my diet

You are what you eat” is an old saying with a lot of wisdom.

Scientifically, medically, and personally speaking, diet plays a very significant role in disease, health, and healing. A lot of chronic diseases can be improved and symptoms reduced with a diet that is specific to that person’s needs and free of any allergies, intolerances, and disease-promoting chemicals and preservatives. It’s been a long road (and physical struggle) finally getting to the bottom of my food sensitivities and dietary needs. I’m happy to say, though, that I’ve finally found a good balance and wanted to share it with everyone because it has really helped improve my energy, sleep, and make me feel better over-all. I’d encourage everyone to take a serious look into their own diets and make improvements with the help of their doctor or a Registered Dietitian as necessary so they can reap the same benefits.

My facts:

  • I am allergic to dairy products.
  • I have some intolerances to gluten (a protein found in wheat, barley, and rye) and peanuts.
  • I am slightly sensitive to soy, meaning that I can’t eat too much of it or I feel worse.

You might be thinking, then what in the world can you eat?? Well, more than you’d think. There’s a lot of great people and companies out there who have made it possible for people like me to have a diet that can actually taste good while being good for me.

I like to keep my diet simple and natural. I believe that food in it’s most natural (whole) state is what’s best for the body, because that’s how it was made to be. I try to stay free of preservatives, additives, refined sugars, white flours, and other man-made chemicals and fillers added to food so that it’s “cheaper” to make. (Good article here.)

blueberriesA normal breakfast for me usually consists of cereal with blueberries and rice-milk. (Easy to make when you can’t be cooking or upright for long.) On really good days, I like to make gluten-free pancakes with fruit and eggs. It’s important to eat a large breakfast as it helps boost your energy levels for the day. Also, make sure you include a healthy protein source (like egg) to keep blood sugar levels stable.

I try to eat 6 small meals a day, but sometimes life doesn’t work out that way. So then it’s more like 3 medium meals with 2 small snacks in between. Either way, I try to keep something in my system every 3 or 4 hours to prevent drops in blood sugar.

A typical mid-morning snack might be fresh veggies with salt. (I like cucumber, carrots, and celery the best — and I eat them RAW to maintain all the nutrients.) And maybe some pretzel sticks (again, salty).cucumbers

For lunch, I’ll have a lean protein source (like beans or chicken) with tortillas (or bread), avacado, or some other low-sugar fruit like pears or green apples.  This is again, easy to make and doesn’t require a lot of energy.

sunflower seed butterIn the afternoon, I definitely need a good snack to keep up energy levels, so I usually eat protein, like sun-butter with celery, or even some chicken or beans by themselves. If I have leftover meat from the night before or even from lunch, I’ll just eat it real quick which saves time and energy. I also love to make smoothies. My favorite is carrots (or carrot juice), celery, and green apples all in equal parts. For more of a protein-boost I add and all-vegetable protein mix (BUY HERE) to the smoothie as well.

At dinner-time I try to eat some sort of lean meat — chicken, fish, or steak, with rice or wheat pasta and vegetables. Sometimes all of that is put together to make a stew or soup. I try to eat brown rice as much as possible (white rice is terrible for blood sugar issues).mexican dinner

All in all, it’s pretty much the same things just “mixed and matched”. I don’t have a lot of energy to cook gourmet meals, although I do enjoy cooking. I try to save my energy for other important things, and try to keep my diet simple.

I inter-change these meals for whatever fits my schedule. I am not particular… I can eat dinner food for breakfast and breakfast food for dinner, so whatever is easiest for me on that particular day is usually what I eat.

For those of you who are Gluten-free, there are many ways to use rice and corn (the only grains you can have, except for sprouted bread) to make food interesting. Here are some recipes. Also, I know that Meijer and Kroger grocery stores have an entire section devoted to gluten-free goods, which can also be easily found  (and affordable) at health food stores like Trader Joe’s or Whole Foods Market. And never underestimate the convenience of online shopping, especially for dry foods and buying in bulk, it can be a great resource to make getting the nutrition you need easier if you don’t have the energy (or help) to grocery shop.

A few tips:

  • EDUCATE YOURSELF on food producing, quality, and the importance of diet as it relates to health. There are thousands of sources available that are easy to understand and will help you make better choices and grasp the necessity of having a healthy, natural diet.
  • Keep fruits and vegetables raw. Rinse them well. Lots and lots of fruits and vegetables is truly the way to go.
  • If you’re a vegetarian, you can get protein sources from beans (which are easy to make), and tofu if you like it. There’s also a variety of protein shakes available and nut “butters” to satisfy your taste buds like almond butter, sun butter, cashew butter, etc. It’s important when you’re a vegetarian AND have a chronic illness that you’re getting enough protein each day to maintain muscle mass and energy levels.
  • Drink lots and lots of water. This should be taken more seriously by everyone, but especially people with Dysautonomia. Buy a large water bottles that’s a liter or so and then you don’t have to make as many trips to the kitchen or faucet, while also being able to keep track of your daily intake. Anytime your mouth is dry or you’re thirsty, DRINK!
  • Salt, salt, don’t forget your salt! (sea salt is preferred!)
  • If you can handle spicy food, do it! The spices in peppers and other hot foods have some great effects on health. It’s been thought that they may prevent cancer, infection, and release “happy” chemicals in your brain.chiles
  • Take PROBIOTICS to keep your digestive system healthy. Especially if you can’t have dairy and you can’t eat yogurt, it’s essential to maintain a healthy pH level in your digestive system for optimal function.
  • READ THE LABELS!!! Lots of bad chemicals and preservatives can be hidden by their “scientific” names listed on the ingredients panel. Educate yourself on these things and always, always read the ingredients and allergy information in everything you eat.
  • cherriesEat anti-inflammatory foods like red grapes, salmon, olive oil, dark greens, tomatoes, broccoli, cauliflower, blueberries, cherries, turmeric, ginger, and green tea (unless you have been told by your physician to avoid caffeine).  These foods can help with pain, fatigue, migraines, weight-loss, and are just great for your health in general.
  • Eat everything in BALANCE and MODERATION. Control your portions. In the U.S., there is a huge eating problem with thinking that your body needs all this food and these huge servings they serve at restaurants, and it’s completely not true. Listen to your body. Eat when you’re hungry (not bored or emotional) and stop when you’re FULL. Don’t over-eat, it’s hard on your system and can certainly make all your Dysautonomia symptoms worse.
  • STAY STRICT. When you don’t have a complete allergy, and it’s not life-threatening, it’s easy to “cheat” on your diet by eating things you are sensitive or intolerant to. When you have a chronic disease, this can impact you more than you think. Before you eat something you know you shouldn’t, ask yourself “Is this really worth it?” It is really worth a few seconds of taste-bud pleasure for nasty side-effects of fatigue, palpitations, migraines, inflammation, pain, and/or upset stomach? No, it’s not! Treat your body good!

happy food happy heart

~EAT TO LIVE, DON’T LIVE TO EAT~

*Feel free to contact me if you want any help or advice in creating a diet that’s healthy AND tasty if you have certain restrictions, allergies and/or other food sensitivities.

12 responses to this post.

  1. garlic is proven to be horrible for people with POTS. it takes all the energy your heart, etc. and moves it to the digestive area making you REALLY tired. My sister’s roommate LOVE to cook with garlic, and our whole xmas meal had it in everything… I didn’t wake up until dinner time the next day lol. it’s in most foods, and since I’ve cut it out, I’ve felt a LOT better for it, and have waaay more energy than I did.

    Reply

    • Wow!! I had no idea!! You’re right, I read some of the research about it — I will be taking garlic off my reccomended foods list asap! Thank you!! And LOL about the sleeping thing…soo glad you’re feeling better 🙂 🙂

      Reply

  2. Posted by Ky Mama on June 14, 2011 at 7:33 pm

    Thank you so much for all of the info on this site. My daughter has just been diagnosed with dys, and POTS. She also has oral allergy syndrome and because of that is allergic to all raw fruits and veg. except berries and citrus. She can have fruits and veg. that are cooked -over cooked actually, because it changes the protein. I also am aware of the need to increase her salt intake.
    She is very nauseous and doesn’t eat well so I feel an increased need to see that what food she does take in is nutrient dense. He other GI issues are IBS.
    Any suggestions?
    Thanks again,
    KY Mama

    Reply

  3. Posted by Alissa on November 28, 2011 at 5:56 pm

    My son was just diagnosed with dysautonomia and was previously diagnosed with neurocardiogenic syncope. He is in 7th grade and his symptoms are flaring up i cant even get him to go to school ….he is severely nauseous!! do u think changing his diet will help with the nausea? Help please I don’t know what to do anymore 😦

    Reply

    • It is not uncommon for many Dys patients to first receive a Dx of NCS before a correct Dx of POTS is made, considering NCS is more well-known in the medical community. I am sorry your son is struggling so much. Nausea is definitely a very uncomfortable symptom. Changing his diet can help, but more so changing the amount and frequency of his meals would be more effective. Try having him eat 5-6 small meals per day at regular intervals. Also avoid foods that can exaccerbate nausea such as dairy products and fatty foods. Have you tried any conventional medications for this? How about Ginger candy or ginger tea? They also make acupressure wristbands that I have known to be helpful with this as well.
      Best wishes for you and your son,
      H

      Reply

  4. Love the awareness here, especially on ginger snaps. I can’t prove it, but I do believe that POTS patients tend to get hypoglycemic and eating every 3 hours is a must. Also, remember that POTS is also associated with the same gastroparesis that diabetic patients get….the inability of the stomach to empty. Hence, eating a ‘meal’ can lead to vomiting vomiting vomiting just because the stomach can not ‘move’ the food forward.

    Finally, I can not leave without mentioning the potential, beneficial use of Acupuncture for autonomic nervous system dysfunction. And we shall be hearing more about a Chinese herbal medicine blend … :-)… and it is good to learn something new every day. Thank you for raising this issue and bringing it forward for discussion.

    Reply

    • Posted by Elegia More on January 13, 2013 at 11:49 pm

      Hi – hyperadrenegic POTS for 30 years now. Many POTS patient can’t digest raw food or in fact, in my case, any vegetables except for root ones. Like many with POTs/dysautonomia, I have gastroparesis and IBS/constipation. Fiber sits and can lead to bacterial overgrowth, which in my case led to C diff and eventually brought on Crohn’s disease. Also my IBS drastically improved when I moved to a low residue diet (no fiber).

      I went to a highly recommended Chinese acupuncture expert in a major city. He said that under no conditions would it be safe to put a needle into a person with very high sympathetic nervous system issues such as myself. As many POTS patients do not know their norepinephrine levels or swings, this expert said it was dangerous for POTS patients to have the needles inserted.

      In fact, his assistant is a researcher for http://www.dinet.org so the info is good.

      I had an ALCOT test done to find my food intolerances. Gluten was one of them. I, too, am much improved without gluten.

      Thanks for this helpful facebook page, Hillary, and all the hard work you put into it.

      Reply

      • Elegia,
        THANK YOU SO MUCH FOR YOUR INPUT!! I really love it when other educated patients share their knowledge. it is very helpful. I appreciate your pointers here and will make note of them!
        Thanks,
        H

  5. Posted by Mary Thomas on March 16, 2013 at 4:05 pm

    Hi everyone, I’m a 17 year old girl living with pots and I really need some help with diet and exercise advice, I’ve been diagnosed with pots for two years and since then have had no help from the hospital. If you can help me please email me or use my email to find my facebook account, mary_hannah_keturah@live.co.uk thanks!

    Reply

    • Hi Mary,

      Thanks for reaching out to us here on the site. I am sorry you are suffering from this disease. I have a special post about diet here on my site if you click on the tab “Tips: Living with Dysautonomia”. Everyone is different but most people feel better with a lot of salt and lots of fluids. Staying away from sugar is a good idea too and it increases inflammation and weight gain. Any added weight is a stressor to your body in general. A healthy diet is absolutely CRITICAL to improving your quality of life. I have found that I feel better with a vegan diet (no animal products whatsoever) and also find it helpful to eliminate gluten and dairy all-together. You will need to experiment one thing at a time to find what works best for you — what helps and what doesn’t. Generally, a diet rich in fruits, vegetables, lean proteins, and whole grains is optimal. Try to stick with whole, natural friends and stay away from processed or refined foods.

      As far as exercise is concerned, this is also a topic where we vary greatly. Always start any exercise program with approval from your Doctor and start slowly. Gradually increase your exercise routine to build endurance. For us, endurance is more important than strength. Start with simple stretching and some light walking. 20 minutes of walking per day is great if you can tolerate it. Even if your break it up into two 10-minute walks or 5 4-minute walks, etc, it still counts. Consistency is key. If you want something more intense, anything that is cardiovascular and keeps you somewhat low to the ground is great for those of use who are more symptomatic upright. Examples include: swimming, rowing, stationary biking, pilates, and elliptical machines. If these are all tolerable for you after a while, you can increase to normal work-outs, again with an OK from your Doc. I have tried most of what I have recommended and personally, dancing is my favorite and most tolerable form of cardiovascular exercise. I think the constant movement of all different parts of my body helps my blood stay flowing properly and the music helps me stay motivated and positive. *If you feel any severe symptoms, chest pain, dizziness, or shortness of breath when exercising STOP IMMEDIATELY and contact your doctor.*

      Best of Luck!

      H

      Reply

  6. Posted by Mary Setchell on May 6, 2014 at 5:50 am

    Hi! I had severe neurologically-based post-viral POTS. I was bed-bound for nearly four years. I actually abandoned my vegetarian diet after learning about the necessity of saturated fat for proper functioning of the nervous system. I spent those four years that I was stuck in bed pouring over medical books. I tried the raw diet, a two week juice fast, eliminating gluten, etc etc. All of which made my symptoms much worse. I finally stumbled upon the GAPS diet, which ultimately cured me. Within six months I was off all my medications and returning to work. I had to do a modified version of this diet as with POTS any form of sugar (even from honey and fruit) and anything that will turn into sugar in the body (such as starch or even too much protein without a proper blance of fat) will make things worse. Ultimately, I did a low-FODMAPS ketogenic version of GAPS. Within a month of being on the intro diet I saw my neuromuscular doctor at Cleveland Clinic and he could not get over my improvement! It’s been four years now since I healed, and I still to this day stay on this diet. I am now working more than full time, I’ve graduated college and I’m getting married–all things that I had thought impossible before. I can’t stress more strongly the impact diet has on this disease. Avoid sugar, grains of all kinds, starch, and fruit like the plague!

    Love, Healing, and Personal Empowerment Through Diet,

    Mary
    msetchel@gmail.com

    Reply

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