Sunday, April 29, 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.

<< 7. GFCF diet >>


Before this point in my life I have heard of celiaky once or twice. Gluten was almost an unkonow word, casein something I have never heard about. But according to many websites, citing scientific researches, a highly possible cause of seizures and epilepsy in children before 3 years are gluten and casein. Especially children with myoclonic seizures. And several other symptoms that very much looked like those of my son's.


It was late January and we were appointed for next exam in 3 days with new doctors in Ljubljana (city 100 km from ours). Since medicine was not working until that point, we have decided to start the diet at leas partially, to see if there are any effects.

The first evening, we have just left out the milk. And in the first night, we have noticed a difference we didn't really expect. He was sleeping much better. Before that night, he was waking up on 2 hours. That night, he was mostly sleeping. The next days, we were not sure about seizures and they seemed reduced, but sleeping was getting much better.

So we continued with the diet, but as we were also changing the medicine therapy at that time, we were in many doubts. Because the seizures went down in numbers, but they have changed as well. Before the seizures took about 3-5 minutes several times per day (up to 7), while afterwards some long-lasting (up to 15 minutes) seizures appeared, but were more rare.

This was one of many reasons we were struggling with the diet very much and didn't go full with it. We were just not sure what is making effect. On the other hand, with 1,5 years old child, you are trying to introduce many new foods, struggling to get him to eat anything. Not less important was a fact that such a diet was new to us. And we were no food experts. So we had no idea how to substitute all the needed foods and vitamins. We were learning every day where and what to buy. Because almost everything you buy in a store, contains gluten or casein.

So for the next 6 months, we were having a very non-strict gluten-free-casein-free diet. Seizures were decreasing, but never dissappeared. Almost every day, a seizure occurred. If I knew then what I know now, we would introduce a full strict GFCF diet from the start without any medicine and wait for at least a month.

(6. Search for solutions) <<
(8. Medicine or diet?) <<