The Search of Hay

What's ironical is that 7 years ago I 'asked' for a 'challenge that would test my limits'. Back then I was a 14y old unpopular computer-freak, and in the summer I decided to change myself radically. I was in deep awe of everything that was more-than-human, especially the Marathon Monks of Japan (they run marathon for 1000 days within 7 years; if they stop during a run, they have to commit harakiri suicide - they even carry a knife with them for the occasion; also they do other amazing stuff Open Original Shared Link).

So, in that summer I started to always wear short clothes no matter how chilly it was outside, did much sport, hiked through forests on bare feet, no computer and TV any more, started learning French. At school and elsewhere I continued that attitude for the 2 following years (biking/running/hiking/sking to school and after lessons back, morning bathes in nearby lake, studying purely for the intellectual pleasure).

I didn't specifically 'ask' for a disease, I just wanted sth that would be unimaginably hard to defeat, a battle that would make me stronger (my motto was 'what doesn't kill you will make you stronger').

In the end of the August (2008), the first symptoms started... I know this is pure coinidence, that's why it's so ironical.

Either the way, it has changed me in lots of ways. Most importantly, I know how badly some people can feel (and much worse than me, because my condition hasn't had much physical pain in it), and doubt whether their condition is or is not 'normal', because for them it has become normal.

I hope this 'knowing' will give me future empathy needed to restlessly dedicate my life to improving science, because that's the only way we're going to eradicate the existing depression in the world. But first I have to win the battle of mine (at least overcome brain fog).

Get an IGA/TTG blood test for Celiac. Even if you were negative five years ago you could be positive by now. That should tell you everything you need to know. Just curious, did they do a biopsy when you got scoped? My GI said I was fine and then the biopsy came back positive as well as the blood test. Some of your symptoms seem to match Celiac, but it effects people very differently so you definitely want to rule it out or at least confirm you have it for certain. Good luck.

Get an IGA/TTG blood test for Celiac. Even if you were negative five years ago you could be positive by now. That should tell you everything you need to know. Just curious, did they do a biopsy when you got scoped? My GI said I was fine and then the biopsy came back positive as well as the blood test. Some of your symptoms seem to match Celiac, but it effects people very differently so you definitely want to rule it out or at least confirm you have it for certain. Good luck.

Yes, they did biopsy of stomach and duodenum. The only inflamed part was the pyloric antrum of the stomach (plasma cell hyperplasia or sth) and there were some visible erosions in the esophagus. No inflammation of duodenum, its biopsy OK.

• celiac blood test negative, while still on gluten (5 years ago)
• now after five years of extra strict gluten free diet (I mean I've literally tested like 200 gluten free cereal products to find the purest ones) with OK duodenum - I still have what seems to be 'leaky gut' (whatever I eat, my mind gets numbed, body tired, thirstiness - all are non-IBS symptoms)

Doesn't seem like celiac at all, because its symptoms would have subsided with the diet. And tests say no.

My theory is that I have an autoimmune disease that causes leaky gut.

Open Original Shared Link

Open Original Shared Link

Every time I eat, the macromolecules get released into the blood stream and the immune system reacts to them, forming my symptoms. This far I have deduced from some specific observations in my diet (the more often I eat sth, like a specific rice product, the greater the symptoms, thus 'memory', thus immune system).

From the possible causes I could find, only IBD and Multiple Sclerosis are possible, if to exclude Celiac.

The multiple sclerosis page says that leaky gut can cause MS and perhaps vice versa. It would explain the neurological symptoms (immune system recognizes food macromolecules and reacts with autoimmune attack on nervous system), although I lack many MS symptoms.

What I'm going to do soon is getting back on gluten, then let again do the biopsies, this time to the entire small intestine to discover any "hidden" inflammations. That would be the best chance for finding any inflammation that could benefit for 'leaky gut'. Also blood tests for celiac, ANA for Sjoegren (dry eyes + thirst + it can cause neurological symptoms), and if they find nothing or say "can't treat the inflammation", then MRI of brain to find "secondary symptoms" to confirm MS or Sjoegren or some other autoimmune brain-eating disease.