Levodopa molecule

Levodopa and Protein – What About It?

Levodopa and Protein – What About It?

Kathrynne Holden, MS, RD (retired)

levodopa molecule
levodopa molecule.

 

What is levodopa?

 

Levodopa is a precursor of dopamine. First discovered in fava beans in the early 1900s, today levodopa is a mainstay in Parkinson treatment. Why? By the middle of the 1900s, scientists realized that neurons in the brain produced dopamine, which then guided the body’s movements. Later they found that in some people these neurons were gradually dying off, leading to dopamine deficiency and Parkinson’s disease. They could give dopamine by mouth, but it could not cross the blood-brain barrier, so it was useless if swallowed.

By 1961, however, research showed that levodopa – a precursor to dopamine – could cross the blood-brain barrier. Once there, the brain converted the levodopa to dopamine, where it treated the symptoms of PD – tremor, slowed movement, poor balance, shuffling gait. All were improved by use of levodopa. A few years later, scientists developed a pill form of levodopa to treat PD and it was hailed as a miracle.

It was and still is, the standard medication used to treat PD. It improved movement, balance, and walking ability; it decreased tremor, allowing people to continue their work and hobbies.

However, there were significant problems. Researchers soon learned that:

– its effects didn’t last long
– it caused severe nausea
– combining levodopa and protein was a problem – breakdown products of protein competed with levodopa for absorption from the small intestine.

Carbidopa molecule

After more research, scientists developed two compounds, carbidopa and benserazide, that, when combined with the levodopa, “protected” it to a large extent from competition with protein. So, in the mid-1970s, the pill was combined with carbidopa (in the United States) and benserazide (in Europe and other countries).

Since that time, new formulations continue to improve levodopa’s effectiveness. Sinemet CR is an extended-release form that can be taken with meals. Stalevo has an added COMT inhibitor that helps it last longer. Rytary (an extended-release form), Duodopa (delivery via pump directly into the small intestine), and Parcopa (does not need to be taken with water, it dissolves on the tongue) are some of the newer forms.

For some people, though, the levodopa and protein combination still can be a problem, even with the newer forms. Not everyone is protein-sensitive, especially in the early stages of PD. But some people are very sensitive to protein from the beginning of levodopa use; and for others, protein becomes more of a problem in later stages of PD. Let’s take a look at why this happens.

What exactly is protein?

Foods rich in protein
Foods rich in protein

Protein is a long strand of amino acids. Nine of these are called “essential amino acids.” They are essential for human life, because our liver cannot make them. Foods that contain the greatest amount of essential amino acids are animal foods – meat, poultry, fish, eggs, and dairy foods. These contain all the nine essential aminos needed for human life, and are called “complete protein.” Most plant foods contain some, but not all, of the essential aminos, and are called “incomplete protein.” However, combining different plant foods gives us complete protein. Eating a combination of legumes (beans, peas, lentils), grains, nuts and seeds will give us all the essential aminos needed for health.

Why is protein a concern for those using levodopa?

When we eat protein – meat, for example – the stomach grinds it up into tiny particles and sends it to the small intestine. Enzymes there break down the meat protein strands into their individual amino acids.

Twenty basic amino acids.
There are twenty standard amino acids.

Then, special carriers in the intestine attract the aminos and carry them across the intestinal wall to the bloodstream. There are different carriers for the different amino acids, and this is where the problem begins.

Levodopa is also broken down into individual molecules. The carriers for levodopa are the same as the carriers for the “large neutral amino acids” – leucine, isoleucine, valine, phenylalanine, tryptophan, tyrosine, methionine, histidine. The meat we ate contains a large number of these aminos, whereas a levodopa pill has a much smaller amount of levodopa molecules.

So, when you eat a hamburger at the same time as taking levodopa, the intestinal carriers receive an avalanche of large neutral aminos, but only a tiny amount of levodopa. The carriers can be swamped by all the aminos, so that the levodopa must wait its turn. And, because levodopa has a short lifespan, its useful life may be nearly over by the time it’s absorbed into the blood and arrives at the brain.

This is why the levodopa and protein combination can cause problems, and why many people need to take levodopa about 30 minutes before meals. It has a clear path through the stomach and out of the small intestine, before the aminos arrive.

Types of protein

Animal protein is often more of a concern than plant proteins, though not always. Each individual can be unusually sensitive to a particular protein. One person may be affected most by dark turkey meat, another by ham, another by beef, eggs or sausage.

There is one protein, however, that seems to block levodopa to a greater extent, and for a longer time than other types – milk protein.

Milk protein may block levodopa more severely than other proteins
Milk protein may block levodopa more severely than other proteins

Of all the people I’ve talked to in over twenty years of counseling, more people have named milk as the food that blocks levodopa absorption the most severely. Many say that if they have milk on their cereal in the morning, levodopa won’t work for the rest of the day. The protein in milk is especially rich in the large neutral amino acids, and this may be why it’s a greater concern.

What about the different kinds of milk?

Cows’ milk and milk from goats and sheep are the types of milk most often used. All three are high in large neutral aminos, although they have different proportions of each. It may be an individual matter whether one kind of milk affects a person more than another type.

Why are some people affected by protein more than others?

There is no perfect answer to this question. Some people are unaffected by any kind of protein, while others are sensitive to certain proteins, but not others. Still others have some degree of sensitivity to all kinds of protein. Why? We can only speculate. Perhaps some people have a higher number of intestinal carriers receptive to these aminos, and thus are not so sensitive to milk or other proteins blocking levodopa.

What’s the best way to manage levodopa and protein?

Many people experience nausea when they first start using levodopa. So at first, it’s best to take levodopa with food, either with a meal, or with some crackers and juice. Usually, our bodies adapt to the levodopa in a few weeks, and then most people can take their levodopa about 30 minutes before meals. If you find that protein in food doesn’t block levodopa, you can certainly take it with meals.

It’s also good to be aware, though, that PD can slow the movement – “peristalsis” – of the gastrointestinal tract. When the stomach’s peristalsis is slowed, food may remain there for an abnormally long time. A high-fat meal can take as long as four to six hours to exit the stomach. Any levodopa taken while the stomach is full of food will be unable to exit into the small intestine; the levodopa must wait until the stomach clears. This can cause “motor fluctuations” – periods of time when PD medications are not working. If this is the case, talk to your neurologist, or a dietitian who can help you plan lower-fat, smaller meals that clear the stomach quickly.

A last, scary, thought

One of the scariest questions I hear, over and over down through the years, is: “Can you give me a list of foods that contain protein so I can avoid them?”

Of course I could provide a list of foods with protein. But, because I’m a health professional, the answer must be ‘No.”

Such a list would be equivalent to a recipe for death. Protein is absolutely necessary for human life. Every day your body must build new cells – blood, skin, muscles (including the heart), hair, organs – and enzymes, such as the insulin you produce to store glucose from the food you eat.

You require about ½ gram of protein per pound (about 1 gram per kilogram) of body weight per day, to restore and repair these cells. Without protein, your body would begin to devour its own muscles and organs, a condition called “protein-energy malnutrition.”

Today’s medications are far improved over the early days of levodopa. Timing of levodopa and foods goes a long way toward eliminating or minimizing off times. If you have signs of gastroparesis (slowed stomach emptying), such as acid reflux, lack of appetite at normal meal times, feeling full after only a few bites of food, burping, or heartburn, ask your doctor to assess the possibility of gastroparesis, which can be treated.

You don’t need to overdo protein intake, which the western diet often does. You just need to eat enough protein to meet your daily needs, and time your levodopa so that it wins the race with protein to the small intestine.

If you have any questions or thoughts, put them in the “Comments” section on this page, and I’ll respond. I hope to hear from you.

Comments 58

  1. Nick B.
    January 8, 2017

    How about protein supplements like whey protein powder and similar products typically used when working out.

    I follow a pretty brutal workout regime to fight my PD and find that getting enough protein can be a challenge.

    1. khadmin
      January 9, 2017

      Good for you for choosing exercise to fight PD! Yes, you definitely need ample protein, and whey protein is a good source. Be aware, though, that whey is a concentrated source of three of the amino acids that compete with levodopa for absorption, particularly leucine. While this stimulates muscle protein synthesis, it may interfere with your Sinemet absorption. I would experiment cautiously; it may be necessary to take the whey protein well apart from levodopa, depending on your personal sensitivity to protein. Let us know how it works for you!

  2. Rob
    January 9, 2017

    Should someone with PD be eating large amounts of fava) broad beans?

    1. khadmin
      January 9, 2017

      Good question, Rob. Here is an article I wrote about fava beans that should help: https://nutritionucanlivewith.com/2016/06/fava-beans-levodopa-parkinsons-disease/
      Let me know if this did not answer your question.

  3. Ivor
    January 9, 2017

    I was wondering if the protein in milk products such as yoghurt and cheese are in the same category as milk?

    1. khadmin
      January 9, 2017

      The proteins are the same in yogurt – casein and whey; the milk sugars have been changed, but not the protein. .

      In cheesemaking, the whey is drawn off, so the remaining protein is largely caseins. There are some of the large neutral aminos – mainly alanine, glycine, valine, methionine, leucine and isoleucine.

      Some people find they can tolerate cheese better than milk, with regard to levodopa absorption; but this seems to be highly individual.

  4. Andrew
    January 9, 2017

    Thanks for the info. I wondered as to the reason for the LevaDopa/protein incompatibility, which I have noticed first-hand.

    1. khadmin
      January 9, 2017

      You’re very welcome, Andrew; and good for you for taking note of foods vs levodopa absorption. Diet can make a tremendous difference in motor fluctuations / off time, and you’re doing exactly the right thing in keeping track.

  5. Connie Swanson
    January 9, 2017

    Have you heard of the starch diet by Dr John a McDougall? I have PD and I’m considering doing this diet. What do you think?

  6. Karen Dean
    January 9, 2017

    Thank you KH for this detailed explanation.
    You do a wonderful job relaying the latest PD info.
    Thank you and HAPPY HEALTHY 2017.

    1. khadmin
      January 10, 2017

      Karen, you just made my day! I so appreciate your thoughts and kindness, and wish you a happy, healthy, and prosperous New Year!

  7. Lori
    January 14, 2017

    Thanks for sharing with with the RD community. Do you have any idea Kathryn about similar effects (diminished response) w Mirazipine (or Ropinerol) similar meds used for Restless Leg Syndrome?

    1. khadmin
      January 14, 2017

      Hi Lori, do you mean could protein be blocking absorption of mirtazapine and/or ropinerole? Protein should not have an effect on either medication. For restless leg, I would be certain the person has had complete testing for blood levels of iron; also would consider trying magnesium supplements if deficiency of Mg is a possibility.

  8. walaa
    January 24, 2017

    what about coconut oil?any benefit for Parkinson patients?

    1. khadmin
      January 25, 2017

      Hi — There is no research that is specific to PD; but virgin coconut oil appears to be heart-protective, and in animal studies, was protective against stress, which is very common in PD. It is a medium-chain triglyceride, which is metabolized differently than other types of saturated fats, and can be used directly for energy; it may be somewhat protective against Alzheimer’s disease, although there isn’t enough research to make any strong conclusions. However, it has been used for centuries in tropical countries as both food and medicine, believed to have antibacterial, antiviral, antioxidant, and immunostimulating properties. Used in moderation, it should be a fine addition to the daily diet.

  9. Jane
    January 28, 2017

    My husband takes sinemit every 2 hours during day. It is hard to get enough protein in diet since even small amounts affect his med absorption. Any suggestions? Jane

    1. khadmin
      January 29, 2017

      Hi Jane, this is a difficult situation for sure. First, has his neurologist discussed use of one of the longer-lasting forms of levodopa, such as Stalevo or Rytary? That would cut down on the number of times daily that he needed to take his levodopa, and make it easier to time his meals.

      Another thing that helps some people is use of “Liquid Sinemet.” Dissolving the sinemet makes it take effect much, much faster than swallowing the pill, so that meals can be eaten sooner. For the instructions on making liquid Sinemet, go to: http://www.parkinson.org/pd-library/books/medications

      You can order a copy of the booklet, or download the entire booklet as a pdf, or go to Appendix C page 73 and print out just the page with the “Formula for Liquid Sinemet.”

      Next, is the question – why does he need to take levodopa so often? Certainly this does happen as PD advances; but his doctor should also rule out:

      1) gastroparesis (slowed stomach emptying) which is very common in PD and makes food stay in the stomach longer than normal. This means that the next dose of levodopa cannot be absorbed, because it can’t pass by the food in the stomach. So motor complications occur, and the Sinemet is increased to compensate. But if gastroparesis is the problem, it can be managed by changing the diet.

      2) Prolonged constipation is also very common in PD, and can block levodopa absorption. If constipation lasts more than 3 days, ask his doctor about a laxative, such as Miralax, to relieve it. He may then find that his medications are more effective.

      Let me know if you have other questions, and my very best to you and your husband. -Kathrynne
      P.S. An article that might be of interest: Reconsidering Coenzyme Q10 in Parkinson’s Disease http://www.naturalmedicinejournal.com/journal/2016-02/reconsidering-coenzyme-q10-parkinsons-disease

      1. Richard Nelson
        February 15, 2018

        i have the same problem with 2 melting carbadopa/levadopa every two hours plus i take carbadopa cr 1 in morning with 2 at night.
        i recently came off a diet with 2 high protien smoothies per day. i did have more tremors with diet. only lost 12 lbs over 2 months. i also found that sugar is not good.
        i am not sure how much protien i’ m allowed. i weight 230 lbs and 5’8″.
        got any good diets. i work out about every day, but not strainious. 1 hr ball room dancing, once per week, play 9-18 holes a week (not from Nov. to Mar)., stationary bike and treadmill 3 times a week about 15 min. for each. back and stomach & back exercise 5 days per week (20 min.) i also sing at least 5 hours per week. i have a bad back so cant walk for more than a few minutes(except treadill)

        1. Kathrynne holden
          February 18, 2018

          Richard,, your exercise routine sounds excellent – a variety of workouts, which exercises different muscle groups, and helps get more blood and oxygen to the brain. I commend you on your very proactive stance.

          I am wondering if the reason you are taking levodopa every two hours could be that slowed stomach emptying is making it harder for meals to clear your stomach normally. I would ask your doctor to determine whether you have gastroparesis (slowed stomach emptying). If that is the case, the gastroparesis may be managed with a lowfat diet and small meals, allowing for less-frequent use of levodopa. That would make it easier to time meals and medications.

          Meantime, at your current weight you would need around 115 grams of protein per day; but as you are trying to lose weight, ask your doctor if you could plan protein for your ideal weight, which may be around 170 pounds. That would mean about 85 grams of protein per day, which would be easier to manage. If your doctor agrees, then I would divide this amount equally among your morning, midday, and evening meals, having around 28 grams at each meal.

          With your doctor’s agreement, you might try taking the Sinemet CR first thing in the morning, for example at 7:00 AM, and eat breakfast about 30 minutes later at 7:30, having about 28 grams protein. Then, at 9:00 am take another dose of levodopa, and again at 11:00 AM. At 11:30, have your midday meal, again with about 28 grams protein. At 1:00, have the next dose of levodopa, and again at 3:00 and 5:00. At 5:30 have your evening meal with remaining protein; and at 7:00 PM have the next dose of levodopa, and continue this till bedtime.

          Regarding diet, the Mediterranean diet is a very sound plan for those with Parkinson’s, as it is rich in vegetables, whole grains, fruit, fish, and with moderate amounts of dairy. I would eliminate all refined foods such as white flour and sugar, and all highly processed foods, such as canned soups and frozen meals. Focus instead on wholesome nourishing foods that support the brain and nervous system, as well as the bones and muscles. The Med Diet adapts very well to this plan.

          I hope this is helpful, but let me know if you have further questions. I wish you great success.

  10. Tami Keith
    March 1, 2017

    Kathryn; I was actually ‘browsing’ your site when we had a patient who stated Rytary had gluten in it. I work at a Neurology clinic in Nashville Tennessee and we deal with Rytary alot. Never knew it had Gluten in it. My comment actually is that you have a person whom you communicate alot with ‘Michael’, who had stated that his Rytary was too expensive after Humana. I am wondering if he tried going to the MY RYTARY website and filling out the registration forms. We have all our patients do this and they can provide financial assistance to patients AFTER the insurance pays. BIG SAVINGS. The doctors office should have the forms to send to the manufacturer to get the process started. IMPAX is the manufacturer.

    Just wanted to help. Thank you Tami K. LPN

    1. khadmin
      March 2, 2017

      Tami, thanks so much for your comments. I have heard from a number of people that Rytary is too expensive for them. Thanks so much for the information on MY RYTARY, I will make sure everyone knows about this resource, it may make it possible for more people to obtain this useful medication.

      I was not aware that Rytary contained gluten — I have seen the list of inactive ingredients, and it does not appear there. If you see the patient again, could you find out where s/he obtained the information? I would definitely like to know if this is indeed the case, as quite a few people have leaky gut or gluten sensitivity.

      Thanks again for your very helpful comments, I hope to hear from you again! -Kathrynne

  11. John Tyne
    March 7, 2017

    Personally I haven’t had a problem with Sinemet or carbolev and protien. But what I have discovered is that cannabis, be it an oil taken orally or smoked, it is far more effective than any prescribed medication at controlling the symptoms of PD

    1. khadmin
      March 7, 2017

      Thanks for your comments, John — I’ve heard similar comments from others, and hope more study is given to the use of cannabis for PD.

  12. KT
    March 8, 2017

    How long should one wait after or before eating protein if they are taking carbidopa/levodopa. i just started March 1st and the instructions read ‘do not take with high protein foods. so, what’s considered ‘high’? is it best to take it on an empty stomach?

    1. khadmin
      March 9, 2017

      Usually, if you take levodopa with plenty of water/liquid 30 minutes before a meal, that’s enough time for the levodopa to dissolve and clear the stomach into the small intestine before the meal enters the stomach. For most people a snack of 5-6 grams of protein won’t interfere with levodopa. But a meal that has 20+ grams protein usually will interfere. You have started Sinemet quite recently — do you experience any nausea? If so, take the Sinemet with meals for awhile, until your body adapts; then take about 30 minutes before meals. I hope this is helpful. Let me know if this did not fully answer your question.

  13. Alice
    March 30, 2017

    Thank you for this! Best answer to the issues of protein and levodopa I’ve been able to find. Thank you for posting in Purely Parkinson’s!

    1. khadmin
      March 31, 2017

      You’re most welcome, Alice, I hope it’s helpful.

  14. Kram Kennedy
    June 11, 2017

    Kathrynne,
    I know that in the past you have recommended that PD patients eat nuts and dried beans to get some of their protein. Does that form of protein interact with levodopa?
    I’ve been eating lots of nuts as snacks, along with lentil soup at some meals, and find that I have some motor fluctuations, although not as bad as when I eat animal protein at a meal. I also find that I am suffering from more frequent urination, particularly at night. I have read that nuts may increase urine production. Is that the case?
    Thank you for continuing to be a resource for us PD patients.

    1. Kathrynne Holden
      June 11, 2017

      Hi Kram,
      Yes, I do recommend frequent use of dried beans for their fiber and minerals, and nuts (especially raw) for their rich vitamin E content, along with trace minerals.

      Each person reacts to the various kinds of proteins differently, but for most people, milk protein has the worst effect upon levodopa absorption, followed by other animal proteins, and finally by plant proteins. It sounds like you are experiencing worse fluctuations with animal protein than plant proteins. But also, be sure you’re not eating nuts or lentil soup close to the timing of your levodopa; take the levodopa, then wait about 30 minutes before eating any kind of protein.

      Regarding increased frequency of urination, I doubt that nuts would have that significant an effect. This I would discuss with your primary care physician, because some conditions, and some medications, can cause increased urination, and may need to be addressed. Let me know how you are doing, and what your doctor says. My very best to you. -Kathrynne

  15. Erin
    July 24, 2017

    Good Morning,

    I was wondering if I can ask a question on behalf of my dad. He was recently diagnosed with PD and is taking Levodopa. One of the main issues we continue to have is my dad has syncope. This occurs mostly around when he is eating lunch or dinner. It happened again on Saturday night where he begins to pass out at the table (luckily my mom and I caught it in time). I cooked dinner (chicken, cauliflower rice and corn). Since this happens more often, I’m seeing a pattern because it seems to be centered around food and what foods he eats. Although he wasn’t wearing the compression socks, he did take his Parkinson’s medication and properly timed his meals. Could it be that he should eliminate carbs? For example, protein with only vegetables and no potatoes/rice or carb vegetables. We’d like to try and resolve this issue. Can you provide any recommendations or suggestions?

    Is there anything we can do to help with this? We cannot seem to figure out why this continues to happen.

    Thank you,
    Erin

    1. Kathrynne Holden
      July 25, 2017

      Erin, had he had syncope before he began taking levodopa? If not, then I would suspect that medication is a factor, because syncope is a possible side effect of levodopa.

      If he has experienced syncope before diagnosis of PD, then it’s possible it could be a result of GI stimulation, wherein the blood flow to the digestive system is altered. Also, syncope can indicate an increased risk of Parkinson’s disease.

      Could a particular food, such as carbohydrate, be the cause? That, too, is possible, but I would consult his doctor before making dietary changes, because he should also be checked for dehydration, hypotension, and other medical conditions.

      Let me know if you have other questions, and also, let me know how your dad is doing. My very best wishes to you both. -Kathrynne

  16. Karen
    August 29, 2017

    Kathryn – My husband began having stomach pain when he tried Rytary two years ago. Neupro causes the same problem and now his regular Sinemet CR can be a problem (he’s been taking the CR for 9 years). He takes Sinemet 4 times daily. The first dose is taken with a bite of something like banana and never gives him pain. The second dose, around 11am rarely gives him a problem. It appears that the pain comes from having the Sinemet stay in his stomach for a longer period of time because food is slow to be digested. Another factor is that the gastroenterologist put him on Dexilant for the stomach pain. Sometimes even drinking a glass of water during the night would cause pain. We’re trying to back him off the acid blockers and will try several other things like cabbage juice and something called Glutagenics. The acid blockers slow his digestion yet he can’t sleep if he’s in pain all night long. I’m thinking maybe 5 or 6 small meals and smoothies and green juices might be helpful. Have you come across this problem and do you have any suggestions?

    1. Kathrynne holden
      August 29, 2017

      Hi Karen,
      It sounds as though your husband has gastroparesis (slowed stomach emptying) and/or acid reflux/heartburn, and these unfortunately are all too common among people with PD. In this case, your plan for numerous small meals and smoothies is very sound – the stomach can process a small meal sooner than a full meal; and liquids move through the stomach by force of gravity, needing no stomach effort to grind them up, so they exit more quickly also.

      It would be good to use fat in moderation, as it takes longer to clear the stomach than protein or carbohydrate. Also, for gastroparesis, Swedish Bitters may help to stimulate nerve impulses and help with stomach emptying; it can help with acid reflux as well. Ginger may also help with gastroparesis. It sounds like his gastroenterologist knows not to prescribe Reglan for the gastroparesis, which can greatly exacerbate PD symptoms. Domperidone, from Canada (with a doctor’s prescription) can be used safely with PD to speed stomach emptying.

      I would also inquire of his gastroenterologist about the possibility that he might have small intestine bacterial overgrowth (SIBO), as it can occur secondary to gastroparesis.

      Glutagenics contains DGL, which can help with acid reflux, along with aloe for healing. I have no experience with it, but Metagenics products have generally gotten good approval from ConsumerLabs, an independent supplement testing company.

      If he has been on Dexilant for very long, he could be deficient in vitamin B12; you could ask the doctor to test for B12 deficiency.

      I hope this is helpful for your husband, let me know. I look forward to hearing from you.

  17. Karen
    August 30, 2017

    Hi Kathrynne –
    Thank you for such a quick response!

    I’ve started to research gastroparesis and we can try the bitters. The heavy stomach and very slow digestion started with the Dexilant.

    We’ve had multiple tests done, working with the Ultra Wellness Center, in Lenox, MA. No SIBO and no B-12 deficiency yet, although he takes a B-12 supplement.

    It looks like the best solution for his stomach pain and possible ulcer from Sinemet might be the natural remedies like Glutagenics, cabbage juice, more and smaller meals plus smoothies and green juices. Staying on prescription Prevacid (the current acid blocker) for this long may be creating more problems than it’s solving and we hesitate to return to the gastroenterologist where the answer will be more drugs.

    Thank you again for your suggestions and for confirming smaller, more frequent meals/smoothies!

    Karen

    1. Kathrynne holden
      August 31, 2017

      Karen, I’m so happy to know that SIBO is not a concern, nor B12 deficiency; it can be as worrying as the stomach pain. Your husband appears to be under very good and thorough care; the testing can be tedious but ruling out diseases is as important as treating them. If the Wellness Center has a registered dietitian, I am pretty certain s/he would agree with the small frequent meals, cabbage juice, smoothies approach, and most will agree with use of natural remedies like Glutagenics as well. Dietitians worry about B12 and iron deficiency with use of acid blockers and PPIs like Dexilant. Keep up your good work, and let me know how your husband is doing, or if you have other questions.

  18. Karina Vicuna
    August 30, 2017

    Hi Kathryn,
    I have a few questions about protein and weight gain. I’m very happy that I found your website. Let me introduce myself. My name is Karina, and I’m from NYC. My mother, Rosina is 58 years old and was diagnosed with PD when she was 50 years (she is considered a young onset PD patient). She at first started to showing symptoms of stiffness, fatigue and slowness until 2014 when her Doctor decided she was ready for surgery named DBS Surgery. It took a while for her to have that surgery for personal and financial reason, but her doctor decided for her to start taking the extended capsule of levodopa named Rytary. Since she took that medicine, part of those beginning symptoms disappeared. However, she developed a side effect of that medicine, dyskinesia. She was already considered a dyskenetic person. Therefore, she started losing weight because of those involuntary movement. This lasted for about 2 years more until she got the DBS Surgery on January 2017. Since the, she is not dyskenetic anymore which is a good relief for her. However, her walk was still the same as well as her freezing of gait. Plus, she gain the weight back and more. That’s when I got concerned about her because beside I’m her caregiver, I’m woman who loves fitness and eat healthy. Sometimes for me is difficult to know what type of food i can give to my mother because I know protein plays a really good role on her. I take supplements which are very natural, but I’m not quite sure if I should give it to her. That’s why Im here because I would like to what would be the best diet for her condition considering she is overweighted. How much protein do you think she need to intake a day? can she take protein supplements? like shakes? By the way, she is 5’0 and weights 168 pounds now. I want her to feel more energetic, even thou she is very active. She cooks at times, she walks around my block and at the park. I hope you can help me.

    Thank you so much.

    1. Kathrynne holden
      August 31, 2017

      Hi Karina,
      You are asking very good questions, and I hope I can help a bit. I will post an article on weight gain following DBS surgery at the end of this post, it may help explain why your mother has changed her eating habits so much.

      For weight loss, as well as support of the brain, the Mediterranean diet is excellent; it is rich in vegetables, fruits, legumes, fish, and whole grains, which nourish the brain and benefit the body as well. It is high in many fibers, which help with constipation and help feed the protective bacteria in the gut – the “microbiome.” It is also high in powerful antioxidants, which fight free radicals. Parkinson’s is a stressful condition, and stress generates free radicals, so antioxidants can be very protective. Turmeric is an especially good source of protective antioxidants and is under study for its possible benefits in PD. It can be used in cooking, or mixed into smoothies (use a few grinds of black pepper, to boost absorption of turmeric and its curcuminoids). For more on turmeric, see my post “Turmeric and Parkinson’s disease,” https://nutritionucanlivewith.com/turmeric-parkinsons-disease/

      See also “Eat Mediterranean to benefit your brain” https://nutritionucanlivewith.com/eat-mediterranean-to-benefit-your-brain/

      As for protein, she needs about ½ gram of protein per pound of body weight per day. At 168 pounds, that would be 84 grams. However, as she loses weight, that amount will need to decrease. Her ideal weight for her age would probably be around 120 – 130 pounds, and protein needs would then be 60 – 65 grams/day. If she is still taking Rytary, or using Sinemet, she should always take it 30 minutes before meals so it is well absorbed before she eats any protein.

      Here is an article describing weight gain following DBS surgery:

      Researchers Discover Why Deep Brain Stimulation Causes Weight Gain in Parkinson’s Patients
      https://parkinsonsnewstoday.com/2017/05/08/researchers-discover-why-parkinsons-patients-gain-weight-after-deep-brain-stimulation/

      Let me know if you have other questions, and congratulations on looking after your mother so well.
      -Kathrynne

  19. Erica
    October 17, 2017

    Hi Kathrynn,

    I’m writing with regards to my mother. She is 67 years old and was diagnosed with PD about 15 years ago. My mom has always been thin but in the last few years she has become excessively thin and we are worried as she continues to drop weight. Prior to her diagnosis she was 5’2 and weighed about 107. She now weighs 81 lbs and is all skin and bones. She is not without an appetite but it is reduced. though she sometimes doesn’t get down to the kitchen until 11 am or so. My dad often brings toast or yogurt up to her in bed around 8:30 am though. When she goes out to eat she can have quite a large appetite and some other times as well. She takes a lot of medication at this point for freezing gate etc and has been falling a lot even while using her walker in the last year or so. We thought this was PD or medication related but now I’m wondering if it may also be related to malnourishment. Anyway, she currently takes 250 mg Stalevo am, Rytary 8:30 am, 11 am, 3, 5, 7 pm, Rytary 8:30am, 11am, 3, 5, 7 pm. She takes 100 mg of Amantadine of 8:30, 1pm, and 5pm, 20mg of Escitalopram (Lexapro generic form) at 7am, Prilosec generic form in Omerprazole (6 as needed for nausea taken before meals). She also takes Excederin a few times a week for headaches. Any advice you have on combating the weight loss is much appreciated.

    Erica

    1. Kathrynne holden
      October 17, 2017

      Hi Erica,
      Your mother’s weight loss is definitely of great concern, and I agree that her falls could be, in part, due to loss of weight, including muscle mass. Such weight loss can also cause loss of bone density, which is important considering her falls.

      I think, though, that the greater concern may be her medications. Here are some possible side effects of these medications:

      Medication Possible side effects
      Stalevo loss of appetite, nausea
      Rytary confusion, lack of appetite, nausea
      amantadine dizziness, confusion, difficulty in coordination, mental depression, loss of appetite, nausea
      escitalopram dizziness, heartburn, gas in stomach, decreased appetite, confusion
      omeprazole loss of appetite, nausea, dizziness, heartburn

      There are also a number of interactions among them that can increase risk of loss of coordination, confusion, depression, dizziness, nausea, appetite loss, see:
      https://www.drugs.com/interactions-check.php?drug_list=148-0,1013-0,1750-0,14-2245,515-16942,514-2045

      Also, anxiety and depression can be, and often are for people with Parkinson’s, due to nutrient deficiency. In view of her severe weight loss, I think this is a distinct possibility. I am currently writing an article on anxiety/panic attacks due to nutrient deficiency, so this is timely.

      If nutrient deficiency is the case, then antidepressants such as escitalopram will not help, and may add to the burden of side effects. Of note: not everyone with PD responds equally well to SSRI antidepressants.

      If she has not had recent bloodwork for ferritin (iron level), 25(OH)D (vitamin D), vitamin B6 and B12, I would have this done as soon as possible. If her levels are normal, then I would retest in 2-3 years. But if low, then repletion may allow her to discontinue use of escitalopram, which could be contributing to her heartburn.

      Ask her doctor if she might try ginger tea or capsules for nausea, to see if she could discontinue the omeprazole. That might help with her occasional appetite loss, and paradoxically, her nausea and heartburn.

      Meantime, make certain that she gets the Stalevo and Rytary 30 minutes ahead of her meals, so that protein in the meal does not hinder absorption of levodopa. This will be especially true for her morning yogurt, as milk and milk products are particularly rich in the amino acids that compete with levodopa for absorption.

      She could also have available some non-protein snacks, such as fruit, or fruit/vegetable juices, crackers or toast with butter, to add extra calories throughout the day, without protein to interfere with her Rytary and Stalevo. Ginger tea has been very beneficial in reducing nausea, so if her doctor agrees, I think it would definitely be worth trying.

      Erica, I hope this will be helpful; let me know how your mother is doing, I care very much.

  20. Gloria G
    December 26, 2017

    Kathrynne, I just discovered your website and am so thankful! It’s a goldmine of information. My elderly mother (85) has PD but here’s the complication: she is also diabetic. So, timing of her meals and levodopa was our first challenge. But now, we’re also struggling to balance the competing demands of diet issues. She’s concerned about the right amounts of protein, carbs and sugar for PD and I want to make sure we don’t over-compensate in a way that pushes her into the danger zone for diabetes. She’s still about 50 pounds overweight and has a bit of a sweet tooth. We are planning to meet with her doctor and a dietitian to get some personalized advice. I think these two conditions make her care difficult to mesh. It’s not as simple as just choosing one diet plan. I think we’re going to have to customize it for her. Any thoughts?

    1. Kathrynne holden
      January 2, 2018

      Hi Gloria,
      My apologies for the long delay. The holidays and my husband’s loss of a family member have put me behind schedule, but I will try to make up for it today.

      The combination of PD and type 2 diabetes is not unusual, unfortunately, and you’re right, dietary needs must be customized. Very often, it depends in large part upon which disease is better managed – if PD symptoms are well managed, but blood glucose is not, then it will probably be best to give diabetes management priority. Whereas if glucose is under good control but PD symptoms are not well controlled, then PD management is the first concern.

      I know this is difficult if she has a sweet tooth, but by far the best thing is to avoid all refined ingredients, including refined sugar and flour. Highly-processed foods and ingredients are the worst type for folks with Parkinson’s, because the brain and nervous system need all the nourishment possible. Both soluble and insoluble fibers, omega-3 fatty acids, high-quality protein (especially fish), vegetables and fruits both raw and cooked, are preferred foods.

      If she uses levodopa, which I imagine she does, and if she is protein-sensitive, she may want to experiment with plant proteins – these often have less impact on levodopa absorption than animal proteins. Cooked dried beans contain a high amount of fibers, which generally help to blunt the release of insulin somewhat, allowing her to obtain the protein she needs while lessening blood glucose spikes. She might also try adding a bit of cinnamon and/or apple cider vinegar at meals, both of which help moderate blood glucose in many people with diabetes.

      Again, I’m sorry for the delayed response; I hope this is still helpful. Let me know if I can add further information.
      Best regards, Kathrynne

  21. Elizabeth MacDonald
    January 18, 2018

    In the Davis Phinney guide ‘Every Victory Counts, your nutritional information on page 177 says “You need two (2) grams of protein per pound of body weight per day,”

    On the Parkinson.org website, In your article “Parkinson’s Disease Nutrition Matters” you say,
    ” if you are otherwise healthy, this will be about 1/2 gram of protein per pound of body weight
    per day.”

    Which is correct? I was trying to eat 2 gr/pound for about a week and it is almost impossible. I weigh 100 lbs. The most protein I can manage is about 90 gr/day.

    1. Kathrynne holden
      January 19, 2018

      Hi Elizabeth,
      I just learned from the Davis Phinney Foundation (possibly due to your input) of this information on p. 177. This is an error. In the document I sent, it states “1/2 gram of protein per pound of body weight per day,” but somehow when the document was received and opened it mistranslated to “…two grams of protein per pound of body weight per day.” Unless your doctor states differently, if you are otherwise healthy and are not underweight or experiencing unplanned weight loss, then at 100 pounds, you need around 50 grams protein per day.

      The Davis Phinney Foundation is planning to print more of the manuals and will offer the corrected version at that time. They have said they will also try to contact their community with that information. It’s good you let the Foundation and me know of this problem so that it can be dealt with properly — great work on your part, and thanks.

      Best regards,
      Kathrynne

  22. Carol
    March 9, 2018

    I was diagnosed with SIBO in July 2017 and also restarted a PPI for acid reflux (in Jan 2018 after having stopped several years ago) due to acid reflux which my ENT says is the cause of a problematic swallowing issue I developed as well as vocal chord nodules. The swallowing issue/vocal chord inflammation is improved since I’ve been on the PPI. I’m concerned that the PPI is further aggravating the SIBO and that both the PPI and SIBO are interfering with the absorption of my Sinemet, which has never been as good as I would have hoped (diagnosed with PD and began Sinemet 3 years ago now). I took a course of Xifaxan last summer to address the SIBO – I don’t think it helped much, in terms of decreasing bloating, etc. I am now trying to strictly follow the FODMAP diet for the SIBO for 6 weeks in the hope that it helps. Also how much acid is needed for Sinemet absorption? I’ve also wondered if slow gastric emptying could be a possibility. I realize this is really a wide variety of issues but any advice you could provide on the best way to approach SIBO in light of acid reflux with the goal of better Sinemet absorption would be greatly appreciated! Thank you very much!

  23. Kathrynne holden
    March 11, 2018

    Hi Carol,
    You do have a range of issues, and they are not all that unusual in Parkinson’s disease, as it can affect the autonomic nervous system, which govens the gastrointestinal tract.

    First, I would guess it’s not at all unlikely that you have gastroparesis. SIBO can occur independently of gastroparesis, but the gastroparesis increases risk for SIBO. Gastroparesis also increases likelihood of acid reflux; and it can interfere with levodopa absorption, because food remains in the stomach for an abnormally long time, and any medications taken must wait for the food to clear the stomach before they can reach the small intestine for absorption.

    Regarding the PPI and levodopa absorption, it should only lower stomach pH to around pH 4, which should be sufficient.

    My best advice is to ask your gastroenterologist to rule out gastroparesis, because if it is present it may be managed by medications such as domperidone which is safe for those with PD (it is not available in the U.S., but can be ordered from Canada with your doctor’s prescription); and that could help both the levodopa absorption, the acid reflux, and possibly in conjunction with FODMAPS, the SIBO as well.

    I hope this helps, let me know. -Kathrynne

    1. Carol
      March 12, 2018

      Thank you for the information. I was wondering if drinking more liquids or soups may help with gastric emptying, even if it is in conjunction with solid foods. I was interested in the comment you made to someone else who using smoothies etc to help with this problem and you mentioned something about the force of gravity helping liquids move through the stomach. I wondered if this might be true even if solids were consumed as well – in terms of the liquid helping move solid food along – or if that would only apply to the liquid consumed. Thank you very much!

      1. Kathrynne holden
        March 16, 2018

        Hi Carol,
        I don’t think there is a simple answer to this question, though it’s a good one. Liquids drop through the stomach largely by gravity; no stomach action is needed to pulverize them, so they go straight through. Solids must be ground to a pulp; if liquids are consumed along with the solids, they might or might not make the stomach empty quicker, depending on the toughness/hardness of the solids and the amount of the liquids.

  24. Laurie
    March 21, 2018

    For someone with PD eating a plant-based diet where all their protein sources are from whole plant foods (beans, soy, nuts, greens, grains, veggies) and no animal products of any kind, does plant protein block the effectiveness of Levodopa in the same way that animal protein does?

    1. Kathrynne holden
      March 22, 2018

      Hi Laurie,
      A small study (n = 5) found that plant proteins were less apt to interfere with PD meds; however, in my experience, protein-levodopa interactions are highly individual. Some people have very little problem with any type of protein, while others are extremely sensitive to all kinds of proteins. I’ve know a man who took his Sinemet with a glass of milk, with no problem; and a woman whose levodopa was completely blocked by peanut butter for hours. There may be a yet-undiscovered genetic component; at present, there is no universal answer. By and large, though, I’ve found that plant proteins seem to be a better choice for most people.

  25. Naser vasfpour
    July 25, 2018

    Naser vasfpour
    Hi Catherine
    I’m very happy to find your site.
    9 years ago,Parkinson was diagnosed .I started treatment with Levodopa.I experienced a Lot of Levodopa 250 daily .my diet is mostly chia seed.and vegetarian protein is relatively pleasing is relatively pleasing.only a after Levodopa easing disorder of walking and uncontrollable movements in my Legs.I have frequent urination. please tell me.

  26. Kathrynne holden
    July 26, 2018

    Hi Naser,
    For many people, vegetarian protein does not interfere with levodopa absorption as badly as animal protein does, so if that is helping, you’ve made the right choice. It does sound as though you have now developed difficulty walking, along with dyskinesia (uncontrollable movements) or else “restless leg syndrome (RLS),” a feeling of crawling sensation in the legs giving the urge to get up and walk, especially at night.

    You need to talk with your neurologist, who can help determine the cause of the walking difficulty and uncontrollable leg movements.

    If it is dyskinesia, the doctor should be able to adjust the amount or timing of your medication, or try another medication.

    If it is “restless leg syndrome,” it could be due to an iron deficiency, and your doctor can order a blood test to see if your iron levels are normal. Some people also report relief from RLS by taking supplements of calcium, magnesium, and/or potassium, all of which are involved in muscle movement, and this is also something you can ask the doctor about. It may be that your diet is not providing enough of these minerals. For other people, a prescription for quinine relieves RLS, and some report that drinking tonic water that contains quinine also helps. And, strange though it may seem, still others say that if they put a bar of Ivory soap at the end of the bed, between the sheets, it helps RLS.

    I hope this is helpful, let me know if it did not answer your questions. -Kathrynne

  27. Dan O
    July 28, 2018

    Hi, my wife has been diagnosed with Runner’s Dystonia, also a movement disorder. One treatment that seems to work for some people is Carbidopa Levo, which she has been prescribed. Initially she’ll be taking 1 pill 3 times a day, separated by 4 to 5 hours.
    She is almost 60 and trains heavily, averaging 50 miles running and 100 miles cycling per week. She is concerned with the timing of her dosage in relation to her high protein recovery meals.
    A significant factor for her, I believe, is the fact that she is full Vegan so 100% of her protein intact is plant based. I read in previous posts that animal protein is more of an issue than plant protein regarding the absorption of the Carbidopa.
    How will this impact her recovery meals while taking the drug?

  28. Kathrynne holden
    July 31, 2018

    Hi Dan,
    You’re right – most people have less problem with plant protein blocking levodopa absorption than with animal protein, which should help. The main concerns are:

    1) to ensure she gets enough protein and calories to sustain her workouts;

    2) to allow time for the levodopa to exit the stomach into the small intestine and be released into the bloodstream ahead of her high-protein meals.

    3) to allow enough time between meals for her workouts – here I cannot help much as I don’t know when nor how long her workouts are.

    She needs to take the levodopa 30 to 60 minutes before her meals, and since she is taking it three times daily, she needs to eat all her protein at morning, midday, and evening meals. Then, for additional calories, fiber, vitamins and minerals, non-protein snacks between meals.

    Here is a sample day’s plan: let’s say she eats her morning meal at 8:00 AM, her midday meal at noon, and her evening meal at 6:00 PM. Then, if she needs snacks in between meals, these should be non-protein foods, such as bread, pasta, fruit, vegetables, etc. that are not too high in fat, as fat takes a long time to clear the stomach and could be a factor for her next dose of levodopa. Here is an example, which she will need to adjust to accommodate her workout routine:

    7:00 AM Levodopa
    8:00 AM Morning high-protein meal

    9:30 AM Fruit and/or avocado toast

    11:00 AM Levodopa
    12:00 PM Midday high-protein meal

    3:00 PM Smoothie of coconut milk, fruit, and kale; or whole-wheat spaghetti tossed with olive oil, chopped tomato, and basil

    5:00 PM Levodopa
    6:00 PM Evening high-protein meal

    8:00 PM This snack can contain protein, as she will not have levodopa again until 7:00 AM

    I hope this answers your question; let me know if you have other concerns. Best, Kathrynne

  29. Paula
    August 10, 2018

    Hi, Kathrynne. I followed your column on NPF & now on Facebook. At 12 years past PD diagnosis & 15 years of Type 2 Diabetes, I thought I had worked out a reasonably good diet, but after DBS 2 years ago, I suddenly gained a lot of weight & my A1c soared. Quite depressing. Then recently my strong healthy husband unexpectedly had a major heart attack (no obvious risk factors, except genetics possibly) , which threw me for a loop. He’s always been my rock, not to mention my caregiver. Hoping for some tips on how to integrate heart & diabetes & weight requirements into our diet. Seems difficult if not impossible to maintain without feeling deprived. Feeling overwhelmed! We have been pescatarians for many years, so we already eat pretty healthy (but have a sweet tooth). I’m on Metformin, Isradipine, Synthroid, & small amounts of Sinemet & Requip. I also take magnesium, folate, V. D2, fish oil, B12, also topical progesterone & estrogen patch. I’ve heard that Metformin can cause B12 (or magnesium?) deficiency. Any thoughts or recommendations on diet, types of supplements, or medicine incompatibilities greatly appreciated.

  30. Sandy Schnitzler
    August 14, 2018

    Kathryn: I would like to know if I could drink three or four sips of natural apple cider vinegar in an 8 oz glass of water with Sinemet for PD to alleviate my restless leg muscle spasms?

    Than you.

    Sandy, age 71.

  31. Naser vasfpour
    August 18, 2018

    Hi kathrynne
    I want to know if the problem of anemia and a shortage of blood hemoglobin can be due to eating chia seeds that I use 2 tablespoons a day. I have a problem with by potensin . At night, I have a head a che . why is chia seed safe

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