The Search of Hay

Hi again, dear world.

Celiac.com Sponsor (A13):
 

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 of waiting seemed a long time, especially because I was so sure that this horrible brain fog could be maganged with a simple hormone intake.

Why I was so certain I had Hashimoto was because I had had some mysterious days when all my brain fog and tiredness went away, this could last for 6-20 hours. Within that time I could eat whatever I wanted (although I haven't risked trying gluten) however much I wanted without starting of symptoms (normally every food has it's max allowed quantity and following long recovery period). And I had this unfillable hunger, was over-energetic, and often I couldn't sleep for the whole night. Resembles HYPO->hyper->HYPOthyroidism, where the hyper period happens rarely (year 2014 only 5 times total). For many months I'd tried to induce these hyper-periods, but with very little succes. I noticed that if they happened, then usually right after my body had gone through some kind of stress.

1. Drinking 1l milk, 300g honey. Then riding a bike for 2 hours, feel really bad. Then eating rice, my heartrate goes to 90 (higher than usual when digesting), and got brain fog and tiredness. And then, after 2 hours, voila, I get 16 hours of clear mind and unsatisfiable hunger.
   
2. Drinking 1l milk. Then right away running very fast for 45 minutes. Then rest for 2 hours, then eat buckwheat flour. Again, 90 ppm. And voila - 14 hours of energeticness.
   
3. Drinking 1l yoghurt. 4 hours of foggyness. Then 6 hours of hunger and brightness. Did an experiment - eat 500 grams of the same rice withing these 6 hours. Nothing happened (normally I get more disturbing brain fog after eating 200g).
   
4. 200g cocoa powder, following really foggy evening-night, then the next day - very little fog, energetic.
   

Sometimes it also happens when I have diarrhea. And always after having fever. Sometimes also for a shorter period after feeling very tired after eating, then taking a nap, and the following meal is fog free.

So you see, it would seem like sometimes the stressful events cause some kind of fever-like reaction, that first feels very bad, but then especially good (like the disease has been fought off with great struggle). Stressful event presses the deteriorated thyroid to do its job in an emergency situation (bad feeling), and then with a last struggle it releases an exceptionally big amount of hormones (following over-energetic feeling).

Plus:

1. I also have painless/feverless throat inflammation (at least 3 years). Due to lack of fever/pain and the time it has been stayed (completely unchanged) it can't be viral/bacterial.
   
2. My throat feels tight
   
3. Seldomly there is radiating pain around thorat (in throat, cheek and ear regions)
   
4. No knee-jerk reflex (symptom of 1.hypothyroidism / 2.anemia / 3.spinal cord dysfunction)
   

So, yesterday I gave a blood test, checked for TPO antibodies, TSH, T3, and T4 levels. All were in very normal range, meaning NOT thyroid problem. I really had hoped for 2 months that this test would finally reveal what's wrong with me, but again, disappointment.

Later I did some background research and I found out that none of my 4 brothers-sisters and also my both parents had no knee-reflex, thus it is hereditary (and probably harmless). And my mother also has throat inflammation (pharyngitis), and she doesn't have hypothyroidism. Mysteriously each symptom my mother has fits into hypothyroidism profile (and she has ~80% of those symptoms) but the tests show negative, so I hope if I finally get diagnosed it will also shed light to her mysterious case.

In the meanwhile I also tested all vitamins+most of (bio)minerals that there exists (figured if I have a celiac then vitamin deficiency may cause some symptoms). At first it seemed some of them worked (B6, B9, D, and Cr), but later experiments proved me wrong, again!

Then i figured I haven't tried HCl (low stomach acid + SIBO would explain the immune reaction I get - undigested food enters bowels, immune system doesn't like it and attacks). Again, in the beginning it seemed to help a litlle bit, but later when I took 15x larger amounts (7.5mg Betaine HCl), it made a very little difference. And when I think about it, it doesn't affect my digestion even when I drink like 1l of water right after having a meal, so it really can't be HCl deficiency. (Stevie and Jordan say it also has to have pepsin in it, mine didn't have. But I really doubt it would make any difference in my case, because pepsin can't function in low-acid/watery environment.)

Fortunately I did discover one thing that helps me a bit - caffeine. When I tried black coffee it a while ago, then it induced a horrible fog. Little less worse with different teas. But now I got a Herbalife tea, that has some kind of raw coffee and tea powder in it, and it works much better - it actually helps me digest. So, I purchased caffeine pills, and it confirmed my results. Unfortunately they have quite strong side effects - mild diarrhea, urination pain, stomach gases and little pain in stomach. I will try to find some other raw coffee pulber that would not have these side effects.

What the effect could be from:

1. Caffeine reduces inflammation and innate immunity. Maybe it reduces inflammation in my stomach and tells my immune system not to develop a reaction to the foods I eat often.
   Differentials:
   
2. Caffeine activates blood flow + stimulates nervous system. Maybe the nervous system/muscles in my bowel isn't active enough (don't get enough blood), actually the nonfunctioning nerve-gut axis is linked to Irritable Bowel Syndrome.
   
3. Studies have also showed that caffeine stimulates thyroid. - Now ruled out in my case.
   

So, I'm waiting my first appointment with a new gastroenterologist in February (last one was 5 years ago). I will tell her everything I have tried in these 5 years, it will rule out a lot of conditions. And this time I won't let myself be diagnosed with "Irritable Bowel Syndrome" without doing colonoscopy and possibly endoscopy to rule out Inflammatory Bowel Diseases or non-healing bowel damage from celiac disease.

I am going to defeat this disease, and when I do, I will do everything to help science eradicate the incurable diseases/better diagnose them and give people choices they have no control over.