The Patient Celiac

There is a well-established relationship between celiac disease (and non-celiac gluten sensitivity) and the development of neurologic problems in adults. According to Dr. Marios Hadjivassiliou, a neurologist in the UK who is one of the world’s experts in this area, up to 50% of adults with newly diagnosed celiac disease have signs or symptoms of neurological problems. I have personally experienced a peripheral neuropathy (nerve damage) as a result of celiac disease and it was my neuropathy that prompted me to start writing about my experiences in 2012. If you are interested in learning more about gluten-related neurologic problems in adults, I urge you to read Christine Boyd’s article “Gluten and Your Brain” in the April/May 2014 issue of Living Without Magazine. The article contains a wealth of information from experts, including Drs. Fasano and Hadjivassiliou.

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Although there is definitely a link between gluten-related disorders and nerve and brain problems in adults, much less in known about the neurologic signs and symptoms in children with gluten sensitivity. This may be in part due to a 2008 paper in the Journal of Pediatrics that concluded that neurologic problems in children with celiac disease are rare. I have personally interacted with many parents of children with both celiac disease and non-celiac gluten sensitivity who have had their children’s neurologic and behavioral symptoms improve on the gluten-free diet. In addition, in just the last few weeks, there have been several published case reports regarding gluten-induced neurologic problems in kids. If you are interested in learning about the case reports, I have summarized them below:

1. The 1st case report is of a 15 year old girl with celiac disease who developed a peripheral neuropathy out of the blue that consisted of weakness and a pricking sensation in her legs. It was discovered that she had been accidentally eating biscuits that contained gluten for about 2 months prior to the neuropathy starting. Her neuropathic symptoms resolved when she stopped eating the non-gluten-free biscuits (see reference #3).
   
2. The 2nd case report is of a 3 year old girl who developed an acute disseminated encephalomyelitis (brain inflammation) and white matter lesions that were visible on her brain MRI. After going on the gluten-free diet her neurological symptoms resolved and the white matter lesions stopped growing in size (see reference #4).
   
3. The 3rd case report is of a 2 year old boy with epilepsy who continued to have seizures despite being on multiple seizure medications. He did not have any digestive symptoms, outside of canker sores in his mouth, but was found to carry one of the 2 main celiac genes (HLA-DQ8). Within 6 months of being on the gluten-free diet, his seizures improved, his EEG became normal, and he was able to be weaned off of all his seizure medications (see reference #5).
   

According to Dr. Guandlini, the founder and medical director of Open Original Shared Link who wrote a recent review Open Original Shared Link about celiac disease in children, neurologic signs and symptoms of celiac disease in the pediatric population can include all of the following: cerebellar ataxia, recurring headaches, peripheral neuropathy, seizures, and psychiatric disorders, including anxiety, panic attacks, and depression.

In writing and sharing this post I am not trying to state that all neurologic problems in kids are as a result of gluten, as this is clearly not the case. I am sharing this information in hopes that both celiac disease and non-celiac gluten sensitivity may be on both parents’ and doctors’ radars when neurologic signs and symptoms appear in kids, as well as to help prevent others from having a long delay in diagnosis like I did.

Thank you for reading and please feel free to share your personal experiences in the comments section.

References:

Hadjivassiliou, M, Sanders, D, Grubewald, R, et al. Gluten sensitivity: from gut to brain. The Lancet. March 2010. 9: 318-330.

Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, et al. Low prevalence of neurologic and psychiatric manifestations in children with gluten sensitivity. Open Original Shared Link 2008 Feb; 152(2):244-9.

Open Original Shared Link, Open Original Shared Link. Axonal and demyelinating polyneuropathy associated with celiac disease. Open Original Shared Link 2014 Apr 8; 51(4):311-2.

Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, et al. A pediatric case of gluten sensitivity with severe neurological presentation. Open Original Shared Link 2014 May 13. [Epub ahead of print]

Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, et al. An unusual case of drug-resistant epilepsy in a child with non-celiac gluten sensitivity. Open Original Shared Link 2014 Apr 18. pii: S1059-1311(14)00106-X. doi: 10.1016/j.seizure.2014.04.005. [Epub ahead of print]