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Specifically what are people eating?
Hi. I'm currently beginning my NP journey. Probably Vitamin deficiency based, with any alcohol not helping. If you want to say Alcoholic Neuropathy, then so be it, I won't argue it. I was also on PPI's with lots of Tums each day and had no idea that they could stop you from getting your b12 from food.
Anyway....... Right now I am not eating enough and am losing about a pound a day which is not good. I'm not always hungry anymore, especially when the pain is bad, but when I am, I know I need to eat more. I want to eat food that is healthy as over all I want to drop another 45 pounds this year as I feel that can only help me, but I also need to have times that I'm eating. Right now I am only eating as follows. A bowl of oatmeal in the morning, sometimes with some strawberries in it. One meal at night, like a piece of baked chicken with some broccoli and green beans. Sometimes that meat is fish. I also sometimes snack on mixed nuts or peanuts and then of course, lots of regular water. That's pretty much it right now for days. I just don't want to eat anything that will cause pain! Take tomorrow for example. My mom is in town to help me out, and my brother wants to take my mom out for lunch and I can go along if I feel well. But what could I eat? A hamburger? With or without the bun? With or without cheese? Is the tomato OK? Maybe some ketchup? I can do without ketchup. Maybe add some avocado? The fries are probably not a good idea, right? If we went Tex Mex, and I ate a steak, which I'm' not sure if I should, would the beans and rice be OK? I probably shouldn't' eat any chips and salsa, right? I"m not sure what to do. Where do all of you PN suffers eat when going out and what do you eat? Meanwhile, there is my daily diet. Specifically what veggies to people eat? What fruits? Specifically what kinds of meats. Is pasta bad? What about tomatoes or tomato sauce? Do you all have a cup of joe and does that flare you PN? Bacon and eggs? Do any of you eat any bread, or is that a big no no. Milk or dairy based stuff? What other foods? What is very bad to eat as it flares your PN? Are artificial sweeteners bad for my PN? So far all I can find is people saying, eat Paleo, or eat Zone, or Mediterranean, and that is all good in the long run, but I need to eat right now. Sometimes when I am hungry, I am so hungry, and I need more then just more chicken and broccoli. Please help. Specifics are great. Like actual lists of foods to eat or not eat that won't cause any additional pain. I don't want to pay the next day. Thanks you! :-) |
Choices of foods, may become important if you have intolerances.
Hot sauces, salsas, lots of tomatoes are not tolerable for some people (including me) because they increase burning nerve pain. If this is true for you, then you will have to avoid them. Do an elimination diet of them for 2 weeks and see what happens. If you improve, then when you use hot sauce again, you get a flare, that will be your answer. I try to follow the Zone diet. It has shown good response for sugar control, and has been around a long time. It is moderate and allows you to eat rather normally with just some balancing of types of carbs/protein/ good fats. Do an elimination of gluten, this same way, and dairy to see if you have some intolerance to them too. Do the eliminations one at a time, for clarity. If you don't have a gluten problem, you can have some breads in moderation. I'd avoid ice cream, and high sugar loads though. You can switch to another eating plan in a month or so if Zone doesn't agree with you. One thing I'd be careful of is eating junk food. Eating MSG in that junk food also. There is new research suggesting junk fast food actually causes autoimmune diseases... http://neurotalk.psychcentral.com/thread230822.html autoimmune diseases, lead to neuropathies. Learning to make simple meals can be done at home. Just watch for MSG in processed foods (Doritos, some soups, etc). You will get the hang of it. I suspect your sudden weight loss is water weight. That will stop in a week or so, as you plateau out. I am sure others here will give you advice too. So keep your mind open to ideas, and choose what will work for you. |
Coffee causes instant burning for me and I would avoid artificial sweeteners regardless. I also avoid sugar including simple carbs that convert quickly to sugar. I can usually get away with a small amount but if I overdo it I pay for it.
Avocado is a great addition to meals. If eggs work for you an avocado omelet is delicious. |
Great info so far! :-)
I'm also looking for specific lists though as well. Like do you eat any bread? Do you eat any pasta? Do you eat tomato's or tomato sauce. Do you consume any dairy or dairy products. What kinds of fruits do you eat pain free? How much sugar is too much for you? Can I only eat foods with zero sugar? I know it's a lot of work to type of this kind of stuff, and yes, peoples list will vary, but I imagine tons of people would love to know what other PN sufferers eat and don't eat. I have no problem looking into types of diets down the road, but when a person is a new suffer, we need some specifics today. Lists of what works for you and doesn't are very helpful. I"m not trying to create a bunch of work for anyone, but if a few people out their like to type, then feel free. I have scoured the net looking for some specific lists and it seems like no one has every just said, this is what I can eat, this is what I can't. :-) |
If you know your blood type, you might look at this site - http://www.dadamo.com/ - to see if foods fit or not for your type.
His books are in most libraries also. I found many foods that I knew gave me some problems on the "bad" list for my type. And it lists the best foods and neutral foods for each type.. It may help you find best foods for you, and what to avoid. |
Here's a thread that might be useful: http://neurotalk.psychcentral.com/thread230343.html. A paleo ketogenic diet has done wonders for me and several others whom I've met. I have a long post on that thread. The most important principle of all is to listen to your body. A great way to get in touch with your body is to go on such a healthy, restrictive, but therapeutic diet like the paleo keto and then after at least 1-2 months (I'd say 6 to be safe) very slowly introduce foods and food groups. I didn't eat out for 6 months, and since then only twice and nothing that broke the strictures of a paleo diet. I also lost about 50 lbs without calorie counting, and often eating 4-5000 calories per day. Good luck!
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Specifically what I am eating
That's a hard one, not because of typing or time but because food intolerances as MrsD mentioned can come into play. These can be different for everyone and not necessarily a common trigger for PN. One way to figure out if you have any of these sensitivities is to eliminate an entire group of food such as dairy or gluten and then introduce it back slowly and see what happens. I am going to have "Allcat Testing" which may show me what foods I need to leave out of my diet.
So here is my food list. I eat a "modified" paleo- keto type diet. I have recently given up dairy and will be introducing it back slowly in a few months. I also am limiting eggs and nuts right now so I don't have them on my list. Gluten does not seem to bother me so I'll have an occasional sandwich with whole grain bread, but not on a regular basis. Protein: Fish. Preferably eating anything that is caught wild like cod, flounder, halibut, mahi-mahi, salmon, snapper, trout, and tuna. Meat. Beef, Veal, Lamb. Grass fed is preferred. Poultry. Chicken, Duck. Free range or organic is the best choice here if possible. I don't eat Pork because I don't like it. If you eat it I'd watch out for added sugars in ham. Vegetables: Arugula, Artichokes, Asparagus, Bok Choy, Broccoli, Brussels Sprouts, Cabbage, Cauliflower, Chives,Collard greens, Cucumber, Endives, Fennel, Garlic, Kale, Leeks, Leafy Greens, Lettuce, Mushrooms (All Kinds), Onions, Parsley, Pumpkin, Rhubarb, Romaine Lettuce, Scallion, Shallots, Seaweed (All Sea Vegetables), Spaghetti Squash, Spinach, Tomatoes, Turnip Greens, Watercress, Zucchini, fermented vegetables like Kimchi, Sauerkraut Fruits: Avocado, Blackberry, Blueberry, Canteloupe, Kiwi, Olive, Lemon, Lime, Raspberry, Strawberry Oils: Avocado Oil, Coconut Oil, Olive Oil and Butter (Butter only if you tolerate diary) Spices: Salt, pepper, basil, thyme and most others. I do not use cayenne, tumeric, chile pepper or herbs that are too spicy as they trigger me. Beverage: Water with lemon, herbal tea (Camomile, mint) AND 1 cup of Joe in the morning with 1/2 & 1/2 AFTER breakfast to negate the burn! I love coffee :) Other stuff:: peas, lentils, hummus, squash, sweet potato, brown rice Occasional foods: Whole milk unflavored Kefir, butter (Not Margarine), Pistachios, eggs, whole grain bread As you can see I eat a pretty varied diet. I was pretty strict in the beginning but now if I stray as long as it's not a lot I don't have problems. Hope this helps! |
For me, I avoid sugar (can handle fruit sugar to an extent), gluten, rice, artificial anything and bottom feeding fish (shrimp, crab, etc). these seem to be the killers for me and lead to major flare ups. I stick to lean meats, chicken, pork and turkey, non-starchy vegetables, nuts and healthy fats (I can tolerate dairy). I take supplements for any areas i feel I am not getting nutrients because of my eliminated foods.
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Rule of thumb
Don't eat anything white except Cauliflower. Low carb instructions from my Neuro as my PN was diabetic in nature. Good Luck, Ken in Texas.
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Thanks pinkynose, naturally I fully appreciate all of the responses from everyone. Thanks all! Your post however was a bit more along the lines that I was hoping for. A spoon fed list that I can use as a starter blueprint. Very helpful! :-)
A few followup questions for you. How long have you had PN and where and how bad, and how much better or worse is it now, if you don't mind me asking? Were you able to eat more things as you have come along or something? What do you mean by "AND 1 cup of Joe in the morning with 1/2 & 1/2 AFTER breakfast to negate the burn!" So after you eat it the food helps or something? Some PN suffers I think mentioned not eating tomatoes? Does that sound right or did I just think that up for some weird reason? Does butter upset your PN? Does fat in general? You said "I also am limiting eggs and nuts right now" Why? Does that hurt you, or other PN suffers? How do you handle eating when not at home? I would love to see some others come up with their own lists like this for not just me, but the many other lurkers here who I am sure would love the help. If ya want to. :D |
DallasGuy,
If i could just give some small advice. This isn't a one size fits all sickness. Unfortunately, you have to see what works for you. Everyone is different. I tried pointing out things that i thought were more general. the white carbs seem to be an issue for everyone because they are evil for our cellular makeup and directly irritate nerves. There are many other things though that some people have no problem with and some who can't bear them. i know people who have neuropathy and are able to basically eat whatever they want. They are also pretty drugged up. I dont wanna be drugged up so I can eat ice cream every other day. i can live without it. Oddly enough you will see that when you eat in a way that your body reacts well to, your labwork will usually reflect it. Once I made significant changes i saw shocking improvement in my bloodwork. I finally got a diagnosis 8 months ago. In my case I stopped taking a statin and my symptoms stopped progressing (A statin which i really didn't need anyway because cholesterol is not as evil as we have been taught but that's another story). So, for me i have damaged small fibers but no other progressive nerve issues. So, my way of eating was a learning process, trial and error and it evolves every day. I try new things now and then and learn what i can or cannot do. In my opinion, that's what you will likely have to do as well. Some folks have to eat a certain way becuase its diabetes induced, some alcohol induced, some toxic, medication induced.... There are so many possibilites. |
Some people become allergic or intolerant of eggs. This is because eggs were a foundation for the manufacture of vaccines.
Also an uncommon condition called hereditary angioedema can be triggered by eggs (and also fresh fruit). So far I can tolerate some fruits a little bit (apples and pears are out), and a few eggs/week. I was newly diagnosed with this late in life, after a common blood pressure drug, lisinopril, gave me a serious angioedema spell. Coffee and tea have caffeine...but also tannins which are acidic. They also trigger serotonin in the GI tract and some people are sensitive to this. Serotonin will increase gastric and intestinal motility. When changing your food to a new style of eating, be patient. It takes time for you to learn and implement eating a new way. The food enhancer MSG will stimulate the NMDA pain receptors, and so will Nutrasweet which has aspartate in it. This is why people with nerve pain should avoid them in processed foods. Since you have recently had a spell of pain, I'd pay attention to what you crave now, and what you did on a daily basis, and what you ate each day to see if anything sticks out. The way many food intolerances work, is that they make you crave what is actually causing you problems. Reaching for that hot sauce or tomato based food all the time, alcohol, sodas, orange juice gluttony, candy bars...etc, are hints to avoid for a while. What others eat or can tolerate, doesn't really pertain to you. Your reality may be that you have a virus infection, which will remit in time, leaving you in better shape. So the diet changes at this point are only for future maintenance, etc. Also tramadol may not be effective at 12.5mg. 25mg does work for me. Tramadol is not instantly effective either. It has to be activated by the liver to its metabolite which is what is actually working for pain. So taking it may need 2 to 3 hrs to see any effectiveness. People taking high doses of it regularly, reach a steady state and do not notice this delay. |
Hi DallasGuy!
I'd try to keep this as simple as possible so you don't drive yourself crazy right now. Stress is a big factor in this disease.
I think Ken in Texas had an easy to remember suggestion to not eat anything white except cauliflower. That would cut out white bread and flour, pasta, white rice, white sugar, etc., all which convert quickly to sugar and have 0 nutritional value. You could then add some more commonly shared triggers like tomato and tomato based sauce, spicy foods and sauces, MSG, coffee and alcohol. I'd add to the list caffeinated tea, all sodas, and artificial sweeteners. And finally, be careful with too much fast food. Even their salads have a ridiculous amount of salt. I wish there was a one size fits all diet plan but it just doesn't work like that. Please remember that my thoughts on what I'd do might not be right for you. You'll figure out what works best for you but it will take some time. If you have more questions feel free to PM me and I'll do my best to answer them. Quote:
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Hi. Thanks everyone for your great responses. Much appreciated. :D
I hope I'm not coming across as pushy. I reread every one of my posts many times before submitting so that they can hopefully be read as positive as possible. The only reason I was pushing to know what others are eating specifically was to give me a base to work with. If ten people say they are on ten different diets, like zone, or paleo, or meditranian, ect, then now I have to try and learn ten different diet plans and compare them. And obviously that isn't going to help me out this week, and I do need help. I'm basically just eating the exact same thing each day, and all together that is well under 1000 calories a day. In fact the only time I ate something really different was yesterday, and yesterday was horrible. I'm just desperate because every day my weight is going down and that is having a bad effect on my body right now, as well as my mind. This thing has come on so quickly on me. I was completely fine a month ago, and now I'm in hell, and so if I can try and figure a few things out like what to eat, that would be a big plus for me. Pretty quickly I'm going to be down 20 pounds since Jan 1st. I'm not trying to be pushy, I'm just trying to figure out what I can eat, so that I can eat. Anyway, I hope people can believe that if nothing else, I am very appreciative of everyone's help and mean no offense. Thank you to all of you who have responded to me. :D |
You need to eat more calories per day. You should be at least at 2000 a day for male. Starving is not good for you as you cannot get nutrients to repair yourself. Get some breakfast steaks, or chicken breasts to bake or broil, and frozen veggies.
Birdseye makes several nice simple mixtures, without sauces (which may have MSG in them), for you to start with. Your goal now is just to find your trigger. Usually PNers find that something in their daily life has pushed them into this malady. Something they do (like straining themselves with too much or too many extreme forms of exercise), exposure to toxins in solvents or the air, too many vaccines, viral and/or bacterial infections, alcohol, diabetes, kidney disease, hepatitis, food allergies or intolerances, thyroid derangements, ---there are so many possibilities. Right now it is not difficult to find foods. You can eat in moderation (unless you find yourself gluten intolerant) some breads. Starving yourself for some "diet" seems too radical for a beginner. You can start by eating 1/2 the bread you would normally eat. Then pare that down week by week as you get used to less. Keeping a journal would be helpful as you can look back to what you ate yesterday and the day before to track your symptoms or improvements. Pace yourself, and make changes over the next weeks. It is too difficult to jump in and try to make sense of what will work for you. This link may help you alot. I have this book, and found it very sensible and intriguing. http://obesitysanswer.com/ While it targets overweight people, it explains how food intolerances make you sick, make you overweight and unhealthy. It explains the food groups that are the biggest culprits. example: The Lily Family (onions and garlic), The Nightshades (all peppers --hot and not--, paprika, tomatoes, potatoes, eggplant) Dairy, gluten, chocolate are the most common to try eliminating one by one (and reintroducing), to see if they disagree with you. Over time people can discover what bothers them and fix that. I bought my copy years ago at Amazon...it is a trade paperback and not expensive. Sometimes you can use the used book feature and save alot of money on Amazon. |
I love lentils. I could eat them for every meal. Red lentils, green lentils, brown lentils, lentil soup, whole lentils- I could seriously go Bubba Gump on lentils. I may go almost exclusively lentil for a week or two as I have allowed some trashy foods to enter my diet. Some of those white foods mentioned.
Cauliflower is a staple too, when not in a blighted state. It has been expensive here. We roast it with olive oil and salt. Delicious. I eat small meals. I hate feeling full and my system doesn't tolerate it well. I eat a lot of nuts for protein as well as hummus. I love hummus. I would suggest eliminating the usual suspects- tomatoes and other nightshades, though I do not have problems with them myself thankfully. Wishing you the best, Jon |
We understand
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My b12 test came back at 450, but that might be high as I had been trying to take some b12 in the few days before, but not anything high potency. I had been off the PPI's and tums for a while when that was taken, and I firmly believe that, those things more then anything might have been my downfall if this is some kind of vitamin deficiency thing.
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Specifically, everything, except things that don't agree with me (beans in large-ish amounts) and things I don't like (lamb and sheep products),
I do not have Celiac's, only allergic to lamb and sheep products,, and am pretty lazy these days when it comes to doing much 'cooking'. Everyone seems to be on some food or another avoidance plan. What i eat isn't important except that i don't eat too much. And sugar and flour set up cravings, in me...alas....so i do my best to avoid them Best of luck! Hugs, ElaineD |
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Breakfast: Three whole eggs over easy, oatmeal (Half cup before prepared), with 3 packets of equal in oatmeal. Lunch. Two chicken thighs, broccoli Dinner. Some kind of meat, maybe pork loin, or steak, and then maybe some greens beans with a bit of onion. I'm not huge on eating fish as I was used to eating it with tarter sauce and eating baked fish just plain is rough to do for me. Snack: Peanuts or Mixed nuts Seasonings. Some sea salt, pepper, garlic powder, rosemary, thyme. Now that avocados are in season here, I am trying to eat a bit of that as well. It's funny how nice eating it was. It shouldn't be that big of a deal, but eating a bit of avocado tonight was a big deal as it was different, and different is good. lol I read it's good for myelin sheath repair. Not sure how many calories all of this is. Maybe 420 breakfast, 500 lunch, 500 dinner and then maybe up to 300 calories in nuts. This will hopefully keep me from losing all the weight now as I was at the grocery store the other day and had to go back to the car as I was getting faint. Granted I had just gone on a walk, but it wasn't like it was a super long walk or anything. Some questions. If I wanted to buy a bun to make a hamburger, are there any bun suggestions? Sugar free whole wheat buns or something? Two, I would like to put something on it as not using any condiments is killing me. Would I be better off using a slice of real cheddar cheese, or a small amount of ketchup, or maybe a smear of mayo? Which one do you think would affect my PN the least, if you had to take a guess based on your own PN history. I know that your response wants to be that we are all different, but I'm still curious. What condiments if any are some of you with PN able to put on food with out bringing on pain? Also, I'm taking 5k pills of b12 multiple times a day on an empty stomach, as I've been told here to do. How long should I put in between? I have been waiting an hour to eat after, but how long before? If I have eaten lets say an hour before, would my stomach be empty enough to take one effectively to get the max benefit? Just wondering. Does anyone with PN every eat a slice of Pizza? God I miss pizza! lol Thanks for all of your responses. It's much appreciated. |
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I cant eat Pizza by any means. but, you can literally take a small bite of anything if you HAVE to just get the taste of something. But, ya gotta keep it to the one small bite. Which is usually hard. I took a small bite of pizza on new years day and left it at that. In New York we are spoiled by great pizza on every corner. Its amazing how good some foods can taste when you havent had them in forever. Some foods actually are pretty disgusting when you return to eating them after a long time without.. Most notably, diet soda. Curious as to why you are taking so much B12 daily? |
Happy to see you're eating more!
Thanks for your menu. I can see where it can be monotonous, especially in the beginning when you don't want to do anything that may cause pain.
I'm thinking that if you want tartar sauce for your fish you could try it. You did share that you were into cooking so maybe you could make it yourself? If you could make your own mayonnaise with EVOO instead of the oil that is used in packaged mayo even better! Then just experiment with a small amount like Patrick mentioned and see how it goes. You can try your mayo on your hamburger too. Or real cheddar cheese for that matter imo. Buns: Whole wheat. I usually don't buy anything sugar free or fat free because of added chemicals, but if you have a sugar/insulin problem then you have to look at that more closely. As far as pizza I would hold off because so many are sensitive to tomato based sauces. Not forever, just for now. Of course it's your call. Have you tried some lentils with your meals as a side, not the full course? I would suggest an occasional yam or sweet potato also. Yam's sugar content is lower then sweet potato but sweet potato has more nutrients. So glad you found avocado. I think they're a super food! carol Quote:
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It is best to take B12 first thing in the morning 1 hr before breakfast with some water to move it along to the intestine.
Food can stay in the stomach for up to 4 hours. One 5mg B12 methyl form a day should be enough for you. Switch that Equal out for Stevia... Equal has aspartic acid in it which can stimulate the NMDA pain receptors. |
If you're near a Whole Foods or Sprouts, try a package of one of their gluten free breads/buns. They're really pretty good. Both also have a fairly extensive line of other GF foods. I think Whole Foods has more than Sprouts, but maybe it depends on the size of the store and how much room they allot to GF.
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I would still check out the ingredients
Whole Foods gluten free Light White Sandwich Bread:
Ingredients: Tapioca starch, potato starch, cage free egg whites (egg whites, water, guar gum, sodium citrate, triethyl citrate) , canola oil, brown rice flour, maltodextrin (non-allergen derived), yeast, evaporated cane juice, cornstarch, gluten-free oat fiber, contains less than 2% of calcium sulfate, baking powder, cellulose (non-allergen derived), natural flavoring (non-allergen derived), rice flour, salt, triethyl citrate, vitamin c, xanthan gum. I'm not trying to cause trouble but some of the gluten free stuff is pretty bad IMO. Some of the sprouted grain breads like Ezekiel are a good food choice without all those additives. |
I graze as being retired I don't have to report to anyone and no schedules..
This morning I had a semi prepared salad with some good stuff in it and added chopped celery. I start my day with 1/2 glass low sodium V8, 1/2 water, MSM added and DRibose added and a couple drops oil of oregano. I'm so bored with oatmeal and I haven't had it in along time....Don't bring bread into my house for 6-7 yrs. When I feel I need a sandwich, it's leaves of romaine for the wrap with a burger or chicken or whatever.... I'm really never hungry but I eat to keep up energy and nutrition. Just made a pot of soup...1 can low sodium progresso soup, 1 can low sodium white beans and add my cooked chopped celery and green beans.....I eat soups for breakfast often. Sometimes to the above I'll saute grass fed chicken tenders. |
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