Changing eating habits
 

Hi All,
I don't come on alot so I should start for those who don't know by saying I have SFN, idiopathic. I am wondering if anyone has tried eliminating meat from their diet and did it help. I am going to try it. I am going to continue to eat fish. I have added many more fruits and veggies.
I wanted to put down what I eat each day so if anyone has any ideas if I need to add anything I would appreciate it.
I have organic oatmeal with some fruit for breakfast.
a shake for lunch with 4 oz of kefir, a couple pieces each of whatever fruit I have. Usually strawberries, pears, blueberries, banannas. I put in spinach and a tbsp of Vitamineral greens (Which really gives me energy for a few hours).

For dinner it is veggie, fish and sweet potatoe mostly.
I just started this about five days ago so I will find different things to add.
Weird thing is I am gaining weight all of sudden (even before I started this) and still am not losing. Strange:confused:

I also take Meds, Cymbalata, Snythyroid and Tramadol, R-Lipoic Acid, multi-vitamin and probiotic. They have recently started me on trileptal but I stopped it. I can't take these meds I swear they make me worse. Actually, though I feel like I am letting my doctor done. He keeps trying different ones and I keep weaning myself off. I can't take things that make me feel sick. I also get Ivig once a month.

Mrs. D and others can you think of anything else I need to be taking. I have added in some beans and nuts. I still can't give up my dark chocolate either.

Any help will be appreciated!:)
Kim

Sounds good to me what you are trying.

Fish will provide some Omega-3s too which our nerves need to repair.

I personally don't have problems with meat. But I do get really tired of chicken.

Keep us in the loop with your progress. Eating simple, whole foods like you are doing is best, always.

Don't forget some type of beans, Edamame are good and so are black (easy to digest). They provide magnesium and so does that dark chocolate you have! ;)

Not eating meat was what I think started my problems with CFS. After a few years, I was left with NO b12 after a test. I was so ill with vertigo and so many problems. I would never do it again. If you do this for a long time, the reserves will be used up. Thankfully, you do have reserves to help for a few years.

You have to be SO careful and test b12. Get a quality protein powder to make sure you get the amino acids, iron, zinc, protein since the bioavailabity is reduced. Muscle mass is reduced. Taurine, carnitine, etc can be found in eggs and dairy but not usually enough. I THOUGHT it would be.

Glutathoine is so important also. NAC is good to raise that and whey protein helps it.

Carnitine is also important. You can supplement that also. So many problems come if these are not supplemented. I wish I could do it all again, but now I make sure I include a wide variety of foods and meats. Good you are eating fish for sure. That helps.

Just be careful.

For me, I would not get rid of meat, it doesn't cause me any problems. It is the carbs that I got rid of because the carbs make my pn worse.

Have you tried eliminating carbs first?

Have you tried taking Benfotiamine? It's a life saver for me.

Yes, many of the carbs are of no value. I eat foods that have a lot of different ways to nourish and heal. I eat good carbs.

Hi I also have SFN Idiopathic.ugh! no cause for me yet, anyway.
Its good to read you and many others write "heal" . Do you truly believe we can heal? Sorry im just overwhelmed and depressed. I can not for the life of me understand where this "horrible painful illness" came from. I was always healthy and active until one day 2 yrs ago I started having pins and needles in my legs and burning feet at night, its been down hill from there, its all over now.
Im taking many supplemets , even tryed metanx for 2 mos still have many pain symtoms. Tryn lyrica now, can not get past 50mgs once a day, side effects are harsh. I'm feel so hopeless. Any suggestions would be greatly appreciated . Thanks..

I believe I can heal, I also believe in the ultimate healer.

I also believe we do things to our bodies that make us sick and need to take charge of our health and healing.

PN made my life horrid, no doubt but I will say this, it made me take control of my health in a way that gaining 100 pds never did. I have lost weight and exercise and I am now healthier, happier, and wiser since having PN. While I am not "healed" I am healthier and thankful in a way for this journey.

Many of us can heal. Those with hereditary CMT, cannot.

Thanks a bunch for that one mrsD. It is appreciated. :)

I'm not sure why you are eliminating meat, but not other animals, like fish.
Personally, I have not eaten dead animals for over 35 years, and feel much better for it; for me, it is largely an ethical issue. There are, of course, health issues, as well. For years, my brother has made fun of my vegetarianism; I refrain from commenting on his open heart surgery, stent insertion, etc. I prefer my way.

I have been fairly overweight for years, and have recently dropped 50 lbs by eliminating all gluten from my diet. I recently learned about my gluten intolerance, and the damage it has done to my body, including the destruction of my peripheral nerves. While I'll be the first to say that It is damned inconvenient to be a gluten-free vegetarian, I am convinced that it's right for me. It does take a lot of effort in food preparation, as well as research for proper nutrition. I do consume dairy, and take a great deal of B12, glutathione, etc.

The weight gain you mentioned may be caused by many things, including medication. Be careful about consuming too much fructose; a diet high in fruit may not work for you.

Good luck in your quest.

I do not think I have CMT, so Im assuming all my bloodwork Dxlabs results are correct. Neurol is sayin its "idopathic" I am otherwise healthy.
I know I have to be patient and let vits and supplemets do there job.

Mrs D, you said your take Biotin 10 mgs at night. I ordered Biotin as you suggested. I just have one small concern. I looked up Biotin and it says adults should only take 30mcg a day. Do you think its safe to take 10mgs? , seems like its a big diff in dosage.
Btw do you notice a diff in your hair , says its supposed to be good for hair and nails. :)

I have a biotin thread here:
http://neurotalk.psychcentral.com/sh...&postcount=166

Those not taking lipoic acid may not need biotin in high doses.

But those with lost of taste/smell, may benefit.

The biotin mixed in with lipoic acid is not likely to work, since the lipoic acid will fill the transporter and make the biotin less available.

It is not a critical thing for PNers...but some may benefit from it. The research on biotin is slim compared to other supplements, but it appears at this time to be pretty benign.
I don't get any side effects from mine. I take it at night, before bed.

Hi Mrs D, Makes me feel better that you agree with what I am doing. Before you had recommended grape seed I brought it an never took it. Is it possible to open the capsules and put it in my afternoon drink? Does it change the potency? Also, I can remember why you recommended it? Thanks:)

Hi Stacey, What type of carbs have you illiminated? I really don't eat very many. Mrs. D recommended trying gluten free and I started that about 6 months ago. That did not help my PN but boy does my stomach feel so much better. I had problems with it for as long as I can remember. Actually what is Benfotiamine?:confused:

Hi Marie,
My SFN started just like yours, out of the blue. I thought I was exceptionally healthy. I tried to eat well and exercised 4-6 times a week. I keep looking but I don't know if they will ever find a cause. I agree with Stacey. I am trying to take control of my health. Doctors can be great and caring but they can only go so far. I have a really hard time taking meds. Try not to be too stressed. My neuropathy gets so much worse when I am. I find that since I have started to be healthy I fell better emotionally. At least I feel I am part of the process in my care. Did you started feeling worse emotionally after you started the Lyrica? I couldn't take it because it caused me to be very depressed and I am not usually. It is not like that for everyone though. Many people find it works great. Keep asking questions. There are some really great people here that are willing to help and have great suggestions. :hug:

Hi Steven, I forgot to mention I have been gluten free for about 6 months. I am keeping fish in because I am not ready to give up everything and I figure fish is the best to keep. Do you know which fruits are high in fructose? Thanks!

I got rid of all the simple carbs and will only eat complex carbs.

Simple carbs: all white flour and anything with white flour in it, including pasta, ALL sugar, all the junk food basically.

Complex carb: I will eat high fiber food, I take flax seed, and flax seed product.

Truthfully, I have given up bread pretty much completely. I will eat low carb fagita's instead of bread.

I personally only drink water, nothing else.

I keep my carb intake at 30g a day, give or take.

I will splurge ounce in awhile but not much and if I do, I am reminded right away why I don't. Friday night husband brought home chinese chashew chicken, comes with brown rice. I over did it. Usually I skip the brown rice or eat very little but I was bad and ate it all. I paid in spades that night. My feet burned so bad and NOTHING would help it. Ya. Not cheating again for awhile. :(

Grapeseed extract is an antioxidant free radical scavenger and
is good for inflammation and allergies.

Some of the people over the years at RSD use/used it with some success.

Why open the capsules? It might not taste too good...:o

Apple and pears have the highest fructose of all fruits.

http://en.wikipedia.org/wiki/Fructose_malabsorption

I didn't wanna say this cuz it causes some people to say i should not eliminate a whole food group, but...I don't eat fruit. At least not now. If I do, in the summer I will occasionally eat berries, strawberry or blueberry.

Just to follow-up on some of the comments here--
 

--ANYONE with a documented small-fiber neuropathy that seems idiopathic--that there is not an otherwise "smoking gun" cause for, such as diabetes, autoimmunity, or blood cancers--ought to be tested for celiac disease/gluten sensitivity.

It's still not appreciated in a lot of circles--even neurological circles, in which neurologists should know better by now--that celiac/gluten sensitivity can lead to neuropathy and other neurological problems, either through direct autoimmune assault by antibodies to gluten peptides cross-reacting with nerve antigens, or by nutritional deficiencies as a result of intestinal malabsorption.

At the very least, one should get vitamin/mineral testing (by good, advanced labs that have the ability to measure cellular levels) and a gluten antibody panel.

I have been gluten free for about 10 months. I have read that it takes 6-12 months for vitamin receptors in the gut to regrow after being destroyed by gluten, and then another 2 or so years for nerves to regenerate; so I'm hopeful. It sounds as though you are on the right track.

Eliminating gluten has certainly helped my weight; easing up on fruit in the morning has also helped.
This morning, Dr. Mercola posted an excellent article on fructose, that includes a link to fructose amounts in common fruits:

http://articles.mercola.com/sites/ar...4_PRNLv2_art_1

Glenntaj -- as usual, you are right on target. The only comment I'd add is that the diabetic cause is usually due to gluten; as Dr. Davis says, lose the wheat, lose the diabetes.

[QUOTE=Stacy2012;947282]I got rid of all the simple carbs and will only eat complex carbs.

Simple carbs: all white flour and anything with white flour in it, including pasta, ALL sugar, all the junk food basically.

Complex carb: I will eat high fiber food, I take flax seed, and flax seed product.

Truthfully, I have given up bread pretty much completely. I will eat low carb fagita's instead of bread.

I personally only drink water, nothing else.

I keep my carb intake at 30g a day, give or take.

I will splurge ounce in awhile but not much and if I do, I am reminded right away why I don't. Friday night husband brought home chinese chashew chicken, comes with brown rice. I over did it. Usually I skip the brown rice or eat very little but I was bad and ate it all. I paid in spades that night. My feet burned so bad and NOTHING would help it. Ya. Not cheating again for awhile. :([/QUOTE

OK now I am confused what is wrong with brown rice. I am gluten free also so I eat alot of rice all only organic:confused:

I guess I'm just so sick of taking capsules. As crazy as it sounds it is one last capsule I have to look at in my daily meds. I guess I have to get over that. I think I'll take it right before my shake. I love the idea of it being good for inflammation. Thanks again:)

Brown rice is a better carb than white rice however for me, it's all about carb counts and when i ate too much of the brown rice it raised the carbs too high for me and too many carbs in a day causes my pn to be worse.

It's two different subjects. 1) simple carb vs complex carb and 2) the effects of eating too many carbs on PN.

So, I simply ate too many carbs for my PN even though it was good carbs in brown rice.

But fact is, it is take out brown rice which means it probably really isn't that good. Just like minute maid instant brown rice is not really any good either.

Brown rice and white rice generally have the same amount of carbs per serving and the same amount of calories per serving as well. However, brown rice is better for you because:

http://www.diabetes.org/living-with-...have-less.html

Brown rice is a whole grain and white rice is not. Brown rice has more vitamins, minerals, etc. Eating too much of anything is not good.

Hi Kim! In trying to manage my own idiopathic SFN, I recently saw a nutritionist. I thought she'd tell me to try eliminating wheat or sugar or dairy. But the FIRST thing she said I must do is eliminate all chemicals and toxins. That means anything artificial in our food (hydrogenated oils, high fructose corn syrup, soy lecithin, artificial sweeteners like aspartame, etc.).

So I have not eliminated any food groups yet, but I've been eating a cleaner diet, free of chemicals or artificial additives. It wasn't that difficult--I had to throw out some salad dressings, grape jelly, BBQ sauce and snacks (I'm a salty snack-eater--now I stick with good ol' popcorn). I read labels more carefully, but haven't had to make any huge changes.

I do feel slightly better eating fewer chemicals, though my pain has not improved yet. Next, we'll focus on eliminating certain foods or food groups to see if it helps with the neuropathy at all.

All the best to you!
APJH

Hi Hopeful-

In regard to your post about eating the chinese dinner of chicken cashews and rice. Your dish could have contained texturized vegetable protein with the chicken which might have contained gluten in it. This is often found in chicken dishes at Chinese restaurants. If you have been gluten free for some time, any small amount of gluten cross contamination could have a very strong reaction. If any soy sauce (which most have wheat as a primary ingredient) was in the dish might have given you a big whammy of a response! Out of curiosity, how long did your feet burn for? Hope you are feeling better now!

It was me that had the chinese and I do not do gluten free, so it was not the gluten that caused it. For me it was too many carbs. :(

They burned all night. It was awful.

MSG in Chinese.... many things even when they say no MSG still have them. The noodles especially(LoMein)!

MSG is very difficult for PNers.

Hi Hopeful
Thanks for responding. I always ate healthy. Always ate high fiber food , fish, some meat , fruits and veggies, water and green tea. Never had a weight problem , exercised on TM, long walks and floor work with lite weights. . I thought I was doing everything right but I still got Neuropathy ,with no cause. :mad: Go figure.. I am considered "prediabetic" , (my a1c was 5.7 GTT 167 ). Im believe it was all the high fiber food that caused my predid, altho I thought I was eating "healthy". My Endo dosent think the pred caused the neuropathy. :confused: I have cut back on "good carbs" and have added more meat and nuts, cottage cheese and peanut butter for protein.
All this pain has me confused , angry and now depresssed. I know stress dosent help but I cant help feeling this way. I feel like my body has betrayed me!
Im Still trying to adjust to lyrica, the side effects are still strong only on 50 mgs day. ( 16 days now) Im not sure if the lyrica is making me more depressed or its just me. ( I always had problems with anxiety). Im also afraid that if the lyrica dosesnt help, I may have to stop it. I have read withdrawal form lyrica can be horrid, even slow dosing. Did you have a hard time getting off of lyrica? What do you take for your pain?
Thanks again..

Hi APJH
I was recently dx with idiopathic SFN too. :mad:. Was wondern if you have diabetes or if you saw a nutritionist just for the neuropathy. Still can not find a cause. I was dx with mild prediabetes, but my endo doc said the pred is not causing my neuropathy. I have been using splenda as a sweetener subsitute , since im supposed to watch sugar now. Not sure what to do now since your nutritionist said not to use artifical sweetner. :confused: How long have you had your sfn and what do you take for your pain. some days the pain is just unbearable..any comments or suggestions would be appreciated.Thanks!

Hi Marie. No, I am not diabetic or pre-diabetic. I just went to a nutritionist because I'm trying to investigate any possibility when it comes a cause for this neuropathy. I find it hard to believe a condition like this could be truly "idiopathic"--how could a painful condition just start out of nowhere?

As far as sugar substitutes go, there are some that are natural (unlike Splenda, which is artificial). I think Stevia and Truvia are both derived from natural sources. There's also one called Sweet Leaf that my nutritionist recommended.

I've had SFN for a couple of years (burning, numbness, tingling in both feet, plus some pain in my heels). I was only diagnosed 9 months ago when the pain started to increase. I tried a few different painkillers but I didn't like the side effects (plus, they only helped slightly). Now I go for acupuncture once a week, which takes the edge off the pain enough that it's tolerable.

Best,
APJH

Stacy,
Not all carbs are created equal; have you really been tested for gluten sensitivity?

Unfortunately, your doctor discounts what you put in your body as having anything to do with the results. Prediabetes is often the precursor or cause of PN. It is often caused by gluten sensitivity, which is worse than sugar for your condition. At the risk of sounding too redundant, Glenntaj is correct.
I recommend spending $15 on Dr. Davis' book at Amazon: Wheat Belly.

No, I have not been tested for gluten problems.

But...it was about eating too many carbs because I can eat that exact same meal (have many times) and not have any problems, UNLESS I eat too much rice.

I don't usually eat all the rice, I scoop just a little to go with my chicken and give the rest to hubby but that time I was REALLY hungry and ate it all. Bad girl. :(

We get carry out with Chinese. I have to get a very bland
entree... usually shrimp with snow peas.

I have a little of the rice and put the rest out for the birds.
They love it! I keep it in the frig overnight --so it dries out a bit, and put it out with the bird food. It is very popular with the birds!

Stacy, I'm sure you are observant enough to know that too much rice caused a problem. But there are other things that may have contributed to giving you that effect; things like whether you added more soy sauce with more rice. Rice is a carbohydrate, certainly, but not usually a highly inflammatory one. There may be other things that accompany it that caused your reaction.

Yes, well, Like I said, we eat this chinese almost every single week and I don't have problems, the only thing I did different this time was eat all the rice. :)