Re: Neuropathy - CD vs Only Glut Intol

[Guest guest]

,

My son had severe PN. Blood tests came back IgG AGA very high. Biopsy was "normal" Gastroenterologist said it is not CD, not even gluten intolerance. We got the gene test done and he was positive (DQ8 and DQ2). So, with the blessing of pediatric neurologist we went GF for a year. Other symptoms resolved quickly - headaches, nausea, etc., but foot pain persisted.

I read an article by Norman Latov at Cornell who is studying "Celiac Neuropathy". The article said that up to that point, most celiac neuropathy patients still had pain after one year GF. They were trying to figure out if (A) the nerve damage was irreparable ( the nerves had not healed because of dietary problems - i.e. gluten still in diet or © there were other food intolerances contributing.

So.....we had IgG AGA retested and it was still mildly elevated (mostly due to dining out at restaurants), and we had food intolerance testing done and dairy (both casein and lactose) was off the charts.

We cut way back on dairy and really strictly monitored eating out - pretty much limited ourselves to Outback and Chick fil A. Here we are one more year later....IgG AGA is finally within normal range (not producing antibodies), and he is off all pain medication (which had included Neurontic, Nortriptylin and Lidoderm foot patches - all needed to control severe neuropathic pain.)

We are amazed and truly blessed to have had a pediatric neurologist who went with it when the GI said to move on.

Hope this helps!

in GA Neuropathy - CD vs "Only" Glut Intol

I tried searching the archives but didn't get any definitive hits on this question, though I'm sure it's been addressed in the past. I see some posts and some articles that suggest that peripheral neuropathy can result no only from CD but also from gluten intolerance that isn't actually CD. Does anyone know if there is an official medical position on PN where there is gluten intolerance but not diagnosed CD - for example, blood tests are inconclusive or negative and no biopsy is deemed necessary, but a GF diet reverses the PN symptoms.This isn't me, but it might be (blood tests not back). I should just chill until the results come back, but the restless mind wants to play out the various 'what if' scenarios.Tks for humoring me Newell

Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free.

[Guest guest]

,

I don’t think there is even official

agreement about whether gluten sensitivity and celiac are different things or

just two different spots on the same continuum. And personally, I don’t

think anyone should ever just chill and wait for the test results. The more I deal

with celiac and other health issues, the more convinced I am that I have to do

most of the research and find answers myself.

Laurie

lbilyeu@...

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Newell

Sent: Wednesday, June 07, 2006

8:54 PM

To: SillyYaks

Subject: Neuropathy -

CD vs " Only " Glut Intol

I tried searching the archives but didn't get any

definitive hits on

this question, though I'm sure it's been addressed in the past. I see

some posts and some articles that suggest that peripheral neuropathy

can result no only from CD but also from gluten intolerance that isn't

actually CD. Does anyone know if there is an official medical position

on PN where there is gluten intolerance but not diagnosed CD - for

example, blood tests are inconclusive or negative and no biopsy is

deemed necessary, but a GF diet reverses the PN symptoms.

This isn't me, but it might be (blood tests not back). I should just

chill until the results come back, but the restless mind wants to play

out the various 'what if' scenarios.

Tks for humoring me

Newell

[Guest guest]

,

I don’t think there is even official

agreement about whether gluten sensitivity and celiac are different things or

just two different spots on the same continuum. And personally, I don’t

think anyone should ever just chill and wait for the test results. The more I deal

with celiac and other health issues, the more convinced I am that I have to do

most of the research and find answers myself.

Laurie

lbilyeu@...

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Newell

Sent: Wednesday, June 07, 2006

8:54 PM

To: SillyYaks

Subject: Neuropathy -

CD vs " Only " Glut Intol

I tried searching the archives but didn't get any

definitive hits on

this question, though I'm sure it's been addressed in the past. I see

some posts and some articles that suggest that peripheral neuropathy

can result no only from CD but also from gluten intolerance that isn't

actually CD. Does anyone know if there is an official medical position

on PN where there is gluten intolerance but not diagnosed CD - for

example, blood tests are inconclusive or negative and no biopsy is

deemed necessary, but a GF diet reverses the PN symptoms.

This isn't me, but it might be (blood tests not back). I should just

chill until the results come back, but the restless mind wants to play

out the various 'what if' scenarios.

Tks for humoring me

Newell

[Guest guest]

,

I don’t think there is even official

agreement about whether gluten sensitivity and celiac are different things or

just two different spots on the same continuum. And personally, I don’t

think anyone should ever just chill and wait for the test results. The more I deal

with celiac and other health issues, the more convinced I am that I have to do

most of the research and find answers myself.

Laurie

lbilyeu@...

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Newell

Sent: Wednesday, June 07, 2006

8:54 PM

To: SillyYaks

Subject: Neuropathy -

CD vs " Only " Glut Intol

I tried searching the archives but didn't get any

definitive hits on

this question, though I'm sure it's been addressed in the past. I see

some posts and some articles that suggest that peripheral neuropathy

can result no only from CD but also from gluten intolerance that isn't

actually CD. Does anyone know if there is an official medical position

on PN where there is gluten intolerance but not diagnosed CD - for

example, blood tests are inconclusive or negative and no biopsy is

deemed necessary, but a GF diet reverses the PN symptoms.

This isn't me, but it might be (blood tests not back). I should just

chill until the results come back, but the restless mind wants to play

out the various 'what if' scenarios.

Tks for humoring me

Newell

[Guest guest]

, Laurie --

Many thanks for your quick and very helpful responses. The idea of PN persisting that long is discouraging. You all know how much chronic pain burdens a person...I never imagined until I began this descent. Laurie, I am not sitting back and waiting, in practical terms. As my wife says, I am not a Type A personality, but Type A^3. I can pretty much guarantee that as of 7pm last Sunday there was absolutely zero gluten in my diet, and I must say that not only are my gastric symptoms better (not a surprise) but I do believe my PN is very slightly but noticeably improved. I am down from walking on pins to merely painful. I am trying to anticipate in my mind what I will do and think if the blood tests come back less than fully positive, because honestly along with all the physical symptoms this whole thing has really worn me so far down that you can just about see right through me, there's so little left (emotionally). Anyway, as t

he two guys on the porch used to say, "We appreciate your support"!

Many thanks

[Guest guest]

, Laurie --

Many thanks for your quick and very helpful responses. The idea of PN persisting that long is discouraging. You all know how much chronic pain burdens a person...I never imagined until I began this descent. Laurie, I am not sitting back and waiting, in practical terms. As my wife says, I am not a Type A personality, but Type A^3. I can pretty much guarantee that as of 7pm last Sunday there was absolutely zero gluten in my diet, and I must say that not only are my gastric symptoms better (not a surprise) but I do believe my PN is very slightly but noticeably improved. I am down from walking on pins to merely painful. I am trying to anticipate in my mind what I will do and think if the blood tests come back less than fully positive, because honestly along with all the physical symptoms this whole thing has really worn me so far down that you can just about see right through me, there's so little left (emotionally). Anyway, as t

he two guys on the porch used to say, "We appreciate your support"!

Many thanks

[Guest guest]

>

> I am trying to anticipate in my mind what I will do and think

> if the blood tests come back less than fully positive,

> because honestly along with all the physical symptoms this

> whole thing has really worn me so far down that you can just

> about see right through me, ...

, many of us are here despite not having a clear diagnosis.

For many of us, at some point, we decide " Ah, fork it. I don't

care what the numbers and slides and pathologists and other

'experts' say, I'm GF and feeling better and therefore staying GF. "

My numbers (transglutaminase) tell nearly the whole story for me.

Only that one blood antibody was high. I went through a bunch of

tests I'd prefer to avoid repeating, and they were all negative.

" Not celiac " says the GI. But guess what? After 3 months of GF,

the transglutaminase was back down to undetectable and I was

feeling MUCH better. That particular " one plus one " added up to

a perfect " Two " for me. AND for my primary care doc, too. Fork

what the GI " expert " says about the issue. It's moot. Within

minutes of my being glutened, half the people in the same zipcode

as I am know about it. And ain't none of them happy.

Esther in RI (different zip codes, depending on the moment)

[Guest guest]

>

> I am trying to anticipate in my mind what I will do and think

> if the blood tests come back less than fully positive,

> because honestly along with all the physical symptoms this

> whole thing has really worn me so far down that you can just

> about see right through me, ...

, many of us are here despite not having a clear diagnosis.

For many of us, at some point, we decide " Ah, fork it. I don't

care what the numbers and slides and pathologists and other

'experts' say, I'm GF and feeling better and therefore staying GF. "

My numbers (transglutaminase) tell nearly the whole story for me.

Only that one blood antibody was high. I went through a bunch of

tests I'd prefer to avoid repeating, and they were all negative.

" Not celiac " says the GI. But guess what? After 3 months of GF,

the transglutaminase was back down to undetectable and I was

feeling MUCH better. That particular " one plus one " added up to

a perfect " Two " for me. AND for my primary care doc, too. Fork

what the GI " expert " says about the issue. It's moot. Within

minutes of my being glutened, half the people in the same zipcode

as I am know about it. And ain't none of them happy.

Esther in RI (different zip codes, depending on the moment)

[Guest guest]

>

> I am trying to anticipate in my mind what I will do and think

> if the blood tests come back less than fully positive,

> because honestly along with all the physical symptoms this

> whole thing has really worn me so far down that you can just

> about see right through me, ...

, many of us are here despite not having a clear diagnosis.

For many of us, at some point, we decide " Ah, fork it. I don't

care what the numbers and slides and pathologists and other

'experts' say, I'm GF and feeling better and therefore staying GF. "

My numbers (transglutaminase) tell nearly the whole story for me.

Only that one blood antibody was high. I went through a bunch of

tests I'd prefer to avoid repeating, and they were all negative.

" Not celiac " says the GI. But guess what? After 3 months of GF,

the transglutaminase was back down to undetectable and I was

feeling MUCH better. That particular " one plus one " added up to

a perfect " Two " for me. AND for my primary care doc, too. Fork

what the GI " expert " says about the issue. It's moot. Within

minutes of my being glutened, half the people in the same zipcode

as I am know about it. And ain't none of them happy.

Esther in RI (different zip codes, depending on the moment)

[Guest guest]

I had a lot of neuro symptoms, including neuropathy, neuralgia,

tremors, hand spasms, etc. My doctors all thought I was in the too-

early-to-diagnose stages of MS (and/or lupus) and told me all I could

do was wait until enough damage showed up to trigger bloodwork or

show up on CT scans.

Well, my wheat allergy (I was rotating it) turned anaphylactic. I

had to give up wheat. Since I was still having cross contamination

allergy issues, I gave up the other gluten grains and oats. Within

days, my IBS-D (several years running) was nearly gone. A blistery

rash I'd had for years was disappearing. Over the last two years, my

neuro symptoms have really toned down.

My GP said, " well, it's probably CD, but since we can't go with

modern diagnostic standards, I'm not putting it in your chart. just

don't go near gluten. ever. "

My hematologist said, " Well, since you have no other possible reason

for having no iron whatsoever, I'm going with gut malabsorption.

Let's see. You get diarrhea and neuro symptoms when you eat gluten.

It goes away when you go GF. If you get glutened, you get diarrhea,

nerve pain, and joint pain. Way back when, we had no tests other

than diet/challenge. You fit those criteria. I think it's CD and

that's what I'm writing down. "

None of my nerve problems were caused by injury. I've had CT scans,

MRIs, EMG/NCV studies, etc. No other cause could be found, other

than a B12 deficiency that has--surprise--cleared up since going GF.

There is no doubt in my mind that gluten is a poison for my body.

Now, whether I was suffering from gluten ataxia or celiac disease is

something I can't say, but I certainly do have severe, chronic

problems that are strongly correlated with gluten intake. I will

stay strictly gluten-free for the rest of my life. No questions there.

In other news, I still have fibro pain. I've been in a fibromyalgia

flare since 1997--absolutely no pain-free days. I can cope with

that. The good news? My CFIDS is in remission. I had sudden onset

of fibro and CFIDS almost nine years ago. To have *energy* again? I

may fall into a CFIDS crash again, but I'm enjoying the energy while

I have it. Heck, maybe someday the fibro symptoms will fade and I

can be a contributing member of society again. I would adore to be

able to survive the daily grind that so many people take for granted.

ygg

[Guest guest]

I had a lot of neuro symptoms, including neuropathy, neuralgia,

tremors, hand spasms, etc. My doctors all thought I was in the too-

early-to-diagnose stages of MS (and/or lupus) and told me all I could

do was wait until enough damage showed up to trigger bloodwork or

show up on CT scans.

Well, my wheat allergy (I was rotating it) turned anaphylactic. I

had to give up wheat. Since I was still having cross contamination

allergy issues, I gave up the other gluten grains and oats. Within

days, my IBS-D (several years running) was nearly gone. A blistery

rash I'd had for years was disappearing. Over the last two years, my

neuro symptoms have really toned down.

My GP said, " well, it's probably CD, but since we can't go with

modern diagnostic standards, I'm not putting it in your chart. just

don't go near gluten. ever. "

My hematologist said, " Well, since you have no other possible reason

for having no iron whatsoever, I'm going with gut malabsorption.

Let's see. You get diarrhea and neuro symptoms when you eat gluten.

It goes away when you go GF. If you get glutened, you get diarrhea,

nerve pain, and joint pain. Way back when, we had no tests other

than diet/challenge. You fit those criteria. I think it's CD and

that's what I'm writing down. "

None of my nerve problems were caused by injury. I've had CT scans,

MRIs, EMG/NCV studies, etc. No other cause could be found, other

than a B12 deficiency that has--surprise--cleared up since going GF.

There is no doubt in my mind that gluten is a poison for my body.

Now, whether I was suffering from gluten ataxia or celiac disease is

something I can't say, but I certainly do have severe, chronic

problems that are strongly correlated with gluten intake. I will

stay strictly gluten-free for the rest of my life. No questions there.

In other news, I still have fibro pain. I've been in a fibromyalgia

flare since 1997--absolutely no pain-free days. I can cope with

that. The good news? My CFIDS is in remission. I had sudden onset

of fibro and CFIDS almost nine years ago. To have *energy* again? I

may fall into a CFIDS crash again, but I'm enjoying the energy while

I have it. Heck, maybe someday the fibro symptoms will fade and I

can be a contributing member of society again. I would adore to be

able to survive the daily grind that so many people take for granted.

ygg

[Guest guest]

I had a lot of neuro symptoms, including neuropathy, neuralgia,

tremors, hand spasms, etc. My doctors all thought I was in the too-

early-to-diagnose stages of MS (and/or lupus) and told me all I could

do was wait until enough damage showed up to trigger bloodwork or

show up on CT scans.

Well, my wheat allergy (I was rotating it) turned anaphylactic. I

had to give up wheat. Since I was still having cross contamination

allergy issues, I gave up the other gluten grains and oats. Within

days, my IBS-D (several years running) was nearly gone. A blistery

rash I'd had for years was disappearing. Over the last two years, my

neuro symptoms have really toned down.

My GP said, " well, it's probably CD, but since we can't go with

modern diagnostic standards, I'm not putting it in your chart. just

don't go near gluten. ever. "

My hematologist said, " Well, since you have no other possible reason

for having no iron whatsoever, I'm going with gut malabsorption.

Let's see. You get diarrhea and neuro symptoms when you eat gluten.

It goes away when you go GF. If you get glutened, you get diarrhea,

nerve pain, and joint pain. Way back when, we had no tests other

than diet/challenge. You fit those criteria. I think it's CD and

that's what I'm writing down. "

None of my nerve problems were caused by injury. I've had CT scans,

MRIs, EMG/NCV studies, etc. No other cause could be found, other

than a B12 deficiency that has--surprise--cleared up since going GF.

There is no doubt in my mind that gluten is a poison for my body.

Now, whether I was suffering from gluten ataxia or celiac disease is

something I can't say, but I certainly do have severe, chronic

problems that are strongly correlated with gluten intake. I will

stay strictly gluten-free for the rest of my life. No questions there.

In other news, I still have fibro pain. I've been in a fibromyalgia

flare since 1997--absolutely no pain-free days. I can cope with

that. The good news? My CFIDS is in remission. I had sudden onset

of fibro and CFIDS almost nine years ago. To have *energy* again? I

may fall into a CFIDS crash again, but I'm enjoying the energy while

I have it. Heck, maybe someday the fibro symptoms will fade and I

can be a contributing member of society again. I would adore to be

able to survive the daily grind that so many people take for granted.

ygg

[Guest guest]

It was such a relief to see my symptoms posted

> I had a lot of neuro symptoms, including neuropathy,....> Well, my

wheat allergy (I was rotating it) turned anaphylactic. I

> had to give up wheat. Since I was still having cross contamination

> allergy issues, I gave up the other gluten grains and oats.

I'm having a bad week, so yes, this is a blatant plea for sympathy

I'm still just beginning to deal with the implications of all this,

and my reaction to gluten seems to be getting stronger each day - a

cracker crumb under my fingernail sets off swollen joints, aching

muscles, D, gas, pins and needles everywhere. Why does my reaction

get worse each day?

I'm having to drop out of some volunteer positions because one mistake

on my part leads to several days of weird woman before my sane mind

returns (shall we say I become a tad bit irritable and unorganized?)

I have to obsessively wash my hands everywhere - there are like a

million billion zillion cracker crumbs around. My husband doesn't

dare kiss me until he has brushed his teeth. I feel like some

isolated zoo specimen. Even without gluten, my joints in my knees now

hurt almost every night - thankfully ibuprofen takes it away, but who

wants to take that every night? Friends and relations are trying to

help, but it is difficult for them to understand the severity of the

problem. And I worry about my children - one definitely seems to be

showing signs of a gluten/wheat problem. Most doctors seem to think I

have other issues (one told me recently that some parents " fish " -

they want the attention that comes with a sick child. I was very

controlled -but I really wanted to start manically whacking her with

my purse.)

OK, thanks for letting me vent a bit. I'm actually a cheerful person -

I'm just frustrated that this is taking over my life. I'm soooo

lucky I ran into a nice person at the health food store who told me

that my doctors were probably wrong ;0 Several had informed me that

my symptoms were obviously psychological since they could find nothing

in the tests. I have a very nice doctor now who knows very little

about this stuff, but has the very big plus of believing me! My

symptoms do abate somewhat when I'm very careful, but I can't eat

wheat/gluten, dairy, sugar, or any other grains (yep, rice cakes cause

the old fingers to swell, even though they say gluten free)

Heidi, formerly known as crazy woman

[Guest guest]

It was such a relief to see my symptoms posted

> I had a lot of neuro symptoms, including neuropathy,....> Well, my

wheat allergy (I was rotating it) turned anaphylactic. I

> had to give up wheat. Since I was still having cross contamination

> allergy issues, I gave up the other gluten grains and oats.

I'm having a bad week, so yes, this is a blatant plea for sympathy

I'm still just beginning to deal with the implications of all this,

and my reaction to gluten seems to be getting stronger each day - a

cracker crumb under my fingernail sets off swollen joints, aching

muscles, D, gas, pins and needles everywhere. Why does my reaction

get worse each day?

I'm having to drop out of some volunteer positions because one mistake

on my part leads to several days of weird woman before my sane mind

returns (shall we say I become a tad bit irritable and unorganized?)

I have to obsessively wash my hands everywhere - there are like a

million billion zillion cracker crumbs around. My husband doesn't

dare kiss me until he has brushed his teeth. I feel like some

isolated zoo specimen. Even without gluten, my joints in my knees now

hurt almost every night - thankfully ibuprofen takes it away, but who

wants to take that every night? Friends and relations are trying to

help, but it is difficult for them to understand the severity of the

problem. And I worry about my children - one definitely seems to be

showing signs of a gluten/wheat problem. Most doctors seem to think I

have other issues (one told me recently that some parents " fish " -

they want the attention that comes with a sick child. I was very

controlled -but I really wanted to start manically whacking her with

my purse.)

OK, thanks for letting me vent a bit. I'm actually a cheerful person -

I'm just frustrated that this is taking over my life. I'm soooo

lucky I ran into a nice person at the health food store who told me

that my doctors were probably wrong ;0 Several had informed me that

my symptoms were obviously psychological since they could find nothing

in the tests. I have a very nice doctor now who knows very little

about this stuff, but has the very big plus of believing me! My

symptoms do abate somewhat when I'm very careful, but I can't eat

wheat/gluten, dairy, sugar, or any other grains (yep, rice cakes cause

the old fingers to swell, even though they say gluten free)

Heidi, formerly known as crazy woman

[Guest guest]

I've heard a lot about naturopaths - what are they exactly, and how do

you find one? I live in Raleigh, NC if that helps... I once went to

a site to find one, but there did not seem to be any here.

Heidi, formerly known as crazy woman

> Grumbling with you..ggrrr. I hate when doctors imply that it's all

in MOM's

> head! I wonder if working with a naturopath for ways to

strengthen/balance

> your immune system would help your sensitivity. I have no idea, I

just do

> believe that a total wellness plan helps us in every respect.

[Guest guest]

>

> ... Most doctors seem to think I

> have other issues (one told me recently that some parents " fish " -

> they want the attention that comes with a sick child. I was very

> controlled -but I really wanted to start manically whacking her with

> my purse.)

>

> ...

I hope you said " Wow. **THOSE** parents need definite

mental health help. " With a super-strong emphasis on THOSE.

Make sure that pediatrician is left with NO DOUBT that every

bit of your reporting is real. If the doctor still doesn't

" get it " , you can say " I gag on fish, therefore I never 'fish' " .

And if the doctor is still dense, fire the doctor and get a new

one.

You are, after all, the one paying the bill. You are The Boss.

Maniacally whacking the doctor with a purse can land you in jail.

I'm glad you were restrained, despite the strong temptation.

Esther in RI

who can really relate to the desire to maniaclly whack someone

with a purse! [Even better if you happen to have a dozen rolls

of quarters for the laundomat.]