After many years I am returning to finalize this story about epilepsy, celiaky, gluten, casein, CBD, gut microbiota.
After 10 months of hell we found a simple treatment that worked. Actually we found it after about 1 month after the first seizure but because we were not sure about it, he suffered for 9 more months.
Short story
Myoclonic and absence seizures at 14 months
Back in 2009 life of my son became severely complicated. As you can read in the longer (old) version if you prefer, at age of 14 months my son was diagnosed a very special form of epilepsy. Somewhere in between a classic specter of Myoclonic and Absence seizures. And with ever more complicated report by the neurologist who took the first EEG recording.After 10 months of hell we found a simple treatment that worked. Actually we found it after about 1 month after the first seizure but because we were not sure about it, he suffered for 9 more months.
No medicine worked
Initially we took several drugs that may help in epilepsy. Nothing worked. The seizures were the same no matter the dosage or time of using it. And we had some top neurologists from the country working on the case.
Gluten and Casein Free (GFCF) diet trials
Doctors disliked it, but we had to do Googling: allergies and seizures. A few clicks later we have seen articles related to seizures and GFCF diet. So we gave it a shy shot. Firt we took out milk. Things improved. Then we took out gluten but left milk. No mayor changes.
And so for 4 months we went back and forth, inbetween increasing the drugs (Valproat and Tegretol) amounts. You can see the graph below.
Experiment
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| My son a year after |
After 8 months we started a controlled experiment that had following results:
- normal diet for 1 month (including gluten and casein): EEG very bad, many seizures
- GFCF diet with Frisium: after 3 days the first seizure-free day
- GFCF diet: after 1,5 months the EEG was almost perfect;
- GFCF diet: after 6 months EEG was clear
- Frisium removed 1,5 years later, all well
For 7 years there were no seizures at all, our son's development was normal.
Experiment prooved that the drugs (Valproat and Tegretol) were in fact making things worse.
My hidden Celiak Disease
I never knew it before but some 6 months after my son was seizure-free I went for a genetic test to a lab. It turned out I have a DQ2/DQ8 gene mutation that makes me a very probably patient for developing celiak disease. I am on a GFCF diet from that moment on with many improvements. Even my blood exams which were always out of normal, are now normal. My overall health improved significantly. But this is not a story about me.
Seizures again at 9 years: B complex + CBD (cannabiol) helped
So we have had a wonderful life until he was 9 when we noticed the seizures again. Even though he was on diet. How come? We'll get to that...
We have tried Frisium again as it was the last used and it didn't help. Petnidan and Depakine as well not. But then, we started adding B complex which already helped in decreasing the number of seizures. And once we replaced Depakine with CBD oil, the seizures were gone again.
He stopped using CBD and B complex after a year and was seizures-free for another 6 years.
What did we learn this time?
The main cause is gut microbioma instability. As we can read in this amazing study by a team of Chinese researchers (and many others since 2015), CBD and B complex helps in managing the gut microbioma - which in turn manages the important brain activity and biochemical situation.
It is rather complex on the scientific level, but really that simple - you consume seizures.
Thus we have learned that there is not 1 thing that helps. CBD can reduce seizures through improving gut microbioma. But if you are destroying bacteria you require at the same time by eating or drinking substances like gluten or casein (depending on your body), you will not achieve 100% seizure free state.
Seizures again at the age of 15: what's next?
It just started today as I am writing this. One grand mal at 4AM. Seems like the issue is the same as we introduced various new foods and not suplementing CBD or B complex.
He has as well grown very fast in the last year, becoming strong and sporting a lot. Obviously the gut microbioma must have changed as well and requires intervention.
Post will be updated as we learn more.
Is it real?
Yes. I have medical records and all other details to prove if you require. I was writing a diary with seizures, medicine and diet. It may have small errors on certain days (I was not with my son 24 hours), but it is at least 95% correct in data collection.
I am adding a graph here just in case you prefer data. If you do not know how to read it I will write in few simple lines:
- GFCF diet with Frisium helped
- partial diet we tried for few months helped but never totally decreased the seizures
- after 3 days of true full GFCF diet with Frisium we have never noticed a seizure any more
On September 14th neurologist decided we should try a full diet. He advised taking all the drugs out and go on full diet. The only medicine added was frisium intended as sedative (not a drug for epilepsy) which my son took for another year.
8 days after that we have never seen a seizure any more. EEG became completely normal in 6 months. When we took out Frisium he became a completely normal boy. Frisium had a very negative effect and we are not sure yet if it helped in seizures. My son was very sleepy all this time and after getting off the Firisum, he became an amazingly different, happy boy.
Why am I writing this?
My only purpose of writing this is to help anyone who might come the same way. Shorten the hell they may suffer and get to the solution fast. And I am sure many will. But despite my only desire to help I have to first state few important facts:
- I am no doctor, medical professional or anything similar. I am writing just what I have learned along the way. My experience and what worked for my son and eventually for me.
- Our case is just one and may not be the same as yours.
- Inform your doctors and talk to them about anything you are doing.
If you decide to try it out
Here are a few details that will come along the way if you decide to try this diet for epilepsy. I've been through all of them and with success. Any day I look at my child I am happy I did it right. Cannot imagine the hell he would be in if I took another path.
Don't forget: it is more than one thing
Unfortanetly. You might want a simple solution in form of one medicine. Some are that lucky and it works, but comes with side effects. Every medicine has side effects.
So you should work on diet and beneficial remedies like CBD and B vitamins. Much of this can be done just by diet, but we have seen that CBD speeds up the improvement path.
And some drugs can even turn things bad as they further damage the gut bacteria you need.
Doctors
In case you inform your doctor of this they may be very skeptical. This is normal. Most of their studies and workflow is excluding dietary issues. And even if they are aware of the possibility, they will be reluctant to agree for many reasons:
- This diet is hard to control. If you are not careful or your grandmother puts just a little bread to the lunch, you did nothing. Seizures will remain and there will be no proof if this works. Therefore they cannot control the real effect of the diet on seizures.
- Many people sell stuff to worried parents. Especially on the internet. So any internet source is always associating doctors with sales. Luckily I do not sell anything about medicine or to parents. My profession and job is completely out of this.
- Medical research on this relationship is very scarce and rare. Normally because no pharmaceutical company wants to do it. So there is very little science that can support our results.
- Doctors are specialists. Neurologists know very little about intestine or diet. They leave this to gastroenterology. But the seizures that my son experienced started in his intestine and distributed to the brains (where neurologist would start his examination and do the EEG). Yet nobody ever did the EEG of the intestine. At least I do not know about it.
But do work with them. You need them to get the best CBD. If you are in a normally developed country, they should have it available.
Grandmothers and other skeptics
Even today when I approach a normal person explaining that a diet healed my son from epilepsy I sense doubt and confusion. In minds of ordinary people and especially grandmothers there is no relationship between food and epilepsy.
So if you consider trying it with your child, make sure there are no grandparents or other skeptics around. They love your child and want to protect him. So they will make sure you are not making a mistake and secretly feed your child with some gluten if possible.
Avoid skeptics, you will not convince them with anything. They are afraid of dietary changes. Go for a vacation or plan other ways to get them out of any possible contamination.
And this is very wrong because you will get a mixed result. Perhaps the seizures will change a bit, become somehow milder but will remain. Even the smallest doze can be dangerous. Kills some gut bacteria that you are lacking.
In celiak disease an amount of 20 parts of gluten per million is enough to trigger problems. That's small. It is microscopic. You should not even prepare normal food or GFCF food in the same kitchen.
There are million of sources in the internet about how to implement proper gluten-free diet. Read them and think about them, make sure you follow at least these main rules:
So if you consider trying it with your child, make sure there are no grandparents or other skeptics around. They love your child and want to protect him. So they will make sure you are not making a mistake and secretly feed your child with some gluten if possible.
Avoid skeptics, you will not convince them with anything. They are afraid of dietary changes. Go for a vacation or plan other ways to get them out of any possible contamination.
Little bits of gluten and casein
Many times people are not aware there is gluten or casein in a food. And they add something with gluten to the dish without knowing.And this is very wrong because you will get a mixed result. Perhaps the seizures will change a bit, become somehow milder but will remain. Even the smallest doze can be dangerous. Kills some gut bacteria that you are lacking.
In celiak disease an amount of 20 parts of gluten per million is enough to trigger problems. That's small. It is microscopic. You should not even prepare normal food or GFCF food in the same kitchen.
There are million of sources in the internet about how to implement proper gluten-free diet. Read them and think about them, make sure you follow at least these main rules:
- read all the details on any processed food you buy; as you will notice about 95% of all the food in your supermarket is most probably containing gluten or casein;
- clean out your kitchen and mostly all of your kitchen equipment;
- do not prepare diet food together with other food; in fact consider eating the same, it can be done
- avoid any food at the parties with friends, bring your own food; friends will try to help but make dozens of mistakes (their kitchen is very contaminated);
- be patient and careful, GFCF food is amazing once you learn about it: I make the best pizzas and bread among our friends and we prepare some of the best deserts;
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