Does The Neuropathy Go Away

[dream77]

After many many tests all inconclusive yet I think I have a gluten issue for sure.

This is based on a very positive antigliadin antibody test.

I think I have small fiber neurpathy given the low blood pressure I have with the severs burning in hands and feet.

I've did do a 3 month wheat abstinence and maybe it wasn't too meticulous and I started another trial of wheat abstinence except it is going to be 100% meticulus this time because I am in too much pain.

My question is this :

Does the neuropathy go away and what is a good timeline to expect it to get better ?

I am also trying to get pregnant because I've a feeling things are not about to get better for me

[ravenwoodglass]

If your neuropathy is celiac related you need to avoid more than just wheat. You also need to avoid barley, rye and oats. Otherwise the antibodies will not resolve.

As for whether it will go away or not for most of us it will in time. Something that may help quite a bit is some sublingual B12, just make sure it is gluten free. My neuropathy as far as the tingling and pain went away within a couple of months after I went gluten free. Other neurological problems with balance (ataxia) did not totally resolve but within 6 months I could walk unaided. I had ataxia since childhood though so I am happy with the resolution I had as far as that goes. It took about 2 years before I regained reflexes in my legs and they are still weak but the most severely effected leg has seen much improvement as I no longer drag it or fall over my own feet any more.

Different folks will heal in different time frames depending on how much damage there is and whether or not they have brain lesions from the antibody attack.

Don't lose hope as most will recover. Celiac can also effect our ability to concieve and carry a child so if you are TTC you should be as strict with the diet as is humanly possible.

[dream77]

Thankyou ravenwood..

I am being completely meticulous because I can't play a chase game of dcotors anymore and all my internet research shows antigliading antobodies attack nerves whether or not proven celiac..

Thank you for answering.. I need the hope.

[Korwyn]

After many many tests all inconclusive yet I think I have a gluten issue for sure.

This is based on a very positive antigliadin antibody test.

I think I have small fiber neurpathy given the low blood pressure I have with the severs burning in hands and feet.

I've did do a 3 month wheat abstinence and maybe it wasn't too meticulous and I started another trial of wheat abstinence except it is going to be 100% meticulus this time because I am in too much pain.

My question is this :

Does the neuropathy go away and what is a good timeline to expect it to get better ?

I am also trying to get pregnant because I've a feeling things are not about to get better for me

To second ravenwood, if you have a positive anti-gliadin IgA then you need to avoid wheat, barley, rye, spelt, triticale, and any of their family. While certified gluten-free (gluten-free) Oats may be OK for some GI (gluten-intolerant) persons, some cannot tolerate oats for a variety of reasons. I would suggest that you avoid them for an extended period as well.

If you have been looking into this issue much (and I hope you have), you have discovered that things like malt, starch, and many other foods and medications inadvertently contain gluten. With gluten, for most people it seems to be all or nothing. There isn't really a 'safe' level. So even if you are avoiding wheat, if you are not 100% gluten-free, then you are undoing all the good of being wheat free.

[dream77]

I don't know if this is a lucky patch but the neuropathic pain is far better in the last 10 days than it has been in the last 1 year.

Could it really be gluten ?

Could stopping it have results in one week ?

(Only positive antiGliadin antibodies for me as a self diagnosis)

[Korwyn]

I don't know if this is a lucky patch but the neuropathic pain is far better in the last 10 days than it has been in the last 6.

Could it really be gluten ?

Could stopping it have results in one week ?

(Only positive antiGliadin antibodies for me as a self diagnosis)

Yes, and yes if you are going completely gluten free. There will be up and down periods though. Those can be rough because you may feel as if you are losing ground. You have to realize that your body has potentially suffered years of damage and it isn't going to heal overnight, but realize that you will get through it.

Just remember that with gluten free to quote Yoda, "Try not. Do or do not, there is no try." You will feel better, and your body will become healthier. You mentioned again that you are doing a 'wheat abstinence'. Do you mean wheat or gluten?

[dream77]

I mean gluten. I am SO sorry I always miss it because for me gluten = wheat because I don't consume the other sources of gluten.. I will use the word "gluten" in future.

I did get gluten free oats which I don't know what to do with know..

I am of South Asian descent and wheat bread is something I've grown up with and a meal does not feel complete without it.

I replaced it with rice or sourghom or millet bread.

I've got an South Asian starch called "Samo" which is a variety of millet and looks similar to quinoa..

I have to try the food with these.

I am also trying to conceive but am a little worried about these antibodies in my system doing damage in case I was to conceive.

I have a history of thyroid issues after the birth of my child 2.7 years ago.. I feel it is gluten related as well.

[Korwyn]

I mean gluten. I am SO sorry I always miss it because for me gluten = wheat because I don't consume the other sources of gluten.. I will use the word "gluten" in future.

I did get gluten free oats which I don't know what to do with know..

I am of South Asian descent and wheat bread is something I've grown up with and a meal does not feel complete without it.

I replaced it with rice or sourghom or millet bread.

I've got an South Asian starch called "Samo" which is a variety of millet and looks similar to quinoa..

I have to try the food with these.

I am also trying to conceive but am a little worried about these antibodies in my system doing damage in case I was to conceive.

I have a history of thyroid issues after the birth of my child 2.7 years ago.. I feel it is gluten related as well.

Ok, well I was just worried when I saw that. There are gluten sources in medications (over the counter and prescription), salad dressings, ice cream (almost anything with malt or malt flavouring), etc. etc. So I wanted to make sure you were catching that.

[dream77]

Something I've been noticing :-

15 days ago I had this sensation of feeling light headed everytime I ate (generally every meal had gluten earlier)

Recently I feel that feeling is very minimal... It been only 12 days gluten free.

I have not bought new pots and pans but be as careful about contamination as possible.

I roll out the sorghum bread on different utensils and use a different pan to cook it..

I know korwyn said this is possible but I am quite amazed.. It seems too good to be true to the extent that I think I am a mental case and this is all psychological..

Thank you.

[ravenwoodglass]

It seems too good to be true to the extent that I think I am a mental case and this is all psychological..

Thank you.

Your not a mental case you are a celiac and you are healing. I hope things continue to improve for you.

[dream77]

Thanks ravenwood,

I am just amazed how doctors never diagnosed me because only the antigliadin antibody marker was positive.

I am hopeful I have found the solution.

I am also hopeful my daughter doesn't have this problem.

She is fine so far and growing and has been ahead of her milestones but I am a little worried about her and will bring it up in the next pediatrician visit.

[dream77]

Ravenwood,

Do you know how long it takes for these horrid antigliadin antobidies to go away after going gluten free ?

[ravenwoodglass]

Ravenwood,

Do you know how long it takes for these horrid antigliadin antobidies to go away after going gluten free ?

I don't think that question really has an answer that can be applied to all. I do know that in my own case neurological issues took a varied amount of time to resolve. While I was able to walk unaided within 6 months I didn't regain detectable leg reflexes for 2 years. The depressive aspect of my neuro damage resolved much more quickly, like within a month or so at most and the 'lightheaded' feeling after eating was gone almost as soon as I went gluten free. For me that effect was a sudden feeling that I was falling sideways even though I wasn't actually moving at all and still to this day, after 7 years gluten free it is the first sign I have been glutened and occurs within a half hour of injestion. If you were someone who did have positive antibody tests you could have those redone at perhaps 6 month intervals and see how quickly they go down. Be aware though that once the body starts producing antibodies it can respond by reactivating them with even small amounts. For me to remain symptom free I have had to be very strict with the diet and I also needed to eliminate it from toiletries and distillled products but not everyone needs to be that strict. If you have DH it takes about 2 years for the antibodies to leave the skin but I don't know how much research is available to access how long in general it takes for them to leave other organs.

[dream77]

Ravenwood,

Thanks..

I came across a site that said processed foods containing non-obvious gluten like

'modified starch', 'veg gum', 'vegetarian protein' were to be all avoided.

I may have sneaked something with that a little bit in 3 days..

Y'day it seemed like the neuropathy was striking in my feet again and I got really scared because I've been very meticuous otherwise.

Was your neuropathy like burning and zapping in your feet ..

Did you have bouts where despite being gltuen free you got little bouts of those ?

I argued with my friend y'day about the "quanitiy of wheat"

I told her ppl with wheat allergy or people trying to avoid ill effects of wheat had to give it ALL up and by eating less of it they won't be doing themselves a favour.. they might as well how much ever they want..

Do you think this is a fair statement.

[ravenwoodglass]

Ravenwood,

Thanks..

I came across a site that said processed foods containing non-obvious gluten like

'modified starch', 'veg gum', 'vegetarian protein' were to be all avoided.

I may have sneaked something with that a little bit in 3 days..

Y'day it seemed like the neuropathy was striking in my feet again and I got really scared because I've been very meticuous otherwise.

Was your neuropathy like burning and zapping in your feet ..

Did you have bouts where despite being gltuen free you got little bouts of those ?

I argued with my friend y'day about the "quanitiy of wheat"

I told her ppl with wheat allergy or people trying to avoid ill effects of wheat had to give it ALL up and by eating less of it they won't be doing themselves a favour.. they might as well how much ever they want..

Do you think this is a fair statement.

The statement you made to your friend is right on. If your having an antibody reaction even the tiniest amount can start those antibodies into formation and attack.

My neuropathies were mostly a tingling sensation like you get when something falls asleep. But I also had a great deal of brain impact that effected my ability to move, it hit my right side heaviest and I usually dragged my right leg or swung it out from the hip when I walked as the nerve impulses just were not getting down into my legs.

Have you tried taking sublingual B12? That would help your nerves heal and help them to fire correctly and even before I was finally diagnosed it helped with my 'tingles' a great deal.

[dream77]

"My neuropathies were mostly a tingling sensation like you get when something falls asleep. But I also had a great deal of brain impact that effected my ability to move, it hit my right side heaviest and I usually dragged my right leg or swung it out from the hip when I walked as the nerve impulses just were not getting down into my legs.

Have you tried taking sublingual B12? That would help your nerves heal and help them to fire correctly and even before I was finally diagnosed it helped with my 'tingles' a great deal."

Thanks Ravenwood,

I am curious, did they do MRIs to determine brain impact.. did repeat MRIs show healing ?How did they differentiate between MS lesions vs gluten reaction lesions.. I ask because they've done MRIs for me to determine MS.

My neuropathy is "zapping" at it worse.Its been overall better so I feel it is gluten related.

I've been taking alot of supplements including B12 (Super B complex 100) I read that too much supplementation of the Bs can also cause neuropathy so I backed off some and take it bt not everyday.

Thanks so much for your responses..

[Korwyn]

Ravenwood,

Thanks..

I came across a site that said processed foods containing non-obvious gluten like

'modified starch', 'veg gum', 'vegetarian protein' were to be all avoided.

I may have sneaked something with that a little bit in 3 days..

Y'day it seemed like the neuropathy was striking in my feet again and I got really scared because I've been very meticuous otherwise.

Was your neuropathy like burning and zapping in your feet ..

Did you have bouts where despite being gltuen free you got little bouts of those ?

I argued with my friend y'day about the "quanitiy of wheat"

I told her ppl with wheat allergy or people trying to avoid ill effects of wheat had to give it ALL up and by eating less of it they won't be doing themselves a favour.. they might as well how much ever they want..

Do you think this is a fair statement.

I know you addressed this to ravenwood, but I wanted to chip in my $0.02 as well. hydrolyzed vegetable protein can be made from wheat, soy, dairy, or corn. Unless the source is specifically listed you cannot trust it.

As far as the 'quantity of wheat' question, I cannot tolerate ANY. I can't even eats Lay's classic potato chips, which are gluten-free, but are produced in a facility that processes products with gluten and wheat.

Just to give you a mental picture, while 10 mg is considered 'safe' by some in the medical field, there are individuals who are sensitive to amounts below 5 mg. To put that in perspective, a standard small paperclip has a mass of approximately 1 gram (1g). If you straighten it out and cut it up into 200 equally sized pieces, each piece would be approximately 5 mg. You can begin to see how little of an amount it may take to affect you. And realize that while one item of something might only have 1 mg total, if you have trace gluten in your diet it doesn't take much to add up.

For reference, the average amount of gluten in an average slice of whole wheat bread is 4.8 grams (4800 mg).

Here is a link to another article. How much gluten is in a normal diet?

[ravenwoodglass]

Thanks Ravenwood,

I am curious, did they do MRIs to determine brain impact.. did repeat MRIs show healing ?How did they differentiate between MS lesions vs gluten reaction lesions.. I ask because they've done MRIs for me to determine MS.

My neuropathy is "zapping" at it worse.Its been overall better so I feel it is gluten related.

I've been taking alot of supplements including B12 (Super B complex 100) I read that too much supplementation of the Bs can also cause neuropathy so I backed off some and take it bt not everyday.

Thanks so much for your responses..

First off on the B12, the regular pills that you swallow are not going to do you any good if you have celiac. You really need the sublinguals which will seem to have a lot but B12 has no toxic level, any excess is simply excreted.

They did an MRI on me which showed 5 UBO's (unidentified bright objects) these lesions look like demylinating lesions but are not around the mylin sheath. In my case they still strongly suspected MS so they did a spinal tap. Demylinating lesions will throw 'debris' into the spinal fluid and since they didn't find the debris they decided I didn't have MS. My neuro just shrugged his shoulders and offered me an antidepressant saying the lesions were meaningless. It wasn't until a couple of years after I was diagnosed, after many of my MS symptoms had resolved, that I started to research the neurological impact of celiac and discovered that in Europe those lesions would have been considered diagnostic of celiac. I have not had a repeat MRI, I wish I could get one to see if the lesions have 'gone away', I suspect they are still there but that my brain has healed enough to compensate but I don't know.

[TotalKnowledge]

Mine has all but gone away (that I can tell) except for a persistent swelling sensation.

My mother who on my advice has started a gluten free diet has also noticed improvement and hers is more advanced then mine.

Time will tell if that is just an immediate response or being on the tract toward resolution of the symptoms.

[dream77]

Mine has all but gone away (that I can tell) except for a persistent swelling sensation.

My mother who on my advice has started a gluten free diet has also noticed improvement and hers is more advanced then mine.

Time will tell if that is just an immediate response or being on the tract toward resolution of the symptoms.

Thanks TotalKnowledge,

Please keep me updated.. I am trying very hard to solve this problem.