Hi. I'm glad to have found this site, and look forward to hearing what people have found to manage absence seizures. I have two boys, one is 7, and the other is almost 2. My 7 year old son was diagnosed with Absence seizures September 2011. But in retrospect, we think he was having them for a few years, but just had attention problems, and defiance issues. 3 months after his diagnosis, through routine MRI, a thalamic glioma was found. Neuro believes it is an incidental finding, unrelated. He has been on 4 meds, and seizures haven't been fully controlled. My younger son and I were both found to be gluten intolerant this past year, (confirmed by bloodwork for me and skin prick testing for him) and have thus gone gluten free. I have read several postings/ studies that suggest Absence Seizures could be caused by Celiac or gluten intolerance. So we figured since his brother and myself are GI, that it wouldn't hurt to put him on a gluten-free diet. So we started him GF a few months ago, and are considering taking him off AED's because of side effects. He is currently taking topamax and Lamictal. At the end of the month, Neuro plans to initiate the tapering off of the Topamax, as we believe this AED is causing the majority of side effects. Lamictal was added about 2-3 months ago in preparation of it building up and replacing Topamax. He is so different when on any AED's, Depakote being the worst so far, followed closely by topamax. We really want to see if being gluten-free remedies the seizures. Before any AED's, he was having 50-100 seizures a day, lasting between 10-20 seconds. This past month, he was diagnosed with ADHD, combined type, which was no surprise, as both his father and I also have it. Side effects are an exasperated impulsivity, extreme fatigue, slower processing speed & working memory, and even a little bit of aggression. He has been having MRI's for his tumor every 3 months, but recently every 6 months. It is believed to be benign, but has grown 1cm. So, I am just thinking about ditching the AED's and see if a GF lifestyle will be enough to control the seizures. Anyone have any experience/ success?
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Hi everybody, I'm new here! Anyone have success with a gluten-free diet?
- Thread starter Erika
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Hi Erika, welcome to CWE!
Some folks have found that a dietary approach helps with seizure control, particularly if there is an intolerance or allergy that may be interfering with the way that the body absorbs nutrients (resulting in an imbalance that affects the brain). The link between celiac and epilepsy is clear, but there have been fewer studies looking at gluten intolerance. Nevertheless, there seems to be at least anecdotal evidence to suggest that your son might be able to reduce his reliance on meds to control his symptoms.
These links from the CWE archives on the subject of gluten may be of interest:
http://www.coping-with-epilepsy.com/forums/f32/gluten-free-diet-no-seizures-8299/
http://www.coping-with-epilepsy.com/forums/f22/gluten-docs-seizures-good-news-5464/
http://www.coping-with-epilepsy.com/forums/f39/gluten-free-diet-13173/
http://www.coping-with-epilepsy.com/forums/f23/celiac-sprue-gluten-intolerance-epilepsy-1822/
http://www.coping-with-epilepsy.com/forums/f23/gluten-epilepsy-leaky-brain-syndrome-13406/
If you are interested in non-medication treatment approaches, you may also want to check out neurofeedback: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/ It can potentially help with both seizure symptoms and those of ADHD.
Best,
Nakamova
Some folks have found that a dietary approach helps with seizure control, particularly if there is an intolerance or allergy that may be interfering with the way that the body absorbs nutrients (resulting in an imbalance that affects the brain). The link between celiac and epilepsy is clear, but there have been fewer studies looking at gluten intolerance. Nevertheless, there seems to be at least anecdotal evidence to suggest that your son might be able to reduce his reliance on meds to control his symptoms.
These links from the CWE archives on the subject of gluten may be of interest:
http://www.coping-with-epilepsy.com/forums/f32/gluten-free-diet-no-seizures-8299/
http://www.coping-with-epilepsy.com/forums/f22/gluten-docs-seizures-good-news-5464/
http://www.coping-with-epilepsy.com/forums/f39/gluten-free-diet-13173/
http://www.coping-with-epilepsy.com/forums/f23/celiac-sprue-gluten-intolerance-epilepsy-1822/
http://www.coping-with-epilepsy.com/forums/f23/gluten-epilepsy-leaky-brain-syndrome-13406/
If you are interested in non-medication treatment approaches, you may also want to check out neurofeedback: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/ It can potentially help with both seizure symptoms and those of ADHD.
Best,
Nakamova
Nakamova,
I appreciate your response, and I am going to check out all the links. We see my son's Neuro at the end of the month, and we will discuss taking him off the meds for a trial to see if being GF has ceased the need for AED's. I am assuming that the Neuro will advise against this, as he was very closed off to when we questioned him about the Ketogenic diet. I am also thinking of a modified Paleo diet in addition to the GF. Hoping to try this out in a few weeks since summer vacation starts and I can keep a closer eye on him. I am worried that this could cause worsening of seizures, and possibly tonic clonic. My son has two 1st cousins with Absence seizures. The older one actually had two tonic colonics, which led to her diagnosis, but in retrospect, her mother thinks she had been having Absence seizures for many years. Her doc said that untreated Absence seizures can progress to the tonic clonic ones.
I appreciate your response, and I am going to check out all the links. We see my son's Neuro at the end of the month, and we will discuss taking him off the meds for a trial to see if being GF has ceased the need for AED's. I am assuming that the Neuro will advise against this, as he was very closed off to when we questioned him about the Ketogenic diet. I am also thinking of a modified Paleo diet in addition to the GF. Hoping to try this out in a few weeks since summer vacation starts and I can keep a closer eye on him. I am worried that this could cause worsening of seizures, and possibly tonic clonic. My son has two 1st cousins with Absence seizures. The older one actually had two tonic colonics, which led to her diagnosis, but in retrospect, her mother thinks she had been having Absence seizures for many years. Her doc said that untreated Absence seizures can progress to the tonic clonic ones.
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Many neurologists are unfamiliar with dietary approaches to seizure control or are unwilling to consider them. You (and your cousins) might also look into the Modified Atkins Diet -- it has proven success in treating absence seizures in particular. See http://www.hopkinschildrens.org/High-Fat-Diets-Effectively-Treat-Absence-Epilepsy.aspx
I say go with your "gut" feeling (pun intended), and give the diets a try -- while paying close attention to monitor the results. For some folks the dietary changes may take gradual effect over a few months as the body recalibrates, so you may need to be patient. I wish you success -- please let us know how things turn out.
I say go with your "gut" feeling (pun intended), and give the diets a try -- while paying close attention to monitor the results. For some folks the dietary changes may take gradual effect over a few months as the body recalibrates, so you may need to be patient. I wish you success -- please let us know how things turn out.
Thank you. I have briefly read about the modified Adkins as well.....it is pretty similar to the Paleo, I think. You are right about the Neuro's unwillingness to consider alternative approaches. It seems to be "all meds" with them. I know it is because of their training and all, but it couldn't hurt to be a little more open-minded. We live in a small town, and don't have a lot of access to holistic doctors, etc. But we do take our son to Cleveland Clinic. Perhaps I should consult different departments such as Gastro, so see what their thoughts are. I just obviously don't want to cause my son any harm.....and we are supposed to regard the doctors as the experts, but I am conflicted with that notion.
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Of course as you've found, the meds (or their side effects) can do harm as well. They are a bit of a blunt instrument -- and the only instrument that the majority of neurologists wield. I hope you can find support for your diet-related plan -- you certainly kind find support here at CWE.
You might be interested in the thread below -- it's about how a mom found that the meds were making things worse for her daughter's seizures, and how dietary changes led to seizure control. (It also talks about neurofeedback, but the nutritional modifications end up being the main story.):
http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/
You might be interested in the thread below -- it's about how a mom found that the meds were making things worse for her daughter's seizures, and how dietary changes led to seizure control. (It also talks about neurofeedback, but the nutritional modifications end up being the main story.):
http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/