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Member Since 18 Aug 2006
Offline Last Active Dec 16 2006 07:47 AM

Posts I've Made

In Topic: Celiac Disease: Not Just A Gi Problem

19 November 2006 - 09:11 AM

Thank you for this post, and for the link to the article about gluten sensitivity as a neurological disease. After one year of my pestering him, my father was recently diagnosed with celiac disease. He is now in his 60s and was diagnosed with multiple sclerosis and type 1 diabetes in his 30s. I hope to convince him that despite his perceived lack of GI symptoms, a gluten free diet is waranted becasue it may reverse some of his neuological symptoms. I suffer from peripheral neuropathy, anxiety, depression and forgetfullness, similar to what you describe. I am waiting (impatiently) for these symptoms to improve with my gluten free diet. Your post and article give me renewed hope.

In Topic: Recovery From Neurological Problems

18 November 2006 - 07:32 AM

The normal range for B-12 is something like 300-800, however, my hematologist told me that she sees symptoms of B-12 deficiency when serum B-12 is in the 300s. I have peripheral neuropathy (tingling, surging, numbness) in my feet and legs. When I have had gluten, occasionally, my entire body will appear to surge with irritation, like each nerve is inflammed. I also have irritability, anxiety and depression following accidental gluten exposure. Right after celiac diagnosis my B-12 was in the 300s. I received a few B-12 injections. Following each injection, signs of neruopathy stopped, and my mood improved. I think everyone gets mood improvement with large doeses of B-12. My B-12 levels rose to the 700s. After a few months with no injections, the neruopathy returned. It may also have be correlated with stress. At this point, I got intranasal B-12 from my MD, and I take this once weekly (nascobal nasal spray, 500mcg Cyanobalamin). I also added a daily Vit B-12 supplement (1000mcg) on top of my multivitamin (100mcg B-12). The neuropathy has disappeared, at least for now. I have been gluten free for just over 1 year. Keep in mind that while vit B-12 is obviously important for neurological health, so are other nutrients such as folate, Vit E and fatty acids. I am frustrated by docs looking at one nutrient in isolation. I think the best approach is to supplement with Vit B-12, calcium, Vit. D, and take a multivitamin, and to eat as many vegetables, fruits, olive oils and meats (esp. fatty fish) as possible. See this link for some important information about the diagnosis of B-12 deficiency, we should actually look at methylmalonic acid and homocysteine levels instead of B-12. Take heart about the British system, even at the best hospital in the US, they measured B-12 in my case, I had to request methylmalonic acid, and no one has done homocystine. We have to be in charge of our own health.


Best of luck - Taylor

In Topic: Recovery From Neurological Problems

15 October 2006 - 05:45 AM

I am sorry to hear about your neurological problems, I know they are frustrating, and can be scarry. I am also interested in people's experience with neurological problems. I have zinging in my peripery (neruopathy) which seems to improve right after a dose of vitamin B12. I also think I have mild memory loss and confusion. Have you seen the recent study done at Mayo clinic? This is a study with a limited number of people. I want to explore whether folate and vitamin E are also deficient. Of course, I am taking oral supplements, but I do not know whether I am absorbing them. The vitamin B12 that I have is intranasal. The symptoms of peripheral neuropathy do decrease after a dose, so I belive that I have clinical symptoms of B12 deficiency. Any thoughts?

Cognitive impairment and celiac disease
• Hu WT,
• Murray JA,
• Greenaway MC,
• Parisi JE,
• Josephs KA.
Author Affiliations: Departments of Neurology, Internal Medicine, Psychology, and Laboratory Medicine and Pathology, Mayo Clinic College of Medicine, Rochester, Minn.
OBJECTIVE: To characterize the clinical, radiological, and electrophysiological laboratory profiles and histological features of patients who developed cognitive impairment temporally associated with celiac disease. DESIGN: Case series. SETTING: Referral center.Patients Patients with the onset of progressive cognitive decline within 2 years of symptomatic onset or with a severe exacerbation of biopsy-proved adult celiac disease were identified from the Mayo Clinic medical records from January 1, 1970, to December 31, 2005. Patients were excluded if an alternate cause of their cognitive impairment was identified. RESULTS: Thirteen patients (5 women) were identified. The median age at cognitive impairment onset was 64 years (range, 45-79 years), which coincided with symptom onset or exacerbation of diarrhea, steatorrhea, and abdominal cramping in 5 patients. Amnesia, acalculia, confusion, and personality changes were the most common presenting features. The average initial Short Test of Mental Status score was 28 of a total of 38 (range, 18-34), which was in the moderately impaired range. The results of neuropsychological testing suggested a trend of a frontosubcortical pattern of impairment. Ten patients had ataxia, and 4 of them also had peripheral neuropathy. Magnetic resonance imaging of the head showed nonspecific T2 hyperintensities, and electroencephalography showed nonspecific diffuse slowing. Deficiencies in folate, vitamin B(12), vitamin E, or a combination were identified in 4 patients, yet supplementation did not improve their neurological symptoms. Three patients improved or stabilized cognitively with gluten withdrawal. A detailed histological analysis revealed nonspecific gliosis. CONCLUSIONS: A possible association exists between progressive cognitive impairment and celiac disease, given the temporal relationship and the relatively high frequency of ataxia and peripheral neuropathy, more commonly associated with celiac disease. Given the impact for potential treatment of similar cases, recognition of this possible association and additional studies are warranted.

In Topic: Insomnia When Glutened

07 October 2006 - 11:08 AM

I have the same problem when glutened. I feel like there is a toxin in my body so that cytokines are produced and they are irritating so that I cannot relax. Lately, I have been getting up and drinking warm milk, eating a cookie and reading, then going back to sleep. This helps. Sorry and I too feel your pain! Taylor

In Topic: Cbs News Story

07 October 2006 - 10:41 AM

I agree that this was a good piece! And I cried too. Thank goodness that people will get this message. I am excited to send it to my parents, who so far have been to stuborn to get tested. Taylor

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