Gluten, nerve poison for some

Exclusion diets, allergies etc
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webslave
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Gluten, nerve poison for some

Post by webslave »

I can provoke a relapse in my condition by eating gluten for a week. This has always puzzled me. I know I am sensitive to gluten (it causes diarrhoea, fatigue, depression), but I always thought this was a simple allergy or intolerance. I was tested negative for sprue (celiac disease) by a gastroenterologist's multiple biopsy. [2012 edit: since my son has now exhibited signs (dermatitis herpetiformis) of celiac disease, I now believe I have it too and that I was misdiagnosed initially].

Then, while looking up causes of tremor (my hand shakes a little occasionally), I found that gluten affects nerves directly, the wheat proteins (gliadins, I think) binding to them and causing neuropathy! One study found that an immune response to a protein found in gluten, a substance in wheat, rye, and barley, can cause muscle weakness and neurological problems similar to parkinsonism (shaking, walking difficulties).

Then there's this study:
Lancet. 1998 Nov 14;352(9140):1582-5.

Clinical, radiological, neurophysiological, and neuropathological characteristics of gluten ataxia.

Hadjivassiliou M, Grunewald RA, Chattopadhyay AK, Davies-Jones GA, Gibson A, Jarratt JA, Kandler RH, Lobo A, Powell T, Smith CM.
Department of Neurology, Royal Hallamshire Hospital, Sheffield, UK.


BACKGROUND: Ataxia [inability to coordinate voluntary muscle movements; unsteady movements and staggering gait] is the commonest neurological manifestation of coeliac disease. Some individuals with genetic susceptibility to the disease have serological evidence of gluten sensitivity without overt gastrointestinal symptoms or evidence of small-bowel inflammation. The sole manifestation of disease in such patients may be ataxia. We describe the clinical, radiological, and neurophysiological features of this disorder.

METHODS: Patients with ataxia attending the neurology outpatient clinics at the Royal Hallamshire Hospital, Sheffield, UK, were screened for gluten sensitivity as shown by the titre of antibody to gliadin. Those with other causes of ataxia were excluded. We carried out clinical, neurophysiological, neuroradiological, and, in two cases, neuropathological examinations.

FINDINGS: 28 patients with gluten ataxia were identified. All had gait ataxia and most had limb ataxia. Those with more severe gait ataxia had longer disease duration. No patient had tremor or other extrapyramidal features. 19 patients showed some form of peripheral neuropathy on neurophysiological examination. 16 patients had no gastrointestinal symptoms. Distal duodenal biopsy showed lymphocytic infiltration in two patients, and changes compatible with coeliac disease in 11. Six patients had evidence of cerebellar atrophy on magnetic-resonance imaging. Necropsy was done on two patients who died; there was lymphocytic infiltration of the cerebellum, damage to the posterior columns of the spinal cord, and sparse infiltration of the peripheral nerves.

INTERPRETATION: Gluten sensitivity is an important cause of apparently idiopathic ataxia and may be progressive. The ataxia is a result of immunological damage to the cerebellum, to the posterior columns of the spinal cord, and to peripheral nerves. We propose the term gluten ataxia to describe this disorder.

PMID: 9843103
Firstly, this implies that gut biopsy testing is quite inadequate when diagnosing coeliac disease (we now have genetic testing as well). And secondly, when you realize that pelvic myoneuropathy (UCPPS) is intimately concerned with pelvic nerve function, this puts wheat's hostile role into perspective. For some people, it's a nerve poison.

2012 edit:

I like to advise all men with UCPPS to avoid gluten in their diets, at least for 3 months as a trial. Why?
  1. I found that gluten had a major effect on my symptoms
  2. Gluten is a nerve poison for celiacs. UCPPS is highly nerve-mediated, hence the connection.
  3. An amazing 1% of the world's population has celiac disease, but only 10-15% of that 1% know it. The rest are undiagnosed. You could be in that 1%!
Note that eliminating gluten does not result in overnight improvements. It takes weeks to feel better, sometimes months. However, if you have problems with gluten, then reintroducing it can have quick effects (a few days and pain starts returning). Gluten is slow to release its grip on your nerves, but fast to tighten it again.
Last edited by webslave on Fri Aug 12, 2005 2:54 pm, edited 1 time in total.
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Post by webslave »

Wow!

[Chronic inflammatory neuromyopathies in adults treated for gluten-sensitive enteropathy. A report on three cases with microvascular nerve and muscle lesions (author's transl)]

[Article in French]

Buge A, Escourolle R, Rancurel G, Hauw JJ, Denvil D, Bernier JJ, Rambaud J, Modigliani R.

Neuromyopathies developed in three patients with gluten-sensitive enteropathy, a long time after they had been cured of their digestive disease by following a gluten-free diet. These cases differed radically from typical deficiency neuropathies by the presence of microvascular inflammatory lesions in nerves and muscles. The semiological findings were similar in all 3 cases, and were distinguished by the association of signs evoking lesions of the largest myelinated nerves fibers to the posterior rami with lesions in the muscles. Corticotherapy improved the condition but did not affect its chronic course. Nerve and muscle biopsies revealed the presence of segmentary microrascularitis, mainly lymphohistiocytic. The probable mechanism of these histological changes is alterations in the circulating immune-complexes, usually found in gluten-sensitive enteropathy, producing various types of associated disorders. Some of these immune-complexes would not be related straight to digestive intolerance to gluten, but would persist during the gluten-free diet period, and could be responsible for the micro-angiitis.

Publication Types:

* Case Reports

PMID: 44001 [PubMed - indexed for MEDLINE]
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Post by webslave »

Ann Med Interne (Paris). 1976 Oct;127(10):721-9.

[Nondeficiency chronic polyneuropathies in celiac disease in adults (2 cases with inflammatory neuromuscular vascularitis)]

[Article in French]

Bernier JJ, Buge A, Rambaud JC, Rancurel G, Hauw JJ, Modigliani R, Denvil D.

The neurological and muscular complications seen in coeliac disease in adults are usually attributed to deficiency secondary to malabsorption. Amongst them, however, there exists a very rare cateogory, described by Cooke et al. (1966) taking the form of a chronic myeloneuropathy which cannot be explained in terms of the malabsorption syndrome. Our two cases of gluten intolerance enteropathy, confirmed by biopsy before and after diet, fell into this group of polyneuropathies. The patients, both women, suffered from an essentially sensory ataxic polyneuropathy with accessory motor component with pyramidal and posterior column signs. CSF findings showed a meningeal inflammatory reaction in one of the two cases. These neurological signs, appearing paradoxically during a digestive disease cured by diet, evolve chronically but become stabilised with corticosteroid therapy. Any vitamin deficiency may be excluded in the aetiology of these problems. Neuropathological study of neuromuscular biopsies in very fine serial sections confirmed the mild peripheral nervous involvement but revealed identical inflammatory lesions in the nerve and muscle which were remarkable by virtue of their very highly segmentally selective micro-vasculitis appearance. In these two cases, general, clinical and biological arguments, as well as the type of histological lesion, make it possible to exclude monoclonal gammapathies, malignant haemopathies, amyloidosis and the major collagen diseases. This micro-vasculitis, having transient forms with P.A.N. is no less distinctive, and may be integrated into the provisional group of "allergic angeitis", related to physiopathology of circulating immune complexes and very fashionable in theories as to the mechanism of gluten-sensitive enteropathies. The exact nature of the link between the latter and these types of polyneuropathy remains unknown.

Publication Types: * Case Reports


PMID: 1008365 [PubMed - indexed for MEDLINE]
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Richie
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Wheat

Post by Richie »

I wonder if this explains my sensitivity to beer. Mark, what does this mean in lay terms?
Age: 44 | Symptoms: Pain in pelvis, Post urination drip. Helped by: Squat stretching, PT, Prelief before banned foods, Vit B, Cystoprotec AFTER foods, singulair after foods, Exercise. Makes worse: Stress, Alcohol (1-2 days after), coffee, Artificial sweeteners, chocolate, tonic Wheat/gluten. Drink a lot of water!!! 95% better to date!
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Post by webslave »

It means that gluten (wheat, rye, barley) can act as a promoter of pelvic pain in some men.

You can buy gluten-free beer. Try that.
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Re: Gluten, nerve poison for some

Post by webslave »

In a possibly related phenomenon, a new study found that 75% of women with a form of pelvic pain (called endometriosis) reported statistically significant change in painful symptoms after 12 months of a gluten-free diet.
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Re: Gluten, nerve poison for some

Post by sufferinginpain »

Wow... Its crazy that you wrote this. I have been dieting and following strict plan for exercising and I have stayed away from bread/starch/ etc...

For 3 days I had felt 97%.. meaning all that I felt was a SLIGHT 'numbness' type of feeling near the anus/perineum. Everything was perfect, I was loving life so to speak... I had dinner that night with bread, and changed and wanted to go out, suddenly I felt a harsh numbing and stabbing feeling all over again after I ate the bread. Now I don't know if this is coincidence, and I remember asking myself "what in the world triggered it?!" -

I'm going to try and stay away from Gluten for the next couple of weeks and see what happens.

Thanks for this post!
Age:29 | Onset Age: 27 | Symptoms: Rectal burning after bowel movement, rectal tightness, stinging and shocking near thighs sometimes. | Helped By: Hot bath, Muscle relaxers such as Flexeril, not sitting an entire day | Worsened By: Stress, sitting a lot, anxiety, problems with relationship (emotional issues)| Other comments: I recommend A Headache in the Pelvis, and reading my story fully.
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Re: Gluten, nerve poison for some

Post by webslave »

Gluten neuropathy: prevalence of neuropathic pain and the role of gluten-free diet
https://pubmed.ncbi.nlm.nih.gov/30032386/

Non-celiac gluten sensitivity suspected link to functional disorders (irritable bowel syndrome and fibromyalgia)
https://pubmed.ncbi.nlm.nih.gov/29662290/
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