Saturday, April 21, 2012

My Gluten Story


Diagnosing Mb. Chron's:

Google    ~   0.39 seconds.
DusanV   ~   39 minutes.
Doctors   ~   39 days.
This is the story about this diagnose.
About relationships between allergies, epilepsy, celiaky, Chron's, gluten and casein.

<< 6. Search for solutions >>


Within a few weeks, we became sure that Kepra is not helping. I was tracking data in details. I have noted every seizure - when it occured, how long it was and how "severe" it looked like. And I was noting every medicine level we gave to my son.


As it became obvious Kepra is not helping, we went back to the neurologist that was extensivly helpful and really "there for us". He added another medicine, called Karbox. In a few days, it worsened the situation. Even though it was not possible to know if that is from medicine, he decided to give up with Karbox. And directed us to a bigger hospital in our capital city Ljubljana.

Do not forget, I prefer professional help if possible. That is why I will still visit doctors and trust them about my health if there is something wrong with me. But sometimes, professionals just can't help, because they stick to their professional methods. And those methods, as proven through history over and over again, become outdated or just not right for specific case.

That is why I did something most heretic for medical community (at least around here, don't know about other places in the world): asked Google. This is something that triggers an alarm in the head of doctors around here. They become annoyed because you start asking silly questions. And because there are really a lot of fake advices and money-takers in the internet. And too many times, this hardens the work of doctors. They waste time with your pointless questions and you might be doing something that interferes with their work very much.

But as a parent, fighting for your child, you will ask anybody for help. Especially in the evening, after a long day of seizures. When darkness takes over the light of the day and you sit down, terrified by the unknown thing that took over the nervous system of your child.

That is when I started searching for solutions in the internet. It became clear to me very quickly that this search will be hard. Within a few clicks on each link, there are hundreds of unknown expressions. You get words that are highly sophisticated and some sentences just don't make sense. Another thing is language. English is not my native language. While I'm very good with it, some simple expressions might seem like alien language within medical context.

It took me days to just realize I'm hitting more or less the same websites which cover the issue extensivly (and make money from it). And I was reading the same sentances with descriptions that were related to epilepsy. What are the medics, what are the possible outcomes and how it affects the life of the person. Let me note here (not really relevant, but) that most of these websites are sponsored by pharmacy.

As a researcher, when I realize I'm hitting the same wall, I do something very simple. I rephrase the question or start asking totally other questions. So instead of "myoclonic seizures", I started searching for "myoclonic cause" or "myoclonic seizures solved". And of course many other search phrases.

That is when it became interesting. I started hitting autism, which was a scarry word. And even more scarry things I don't even remember in details. But besides them, I started getting few very imporant words within search results: gluten, casein, lactose. In normal conditions this would not trigger my attention very much. But  at that moment, these words started connecting the dots. Allergies. Could this be connected?

It was a conflicting thought. If this was anyhow connected, why on earth didn't doctors notice that? They have seen him, they were studying his medical files. I wanted to get the answer. So when we went to our next visits to doctors, I was prepared with questions regarding possibility that my son's epilepsy is related to gluten and casein. But at that time I didn't even know the words good enough since I have only read about them a few times. And as it turned out, neither did they know about any relationships.

(5. Professionals first) <<
(6. GFCF Diet) >>