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Guest AutumnE

Permanent Gluten Damage

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Guest AutumnE

Im still patiently waiting for my nerve and joint problems to get better or completely go away, I have been gluten free for almost 9 months.

I know my glaucoma will not go away but hopefully with my vitamin deficiencies going away and medication treatment I will stay at only 30% vision loss in my eye. Also I avoid all processed foods now so Im hopeful that will help also.

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Im still patiently waiting for my nerve and joint problems to get better or completely go away, I have been gluten free for almost 9 months.

I've only been gluten free a few weeks, and not seeming to do a good job (or I have other food issues - :o ) Strangely enough, my nerve issues, painful "tingling" in my hands and feet, with numbness - How can it be painful and numb? I don't know, but it's the best description I can think of, it hurts, and tingles, but I can't feel other sensations -

Anyway, that's poorly written, but that issues has been getting worse. I wondering if it was helped by something else that was in my diet, while simultaneously related to the gluten? Argh.

Geoff

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I've only been gluten free a few weeks, and not seeming to do a good job (or I have other food issues - :o ) Strangely enough, my nerve issues, painful "tingling" in my hands and feet, with numbness - How can it be painful and numb? I don't know, but it's the best description I can think of, it hurts, and tingles, but I can't feel other sensations -

Anyway, that's poorly written, but that issues has been getting worse. I wondering if it was helped by something else that was in my diet, while simultaneously related to the gluten? Argh.

Geoff

With me, alot of things got better gradually, and now, almost two years after being gluten-free, I feel great, healthy, and most importantyl young again. I'm only twenty, and for probably the past five years had felt just old, not able to get out of bed, no stamina, nothing, alot of it will come back, but, it takes longer than a few weeks in most of the people i've spoken to, hang in there, good luck!

I also had a LOT of joint pain, and almost all of it is gone, the important thing is, i'm moving again.

xoxo

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My ataxia did not go away until I had been gluten-free for 1 year (September 2006), but my myoclonus had gotten better 5 months sooner ... so I am hanging in there to see what else will clear up ...

I just figured out that the Kettle chips I was eating were cross contaminated and causing "D", so I may have another 2 years to heal ... :blink:

I've been eating as healthy as possible, raw nuts, omegas, nutritional dense foods, etc. because I figured as a celiac, I have been malnourished for so many years.

Marcia

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I've only been gluten free a few weeks, and not seeming to do a good job (or I have other food issues - :o ) Strangely enough, my nerve issues, painful "tingling" in my hands and feet, with numbness - How can it be painful and numb? I don't know, but it's the best description I can think of, it hurts, and tingles, but I can't feel other sensations -

Anyway, that's poorly written, but that issues has been getting worse. I wondering if it was helped by something else that was in my diet, while simultaneously related to the gluten? Argh.

Geoff

The numbness and painful statement definitely makes sense to me Geoff. I had it almost constantly until 1-2 weeks into my gluten free phase. Mine leg was so cold all the time and it burned, tingled, and was very painful. I had an entire week where my shin was aching so badly I could barely use my leg. Odly enough it was only from the knee down and it only effected one leg. Right before going gluten free I was pretty much confined to my recliner with a heating pad on my leg and foot to help warm it up and eliviate some of the pain. It's funny too because after using that heating pad so much I read that I could have actually helped prevent some of the nerve damage by keeping my leg and foot warm, so I'm hoping there is none there when I get tested for that next week.

I was told by my celiac group leader that if you have the numbness in any of your extremities you should get to an endogcinologist ASAP and be tested. She said that her daughter had that and found out that it's because the lack of nutrition messes up your endocrine system somehow and it needs to be fixed right away or you may end up with permanent nerve damage. I'm not sure how true that statement is because It's pure "hearsay" but I do know that mine cleared up pretty quickly so if yours is still going on, I think I'd really want to get to the bottom of it.

I'm sorry you're still having so much pain. Try to hang in there and hopefully you will be feeling better sooner rather then later!! Take Care!!

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Im still patiently waiting for my nerve and joint problems to get better or completely go away, I have been gluten free for almost 9 months.

I know my glaucoma will not go away but hopefully with my vitamin deficiencies going away and medication treatment I will stay at only 30% vision loss in my eye. Also I avoid all processed foods now so Im hopeful that will help also.

Autumn, have you noticed ANY improvements yet?

I'm been in pain so long, I have no expectations about when it will be resolved, but I celebrate every little improvement no matter how small. One of my most amazing days so far was while walking down the stairs at home as that is usually a very slow and painful process. I was halfway down the stairs and stopped dead in my tracks when I realized that I was doing it like a normal person! It's been years since I've gone down stairs without leaning heavily on the handrail and having both feet on a single stair before moving on to the next one...and let's not even talk about the accompanying sound effects :P

So it still doesn't happen every time, but whenever it does it amazes me...even my husband can't believe it! At least I have hope that things will continue to improve, but even if this is as good as it gets, it's definitely better than before.

Hang in there!

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Guest AutumnE

Yes I have noticed improvements. My hair is starting to grow back where it broke off over a 2 year period. My diarrhea stopped for awhile but then intolerances started up. Im now up to plain meat, fruits, vegetables. Except for potatoes, tomatoes, berries, eggplant, melons, corn, nuts, carrots, dairy products, and all grains including rice. With trying to figure out what my intolerances are Im still having diarrhea and Im sure it might be related to my medicines Im on since I basically avoid most things in my diet. Im sure I still breathe some of the stuff too as I have a family who isnt restricted so I make many things I dont eat for my daughter and husband that are gluten free.

I have sciatica, joint pain, numbness, tingling, arthritis in both knees to the point as to where its very difficult to walk down the stairs forward so I turn backwards and surprising it is much easier on the knees you just really have to be careful for balance. My feet stay cold regardless of me wearing socks and slippers. My carpal tunnel and asthma are really difficult right now too.

So in a sense Im better and diarrhea is quite a bit less.

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One thing that hasn't completely resolved after a year and a half is the tingling on my face. It has gone away from my arm and legs, but the face persists--worse if glutened. Another is the itching--that comes and goes.

I still have some anxiety--it's gotten better, though.

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Im now up to plain meat, fruits, vegetables. Except for potatoes, tomatoes, berries, eggplant, melons, corn, nuts, carrots, dairy products, and all grains including rice. With trying to figure out what my intolerances are Im still having diarrhea and Im sure it might be related to my medicines Im on since I basically avoid most things in my diet.

hi autumn,

you may think about the possibility of being fructoseintolerant, which can cause diarrhea. you can test it by yourself with cutting out high fructose veggies and fruits and sugars of course. or dare to drink 25g pure fructose in water in the morning on empty stomach.

best wishes and good luck,

Sonja

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Being a naysayer is never a good thing, yet I must say this. Not everything can be fixed by going gluten free. Doctors do not really know how much anyone will heal. Some problems may not go away. Some problems may have been caused by being celiac, but once they catch hold of us, they take on a life separate from celiacs. My neuropathy has never gotten better, it did slow in progression, yet it didn't get better. Sometimes the malnutrition we suffer before going gluten free creates a permanent problem, such as B12 deficiency. I know I will always have to supplement my B12.

Autumn, are you taking vitamins now? Have you tried additional B12? Keep at it, do not give up. I have also read where lots of people do have nerve damage that heals.

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Yes I have noticed improvements. My hair is starting to grow back where it broke off over a 2 year period. My diarrhea stopped for awhile but then intolerances started up. Im now up to plain meat, fruits, vegetables. Except for potatoes, tomatoes, berries, eggplant, melons, corn, nuts, carrots, dairy products, and all grains including rice. With trying to figure out what my intolerances are Im still having diarrhea and Im sure it might be related to my medicines Im on since I basically avoid most things in my diet. Im sure I still breathe some of the stuff too as I have a family who isnt restricted so I make many things I dont eat for my daughter and husband that are gluten free.

I've been gluten, casein, soy, and egg free for about 5 months now, and was gluten "lite" for a few months before that. Identifying all the potential sources of intolerance and cross contamination is definitely frustrating, especially during the "rollercoaster" phase of healing. My biggest challenge right now is identifying hidden sources of soy as that seems to be the main thing (as far as I know :ph34r:) that's continuing to make me sick. Anyway, making my entire household gluten free eventually made things easier to manage, but I realize that's not an option for everyone. Definitely check out your medications for potential CC...if that's the source of the problem, then no amount of dietary restriction is going to fix it.

Having been so sick for so long, I have limited expectations about how much and how quickly I'll heal. My fantasy is that by the time I'm 50, I'll be in the best shape of my life...that gives me 6.5 years! If it happens sooner, BONUS, but in the meantime, I still have a lot to learn. :huh:

Take care, Autumn!

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Guest AutumnE
hi autumn,

you may think about the possibility of being fructoseintolerant, which can cause diarrhea. you can test it by yourself with cutting out high fructose veggies and fruits and sugars of course. or dare to drink 25g pure fructose in water in the morning on empty stomach.

best wishes and good luck,

Sonja

I'll have to check into this. I do avoid all sugars for the most part.

Thanks

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Guest AutumnE
Being a naysayer is never a good thing, yet I must say this. Not everything can be fixed by going gluten free. Doctors do not really know how much anyone will heal. Some problems may not go away. Some problems may have been caused by being celiac, but once they catch hold of us, they take on a life separate from celiacs. My neuropathy has never gotten better, it did slow in progression, yet it didn't get better. Sometimes the malnutrition we suffer before going gluten free creates a permanent problem, such as B12 deficiency. I know I will always have to supplement my B12.

Autumn, are you taking vitamins now? Have you tried additional B12? Keep at it, do not give up. I have also read where lots of people do have nerve damage that heals.

I do take a variety of vitamins. Is b12 offered in any other form besides shots?

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Guest AutumnE
I've been gluten, casein, soy, and egg free for about 5 months now, and was gluten "lite" for a few months before that. Identifying all the potential sources of intolerance and cross contamination is definitely frustrating, especially during the "rollercoaster" phase of healing. My biggest challenge right now is identifying hidden sources of soy as that seems to be the main thing (as far as I know :ph34r:) that's continuing to make me sick. Anyway, making my entire household gluten free eventually made things easier to manage, but I realize that's not an option for everyone. Definitely check out your medications for potential CC...if that's the source of the problem, then no amount of dietary restriction is going to fix it.

Having been so sick for so long, I have limited expectations about how much and how quickly I'll heal. My fantasy is that by the time I'm 50, I'll be in the best shape of my life...that gives me 6.5 years! If it happens sooner, BONUS, but in the meantime, I still have a lot to learn. :huh:

Take care, Autumn!

My meds do have corn in them. I have no choice but to take them though do to there being no other alternative without corn. I hope you feel better soon also.

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Yes Autumn, B12 comes in pill and liquid. There are some that dissolve under your tongue and some you swallow.

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Guest AutumnE

Thanks deb :)

Is it otc like at a health food store? Or do you need a prescription?

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Thanks deb :)

Is it otc like at a health food store? Or do you need a prescription?

You can buy it by itself or in multi-vitamins anywhere vitamins are sold. No need for a special trip to the health food store. It will also be at drug stores, and even some supermarkets.

Here is an article about B12 supplementation. It's written for vegans but it contains information of use to anyone: http://www.vegsource.com/articles/walsh_b12.htm

As you can see, the article recommends either chewing or letting tablets dissolve for better absorpsion. I do this with the little tablet I take even though it isn't in the directions -- no problem. I couldn't find the amounts recommended in this article, but it doesn't make any difference. My understanding from other reading is that any excess B12 is either stored (the reason new vegans don't need supplementation for quite some time) or eliminated by the body. There isn't an overdose concern like some other vitamins.

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My meds do have corn in them. I have no choice but to take them though do to there being no other alternative without corn. I hope you feel better soon also.

Sorry, Autumn...that is sooo frustrating!!! :(

Wish I had more to offer, but you are well ahead of me in figuring these things out...and it sounds like you are doing a great job of working through your intolerances. I hope things continue to get better for you...HANG IN THERE!

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Guest AutumnE

Thanks hathor that helps alot :)

Thanks Jukie- Im slowly learning about corn intolerance, avoiding corn forum has helped me quite a bit. I thought I was having problems with grains, soy and dairy but now I'm not sure if its just corn since its in so many foods including milk. But Im still avoiding them since I know technically this is a healthier way to be.

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I've only been gluten free a few weeks, and not seeming to do a good job (or I have other food issues - :o ) Strangely enough, my nerve issues, painful "tingling" in my hands and feet, with numbness - How can it be painful and numb? I don't know, but it's the best description I can think of, it hurts, and tingles, but I can't feel other sensations -

Anyway, that's poorly written, but that issues has been getting worse. I wondering if it was helped by something else that was in my diet, while simultaneously related to the gluten? Argh.

Geoff

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Geoff,

curious, is your leg pain/numbness your only symptom? i have arm pain, also, and pain in legs comes only when i'm sitting - making traveling and sitting intolerable.

i've been on gluten-free since sept 06 and doing better... i'm noticing changes, still, and i think it's going slow because there's gluten in sooo many things.

bmw

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I want to add here, any of you wanting to increase your B12 intake will never get enough in a multiple vitamin--the most you will ever find in a multiple vitamin will be 100% of the recommended daily amount--I now take 40,000% of the recommended daily amount and test within the normal range for B12.

I have a friend who was complaining of numbness in his feet and legs. He finally went to his regular doctor who did run blood tests. Things did not improve and he was referred to a neurologist, who suspected MS. Well, the MS testing came back negative and eventually he went to a 2nd neurologist. I told them to ask about B12 and when that doctor saw his B12 level, he immediately put him on daily B12 shots. Then he went to once a week. Fianlly the doc asked him to not take any and see what happened to the levels. He had finally gotten his level up to 1200 and then went off B12 altogether. His level dropped to 400. 400 is never a good level, especially if you have neuropathy. He will have to take B12 for life, just as I must. As celiac's we all know that doctors do not always know what is best for us. Read in neuropathy forums--google B12 deficiencies--anything you can think of. I research constantly.

My taking B12 did slow the progression of my neuropathy, but it didn't stop it, nor did it improve in any way. My right foot feels like I am walking on broken bones all the time, I have a buzzing on and off in both feet that feels like I have a vibrating cellphone inside my--I have neuropathy in my entire body--some people only have it in their feet. Carpal tunnel is a form of neuropathy and I have had that for over 10 years now, my left hand being much worse than my right.

Anyone who would like to talk to me about neuropathy--feel free to im me or email me at darlindeb25@aol.com--please put neuropathy in the subject line so I know the email is safe.

Deb

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Permanent Gluten Damage, after gluten free what damage is not reversible for you?

I'm 8 months out gluten free.

Diarrhea and gas - only occasionally a problem, used to be horrible.

Anxiety and depression - no real change yet :( (although I've been told this can take 18 mo - 2 yrs for some)

Headaches - much improved

Seborrheic dermatitis - continued, gradual improvemnent (I'm supplementing with a muti-vitamin, B complex, B12 and biotin)

Premature Ovarian Failure - last period at 33 (I'm 40 now). Please God, don't let this reverse!!! :P

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Geoff,

curious, is your leg pain/numbness your only symptom? i have arm pain, also, and pain in legs comes only when i'm sitting - making traveling and sitting intolerable.

i've been on gluten-free since sept 06 and doing better... i'm noticing changes, still, and i think it's going slow because there's gluten in sooo many things.

bmw

The pain is in both my hands and feet. It gets pretty bad at times. It's not my only symptom, I have GI symptoms as well, and insomnia. Since going gluten free 2 months ago, I have seen some improvement in my GI issues, and I sleep like a rock. I'm starting to suspect that I might still be having other food issues, I need to try cutting corn and or dairy, but I'm having a hard time motivating to do so. Overall, I feel MUCH better, but far from 100%.

Unfortunately, I have seen no improvement in my hands and feet. If anything, some days I think it's worse. Perhaps I need to look into seeing an endochronologist and or trying B12 shots.

Geoff

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