My gluten, casein, epilepsy and Chron story

After many years I am returning to finalize this story about epilepsy, Chron, celiaky, gluten and casein.

Short story

Myoclonic and absence seizures at 14 months

Back in 2009 life of my son became severely complicated. As you can read in details 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 stil works today, 7 years later. 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

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 works

My son a year after
After 8 months we started a medically controlled experiment with a diet that had following results:
  • normal diet for 1 month (including gluten and casein): EEG very bad, many seizures
  • GFCF diet: after 8 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
After 7 years there are no seizures at all, all my son's development is normal.

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 that makes me a very probably patient for developing celiak disease.

After that I went for the same diet as my son (I never liked milk products anyway) and soon realized that many symptoms in my life that I took as normal (blood in toilet) were not normal. Later on I connected many other issues with my response on gluten and casein (and lactose).

My father's Chron

If you read my complete story you will find out that it connects to my father's rare condition in the hospital. But this part of the story remains unverified due to the fact that later in his life there were no new signs of Chron's. And he does not have the same genes as I do.

But this is not important any more because the only important reason for my writing here is epilepsy. I hope that at least one of children suffering it can be saved by these lines.

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:
  • no drugs helped
  • partial diet we tried for few months helped but never totally decreased the seizures
  • after 8 days of true full GFCF diet 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 our Frisium he became a completely normal boy. Frisium had a very negative effect and if I knew what I know now I would decline it. Even neurologist was very skeptical at that point if he should give it to him.

Why was 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 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.

Doctors

In case you inform your doctor of this they may be 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 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.

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.

Little bits of gluten and casein

Many times people are not aware there is gluten or casein in a food. And they well 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 is dangerous. Triggers the nerves in the intestine.

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;
(to be continued)
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