Dietary Changes

[IceLizard]

Hi you all. I watched "Forks over Knives" today which detailed how these scientists discovered how to halt the progress and even reverse heart disease, diabetes, and cancer by switching to a whole foods plant based diet. The people in the documentary felt so much better after changing their diet, It made me want to have one of those diseases instead of the one I have, lol.

My doctor's visit today was kind of disappointing, basically he told me to keep up with the exercises as much as possible. He said that dysautonomia is difficult to treat and that it is just the way I am built. But, to me my present condition is not acceptable. I need to be able to work at least part time for monetary as well as emotional reasons.

I am thinking about implementing some dietary changes to see if that will improve the way I am feeling. First I will eliminate milk. This idea comes from Dr. Peter Rowe who wrote here http://www.cortjohnson.org/blog/2013/08/22/dr-rowe-on-the-hunt-a-search-for-chronic-fatigue-syndrome/ about how milk allergies affected a significant portion of his CFS/EDS patients.

Have any of you had success with changes in diet?

[Alison]

Hi Ice, I was also thinking of posting a question about diet. I'm also thinking of dietary changes. My thoughts for me are:

Try the Atkins diet - I had always thought this was not a good diet as I thought we all needed our complex carbs, but I see that I am very bloated after a meal of carbs, so I've decided to try it, particularly no carbs for my evening meal. I'm wondering whether I'll get enough calories/ energy from this and have been wondering whether I should eat more sugar - I do a lot of exercise, and I feel I need calories for this - for a Potsie is sugar a way of getting this that is easily digested? I'd be interested in people's thoughts on this. I'd always thought sugar was bad.

Try to eat easily digested foods - I'm not sure what these are, I have googled and have come up with chicken, fish and cooked vegetables. I wish I could see a POTS nutritionist to advise on this - I don't suppose there is one.

Try to eat a diet that doesn't stimulate a histamine reaction. I looked briefly on the internet and one of the things you had to exclude was tomatoes which I eat every day, so I'm a bit reluctant, but I think I should try it.

Bio yoghurt seems a good idea that might help with digestion.

Try to eat food rich in nutrients as I think maybe I'm not getting enough - things like chia seeds, avocados, bananas.

I'd love to hear other people's thoughts

[Becia]

The situation I'm in right now is my body tried to shut down last month, so it's having issues with food period. I'm having issues swallowing,because I get choked on just water sometimes. I'm having issues getting my stomach to accept the food, because it went into reverse essentially, and I am constantly nauseated, and vomiting is quite frequent if I get a little overboard with what I tried to eat. I want food, it just don't want me sometimes I guess.

I am currently nearly gluten free, in a hopes that it would be easier on my ibs to tolerate, and kinda will allow me to slide back into normal food. I also am on a soft diet, lots of high lubricated foods to allow my throat to swallow easier, and soft because that seems to be the texture my body doesn't freak out too much too. The few times I've tried to eat "normal" stuff, I've ended up sicker than a dog.

Currently doing lots of smoothies, fruits, steamed veggies, jello with fruit for most of my meals, with my main meal being lunch. I take my time and eat what I can as I can. Sometimes I can eat decently, like today, I had some leftover lo mein noodles and steamed veggies, but yesterday I had reheated some bean soup I made a few days ago, and had some issues with it. If my main meal is at noon, my body has time to "freak out" as I call it, I have the afternoon if my ibs is going to flare and hurt and have me running for the bathroom. My midodrine is in my system, so I'm more able to get up and go if I get sick during the day, but at night, it's a very hard process on me, and it run the risk of hurting myself by passing out/seizing.

[Becia]

Also, I think small meals help too, so I'm not overwhelming my system all of the sudden. I ate noodles and veggies for lunch, waited a bit and still felt hungry, so I had some clementine orange and water. Breakfast was a banana. I'm starving a lot lately, so I'm tempted to try and eat some cottage cheese, in hopes it might tide me over until I figure out how much/what I think I can eat for dinner. I have a hamburger patty and some potato wedges to do something with, but I'm afraid that's gonna be overkill.

[Chaos]

I think there are probably as many diet recommendations as there are people with this disease.

Personally sugar or simple carbohydrates (sometimes even fruit) can trigger tachycardia and palpitations in me. I tend to do better with a relatively higher protein diet and fewer carbs but I can't get away from carbs completely or I have problems there as well.

I tend to stay with a healthy moderate/balanced diet. In part my reasoning has been that my body seems to be sensitive to a lot of things, but if I start eliminating foods, then I'm afraid it'll just start being sensitive to a smaller pool of things. Eventually I'm afraid I'll have nothing left that it's not sensitive to. If I have a larger pool of foods to select from, at least I can keep rotating thru things and limit the overall exposure to any certain type of food...or at least that's my theory. Besides, food is one of the few pleasures I have left in life and I'm reluctant to give it up without some pretty heavy duty proof that it's going to make a huge improvement in my situation.

[blueskies]

I think there are probably as many diet recommendations as there are people with this disease.

I tend to stay with a healthy moderate/balanced diet. In part my reasoning has been that my body seems to be sensitive to a lot of things, but if I start eliminating foods, then I'm afraid it'll just start being sensitive to a smaller pool of things. Eventually I'm afraid I'll have nothing left that it's not sensitive to.

Hi Chaos,

Yep, to the first paragraph

And my experience with a food elimination diet (a very well respected one) has been that my sensitivities are getting worse and worse and the groups of food I can eat has grown smaller and smaller. My skin is now as sensitive as it was just before I went on the diet although I did see initial improvement -- that was what kept me on it. I should have left the elimination diet alone. I had a normal healthy relationship to food just over 10 years ago. Now there's nothing normal about how I approach eating. In some ways the diet has messed with me physiologically and psychologically. (Of course I'm not counting those people who are, say, caeliac for example or those who have allergies, etc. Their need to not eat certain foods is unquestionable).

blue

[IceLizard]

I agree that the best approach is not to eliminate certain foods completely, because you can just become more sensitive to them. This happened to me with carbohydrates back when I thought I had reactive hypoglycemia. (With the exception of foods that you are really allergic to.)

I am sensitive to starches and processed carbohydrates. For example, Subway sandwiches are a trigger: too much bread. They cause my heart rate to increase and me to feel sluggish.

I also have had convulsions and tachycardia in response to glucose tolerance tests where they make you gulp down large amounts of glucose in seconds. So, I need to limit sugar as well.

So I want to increase my intake of vegetables, fruits, and fiber-rich whole grains and reduce but not eliminate my intake of other foods. These foods are not converted to large amounts of sugar quickly so I can avoid the side effects of a sugar rush. I'm also hoping that if my overall system is healthier some of my symptoms will improve.

I am also adding supplements based on some research articles I have read recently. Cod liver oil for inflammation of joints : http://news.bbc.co.uk/2/hi/health/1817974.stm

And Vitamin C, CoQ10, and Magnesium for other Ehlers Danlos symptoms based on this very interesting article: http://www.eds-nyc.com/wp-content/uploads/2013/06/EDSnutritionalSupplements.pdf

Vitamin B complex because I show signs of deficiency when I don't take it. I get painful little ulcers in the corners of my mouth called angular cheilitis when I go without long enough.

@Becia, it sounds like you may be having trouble with Gastroparesis. I hope you can find foods that agree with you and your body.

Thanks for everyone's input

-Hollin

[Becia]

Great, lol, I'm now craving subway because ya mentioned it, lol. I love their salads. I fall hook, line and sinker for a good salad, even though the lettuce is apparently one of the hardest foods for me to handle. My favorite has to be a salad from this pizzeria that has bacon, turkey, tomatoes, cheese, and green olives with creamy garlic dressing.

I got bored in my insomnia and have started watching that documentary. It is very enlightening!

Gastroparisis honestly had never crossed my mind, but perhaps this is something I need to look into. I know my doctors have coined what I have right now as a refeeding syndrome of sorts. I know I tried eating the hamburger yesterday, I thought I was okay until about 10 minutes after, and it all hit me. I threw it up and everything else about 15 minutes after I ate, and still don't feel right. Currently nursing some ritz crackers and water with a stomach pill.