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Gluten Related Neurological Conditions


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#1 FreyaUSA

 
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Posted 06 November 2004 - 09:00 PM

I've been reading up on the neurological effects of gluten sensitivity by some people. It appears that elevated IgG alone along with a positive HLA DQ2, DQ8 or DQ1 marker are being recommended for a gluten free diet as well by some doctors studying this aspect.

From: Gluten sensitivity as a neurological illness by M Hadjivassiliou, R A Grünewald and G A B Davies-Jones at: http://jnnp.bmjjourn...t/full/72/5/560

The introduction of more celiac disease specific serological markers such as anti-endomysium and more recently transglutaminase antibodies may have helped in diagnosing celiac disease but their sensitivity as markers of other manifestations of gluten sensitivity (where the bowel is not affected) is low. This certainly reflects our experience with patients with gluten sensitivity who present with neurological dysfunction. Endomysium and transglutaminase antibodies are only positive in the majority but not in all patients who have an enteropathy.

(My underlines.)

Patients with neurological disease of unknown aetiology were found to have a much higher prevalence of circulating antigliadin antibodies (57%) in their blood than either healthy control subjects (12%) or those with neurological disorders of known aetiology (5%).

It appears that requiring a positive biopsy when IgG has indicated that a person is sensitive or intolerant before beginning a gluten free diet may lead to future neurological diseases.

Only one third of the patients with neurological disorders associated with gluten sensitivity have villous atrophy on duodenal biopsy.

Since the neurological damage seems to be progressive and mainly non-reversable, I am now even more set on keeping myself and my children gluten-free with or without medical support (I'm now convinced this type of gluten sensitivity runs in my family.)

Something for those of you to think about who test only partially positive in your lab results. Maybe look at your elderly family members and at how they're aging. Are they stiffening? Having problems talking? Swallowing? Reacting? Staying awake? These all sound like rather typical "old age" symptoms, but why do some people have these symptoms and other do not? Is atrophying of the brain and muscles something we can prevent? Also consider that this does sometimes hit younger people (but I guess by it's progressive nature, it's more likely to become apparent in older people?)

I guess I've convinced myself to get the genetic test done. If nothing else, to give myself more leverage in convincing my 15 year old not to cave in to peer pressure or give up when he gets depressed.

Have others of you looked into this aspect of gluten intolerance? I've read mostly about the gastro effects, but not much here on the forum about the nerve damage that is not uncommon (often first marked by tingling and/or numbness in the extremeties.)
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#2 darlindeb25

 
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Posted 07 November 2004 - 03:21 AM

;) i guess i am a test sample here------i had all of the gut reactions to celiacs, plus i have the numbing of the extremities--i was diagnosed as having carpel tunnel and when i complained of this sore spot in my shoulder and numbing in my toes, i was told by this same doctor that there is one muscle that runs through our bodies from out hands to our toes and all of this is connected--i did have the typical prob of waking in the night with my hands sleeping and that's when i was prescribed the hand braces and anti-inflamatories for the pain--it was later that the shoulder and numb toes came into play and this was all before i went gluten-free--i also suffered from chemical imbalances that caused me to have panic attacks, border line agoraphobia, anticipatory anxiety for which i was prescribed xanax 1st--they told me to take 4 a day and i could not hardly walk when i could stay awake, so then i took it as needed--which didnt help in daily life--later they put me on paxil--just before going gluten-free i was taking 40mg a day and was barely getting by--after gluten-free, i weaned myself off of paxil and very rarely have a panic attack now---i know all of these problems are connected to the celiacs--someday i want to have the enterolab test done, but for now, they are to costly--- ;) did i give you anything to think about B) deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#3 stef_the_kicking_cuty

 
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Posted 08 November 2004 - 08:22 AM

I have had (and still have) problems like that. My hands and arms are "falling asleep" regularly and it tingles and stuff. I have problems with my muscles as well. They don't really build up. And my right eyelid hangs down, when i get tired. And before i was diagnosed, sometimes, when i was working out i had a pain shooting down my right leg, just as when you have sciatica. But then i was diagnosed and i never had it again. Though my i still hangs down sometimes, but that has become very rare now. The only thing i didn't get rid of (yet), is the tingling and falling asleep in my arms and hands.

Stef
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#4 tarnalberry

 
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Posted 08 November 2004 - 02:12 PM

Yep. It'll be nice when they've gotten some medical-community acceptance of tests that can identify GI before significant damage to the intestines has been done - or in cases where it doesn't seem to be happening.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
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#5 mswift

 
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Posted 22 November 2004 - 09:15 PM

This is a timely topic for me. I was diagnosed with Celiac in July 2003. I told my Mom, Dad, and Sister to think about getting checked since it's genetic. We thought it came from my mom's side as she and her mom have some digestive issues (diagnosed with collagnous colitis and IBS), but my Mom ended up negative on blood and endoscopy tests.

My Dad wasn't having any of the symptoms I had(which were many), so he wasn't concerned. However, he finally went in to get his soar knees checked this month. They had been bothering him for 2 years, but was avoiding the doc as the last time he had knee issues he had to have cartilage surgery. His doc didn't find anything specific to his knees, so he sent him to a neurologist, who discovered that my Dad had no feeling in his toes. A later blood test showed vitamin B12 deficiency, which can cause nerve problems. My Dad then told the doc that I had been diagnosed with Celiac. A second blood test resulted in a positive for Celiac. He's now scheduling an endoscopy with a GI doc.

Also, I had never made this connection, but the last few years I have had problems with my arms and legs getting numb a lot more frequently than they had in the past. It has not gotten worse since going gluten-free, but the problem is still there.

Interesting.

Thanks,
Mike
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Mike

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Was found to have Iron deficient anemia in March 2003, endoscopy confirmed Celiac July 2003. Also, discovered Osteopenia condition July 2003.

#6 strack2004

 
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Posted 23 November 2004 - 09:18 AM

I have tingling in hands and toes plus a sort of numbness on the left side of my face. I have not been diagnosed with celiac, but am using an SCD diet anyway. So far no effect on tingling, etc. Do have more energy and sleep better generally. Ruth S. Strack2004
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#7 FreyaUSA

 
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Posted 23 November 2004 - 01:54 PM

After 8 months I can say that the numbness and tingling in my arms and hands (pretty much my right arm and hand) hasn't decreased much if at all. HOWEVER, my sister, who isn't on a gluten-free diet and with whom I'd told about the hand problem 8 months ago (she said she has the exact same thing) just called a couple days ago because she noticed she's beginning to notice the same thing happening in her feet. I'm hoping, even though my hand still has problems, that it wont get any worse.

Stef, my father had the droopy eye lid problem, too, along with the numbness (that eventually crept to mid-thigh) and many, many other neurological manifestations that seem to corrolate to gluten neuropathy. I am so glad you and your doctors figured out what was happening to you before it was too late. One by one my father's system shut down, it was horrible and frustruting for him and for us.
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#8 darlindeb25

 
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Posted 23 November 2004 - 08:53 PM

freyausa--have you ever read about sjogrens disease-i think that is how it is spelled--it may be very interesting to you--it was to me----i was diagnosed with carpel tunnel and after a few years i complained of my toes going numb and then i would get this bunch in my shoulder and i was told that the muscles in your hands and feet are all connected and the shoulder was in that path--i now believe it is neuropathy--but you should read up on this disease ;) deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!




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