HayInNeedleStack
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About Me
Digestive problems since 14y old (2008).
2010 - celiac blood test negative. Another (leukocyte) test showed multiple food intolerances, worst of them to gluten containing foods (NCGS). Since then 100% gluten free, and also eliminating other foods.
2012 - specific rotation diet (similar to "Rotation diet" for food allergies)
2014-2015 - brain fog worsening. Lots of tests and research to finally get a diagosis, yet still undiagnosed.
I don't mind being on strict diets. I just want to be able to THINK clearly again. I would sacrifice a lot for that.
The most interesting fact about my disease, I call it 'memory':
Something in my body knows how much I've eaten a specific substance. This 'memory' is VERY good - even very small changes in consistency is enough to classify it as 'New food'. For example:
Basmati rice from 1. Italy 2. India 3. Pakistan 4. Bangladesh
My body knows they are different and has a diffent mechanism for each of them. The more I eat a product, the more this 'memory' reacts to it (the more severe brain fog).
This 'memory' differentiates also buckwheat, millet, oat and other cereal products. It is not so specific about other foods (dairy, meat, nuts). Then it just has count for 'milk' or 'lamb meat' or 'almonds' (guess the products of these categories have too similar consistency).
Then I have to wait some period (1-20 days) of time until this 'memory' gradually 'forgets'. Then I can start the cycle again (hence 'rotation'). I rotate all foods I eat.
I've ruled out the theory of 'exhausting a specific enzyme storage'. That leaves only one explanation - I have a very strangely acting immune system (but not allergy) that reacts to foods. Knowing what mechanism it is, I know better how to diagnose and treat it.:
*UPDATE: The tests show immune system is okay. Also, it is beginning to dawn me that the root problem is somewhere else than in GI tract.
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Two examples about the stupidity of the doctors
HayInNeedleStack commented on HayInNeedleStack's blog entry in The Search of Hay
I've done that mistake too, but for other reasons. First because I've noticed that some specialists really aren't interested in symptoms that don't fall into the category of diseases they are used to dealing with (hence "specialists"). Second because I hadn't noticed the symptoms or thought they weren't important. All wrong. It's like in doctor House -... -
Two examples about the stupidity of the doctors
HayInNeedleStack posted a blog entry in The Search of Hay
Both examples were originally posted on another forum, where I discuss a topic of my initiated. 1. Are doctors able to perform a proper differential diagnosis? An example about the incompetence of human brain would be medicine. Did you know that the average time that goes for diagnosing Sjogren's Syndrome (an autoimmune disease most often... -
Play some telltale games and learn to manipulate people into the way you want them to be, that would be in your case them understanding that big sh*t begins with tiny piece of cr*p. If no succeed, they are not worth further efforts.
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The last blog entry was about my GI not having a clue what's wrong with me. I was angry, and even more angrier when another senior GI said the exact same thing, although he did say it could be IBS. I loudly thought "f*ck you", because I gave him my whole list of symptoms, and expressed my solemn concern that this list contains A LOT more symptoms than just...
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Gi Visited - Still Undiagnosed
HayInNeedleStack commented on HayInNeedleStack's blog entry in The Search of Hay
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... -
Gi Visited - Still Undiagnosed
HayInNeedleStack commented on HayInNeedleStack's blog entry in 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... -
○Milk lactose test (blood sugar measured 4 times within 1 hour after consumption) - negative ○No inflammatory markers in blood test, no amnesia, immune cells in their reference range. Hidden blood in stool - 1st time positive, 2nd time negative Calprotectin in stool - negative Parasites in stool - negative -> IBD not likely Endoscopy: ○Some erosi...
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Hi again, dear world. This is my second blog post. In the meanwhile I have had a really busy time testing new theories about my undiagnosed disease. Here is what has happened: In the end of November I visited my GP, and got a referral to visit a gastroentrologist in February. At that time I was so sure that I had Hashimoto thyroiditis, and two months...
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EDIT: Is there a "wrap text" option for the text to eliminate the now-present horizontal scroll of this entry? Today I was thinking about my back pain during when waking up in the mornings and decided to do some research in the internet. I bumped into diseases like scoliosis, lordosis and kyphosis. I decided to take a look in the mirror and saw that I...