84.C D and Neurological problems Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intolerance, Cookery and recipes

C D and Neurological problems: from on 2002-05-24

Hi everyone, especially Peter ( I have a 10 year old son named Peter!)
This morning, while researching SpinoCerebellar Ataxia on the internet, I came across an article that made reference to CELIAC ! My mother was diagnosed with Celiac Disease in 1984, when she was in her 50's, but no mention was ever made that it was hereditary. (Her own parents had both died relatively young, and apparently showed no symptoms) For 20+ years I have been struggling with an apparent neurological problem: difficulty walking, balance problems, etc. In 1985 it was diagnosed as Multiple Sclerosis, even though the tests done at the time showed no evidence of it (which I didn't find out about until 1992.) In 1992, after other tests, I was Dx'd with Charcot-Marie-Tooth Disease, even though the nerve conduction studies were all normal. The Dr. called it CMT Type 5, the spastic type. It turns out that CMT 5 , or HSMN - V, has been known since the 1950's as Hereditary Spastic Paraparesis. BUT, it turns out, I do not have HSP. I was referr
ed to yet another Dr. To investigate the tremor I also have, which had always been considred (by the DR.s) as a "nuisance" , and not related to the gait problems . The tremot has gotten worse over the years, as has the walking. Now a Dr. at a teaching Hospital in NYC says that I have Spinocerebellar Ataxia, even though my MRI's perfectly normal, and there are quite a few symptoms of SCA that I do not have. Nevertheless, blood samples were drawn to test for the known genetic causes of SCA. That was yesterday, and results will take about 3 wks

Re: C D and Neurological problems: from on 2003-11-07

Hi.
I have been coeliac for 8 years and last year started ith unexplained neurological symptoms. Inability to walk, speak. Difficulty swallowing. All the tests Ive had have come back as normal and the neurologist has put it down to stress. Do you think there could be a link to coeliac disease

Re C D and Neurological problems: from Ellen Wright on 2006-04-09

Hi
I am not sure if this is of any interest but I found out at 16 years old I had coeliac which explained all my illness problems as a child and my sortness compaired to my sisters. At first I was really good at the new diet, but then when i went to uni it all went wrong my mum was good at home did not keep hardly any gluten in the house no temptation it was fine. At uni it was a different story i found my self secretly eating other peoples bread it was so good but i started to get ill. I would not do it all the time about once a month but i was slowly getting really ill inside. My immune system had gone crazy it started to attack my pituitary it was so badly damaged that i no longer produce my hormones. My thiroid, adreanals and female hormones are not working correctly i have to take ten tablets a day. I have put my life in real danger for being so silly so everyone please stick to the diet.

Re C D and Neurological problems: from Peter on 2006-04-10

Ellen

It is extremely useful to have messages like this. It is so hard to persuade late teens / young adults to stick to the diet. A message like yours will help keep them on track.

Thanks

Peter

Re: C D and Neurological problems: from Cindy on 2007-07-06

We have a 2 year old son that has very poor balance and a very staggered gait. We are waiting test results back for genetic ataxia, he gluten test came back elevated. He had an MRI a couple months ago and it was fine. He also has hemophilia so we are desparate to get him walking better so he is not falling and injuring himself all the time. Have you always had trouble walking did you have developmental delays when you were a baby? Is the SCA treatable? Have you found out anything new?

Re: C D and Neurological problems: from Peter on 2007-07-06

A number of recent medical papers discuss the link between gluten and beurological symptoms, including ataxia.

Typical is :

Title: Immune cross-reactivity in celiac disease: anti-gliadin antibodies bind to neuronal synapsin I.
Source: Journal of immunology (Baltimore, Md. : 1950) (J Immunol) 2007 May 15; 178(10): 6590-5
Additional Info: United States
Standard No: ISSN: 0022-1767 (Print); NLM Unique Journal Identifier: 2985117R
Language: English
Abstract: Celiac disease is an immune-mediated disorder triggered by ingestion of wheat gliadin and related proteins in genetically susceptible individuals. In addition to the characteristic enteropathy, celiac disease is associated with various extraintestinal manifestations, including neurologic complications such as neuropathy, ataxia, seizures, and neurobehavioral changes. The cause of the neurologic manifestations is unknown, but autoimmunity resulting from molecular mimicry between gliadin and nervous system proteins has been proposed to play a role. In this study, we sought to investigate the immune reactivity of the anti-gliadin Ab response toward neural proteins. We characterized the binding of affinity-purified anti-gliadin Abs from immunized animals to brain proteins by one- and two-dimensional gel electrophoresis, immunoblotting, and peptide mass mapping. The major immunoreactive protein was identified as synapsin I. Anti-gliadin Abs from patients with celiac disease also bound to the protein. Such cross-reactivity may provide clues into the pathogenic mechanism of the neurologic deficits that are associated with gluten sensitivity.

Re: C D and Neurological problems: from Christine on 2008-02-20

Hi Cindy,

I too have gluten intolerance and have been looking for a friend of mine some unanswered questions to many symptoms her son has. He also has hemophilia and is having uncontrollable seizures. Have you ever come across any information linking hemophilia to celiac or gluten interopathy? I have a gut feel ( no pun intended ;-) .. that there must be a link.

I also experienced many neurologic symptoms including ataxia before I went gluten free. Does it appear as if your son is loosely jointed when he walks? That is how I used to feel, kind of like a puppet on strings which were not tauntly held. Rarely, now does it return and when it does it lasts only a couple days. My hip joint used to "pop" also.

Would you mind replying to my email address as I will not be able to check this website in the next few days.

Thank you so much and I wish your son well.

Christine