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.

<< 8. Medicine or diet?

Despite the good progress, me and Natalija just couldn't understand why we can't get to zero seizures. Why are they still appearing. And we have realized that there won't be any quality answers from formal medicine shortly. Most of the threatment was about changing the dosis of medicine and checking the EEG.

So we have decided to take another step and try to get more answers about gluten and casein influence on Lan's health. So we went to gastroenterologist in our hospital. Yes, we have avoided the specialist we have been to before. And that was good. Because the lady specialist (and later her colleague) in the hospital was amazing. Instantly, when hearing our story, she started writing diagnostic tests orders. His blood was examined for a variety of possibilities. And the results were simple: Lan has a genetic predisposition for celiaky. It was obvious there is something hidden behind, although no obvious other symptoms were detected. But yes, he was already on the diet for a while, so other results could be missleading.

So it was decided together that we will make another test. For a month, we will introduce gluten back into his diet and see what happens. So we did it. The very first day we gave him a full dinner of flakes with milk. The next day, he had an incredible diarrhea. Practically water out of him. So we didn't combine milk and gluten anymore during that month. Mostly we have forced gluten.

During the month, seizures were noticably getting worse. Number and severity of seizures increased. I was writing down his seizures from the beginning and the graph started looking very bad again. There was 60% more seizures and they lasted much longer. When we came back to the hospital for EEG, it showed abnormal activity. It was really bad.

So doctors decided to increase the medicine because they were still not sure. Within 10 days of increasing, the seizures got even worse. When we came back to the hospital again, EEG was a total mess.

Then, Lan's main neurologist, noticed that we might be right about his diet. And he actually consulted other experts abroad. As it turned out, the medicine Lan was receiving for the last 6 months, was most probably having a negative effect on the seizures. On that day, he decied for radical change in therapy in 10 days. Full strict GFCF diet with removing the previous medicine and introducing a single new medicine in low dosis (Frisium). A medicine that even doesn't help alone in most cases.

Within 8 days, Lan had no noticable seizures. From that moment he is seizures free. Within 2 months, his EEG was almost totally ok.

Diet or medicine? I am sure that diet did most of the work (if not all) and the formal medicine was actually gone the wrong way, prolonging our battle. But never would I do it without professional help from medicine, doctors. From people that many times must be convinced, but they struggle to help. And even though they make mistakes, they can help you understand what is going on in the body, in the brain.

But never trust just medicine. Use Google, search, educate yourself. Do not trust everybody or anybody. On every truth, every idea, try to get other views. Check and double check. But search and get to know your enemy. That is the best strategy to beat him.

(7. GFCF diet) <<
9: Chron's >>