether or not the changes one makes are having the impact on symptoms and disease progression, or whether it is just a longer period between relapses.

    i've made some changes that have been quite worthwhile over the past 2-3 years, including ramping up exercise, working to get my weight under control through joining Weight Watchers, and moving away from processed and preservative-laden foods.  Through eating as close to nature as possible, controling portion sizes, and being much more active, I've been able to realize some fabulous outcomes, including losing half my body weight (I was morbidly obese), gaining more strength and endurance, and helping to control many of the symptoms associated with my #MS.

    I've not, however, stopped my DMT, and I don't tout what i've done as possible cures for #MS, as i realize that I am getting healthier in many ways that help my body, which lessens the amount of stress on it, which can reduce the impact of #MS overall.

    What I'm doing is caring for myself as I should have been doing all along, and I'm getting/seeing results from that care.

    So, whole foods, plant forward meals, lean, clean protein, healthy fats, complex carbohydrates, and high fiber are staples in my diet, and I'm beginning to reintroduce Greek yogurt (high protein and calcium) just this week, are the ways in which I eat for health and wellness. i also supplement with whole foods vitamins and minerals to ensure that I'm getting nutrients that may not be present in conventionally grown produce as I move toward finding organic sources that are sustainable throughout the year.

    Love this discussion!

  • lags121

    I am heart. Failure,GERD'S , and now I have Gout. How do I manage a diet??

  • y2sami
    I started the Swank diet recently and was amazed at the difference in myself. After a bout of severe symptoms and months of pain I just thought its worth a go... I didn't like the idea of no red meat as I loved it but it went well. What's the difference between the two diets?
  • MarlaL

    I am newly diagnosed.  I have been gluten free for eight years.  It appears that gluten was and is the cause of severe acid reflux.  I think I ate a healthy diet until hypoglycemia seemed to be part of my problems of the past four years...turns out that I have MS.  Now, I'm not sure what to eat. My vegie packed diet fills me up and if eating carbs is necessary for the hypoglycemia I don't have room for the other stuff.  I'm sort of lost.  Do I go back to my former eating habits and sort out the hypoglycemia some other way or....?

  • JN917

     was gluten free for 11 years before I received a diagnosis of MS this year.  It is clear to me that being strict in my adherance to a gluten free diet really delayed the severity and complexity of the MS related symptoms (I had several un-diagnosed exacerbations prior to going gluten free in 2002).  Changing my diet back then was life-changing and transformative.  When I received the MS diagnosis, I immediately began the Wahls Protocol in March of this year and once again, I have experienced life-changing transformation for the better.  The Wahls Protocol provides a valuable framework for the healing and restoration of my mitochondria and it guides my daily eating as I maintain a daily log/diary.  I feel amazing yet again!  I don't cheat and I don't miss anything really b/c when I accidentally consume something that is not part of the Wahls protocol or even something that my body reacts to, I can't function.  My walking is compromised, I can't focus and I feel awful.  But then, the symptoms dissapate as the reaction wears off and I can regain my footing.  I have chosen to sacrifice the pleasures of processed food and receive the benefit of whole foods and preparing my and my family's food.  It has been one of the absolute best life decisions I have ever had the privilege of making.

  • ireneg

    I have just purchased a device to turn tap water into ionized water.  This water is supposed to provide better brain hydration.  Since I have been drinking the water, I feel better and my body is behaving with regulaarity--a good thing.  This feeling better could  be a functionin of spending money and wanting results.  I wonder if anyone can speak to the advantages or disadvantages of drinking ionized water as it pertains to MS or any other neurological difficulties--y husband has been diagnosed with Lewy Body Disease.  LBD makes my MS look like a walk in the park

  • 1toughcookie

    Portion control is major! I've lost 17 lbs doing that & paying attn to what I'm eating. If I want to snack, I try to go for a low-fat option. There's no perfect diet for MS, it's what works for you. (That's what my neuro told me) my triglycerides alone went from 226 to 155 in 3 mths & like I said, I'm not on a diet. What has helped me A LOT is writing down everything I eat daily. When you're aware of what you're doing, it really makes a difference. I do want to know though, is a Mediterranean diet different from a paleo one & which one would be better to lean towards for MS?

  • Maura

    1toughcookie wrote:

    Portion control is major! I've lost 17 lbs doing that & paying attn to what I'm eating. If I want to snack, I try to go for a low-fat option. There's no perfect diet for MS, it's what works for you. (That's what my neuro told me) my triglycerides alone went from 226 to 155 in 3 mths & like I said, I'm not on a diet. What has helped me A LOT is writing down everything I eat daily. When you're aware of what you're doing, it really makes a difference. I do want to know though, is a Mediterranean diet different from a paleo one & which one would be better to lean towards for MS?

    Denise Nowack, RD:

    For many of us, eating is so routine. It’s easy to overlook what we’re putting into our mouths, especially if they are established habits. It’s only when we have a conscious awareness of what we’re eating that we see where we might be a little off track and where we can make changes. Keeping a food diary is a great way to accomplish this…and stay on track moving forward!

    Given the results you’re seeing, it sounds like your eating patterns are supporting overall wellbeing. I would recommend that you stay on track where you are. Whatever you’re doing, you seem to be doing well! If you’re concerned that you should be doing more, you may want to see a dietitian. 

     

  • hondo25

    As a Sports Nutrition specialist, I agree with a balanced approach: macronutrients should be consumed dependent upon your individual activity level.  Diet and nutrition is riddled with 'fad diets' which are responsible for variable levels of success.  The 'paleo' diet, 'caveman' diet, gluten free, etc. are all options that one can try.  However, none of these diets have been clinically tested for efficacy towards helping your MS (or my own).  There was a popular diet called the Stark MS diet where, if I remember correctly, it was shown to have no significant effect on new lesions or progression of disability - the accepted measure of treatment success.  The reality is that it is unclear if diet can significantly impact your MS - either positively or negatively.  However, one thing that I know for sure is that your body thrives when you establish consistency.  Spending 10 weeks on a low carbohydrate diet, then 10 weeks gluten free, then 10 weeks of junk food because 'I had too much going on' wreaks havoc on your system.  I follow a balanced diet that has been scientifically validated (not for MS): low-fat, low sugar, low sodium, the correct amount of protien, avoid dairy, drink lots of water, naturally occurring foods are best.  Avoid canned foods, frozen foods, etc.  Eat fresh foods consistently and your body will thank you. 

    We all need to push harder for more nutrition MS research.  Think positive.  We all need it!

  • 3beej
    I drink a lot of diet soda. Is it dangerous for people with MS? Is it dangerous for everyone?
  • megatari

    If you are looking for information on diet and MS please google Terry Wahls. She is an MD with MS that is using to diet to manage her disease. Also check out the Paleo Approach book by Sarah Ballantyne, amazing information that has seriously benefitted my health and MS symptoms!

  • LizPont

    Since my diagnosis 7 years ago at 25, it's been a rollercoaster for me. First, I didn't pay attention at all to what I was eating. It was enough to deal with the medications and the fact that I now had an autoimmune disease. Over the years, my weight crept up (I've had weight issues my entire life).

    It wasn't until last December that I finally began seeing professionals to help me with my diet -- a registered dietician and a psychiatrist who could finally prescribe the right meds to deal with my anxiety/depression (and who believed me when I said I wasn't just too "lazy" to work hard enough to try to lose weight).

    Six months later, I'm looking at 60+ pounds lost and still losing. It's been through consistency, planning my day, and eating smaller, controlled portions of the foods I love, while discovering the wonders of foods I'd never tried before. When I wake up, I know exactly how many "servings" of every food group I'm going to have that day, where I can "cheat" (fruits & veggies), and where I'm likely to be tripped up (if there's a party, I better save up my carbs!). That's what is working for me so far, and I'm going to keep going with it. FWIW, my last few MRIs have shown no new lesion activity. Is this because of diet? Or because I religiously take my meds? I'm betting the meds, but that's just me.

  • magpiemary

    I've read countless articles and books and remain convinced that the key is the Wahls Protocol, specificslly Paleo Plus. I bought dessicated liver pills because I just couldn't do the organ meats.

     

    Right now, after my relapse two weeks ago, due, I now know, to my fallback on chocolate and honey, I am putting my body into nutritional ketosis for healing.

    And I did due diligence by undertaking a round of iv steroids, but have yet to see results.

  • ernesto21
    Diagnosed in November of last year...need help on finding great diet.
  • littleblue

    I have had MS for twenty years and have been very fortunate. I am following the Wahl's protocol and am feeling better. My doctor noticed the improvement, but he did not attribute the improvement to the diet. Neither did he say it was not due to the diet. Anyway, my problem is that I have always been very thin, and I lose weight with the diet. I can't afford to do that. I know I feel better, including my digestion, when I don't eat bread. Does anyone have any suggestions on how to maintain and gain weight when following the Paleo principles?

    thanks

     

  • carinadolci

    I STOPPED EATING GLUTEN AND GRAINS (BECAUSE ALL GRAINS CONTAIN GLUTEN AND ALL GLUTEN IS BAD REGARDLESS OF THE FDA LABELED 'GLUTEN FREE' PRODUCTS) AND ALL OF MY MS SYMPTOMS WENT AWAY!  I no longer black out in the shower, have neuropathy, burning, pain, arthritis, joint pain, my skin doesnt feel like it's on fire, my restless leg syndrome went away and my stomach, digestive, and other problems all went away as well.  My cognitive function feels like I look through a new set of eyes and think with a new mind, my mental health has improved and my neurological disorders no longer affect me.  It's not hard to give up gluten and grains.  I am gluten, grain, dairy, soy, corn, and rice free (3 years traditional 'gluten free', 2 years grain, soy, corn, rice free, and 1 1/2 years dairy free) and i would NEVER EVER EVER go back to the pain I was in.  I can still eat delicious foods.  It's expensive but so are MS medications and how can you put a price on your health?  You don't know how bad you feel until the pain is gone.  I would never go back.  PaleOMG.com, glutenfreesociety.org, julianbakery.com, againstthegraingourmet.com are all great sites to help you and buy food.  SO Delicious has coconut milk ice cream grain soy and dairy free and you can recreate any other foods with healthy alternatives. 

  • eryncameron
    I was diagnosed in 2009, but my symptoms were very mild. I didn't have insurance, and I didn't end up seeking any treatment after my initial diagnosis. I wasn't eating very well, and I was overweight. About 2 months ago, I finally got serious about getting treatment and taking this seriously. One of the major changes I have made is in my diet. No wheat, no soy, no red meat, no dairy, no beans, no alcohol, no nightshade vegetables (eggplant especially makes my symptoms worse). Definitely no processed foods or sugars, nothing out of a box, no fast food. I eat a lot of chicken, fish and vegetables. It was not easy to start, and I still have days where I just want a big plate of fettuccine alfredo and a slice of cake. But here is the thing-- I feel great. I have more energy. I have lost 20 pounds so far. Other issues I've had for years that have I've never been able to fix (like acne) have gone away. I can't say for sure that my diet is helping to slow my progression, but I do know it's definitely not making my symptoms worse (like my diet was before).