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    Do you have questions about celiac disease or the gluten-free diet?

Jennhaz

Neuropathy

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Can you get neuropathy only from gluten allergy or is it any food allergy? I had a skin test done yrs. ago and they told me I was allergic to every food out there besides chicken and rice, now come on. Then I took the blood test and it was different I dont even know what was on there. I believe I have neuropathy so am staying away from gluten but wondering if I should be staying away from everything else also. If so what would I eat :unsure: I would not be able to survive. They told me Beef, corn, soy, milk, eggs, chocolate, tomato, potato, wheat, yeast, cheese, coffee, barley, rye, oats. I mean there is nothing left on the food chain here. I was just wondering if maybe other foods could be doing this to me? Thanks..Jenn

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Can you get neuropathy only from gluten allergy or is it any food allergy? I had a skin test done yrs. ago and they told me I was allergic to every food out there besides chicken and rice, now come on. Then I took the blood test and it was different I dont even know what was on there. I believe I have neuropathy so am staying away from gluten but wondering if I should be staying away from everything else also. If so what would I eat :unsure: I would not be able to survive. They told me Beef, corn, soy, milk, eggs, chocolate, tomato, potato, wheat, yeast, cheese, coffee, barley, rye, oats. I mean there is nothing left on the food chain here. I was just wondering if maybe other foods could be doing this to me? Thanks..Jenn

Hi, and welcome. I had severe neuropathy and ataxia and it did turn out to be directly related to gluten. It has been relieved for the most part but it did take a few months. I also saw relief from a lot of my other allergies gluten-free. I would continue the gluten free diet, excluding wheat, rye, barley and oats form everything including your toiletries. Until you heal you may want to limit the other items that you showed sensitivity to and then perhaps try adding them back in after you feel better. I don't know if other foods can cause the neuropathy but until you are symptom free I personally would try to limit the other items also.

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Until your intestime begins to heal, you run the risk of not absorbing nutrients. I had neuropathy before my diagnosis, and it scared me because I had no idea at the time what it was. It has let up, but slowly. I'm almost a year on the diet, and I still get it in my face and arm. With me, it seemed to go away from the bottom up--starting with getting relief in my feet, then legs, etc. I found it helpful to take a multivitamin, vitamin B6 and B12. Now, I only take the multi.

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I had terrible neuropathy in my hands and feet and was almost dx'd with MS, but all of my symptoms are gone completly now that I am gluten-free.

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Patti, my experience was similar. I still take monthly B12 shots, daily oral B6 and folic acid. I very occassionally get neuropathy symptoms now (once or twice a year) but there was a lot of damage to my intestine from 35 years of being undiagnosed and misdiagnosed so I guess it's not too surprising that I'm not always absorbing nutrients properly.

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Hubby until after he began gluten-free diet, but that is just a coincidence as he probably would have come down with it anyway. but now we are 2.5 years on gluten-free and neuropathy is still hanging around. I read that there are genetic connections apart from celiac and/or wheat allergy. Perhaps he would have gotten neuropathy anyway even if he wasn't celiac....who knows.

Neither the B shots, B supplements, gluten-free multiple vitamins nor gluten-free 100% diet is reversing this neuropathy.

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Hi!

Having just been diagnosed with celiac after 30 yrs of severe muscle problems, IBS, stomach cramps, panic attacks in the beginning. I now realize that my father most definitely had to have neuropathy from celiac disease. Then later diagnosed with parkinsons - but I'm sure it wasn't.

It completely breaks my heart that we probably could have done something to help him had we only known. And at that time, 8 yrs. ago, not much time was spent by any Dr. diagnosing his neuropathy, and or parkinsons.

Both my sisters and I have been sick for many years and our chemical, environmental, and food sensitivies are really escalating. Recently, I consulted with a fibromyalgia specialist in Atlanta, Ga., and one of my sisters had decided - after much research and studying on the computer, that we all had to have celiac. And all three of her children are very sick also. My new Dr. said from our very first phone conversation - wheat allergy - celiac disease.

Then my blood tests confirmed mine - not my sisters yet.

We are really reading, studying, and trying to figure out exactly what to eat and find out almost daily that we had slipped up the day before. I'm sure everyone goes through this at first. I'm busy printing out lists of brand names off the computer to make sure we learn exactly what we can eat.

I do have one question, I am feeling worse since starting this diet - almost 4 weeks now. I have slipped up a few times unintentionally, ike Pam butter spray, and flavored Quaker rice cakes, but nothing dramatic.

My chiropractor says I have been sick for so long and my muscles are so toxic, that it could take months for me to feel better, but to stay on the diet - he is also sure that is the answer.

I read a lot of other people's stories that they feel a difference right away.

What do you all think? And were some of you much worse before you were better?

Sorry to go on and on, but could use any help you can give me.

Thanks, Nancy

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Nancy- it's different for everyone, depending on how sick you are and how long you have been sick, it could take a while for you to see any results. You should stay on the diet for sure. My daughters went gluten free before I did, and it took them a while to get to 100% at least 6-8 months, but they were young and heal faster than us. I have heard of people taking up to 2 years to feel any huge improvements.

I have only been gluten free for 2 weeks, and I am feeling better, but they are little things (like my allergies are clearing up, and I am able to concetrate a little better) my big problems are still here, but I have hope that they will go away as I heal more.

The diet is hard to learn, and even a little gluten can make you very sick. Sometimes it's easier in the begining to stick to foods that are gluten free by nature, meat, fresh veggies, and fruits. You may have to do like the girls and I do and carry a small ice chest with prepared foods with you, so you are not tempted to get "convienent foods" that may have gluten or may be cross contaminated. It really is an all or nothing diet. Trying hard to be gluten free is very good, but until you are, every accident damages you more. I know it's tough and depressing, but give it a really good shot before giving up. The change in my youngest from near death to healthy, so healthy that most people can't understand that she has a chronic auto immune disorder, is enough hope for me.

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Nanceysb,

who is the Dr. in Atlanta? My father lives a couple hours from Atlanta. He suffers from polymyalgia and is in debilitating pain. I'm convinced that gluten is his problem, but his gp and neurologist think I'm crazy. I'd love for him to see this dr. it has been a very long road for him. He's trying to come off of oxycontin right now and it's been very hard. thanks!

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Nancy- it's different for everyone, depending on how sick you are and how long you have been sick, it could take a while for you to see any results. You should stay on the diet for sure. My daughters went gluten free before I did, and it took them a while to get to 100% at least 6-8 months, but they were young and heal faster than us. I have heard of people taking up to 2 years to feel any huge improvements.

I have only been gluten free for 2 weeks, and I am feeling better, but they are little things (like my allergies are clearing up, and I am able to concetrate a little better) my big problems are still here, but I have hope that they will go away as I heal more.

The diet is hard to learn, and even a little gluten can make you very sick. Sometimes it's easier in the begining to stick to foods that are gluten free by nature, meat, fresh veggies, and fruits. You may have to do like the girls and I do and carry a small ice chest with prepared foods with you, so you are not tempted to get "convienent foods" that may have gluten or may be cross contaminated. It really is an all or nothing diet. Trying hard to be gluten free is very good, but until you are, every accident damages you more. I know it's tough and depressing, but give it a really good shot before giving up. The change in my youngest from near death to healthy, so healthy that most people can't understand that she has a chronic auto immune disorder, is enough hope for me.

'Smunkeemom', Thank you for your encouragement. Yes, it is very hard, but I know I must do it and do it right. My sister saw an improvement in 2 or 3 days, but I am much sicker than her, and have been for a lot longer. I had two young children, age 2 and 3 yrs. when I first got sick. Now my oldest is 31 and has a child of his own. I am so very sure that my boys both have this too, but during my quest to find out what was wrong with me through the years, I have said to them many times, "this is it!, and you might have it too", so I am sure they don't want to hear that from my anymore!

So now, I think when they start to see improvements in me, they will finally realize that celiac is really the culprit, and so it might be for them too. Although they don't have any severe syptoms now, I can see certain signs.

You're right, I do need to stick with very natural, simple foods until I know exactly what I can eat. Though it is still hard for me to understand that one slip up now can make me sicker than I was before even starting the diet.

I'm so glad your girls and doing well, and wish you good luck on the diet also!

Thanks again, and your thoughts and prayers are appreciated.

Nancy

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Nanceysb,

who is the Dr. in Atlanta? My father lives a couple hours from Atlanta. He suffers from polymyalgia and is in debilitating pain. I'm convinced that gluten is his problem, but his gp and neurologist think I'm crazy. I'd love for him to see this dr. it has been a very long road for him. He's trying to come off of oxycontin right now and it's been very hard. thanks!

His name is Dr. Harry Delcher. He is an endocrynologist specializing in diabetes and fibromyalgia. My son's girlfriend's mother has gone to him for years, and he has helped her immensely with the celiac diet, and also injections of magnesium, and vitamins.

He has celiac disease himself, and is a true believer that it doesn't always show up in bloodwork, but has more of a chance showing up in the stool test which enterolab uses. I have not, however had that test done yet. He is an older man with a long white flowing beard and is very caring. I have had about 6 phone consultations with him so far, because I am not well enough yet to make the trip to Atlanta to see him (2 hours away).

He apparently speaks at different locations about the effects of celiac on many neurological problems.

I highly recommend him!

Nancy

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'Smunkeemom', Thank you for your encouragement. Yes, it is very hard, but I know I must do it and do it right. My sister saw an improvement in 2 or 3 days, but I am much sicker than her, and have been for a lot longer. I had two young children, age 2 and 3 yrs. when I first got sick. Now my oldest is 31 and has a child of his own. I am so very sure that my boys both have this too, but during my quest to find out what was wrong with me through the years, I have said to them many times, "this is it!, and you might have it too", so I am sure they don't want to hear that from my anymore!

So now, I think when they start to see improvements in me, they will finally realize that celiac is really the culprit, and so it might be for them too. Although they don't have any severe syptoms now, I can see certain signs.

You're right, I do need to stick with very natural, simple foods until I know exactly what I can eat. Though it is still hard for me to understand that one slip up now can make me sicker than I was before even starting the diet.

I'm so glad your girls and doing well, and wish you good luck on the diet also!

Thanks again, and your thoughts and prayers are appreciated.

Nancy

My family thought I was nuts saying that all of them probably had celiac too, but then we have my grandfather, me, my two girls, my uncle and now my mom, yeah I think it's a family thing. I am pretty sure there are others that have it too, but they are too stuborn to listen, all I can really do is pray for them.

As far as the little bit making you sicker than before, I try to look at it like a skinned knee, it hurt really bad when it happened, while it's hurting, there isn't much more that you can do to make it hurt worse, the alcohol stings, but it just doesn't hurt as bad, once it's started to heal though, if you fall again, that hurts almost worse than the first time, because 1 it's already weak, so now it hurts easier and 2 you had a little taste of what it feels like not to have a skinned knee.

I know it's a way simple explaination, but it helps me to explain to people why I just can't have "one little bite of cookie", and how that little bite will hurt me more than it would have if I hadn't quit eating them at all.

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Thanks so much for the info. I called my dad immediately and looked the phone # up for him. He also had diabetes, so this is a God-Send for him. I do hope you feel much better soon!

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They told me Beef, corn, soy, milk, eggs, chocolate, tomato, potato, wheat, yeast, cheese, coffee, barley, rye, oats. I mean there is nothing left on the food chain here. I was just wondering if maybe other foods could be doing this to me? Thanks..Jenn

I'm sorry, I'm totally ignorant about the neuropathy thing--I'm not even sure what it is. I might be able to help on the food thing, though. Except for beef and soy, most Asian (Chinese, Japanese, Korean, Thai, Vietnamese, etc.) cuisines have many, many dishes that have nothing to do with your list. Vietnamese recipes tend to call for fish sauce, which tastes quite a bit like soy sauce, but contains no soy or wheat. Any dish calling for beef, you can substitute chicken or fish.

Maybe you can go on a sort of one-month Vietnamese diet, and then gradually try adding things back into your diet, one at a time?

If you can't stand Asian food, I hope I haven't insulted you!

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I dont know for sure if it is neuropathy but it started with strep throat and then I was having bad panic attacks. I started feeling like my arms were burning, aching, the muscle and then they were heavy. I also had dry mouth. I felt good for about 2 weeks, fiance left for war and then I started having heavy arms again and dry mouth, panic attacks again thinking I have sojogrens syndrome, did test it was negative. I started having panic attacks again, knowing something was wrong with me. I then had tingling feelings in body feet and hands cold, it would drive me nuts. It then went away and then I started having these internal tremors, shaking bad on the inside, one night it woke me right up from my sleep thought a train was going through me. It has progressed to tingling all over back and shoulders non-stop, always there, internal tremors are always there, then fasciculations, muscles feel like they quiver sometimes, now having pain in back like a burning feeling and sharp pain on shoulder blade. I also get these streaks of red marks on back that burn and itch. Now my left arm is rigid when i move dowward and wrist shakes a little like Parkinson disease. Now my face feels a slight tingle. I have been gluten free for like 3 weeks no improvement, just worse. I also must say I have not been dx with celiac disease yet so was wondering if it was another food. Wheat does bother me, only get a few little hives and then turned to swelling of eyelids and turning red and now this. I have been only cutting out foods with gluten. When i wash my hair i am careful, havent worn any makeup yet and lotion I use whatever kind and toothpaste I use colgate total whitening is that ok? Well thanks for listening...Jenn

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I dont know for sure if it is neuropathy but it started with strep throat and then I was having bad panic attacks. I started feeling like my arms were burning, aching, the muscle and then they were heavy. I also had dry mouth. I felt good for about 2 weeks, fiance left for war and then I started having heavy arms again and dry mouth, panic attacks again thinking I have sojogrens syndrome, did test it was negative. I started having panic attacks again, knowing something was wrong with me. I then had tingling feelings in body feet and hands cold, it would drive me nuts. It then went away and then I started having these internal tremors, shaking bad on the inside, one night it woke me right up from my sleep thought a train was going through me. It has progressed to tingling all over back and shoulders non-stop, always there, internal tremors are always there, then fasciculations, muscles feel like they quiver sometimes, now having pain in back like a burning feeling and sharp pain on shoulder blade. I also get these streaks of red marks on back that burn and itch. Now my left arm is rigid when i move dowward and wrist shakes a little like Parkinson disease. Now my face feels a slight tingle. I have been gluten free for like 3 weeks no improvement, just worse. I also must say I have not been dx with celiac disease yet so was wondering if it was another food. Wheat does bother me, only get a few little hives and then turned to swelling of eyelids and turning red and now this. I have been only cutting out foods with gluten. When i wash my hair i am careful, havent worn any makeup yet and lotion I use whatever kind and toothpaste I use colgate total whitening is that ok? Well thanks for listening...Jenn

In the beginning I still had a lot of symptoms which continued until I gave up dairy. 3 years later I still can't do dairy and I'm sure I have an intolerance to corn, but this is hard for me to give up but I think I will have to to get better.

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I dont know for sure if it is neuropathy but it started with strep throat and then I was having bad panic attacks. I started feeling like my arms were burning, aching, the muscle and then they were heavy. I also had dry mouth. I felt good for about 2 weeks, fiance left for war and then I started having heavy arms again and dry mouth, panic attacks again thinking I have sojogrens syndrome, did test it was negative. I started having panic attacks again, knowing something was wrong with me. I then had tingling feelings in body feet and hands cold, it would drive me nuts. It then went away and then I started having these internal tremors, shaking bad on the inside, one night it woke me right up from my sleep thought a train was going through me. It has progressed to tingling all over back and shoulders non-stop, always there, internal tremors are always there, then fasciculations, muscles feel like they quiver sometimes, now having pain in back like a burning feeling and sharp pain on shoulder blade. I also get these streaks of red marks on back that burn and itch. Now my left arm is rigid when i move dowward and wrist shakes a little like Parkinson disease. Now my face feels a slight tingle. I have been gluten free for like 3 weeks no improvement, just worse. I also must say I have not been dx with celiac disease yet so was wondering if it was another food. Wheat does bother me, only get a few little hives and then turned to swelling of eyelids and turning red and now this. I have been only cutting out foods with gluten. When i wash my hair i am careful, havent worn any makeup yet and lotion I use whatever kind and toothpaste I use colgate total whitening is that ok? Well thanks for listening...Jenn

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I have been reading a book called the Nutraceutical Revolution by Richard Firshein, D.O. A very interesting book about the use of different supplements and how they can be used to heal the body with and without traditional medicine. He talks quite a bit about how people with irritated intestines (or leaky gut or dysbiosis) have to heal their guts before their food allergies go away. In Chapter 10, he discusses a patient that came to him who had been suffering whole body tremors that would completely exhaust him. He was 28 years old and in a wheelchair. The doctors had tested him for everything and couldn't find a thing wrong with him (besides the fact that something was really wrong). Dr. Firshein wasn't sure what to do but decided to detoxify him by removing all sources of allergens (especially gluten when it showed he tested positive to gluten). He also prescribed Vitamin C and magnesium for his immune system and glutamine, probiotics, fish oils and flax seed powder for his gut. In a few months, the young man was out of his wheel chair and all of his tremors were gone. I have no idea if this would work for you. I'm just paraphrasing what I found in the book. If this interests you, you might check out the book and you might look into seeing a naturopath or integrative medicine specialist (or even this Dr. Firshein in New York) so you could have someone helping you figure out the proper supplements and diet.

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Hubby until after he began gluten-free diet, but that is just a coincidence as he probably would have come down with it anyway. but now we are 2.5 years on gluten-free and neuropathy is still hanging around. I read that there are genetic connections apart from celiac and/or wheat allergy. Perhaps he would have gotten neuropathy anyway even if he wasn't celiac....who knows.

Neither the B shots, B supplements, gluten-free multiple vitamins nor gluten-free 100% diet is reversing this neuropathy.

I, too, had a lot of neurological problems before being diagnosed with Celiac. The vitamin B-12 shots have helped immensely. However, if you don't catch it in time, those neurological problems can be permanent. Ask his doctor if there is something he can take to minimize the symptoms. There are medications out there that can help.

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