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p3000g

Pereripheral Neuropathy

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Hi

 

I have tested positive for Deamidated Glaidin antibodies recently. I don't have any classic celiac symptoms, only neurological symptoms like pins and needles and crawling bugs for about 6 months or so. I started a gluten free diet about a month ago and noticed slight improvement in my symptoms.  How long does it take to truly recover from these weird feelings once on a gluten free diet? I know nerves heal slowly , but I am patient enough and want to hear some positive stories

 

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From my experience, it could take well over a year for your body to heal in order to absorb all the nutrients from your food. Some people have symptoms resolve after several months.  I strongly recommend that you be tested for vitamin deficiencies at this point so you have a better idea of how to heal yourself.  Vitamin deficiencies can cause the pins and needles symptoms.  Have you been biopsied?  If so, what was the extent of the damage?  That’s a good indicator of the amount of healing that needs to take place. 

Research natural ways to heal the gut. There is a lot out there, and you need to know your options. That’s great you are on the road to recovery!

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Thanks. No I have not been biopsied yet. Just blood tests. Transglutaminase  normal but Deamidated Glaidin IGG high at 77 (normal below 15). Vitamin (B12,B6 etc) done a few months back were also normal. At this point the prime suspect for  my neurological issues are gluten and allopurinol ,  the drug I am taking to combat another health condition (gout and high uric acid) . I have discontinued it and also gone gluten free, but the symptoms, though reduced a bit, do persist ( though I realize a month is very less time for the symptoms to improve)

 

 

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I still get pins and needles in both my hands and feet on a regular basis and I've been gluten-free for 13 yrs. I'm on B-12 shots and my GI doc is monitoring everything else. I'm healed as much as I'll ever be so, I guess, this is something I'll die with. Hope you don't end up in the same boat.

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I found magnesium with the B-vitamins helped the pins and needles....mine felt more like burning needles on fire though. It took over 5 years for me to get a great amount of my dexterity back, it mostly manifested in lack of sensitivity to hot/cold, and sharp touches (cuts/stabs) along with a slight delay in reactions (Did not effect daily life, but I had to give up competitive video games). I have regained sensitivity to heat/cold, and can feel when I cut myself now days, working with tiny things or playing games is much harder then it should be with a noticed delay and issues with coordination.
Now I also had some brain damage from the ataxia that to this day never healed.

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1 hour ago, p3000g said:

Thanks folks. Did anyone try alpha-lipoic acid for their neuropathy? I have heard a lot of positive things about it. Any other supplements other than alpha lipoic acid and B vitamins ? (B12)

Maybe a gluten free complete multivitamin/multi mineral. That is what I take. 

 I also take fish oil. I have gout and celiac and some neurological symptoms, but nothing major. For myself it isn't nerve related. A lot of people with brain related symptoms are very sensitive to small amounts of gluten. I eat just fruit and vegetables and meat and take some vitamins. 

I would get your uric acid levels checked frequently. If you have gout, like myself, high uric acid levels in the blood can lead to increased inflammation. 

For me eliminating all trace contamination of gluten as well as avoiding alcohol and other grains- suh as oats-  and nightshades -I think- seems to help a lot. 

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On 11/5/2019 at 12:09 PM, p3000g said:

How long does it take to truly recover from these weird feelings once on a gluten free diet?

As an infant back in 1976, it took my son 6 months on Nutramigen Infant Formula. As an old man it's taken me 6 years. Of course it took me 40 years to recognize that gluten was the problem, then 5 years to recognize that stopping the poison (gluten) was only the first step. It takes time to heal the damage already done, but to do that you need sufficient intake of all of the 40 or so essential nutrients. Consider them the tools and supplies our bodies need. Drugs are not the answer, although maybe necessary because of damage done already. This is a nutrition problem with subsequent systemic effects.  A carpenter cannot work right without hammer and nails and material. Our bodies cannot work right without minerals and vitamins, protein, fats and carbohydrates, many of which are deficient in our diets anyway; and then if you add in Celiac...well, think about it. With my son it was easy because as a 3 month old infant his diet was limited. As an adult it is harder because we consider it our God given right to eat American food, our entitlement; so first we have to mourn our dietary losses, stop eating gluten and start to eat a nutrient dense diet. And because a Celiac patient's digestive system is often severely compromised by the time of diagnosis, he may well need to supplement them, at least while healing. In addition, vitamin and mineral testing is expensive and many of the tests are only scientific guestimates.

It is always two steps forward, one or two steps backward  At least there is hope. Never lose hope. Tomorrow is only a day away.

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Thanks for all the valuable suggestions folks. Nowadays I view gluten as poison. Just a few months ago, I was loading up on everything whole wheat (pizzas, subs, sandwiches , buns , bagels you name it), thinking that I was eating as healthy as possible. This food and nutrition industry is partially responsible for our condition. Who gave them the right to make blanket statements on what is healthy food and what is not? One person's medicine may be another person's poison

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2 minutes ago, p3000g said:

Thanks for all the valuable suggestions folks. Nowadays I view gluten as poison. Just a few months ago, I was loading up on everything whole wheat (pizzas, subs, sandwiches , buns , bagels you name it), thinking that I was eating as healthy as possible. This food and nutrition industry is partially responsible for our condition. Who gave them the right to make blanket statements on what is healthy food and what is not? One person's medicine may be another person's poison

-_- I completely agree, after all this crap I came to research and learn that the Paleo diet is the most natural diet for humans that we are evolved to eat. Heck we are genetically evolved to rotate on a keto for part of the year. And here I am now forced on a Paleo and Keto diet if I even want to live after my system broke.

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D3 and Lithium helped my anxiety, iodine improved my upper body muscle tone, choline clearing lipids, iron with fatigue, folic acid (ubiquitous in processed food) is not processed in our body like folate and is linked to increase of prostate cancer and other diseases. DHEA improved my general well being. Chromium; control studies show it lowers A1C. Potassium you need the equivalent of 6 bananas a day. If your belly is extended you put excess stress on the cargo net that holds your organs in place and it is full of major nerve bundles and veins and arteries that will refer pain to all kinds of weird places. And as your health improves, those pressures will move and refer pain elsewhere, the important good thing is the focal points of pain keep moving. My healing worked its way down starting with my hair and through my intestines and I've only gotten halfway through the list. There are 41 vitamins and minerals. Compare your intake to what NIH says it should be and adjust your diet and supplements. The box label states a percentage of the RDA minimum needed for minimum health. Don't be fooled again. You need closer to the max to promote healing. It is good that you caught it early.

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