Eating Habits

[Aimes]

I would love to know what diet changes people have found to be beneficial to them. I've heard people discuss a lot of different options (Gluten free, dairy free, vegan, vegetarian). I'm researching and thinking Paleo is probably the best option for my family. I'm just interested to hear everyone's experiences and opinions on this!

[jknh9]

I don't follow a specific diet per se, but I have noticed that eating a mostly vegetarian diet has helped. I also avoid processed foods and junk food and I have cut way back on my sugar intake. I have increased my intake of yogurt and berries and dark leafy greens, and I have something like quinoa a few times a week (in a salad or cooked with Swiss chard). I guess the way I eat isn't so different from Paleo, actually. My husband has been really receptive to adding quinoa and more vegetables to our diet. One great cookbook I've been trying to use lately is Japanese Farm Food, which uses a lot of organic produce and brown rice miso

[westernmass]

I've tried vegan, gluten free, and a host of food intolerances-free diets. At this point, I don't follow any strict diet with specific rules- BUT I eat very clean. I try to eat a variety of foods. I eat entirely organic to avoid any hormones, antibiotics, and pesticide/herbicides. I avoid processed foods, all soda and sugary/dyed drinks. My food intolerances seem to change- for months I couldn't eat eggs, but now I can, but can't eat pineapples anymore (?). I try to graze with lots of small meals/snacks. I eat mostly vegetarian, with meat occasionally, fish fairly frequently and small amounts of good quality dairy.

I haven't come close to any cures via diet but I do notice I feel better the cleaner I eat. Lots of fruits and veggies

[Mydoggielovesme2]

Before going to Mayo, I was starting the Paleo diet. Now that I have been diagnosed with Celiac disease, I am completely gluten free. (No cheating) we are going organic, whole foods ect. Only eating meat a couple of times a wk. Am starting to notice some real improvement. Less brain fog, more energy, less stomach problems. Still have a long way to go, but hope for more improvement.

[Joann]

It's odd, but I tried to eat really healthy when I was really sick and it did not help me. I finally needed to gain weight really bad. So I decided i didn't care if it was fattening food or not. I discovered for me, that i feel better when I am eating protein. So unlike others, meats are something that really help. Now I do buy mostly lean, organic beef and chicken.

I also do eat sweets. I just avoid things I know bother me. Carbonated beverages, alcohol , greasy food, extremely salty food(I have the high bp ), and some dairy seems to bother me. To gain my weight back, I ate hostess King Dongs (I know they are called King Dons too), and ice cream bars everyday. I am not saying I don't eat fruits and vegetables also, I've always fed my family healthy. But for me I need some protein and fats in my diet. Oh, and I do eat carbs, I always have had a craving or them, I haven't noticed a problem with eating them.

[Carrie]

My experience has been similar to Joann's.

Paleo/primal/low-carb was the worst thing I did to myself and it caused the onset of adrenal fatigue. I was always a thin, active person, and I tried the "primal" plan for even more energy and to reduce sugar cravings. I was pretty involved with some of those message boards. Over a period of about three or four months I completely crashed: low energy, low thyroid, being even more frozen than usual. The paleo group admonished me to just eat more fat and/or take thyroid supplements, even though it turns out that low-carb eating over several months prevents the liver from converting T4 to T3, the active thyroid hormone! There is a whole website dedicated to people who suffered long-term health problems from trying to be healthy, called 180DegreeHealth. Matt Stone has an article there called "The Catecholamine Honeymoon" that explains the temporary catecholamine rush from a paleo diet, which is why many people feel better right away, but then several months later all of the problems return even worse than before. http://180degreehealth.com/2010/06/the-catecholamine-honeymoon

Your experience may be somewhat different. Most of us at 180 were endurance athletes who weren't getting enough quick energy from heavy fats.

It turns out that my low body temperature, low thyroid readings, and sugar cravings were from... not eating enough carbohydrates.

I still eat only organic, self-prepared foods (no dyes, flavorings, etc.), but I do get a lot of "sugars" in the form of dried fruits and things like that. I eat three meals and two snacks a day, if not more on particularly active days, and there is a fairly even balance between carbohydrates, protein, and fat. I've found I don't digest raw vegetables as well so I have a big batch steamed and eat them over a few days. Also I don't digest nuts very well so I make them into nut butters ahead of time. But just clean, whole foods, making sure to get enough food throughout the day.

Our metabolisms are all different so different ratios might work better for different people, but this is just how I feel best.

Good luck!

[Carrie]

Oh! Forgot to mention, I was tested for gluten and casein allergies and those came back negative. A doctor recommended going gluten- and dairy-free for a while just to see what happened, though. I did this for 6 months and didn't notice feeling any differently, so now I do have some milk and bread. Good, homemade organic whole-wheat bread can be very nutritious and filling for those who can tolerate gluten. There are also some other fun grains like spelt that can be tried in place of wheat.

[margiebee]

I'm similar to what other people have said, my system is honestly just too sensitive to make drastic restrictive changes like full-on veganism or paleo right now. I tried eating a clean vegan diet for about two months and I just lost a lot of weight and felt very low energy, along with gaining even worse digestive issues. Currently I try to eat whole-foods based vegan things when I can, but I supplement that with white meats for added protein. I eliminated all soda, high fructose corn syrup, caffeine, tomato sauces (huge trigger for me), processed packaged foods and fast food and it did improve my health slightly. I do salt load and always have by some kind of strange instinct, and I have to actually monitor my calorie intake so to not lose weight. I eat around 3000 calories a day to stay at a healthy weight, not sure if anyone here has this problem haha. Have been thinking about lowering my sugar intake but I am scared if I do I will drop too much weight.

[westernmass]

Carrie, very interesting! I look forward to looking into that site. It wasn't all too long ago that Atkins was the craze and that turned out to be wildly unhealthy and damaging.

Unlike several of you trying to keep weight on, I've gained 15 lbs since getting POTS. It is really stubborn weight and the heaviest I've ever been (though not an unhealthy weight). I have been struggling to lose, despite eating healthy and exercising. I am getting stronger, which is nice and I know muscle weighs more than fat, but the fat on my stomach is still fat LOL! But I'm just focusing on being as healthy as I can now.

Interesting to see some of the overlaps people are experiencing with diet.

[Aimes]

Wow! Thank you all for the responses and input. I've never handled carbs well, which is unfortunate since I'm a carbaholic! I don't have celiac but too many carbs makes me feel tired, tachy, and like I have a brick in my stomach. I mostly want to learn to avoid processed foods and things with additives. When I had this last terrible flare, I had to avoid solid food. It was strange. Even one bite of solid food would send my body into a fit. So I had only broth and jello for about a month. Then I slowly added in soup, bananas, applesauce, and finally worked up to solids again. It was almost as of my stomach forgot how to work. I'm muh better now but more cautious about what I eat and I would really like to try to implement some better eating habits! I soooo wish I had the energy for a garden! I live on a farm so we already eat our own beef and know where it's been and what it's been exposed to. I just wish we had that garden for fresh fruit and veggies, too! :-)

[SeattleRain]

I wish I had the energy for a garden, too. I eat a lot of fruits and vegetables but it's tough getting to the grocery store on a regular basis to get fresh produce. However I recently signed up for Safeway delivery and it's working out pretty awesomely.

I also can't handle high carb foods. In general I think it's high calorie foods (high carb foods tend to be high calorie, anyways). My theory behind it, is it takes blood away from circulation and into the abdomen to help digest/process and the result is I feel horrible and tachy. Pizza, pasta and red meat don't click with me anymore

[Psalm 23]

I try to follow a somewhat modified anti-inflammatory diet ( Dr. A. Weils ). Because of GI issues and postprandial pooling I have discovered over time that a mostly vegetarian ( I do still eat small amounts of white poultry and wild caught fish ), very low fat, low/med. fiber and as organic as possible diet helps lessen my symptoms. I also eat small, more frequent meals. I have entertained the idea of going vegan but have not yet fully embraced it..

Have you ever had a gastric empty scan Aimes ? Some of what you describe in your last post sounds like gastroparesis symptoms. It helps to know if that is one of your issues as then you can have a greater awareness of what foods will potentially cause you problems.

I have a problem in that too many carbs consumed at one time causes distention, tachy etc. for me as well and believe as you do Ryan that it is related to a large diversion of blood going to the stomach ( postprandial pooling ). Any food that is slower to digest can potentially increase this problem. I have found that wearing an abdominal binder helps immensely in reducing what feels like a large accumulation of blood.

I used to have a large organic vegetable garden but just don't have the energy for it anymore either. There is nothing like growing your own organic veges. Lets be optimistic that one day we will all be well enough to start one.

Best of wishes to you .

Janet

[abbyw]

Interesting, my POTS came on when I was 2 days into trying to go gluten free. I was already dairy free, due to IBS. I had lost a lot of weight and my stomach was really bad. I tried going gluten free, and that's when my POTS symptoms started out of the blue.

I have not tried any special diets since then, although I am still dairy free. I don't eat large meals, but graze throughout the day.

[margiebee]

Abbyw, trying gluten free also ramped up my symptoms, I think that I just have too sensitive of a system to make extreme dietary changes right now. I also get very wild swings in blood sugar if I don't eat regularly so that becomes a problem, I pretty much have to have access to food all the time. I carry around snacks with me everywhere.

[dpeeps]

I don't follow any special diet, but I avoid sodas, alcohol, and processed foods as much as possible. I only drink one cup of coffee per day in the morning an no other caffeinated beverages. I feel best when I "graze" all day. I also keep small snacks with me at all times. I lost about 15 lbs during the initial flare of POTs (I was thin already), but I am not maintaining a healthy weight.

[Relax86]

Diet seems to mean everything and also nothing for me. I have had a POTs flare settle with a few hersheys kisses and a few sips of coffee also a few bites of brown rice with chicken. I've always had limits with food due to left flank pain. I have in the past eaten so clean that both my good and bad cholesterol where too low. I know lowering my sulfates has been helpful. I've always been a clean eater except chocolate (candy, I don't like baked goods or ice cream) and beer. I do love my drinks on the weekends. Regarding alcohol, it helps my symptoms but there's a number of drinks I can do for symptom reduction and too many make me feel worse. I have always followed Dr Andrew Weil's principle of eating the colors of the rainbow every day. Post POTS I added coconut oil, kale smoothies, and lemon in my water. My girlfriend and I were chatting this weekend about how mindful we are about food. It's incredible to us that we eat pretty clean and still have such health issues. We both have friends that live on fast food, meal skip, and generally make all the common mistakes and never give it another thought. Crazy!!!

[Aimes]

It's so interesting to see how different we all are regarding food intolerances. I've had a hard time eating again this week and last night I even had to resort to soup. I've had so much soup this year, I should invest in Campbell's! Haha!

Janet, I'm almost positive I have gastroparesis. Unfortunately, the GI Specialist I see doesn't believe in the accuracy of Emptying Scans and says there is not enough knowledge about stomach emptying issues. According to him gastroparesis is extremely rare. In my opinion, it's probably rare in the general population but rather common among POTS patients. It's even more frustrating because this particular doctor's sister has POTS, so I had hoped he would be more open-minded. My digestion troubles seem to come and go with no warning or triggers. I'm battling them right now but by next week I might be fine... It keeps me on my toes I guess! :-)

[Lethargic Smiles]

I think most about what my food is made of and getting enough protein/carbs/fat to sustain myself. I go for whole foods (rather than food-like-products) and try and consume as few refined and processed foods as possible. My feelings are that my body is stressed out enough, so I don't want to be adding more stress by forcing it to clean toxins I am knowingly ingesting. I am working on eliminating chemicals in my life. I have succesfully done so with my food and I don't use any hygiene products with chemicals except deodorant.

Our bodies are bombarded with toxins from the products we put on them (shampoos, lotions, soaps, perfumes, hair products), what we breathe in (pollution, candles, air fresheners, cleaning products) and what we consume. The body is amazing in that it does a pretty good job of detoxifying itself from all of this. Whatever it canot detoxify and eliminate through urine, the body tends to store until it is able to get rid of it. I try and help it out where I can. The antioxidants in fruits, vegetables, and whole grains help the body out with getting rid of these toxins.

There is a documentary on Netflix called "Hungry for Change" that helped me truly understand why refined and proccessed foods are dangerous. I always knew they were bad, I just didn't completely understand the complete answer as to why.

I do want to mention I have some food intolerances, but I don't know that they are related to POTS. I don't eat egg, dairy, soy, or gluten. Well before I came down with POTS symptoms, I would frequently look pregnant after eating. I have a picture of my stomach before and after eating some Chinese, and it's qutie amazing! I do feel better when I avoid these foods. However, who wouldn't feel better not being bloated, gassy, and backed up all of the time?

[Lethargic Smiles]

Oh yes, avoiding alcohol is a must for me! I rarely indulge and almost always regret when I do.

[Psalm 23]

Hi Aimes,

I'm so sorry to hear that you have been having another bout of severe food intolerance. I go through episodes like that and have to resort during those times to eating/drinking not as healthy as I would like. Interesting view your gastro doc has on gastroparesis and gastric empty scans. I guess they all have different opinions on various things. I had a gastric empty scan done in 2010 which came out abnormal. That result helped explain some of the symptoms I had been having. When I went to Mayo the following year the gastric empty scan was redone along with lots of other tests. I only bring that up because I thought you had been to Mayo recently and wondered had the subject come up. I had originally thought my visit would be emphasizing neuro concerns but it went off into numerous directions. I hope you start feeling better soon.

Janet

[Aimes]

Janet, I did just return from my fourth trip to Mayo Clinic. The first three visits were in Rochester and at that time my digestion was not an issue at all so we focused on the heart. This last visit was in Arizona (because Dr. Goodman moved) and my stomach was working perfectly that week. Go figure! It's probably the only week in the last six months that I didn't have nausea or that "brick in my stomach" feeling. Dr. G. suspects MCAD might have something to do with it so about a week ago I started the meds for that. Hopefully, the meds with some dietary changes will give me some relief! :-) Thank you for your kind words and insight!

[Psalm 23]

Aimes, I sure hope you get some relief with the new meds and figure out what dietary changes are helpful. I guess I was fortunate that Dr.G.had already moved before my referral. I'm sorry for you having to travel so much farther. I am planning a return visit for a variety of reasons, one of which is to talk with him about MSAD as I am wondering if that is another problem I have been dealing with. The search for answers and solutions continues so we just keep moving forward. Take care.

Janet

[kitt]

Always a great topic.

Giving up all sugar years ago has been profound for me...No cheating. I eat fruit though. No 'fake' sugars or stevia either.

I was a vegetarian for 15 years, but didn't feel 'better'.

Am lucky to have a Whole Foods 2 miles from our house, so my husband and I eat clean 'whole' foods.

No junk, nothing out of a box or can. (Not quite true, rice crackers are out of a box, but the ingredients are very limited.) Organic fruits and veggies and only meat that is organic also.

I've read articles recently about gluten free, and while I don't have a link handy I did read that going gluten free can help with 'neurologic issues'. Even my cardiologist recommended it.

Have been very symptomatic with hyper pots, so have not wanted to start anything new in terms of diet, but I'm now very 'aware' of gluten and switched to an english muffin made from corn meal. Little things, but I do still eat gluten.

As for carbs...for me they seem okay in moderation. I don't notice crashing from carbs. I tend to eat small meals.

I read that one of the symptoms of pots is 'being quickly satiated'...I thought, 'wow, that's me.' In a restaurant I never finish more than half of my meal. I get full quickly.

Am very sensitive to people who struggle with their weight, but it seems that a lot of pots patients are naturally thin. Does anyone know why this is? It seems a lot of us share the same body type.

Changing eating habits can be difficult at first, but once you change a habit, it's odd because you start to crave healthy food. I've become so sensitive to fruits and veggies. I can touch a grape and tell if it's organic. They're so smooth because they haven't been sprayed with chemicals.

Also, for people who have a Vitamix or one of the other brands like Vitamix, green smoothies are really tasty. I add kale, banana, blueberries, apples, and ice. Most people add pineapple to the mix, but pineapple and watermelon are extremely high on the glycemic index, so I avoid both. (Stole this recipe from the Whole Foods smoothie bar)...

Thank you for sharing your diets, and Carrie, your research is always well done and a pleasure to read.

Best,

K

[Psalm 23]

Kitt,

That's interesting that you should mention moving toward a mostly glutton free diet as that is the most recent change in my diet. Actually only in the past few days so I am not noticing a difference yet but am hopeful. Anything not harmful is worth a try. An improvement in neurological function would certainly be welcomed.

Janet

[Psalm 23]

Oh my goodness, I meant gluten free diet not glutton free diet. Lol. Also, no alcohol. Complete intolerance to that.