Neurogluten

Gluten-Related Neurologic Symptoms in Children

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 (see link).  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. I was fortunate to be interviewed for Ms. Boyd’s story, and the article contains a wealth of information from experts, including Drs. Fasano and Hadjivassiliou.

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-GF 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 GF 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 GF 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. Guandalini, the founder and medical director of The University of Chicago Celiac Disease Center, who wrote a recent review article 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.

Ruggieri MIncorpora GPolizzi A, et al. Low prevalence of neurologic and psychiatric manifestations in children with gluten sensitivity. J Pediatr. 2008 Feb; 152(2):244-9.

Boskovic AStankovic I. Axonal and demyelinating polyneuropathy associated with celiac disease. Indian Pediatr. 2014 Apr 8; 51(4):311-2.

Jorge RAguiar CEspinheira C, et al. A pediatric case of gluten sensitivity with severe neurological presentation. Eur J Pediatr. 2014 May 13. [Epub ahead of print]

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

10 thoughts on “Gluten-Related Neurologic Symptoms in Children

  1. Vik

    Jess, I don’t have kids or know any kids (that I know of) with celiac–but just wanted to say that YOUR kids are really fortunate to have you watching out for them, as are your little patients and their parents.

  2. Denise

    I appreciate mom’s like you that are willing to spend your “spare” time educating the masses. My daughter has celiac and has been GF for over 2 years. She still struggles with ADD and anxiety. Could this still be as a result of gluten damage and will get better with time?

    1. Jess Post author

      Hi Denise,
      I am not sure if her ongoing symptoms are related to gluten or not. I have read and learned that those of us with neurologic symptoms from gluten are often very sensitive to traces of gluten and cross-contamination. Is it possible that gluten is somehow sneaking into her system? Is she getting “glutened” frequently? Have you followed up to make sure that her celiac antibody levels have normalized after 2 years? Just some thoughts. Every time I get cross-contaminated my neuro symptoms (peripheral neuropathy and memory loss) return rather quickly and then take days to weeks to go away.
      Jess

  3. kat

    I have been reading up on colostrum and then searched for peripheral neuropathy and colostrum…and somehow happened here.I am gluten sensitive , have not been tested. But here is how I found out… I noticed that after I ate wheat my throat itched ,my sinuses would stuff up,the inside of my ears itched, and finally what caused me to cut out wheat was my scalp started really itching like never before.So I read online people have the same extreme itching on their scalp and what solved it was gluten or wheat elimination. I can eat certain wheat products it seems in that I don’t get migraines, or itching but I do have idiopathic peripheral neuropathy..unknown. but is it ..after reading this here, I’m thinking it is worth cutting it out all together if I could get the numbness to go away. I have just started colostrum and it helped tendons in a injured knee get better and peripheral n. very low ebb of pins and needles in my feet in fact my legs were starting to really ache all the time and colostrum has curtailed that to pretty much no pain. So when you are wheat /Gluten free does your peripheral neuropathy go away completely?! I think I am going to have to do go gluten free 100% to see if my feet come back.

    Kat

    1. Jess Post author

      HI Kat,
      In my experience, my peripheral neuropathy did resolve but I had to be as GF as humanly possible to make this happen. It does return whenever I am exposed to gluten cross contamination. I have interacted with many other celiacs and non-celiac gluten sensitives who have had their neuro symptoms improve with strict avoidance of gluten. That being said, it is important that you have a thorough evaluation to make sure that your neuropathic symptoms are not from something else, like thyroid disease or lupus (as going GF would have no impact on these problems). Have you seen a neurologist?
      Jess

      1. kat

        Yes I have seen A neurologist, and have a check up app in June. He saw an m-spike in my blood test and refered me to a hemotologist and I had my blood checked for the multiple myeloma and other irregular things and came back negotive. I still get a blood test every six months. I have been tested for thyroid and that is negotive . Have not been tested for lupus. I have looked up the symptoms and dosnt seem like I have them but can’t hurt to have them check. I have thought maybe thyroid in that both my mom and sister are hypo they take medicine for. I really don’t eat alot of gluten but I can fully cut it out, to see if peripheral neuropathy goes away …gluten is a strange thing…certain foods I get a migraine other gluten foods I don’t. But I did have a reaction to yeast extract …and breads have yeast in them so it may not be just gluten.

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  6. dale

    My daughter has been gluten free for 6 years. We have a completely gluten free home. The dogs even eat gluten free. But with all my hours of research I never came across the connection between yeast and gluten. So when I gave my daughter gluten free nutricitional yeast I thought I was giving her some b vitamins. But now she is suffering for more than a month with horrible reactions. She has extreme belly pain, constirpation, psychotic symptoms,and looking like she has autism symptoms. She could not eat or sleep. It was two hospitalization later and she is a little better. We have not found anything to make it stop. She is now eating and sleeping with drugs. Has anyone else had this problem. I am so sad that she is going through this from my lack of knowledge. So don’t eat yeast if you are celiac. Sorry this is written so poorly but it has been a month with very little sleep. so tired mom

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