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Neuropathy Relief


AVR1962

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AVR1962 Collaborator

Searching today I found some info about various products that can ease neuro issues and was wondering if anyone has tried any of the following?

L-carnitine (I do take this which I contribute to helping my pins and needles feeling)

Alpha Lipoic acid

Gamma Linolenic acid (GLA, also known as Borage oil)

Chromium

this combination taken with magnesium and B complex is supposed to help


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YoloGx Rookie

Searching today I found some info about various products that can ease neuro issues and was wondering if anyone has tried any of the following?

L-carnitine (I do take this which I contribute to helping my pins and needles feeling)

Alpha Lipoic acid

Gamma Linolenic acid (GLA, also known as Borage oil)

Chromium

this combination taken with magnesium and B complex is supposed to help

These are all mostly good, though for you (like me with Sals) I'd watch out for the Borage Oil.I take a little plain Cod Liver Oil instead. Not quite the same, but what can you do?? We are all different in our needs, and those with Salicylate Sensitivity have to be careful of their supplement sources.

I also find taking Chlorella (not from Japan or northern Pacific!! these days due to the radiation), Alpha Lipoic Acid, and NAC with a little plain pure non allergenic vitamin C powder and some gluten-free vitamin E is a help.

Meanwhile, have you tried out a No Fenol like product?? I have yet to take the plunge, after having a problem with a BioBalance product called Phenol Relief 1, but think I should try it. The whole idea is quite different since the No Fenol provides much needed sulpher, whereas the BioBalance gives one the offending material, even if in a very small dose. The Phenol Relief 1 is part of an allergy relief system that absolutely did not work for me and instead made me even more sensitive up until I stopped taking it.

Meanwhile are you still doing the epsom salt baths (foot or full body)?

What type of B complex are you using? Again for myself (as mentioned elsewhere) I have to take the co-enzyme B's on an empty stomach in order for them to do me any good, otherwise I don't absorb them well at all.

Again as mentioned elsewhere, minerals minerals minerals!! Very important for your good neuro as well as bone health. Something we with salicylate problems have to work on extra hard due to increased villi scarring. Again as mentioned too, nattokinase.... or some such similar fibronylitic enzyme to counteract the scarring.

Bea

AVR1962 Collaborator

Bea, thanks for the heads up on the Borage oil. I will let you know how this combo works for me. I have not tried the No Fenol like products. I am taking sulpher in hopes to relieve the buzzing in my ears. It had it stopped for awhile and then came back on my supplements and the buzzing came back. I didn't cut back on the sulpher so I am not sure it was the sulpher that helped the buzzing. I had cut back on my B and my magnesium, bad choice! 10 days later I was a MS mess. Took 3 solid days of supplementing before I was better a week before I was back to where I was before.

I have not had anymore itchy episodes, thank goodness. Did have a strnage outbreak of bumps under the skin on my fingers a while back which I linked to a cajun salt which passed in a few days and have not used the salt since.

I am using WSN Nerve Support B complex, 4 tabs a day as recommended. I had bought some coenzyme B complex as so many here have had good luck but I did not find it worked as well for me as the Nerve Support. This is a product that is used by diabetic and MS patients for relief of their syptoms.

I did increase my probiotic but have not looked into a fibronylitic enzyme. Will check that out. And thanks for letting me know that some sal sensative people tend to struggle a bit more. I knew I was pretty bad and as I read the other posts I think I have realized I was in worse shape than I even realized. There is no no way I would have been able to make it this far without all the supplementing I have done.

I appreciate your help Bea! How are you doing??

Annette

AVR1962 Collaborator

Searching today I found some info about various products that can ease neuro issues and was wondering if anyone has tried any of the following?

L-carnitine (I do take this which I contribute to helping my pins and needles feeling)

Alpha Lipoic acid

Gamma Linolenic acid (GLA, also known as Borage oil)

Chromium

this combination taken with magnesium and B complex is supposed to help

The adminastrator of this board shared this link which goes inline with the article I was talking about ealier in this post: https://www.celiac.com/articles/22711/1/Conjugated-Linoleic-Acid-Protects-Against-Gliadin-induced-Depletion-of-Intestinal-Defenses/Page1.html

YoloGx Rookie

The adminastrator of this board shared this link which goes inline with the article I was talking about ealier in this post: https://www.celiac.com/articles/22711/1/Conjugated-Linoleic-Acid-Protects-Against-Gliadin-induced-Depletion-of-Intestinal-Defenses/Page1.html

That is an interesting article. Thanks for sharing!

I found an eHow article on food sources for CLA. It seems beef, milk, butter, eggs are all good sources, especially if the animal was grass fed. Here's the article:

Open Original Shared Link

Of the plain oils, sunflower and safflower have the most CLA. Pretty interesting, eh, since those with salicylic acid sensitivity have to use these oils to the exclusion of most others.

Bea

YoloGx Rookie

The adminastrator of this board shared this link which goes inline with the article I was talking about ealier in this post: https://www.celiac.com/articles/22711/1/Conjugated-Linoleic-Acid-Protects-Against-Gliadin-induced-Depletion-of-Intestinal-Defenses/Page1.html

That is an interesting article. Thanks for sharing!

I found an eHow article on food sources for CLA. It seems beef, milk, butter, chicken, eggs are all good sources, especially if the animal was grass fed. Here's the article:

Open Original Shared Link

Of the plain oils, sunflower and safflower have the most CLA. Pretty interesting, eh, since those with salicylic acid sensitivity have to use these oils to the exclusion of most others.

Bea

AVR1962 Collaborator

Searching today I found some info about various products that can ease neuro issues and was wondering if anyone has tried any of the following?

L-carnitine (I do take this which I contribute to helping my pins and needles feeling)

Alpha Lipoic acid

Gamma Linolenic acid (GLA, also known as Borage oil)

Chromium

this combination taken with magnesium and B complex is supposed to help

Bea, what do you know about Alpha Lipoic Acid in connection to mercury in the body? I decided to buy a book about nutrients for neuropathy and one of the readers had the following review:

Most nutrients he mentions will help most people with PN. But there is one to beware of. Alpha lipoic acid is actually a great antioxidant and has been shown to be helpful in short term studies for PN pain. The problem is that if you have heavy metal toxicity (mercury) you need to be very very careful. ALA can definitely cross the blood brain barrier, and it can also bind to mercury, i.e., it is a chelator. If there is a lot of mercury in your body, as from mercury amalgam fillings in your teeth that are constantly releasing mercury, ALA can take more of it into your brain, and will likely bring on worsening of symptoms. To prevent this, it needs to be dosed on the chemical half life (which is 3 to 4 hours), and started at low doses. It typically doesn't make you worse until several months of use, (and this is why short term studies don't pick it up)thus it is difficult to make the connection. It happened to me, and it took me a long time to figure things out. For more info read Amalgam Illness by chemist Andrew Cutler PhD, or join the free Yahoo health discussion group frequent-dose-chelation.


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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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