[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

[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

[daniella]

Thank you for sharing Mrs D. This makes me wonder more about things one may not think impacts them but does in environment,diet,etc. No wonder I live in fear.
Glad you found though what was bothering you so that you could stay away from those items.

[tinaanne]

It has been a couple weeks since I posted and I'm so thankful that I got a few replies. It is such a comfort that someone understands the level of discomfort that we are all in. First answer - the doctors that did my testing concerning food started with my Natural-path MD doctor. He does things out of the box and sent me for the food sensitivity testing through a company called - US biotek and for testing at the cell level a company called Spectra-cell Laboratories. As for me I tried to "cut back" on sugar and gluten with little results - but when I went totally on the cave man diet (lean meat, veggies, fruit only) I realized how much better I felt. Someone mentioned potatoes and I have learned that they are one of those foods that causes inflammation in the body, so i try not to eat them very often. I sure wish I liked NUTS. I have never really enjoyed them, and I know how good they are for you. As for the shots verses the pill form of vitamins, I STILL take most of those vitamins in pill form, but for me I know it just helps. I know stress burns B's and when you are in chronic pain that is a lot of stress. I just recently moved from the desert of Phoenix to a more temperate climate, and hopes that my summers will be more enjoyable. Thanks friends!

[mrsD]

I think nuts are an acquired taste, esp unsalted ones.

I have found that if you are hungry enough...they are delicious!

I prefer to get much of my magnesium from nuts, rather than the laxative oral mag tablets. (I am super sensitive to magnesium oral). Nuts are also high in other nutrients like Vit E, and many minerals etc.

http://nutritiondata.self.com/facts/...roducts/4357/2
this is an example for a fairly large serving of peanuts.

So nuts are calorically dense, you have to be careful with them.

[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!