[tinaanne]

Hi Friends - It has been years since I have come to this site, and it is comforting and a bit sad at the same time to see so many of you suffering all these years. I am going on my 12th year with small fiber PN and for many years it was idiopathic - after DEMANDING a glucose tolerance test the doctors finally say "Oh, maybe we have something here". Being labeled pre-diabetic or more accurately having impaired glucose issues was my new cause. JUST because your A1c blood sugar test comes back in the NORMAL range - doesn't mean anything. So I went on and had food sensitivity testing done and found out lots of things. First - I was HIGHLY sensitive to eggs, and eliminating eggs alone caused one of my types of pain to leave!! Then the gluten, sugar and a few other things in wheat were pretty high in reactions too. When I eat NO SUGAR, my life changes. When I add no gluten, my elimination problems are better too. I know so many of you have found out these same things - and I would encourage anyone who has no "cause" for this horrible pain to have food sensitivity testing done. Also, the B12 issues -- the B12 blood test were always "in range" but not sure I was utilizing them so I had some other testing done at the cell level and found out that I was lacking absorption of vitamin D, and few other nutrients -- SO I am now on a injection each week of B12, B Complex, Calcium and Magnesium - and I feel SO MUCH better especially the first few days after the injection. Any other thoughts on what I can do for the Impaired Glucose? It is hard to figure out what to eat - so I don't eat a big variety of foods. Thanks for being here. Tina

[Dr. Smith]

Hi Tina, back, and for your encouraging and informative report!

What kind of doctor does food sensitivity testing?

Many of us here are taking B12 (methylcobalamin) sublingual, 1mg - 5 mg/day (empty stomach at least an hour before ingesting any food). Cheaper and easier than injections (not to mention severe trypanophobia ). I would think the other supplements you mention would be easier orally as well; is there some specific reason you're doing injections?

A lot of us are also taking Stabilized R-Lipoic Acid (100 mg. once/day) w/ Acetyl L-Carnitine (500 mg. 2/day) and/or B5 (pantothenic acid 500 mg. 2/day) to alleviate burning pain of PN. An additional effect RLA has is helping the body utilize glucose, improving blood sugar control and raising energy levels.

HTH,

Doc

[Apollo]

Originally Posted by Dr. Smith

Hi Tina, back, and for your encouraging and informative report!

What kind of doctor does food sensitivity testing?

Many of us here are taking B12 (methylcobalamin) sublingual, 1mg - 5 mg/day (empty stomach at least an hour before ingesting any food). Cheaper and easier than injections (not to mention severe trypanophobia ). I would think the other supplements you mention would be easier orally as well; is there some specific reason you're doing injections?

A lot of us are also taking Stabilized R-Lipoic Acid (100 mg. once/day) w/ Acetyl L-Carnitine (500 mg. 2/day) and/or B5 (pantothenic acid 500 mg. 2/day) to alleviate burning pain of PN. An additional effect RLA has is helping the body utilize glucose, improving blood sugar control and raising energy levels.

HTH,

Doc

.... I have had dramatic blood sugar reductions originally using Alpha Lipoic Acid and then "Doctors Best" R-Lipoic Acid (100mg morning and evening) when it became available!

I love the stuff!

[daniella]

Have you tried nut butter like almond butter? It is more mild to me then peanut butter. I agree though with Mrs D nuts are more aquired. I used to hate them whole and now enjoy certain kinds again basically almonds.
On a side not weather impacts my pain a lot so I hope the move helps you. I moved because of my condition too. There is no perfect and I still have struggles but climate definetly does have an impact.

[Sallysblooms]

Tinaanne, I take many great supplements on a schedule three times a day. I have two integrative MD's that know how to help my CFS, Dysautonomia and Autonomic Neuropathy. Hormones were balanced, all compounded, Thyroid, B12 of course, and many many things I needed. Vit D from drops, lots of things to build up the immune system. I have it all covered and many blood tests twice a year with the Dzugan Program.

The nerves use a lot of energy and are damaged easily by toxins so that is one reason ALA works so well. Takes the toxins out.

The best supplements for the nerves in my feet and POTS (Dysautonomia) have been ALA MAXcr by Xymogen, and Benfotiamine. A better fat and water soluble B1. I have done great with them. I had the A1c, fasting blood sugar tests etc. All was perfect at all times. But, since the Alpha Lipoic Acid and Benfotiamine have done so well for me, the doctor knew sugar/insulin was part of my problem.

I eat fruit of course, but no added sugar for the most part. I have been gluten free for a year and a half for the POTS.

My many supplements have done amazing things for my CFS etc.

Try the Benfotiamine. I use the Life Extention brand on that one, ask your doctor, really is great.

[Geraldine]

Originally Posted by Sallysblooms

Tinaanne, I take many great supplements on a schedule three times a day. I have two integrative MD's that know how to help my CFS, Dysautonomia and Autonomic Neuropathy. Hormones were balanced, all compounded, Thyroid, B12 of course, and many many things I needed. Vit D from drops, lots of things to build up the immune system. I have it all covered and many blood tests twice a year with the Dzugan Program.

The nerves use a lot of energy and are damaged easily by toxins so that is one reason ALA works so well. Takes the toxins out.

The best supplements for the nerves in my feet and POTS (Dysautonomia) have been ALA MAXcr by Xymogen, and Benfotiamine. A better fat and water soluble B1. I have done great with them. I had the A1c, fasting blood sugar tests etc. All was perfect at all times. But, since the Alpha Lipoic Acid and Benfotiamine have done so well for me, the doctor knew sugar/insulin was part of my problem.

I eat fruit of course, but no added sugar for the most part. I have been gluten free for a year and a half for the POTS.

My many supplements have done amazing things for my CFS etc.

Try the Benfotiamine. I use the Life Extention brand on that one, ask your doctor, really is great.

Even after all of my blood sugar tests, including the one they do over 3 hours and drinking that horrible worse-than-gatorade drink, all my tests for anything sugar-related have been normal. But I still think I have problems with sugar. Especially after I drink coke. I also have discovered lately that CREAM or MILK bothers me but NOT CHEESE. Can anyone tell me why and is that normal? Anytime I have something that bothers me, I look and it contains CREAM. And anytime I cave and get a decaf coffee with cream in it, I don't feel well.

[mrsD]

Welcome to NeuroTalk:

I really think you should try Kefir. This amazing probiotic liquid fermented drink (similar but better than yogurts) has 12 organisms in it and may help with some food intolerance.

http://www.lifeway.net/
It stabilizes things in the GI tract quickly. It can be a miracle of sorts. I get mine at Kroger's.

That said, your post is very interesting. You are highly motivated and working hard on your improvements. So congrats on that!

The egg thing may resolve with the Kefir. But if it does not, then I would avoid vaccines since they have egg protein contaminants in them. In fact vaccines may be responsible for later egg allergies IMO.

Fixing the GI tract may improve your glucose control too.

I find using slow carbs like lentils, black beans (red beans upset me), Edamame beans (soy) and peas give a slow control of
blood sugar and really stabilize after meal spikes and control hunger. I eat shrimp too at least once a week. There are some nice organic lentil canned products and soups if you don't want to cook your own. I often mix in broiled chicken breast to them, for an easy low carb meal. I personally like beets... so in moderation they can help satisfy...just not too much as they have sugar in them. The fiber in them slows the sugar absorption and beets have glycine in them which promote lowering homocysteine and provide the methyl group to SAM.

Nuts also keep blood sugars stable. I often just have nuts for lunch..either pistaschios, or simple peanuts. Almonds are high in magnesium but lately my teeth can't handle them like when I was younger...so I've had to do the peanuts. And smaller meals. A snack before bedtime if you retire late, like a Zone perfect bar or some cheese also helps nighttime glucose swings. Typically 1/2 Zone bar (I use the fruit ones as chocolate at night doesn't appeal to me) is often enough. Sometimes I'll have some Kefir. I mix 1/2 unflavored with 1/2 peach to keep the sugar down. I myself have a fructose problem, so I have to watch that or be cramping. Kefir is very satisfying. A friend clued me in on it in Sept, when I was having mega GI agonies this past fall. Now both hubby and I are using it!

Eating high protein breakfasts are good too. I have left over chicken, or steak with a little bread (which I know you can't do), but sometimes mix in the beans with it. Not typical breakfast fare, but one gets used to it. I get the low sodium Bush black beans in a can.

A supplement to try is R-lipoic acid (stabilized form which is new) and at 100mg a day, it also stabilizes blood sugars.
Many of us are using this now, Doctor's Best brand is affordable and easily purchased on Amazon now! Also at iherb.com
This really helps with PN as well.

Watch out for MSG... as it is very bad for PN and pain in general.

I did GF for 3 yrs and it really didn't help me. But avoiding fructose is a huge improvement. I am also sensitive to nightshade veggies, esp potatoes. So I keep tomato very low and avoid potatoes now. I can tolerate some tomato, and use mild salsas sometimes mixed with the beans. But I have to watch that and not do it every day. There is a nice mango salsa at Costco that works for me. There is an alkaloid in potato called solanine which is now thought to be cumulative in the body and not removed...growing more toxic by the day! I got rid of alot of foot burning by avoiding potatoes. Hot peppers also can bother me as they are nightshades too.

So those are some of my tricks. But yes, variety can be lacking!

[daniella]

Tina welcome though sorry of your struggles. Have you thought of seeing a dietician who works with this issue? I have seen many though not around neuropathy but a good one can help but so key to find one who deals with the condition at hand. I am not familiar with glucose issues but I know Melody on here has worked very hard with her diet and has found a lot of benefit. Mrs D also gave you great feedback. I do think eating every few hours a balance is supposed to help?
Dr Smith I am not sure the specific doc but I saw an allergist and holistic MD who did mine.
May I ask you all how you figured out for example Mrs D fructose was a problem and when you say problem what do you mean in terms of symptoms?

[mrsD]

I get cramping and diarrhea within an hour of fructose consumption. I was fasting because of reaction to sorbitol in food, and hadn't eaten anything much in 2 days. One gatorade at 11pm and within minutes was a bombshell. I started avoiding sugar and fruit and found relief. People with dietary fructose intolerance can have "some" if it is along with other foods to dilute it. But eaten alone...it is very laxative in the intolerant person. When I looked this up? -- I found 1 in 3 people have some degree of digestive fructose intolerance! In fact it is implicated in IBS now as a trigger. This explains why for my whole life I could not tolerate Pears and Apples, esp juice of either. These two fruits have the highest fructose content on charts.

Originally Posted by daniella

Tina welcome though sorry of your struggles. Have you thought of seeing a dietician who works with this issue? I have seen many though not around neuropathy but a good one can help but so key to find one who deals with the condition at hand. I am not familiar with glucose issues but I know Melody on here has worked very hard with her diet and has found a lot of benefit. Mrs D also gave you great feedback. I do think eating every few hours a balance is supposed to help?
Dr Smith I am not sure the specific doc but I saw an allergist and holistic MD who did mine.
May I ask you all how you figured out for example Mrs D fructose was a problem and when you say problem what do you mean in terms of symptoms?

[Dr. Smith]

Originally Posted by mrsD

I get cramping and diarrhea within an hour of fructose consumption. .... I found 1 in 3 people have some degree of digestive fructose intolerance! In fact it is implicated in IBS now as a trigger.

Originally Posted by daniella

May I ask you all how you figured out for example Mrs D fructose was a problem and when you say problem what do you mean in terms of symptoms?

Wow. I learned this years ago. There was a time (A long time ago in a galaxy far, far away....) when, after doing a lot of work in the heat and not wanting to drink something unhealthy (i.e. beer!), I'd have a nice big glass of cold cider - Mmmmm - until about 20 minutes later when it would hit me like chugging 3 bottles of magnesium citrate!

I think the empty stomach has a lot to do with it. After becoming deeply entrtenched in middle age, I figured out I am one of those people who can put on weight just by looking at something containing HFCS (and I also get cravings for more - it's an evil conspiracy/plot I tell you! ). It was around then I started learning more about the accursed stuff....

Doc