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naturegirl

Nighttime Nausea, Joint Pain, 'buzzing' Head, Swollen Glands, Etc

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Hello,

I'm still trying to figure out whether all my unexplained health issues are indeed related to gluten. Unfortunately, my symptoms seem to be getting progressively worse despite the fact that I have been strictly gluten-free for 3 years. I must admit that I'm feeling a bit despairing that I will ever get better today... But thought it would be better to act by reaching out here, then just 'give up'.

Most of my symptoms come and go and are sometimes much worse than other times - which I suppose is why I still believe it must be something that I am doing or eating that is causing them.

Periodically, I get the following symptoms, all at the same time, in what I consider to be 'episodes'. The onset is sudden:

  • Swollen abdomen
  • Nausea
  • Swollen glands (in neck - near tonsils)
  • Swollen lymph glands (groin, armpits, neck, knees...) - I think
  • Aching joints (hips, knees, elbows, small joints in fingers, toes...)
  • Headache (tight band around top of head)
  • Lack of appetite
  • Extreme fatigue
  • Brain fog
  • Sense of despair/ cry easily - that feels more physical than just a response to other symptoms
  • Painful urination (as though urine itself is irritating)
  • Sore throat
  • Slightly hoarse voice
  • Itchy acne like rash on forehead - like lots of tiny pimples beneath the skin (nowhere else - usually appears after other symptoms have subsided)
  • Weakness
  • Muscle aches
  • Dry/gritty eyes
  • Photosensitivity
  • Hypersensitive to smells
  • General malaise / feel like I'm getting the flu
  • Chills and feel hot at same time (prefer to be warm though)
  • Only option seems to be to 'sleep it off'

I first got this collection of symptoms and it lasted around 3 days in June 2009 (just after having Mirena IUD inserted). When I do not have them, I feel mostly like a healthy 33 year-old... but unfortunately they come frequently and are getting in the way of all aspects of my life (work, relationship, travel...).

The other symptoms/issues that I have are frequently getting very painful UTI's (this has vastly improved since I recently started doing bladder instillations - life-changing!) and gynecological issues (pain, inflammation, irritation, fissures...). I've had these issues since being a child.

Just these last couple of weeks, I've had a couple of newer symptoms add themselves to the list: Very bad night-time nausea and stomach cramps, to the point of waking me up as well as just feeling lousy in the morning. I also feel this strange 'buzzing' in my head (not a sound - more a sensation) when I wake in the night, and feel as though I might faint when I stand. I feel a bit feverish too... My throat pain has been more intense and lasted longer. I have a feeling like there's a lump in my throat (thyroid area?). The aching joints have also been worse these past couple of weeks (this usually is less severe and doesn't last as long) - and I felt as though my left hip (never been painful before) and right shoulder were kind of 'frozen' yesterday morning. I felt as though my arm and leg had pins and needles too and were tingly/numb. This stopped after about an hour of moving around gently. Had to sleep most of yesterday.

It is just difficult as I feel that the issues keep 'moving around' my body and new ones are appearing all the time.

The main thing that improved when I went gluten-free is the 'baseline' state of my digestive system. I used to always be bloated, have cramps, gurgling, flatulence... and when I'm not having one of these 'episodes' my stomach is really quite good! And even when I do have one of these 'episodes' it is never quite what it used to be... it feels more like a systemic inflammation, rather than a GI issue directly.

The one thing that is always there and sometimes worries me, is a painful swollen area in the lower right quadrant. I notice it most when I'm lying down and when my stomach is empty. It didn't used to feel like that... and for the past 4 years, it is always there, aching a little, and swollen to the touch (told dr's but no-one seems to think it is too much to worry about).

I recently had food poisoning (from raw salmon - probably salmonella) and although I was violently ill, I felt like a healthy 33-year-old having a 'normal' reaction, rather than this awful unexplained set of symptoms that just make me feel like I'm way beyond my years...

Sorry to be so long and so 'down' about it all... I suppose my main question is does this sound familiar (i.e. gluten response to contamination) or does is sounds like something else that you've experienced? Another food intolerance? Another health issue?

Thank you very much for your time.

Josie

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That sounds awful! I'm sorry you are going through this. I wonder if you may have something else going on besides something like celiac. Have you seen a doctor about this? Also have you had your vitamin levels checked? Some of my neurologic symptoms seemed to get better after I added a lot more B vitamins.

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Thank you for the kind words, Newbee! Yes, I have been to a lot of doctors (both in Europe and here in Colorado)... alternative and allopathic... but so far no answers as to what is really going on. I think that it is tricky doing some appointments over there and others here... I don't have American medical insurance, so I try to get most testing done in Europe, when I'm back (around 2x/year).

I feel that because I look healthy (not complaining about that - I feel lucky!) I sense that they don't fully believe the severity of how much these symptoms are impacting my life. I always feel as though I'm being mildly 'judged' as being a hyperchondriac (sometimes by friends/family too). I believe that those who do judge in this way, don't fully understand that I wouldn't be looking so hard for answers and solutions if I wasn't experiencing these debilitating symptoms so often. There are so many other things that I'd rather spend my time/energy on! With doctors, my experience is when they cannot find answers, they try to just 'play things down'... I've just started seeing a new doctor here in Colorado who is extremely expensive but I'm hoping we might get somewhere together.

So far, he is treating me with herbs (and some pharmaceuticals) for H. Pylori and Candida. He also thinks that I'm still getting contaminated with gluten (my other post). Fingers crossed, we'll get some answers...

I have done quite a few blood tests and vitamin levels look good. I did get B12 shots around 7 years ago, after I'd had amoebic dysentry while travelling in India... and they helped me a lot. I was feeling a bit low (but before all this weird 'collection' of symptoms started) and with the shots my energy and mood improved greatly.

I've also done some Myers cocktails via IV these past few months, including B vitamins... but have not noticed any differences in symptoms (actually a little worse if anything).

I also just did a 'female hormonal panel' (saliva samples over a whole month!) - so I'm waiting for those results. I did a blood test again and included test for lupus (as that has crossed my mind from stuff I've read).

Which symptoms are 'neurological', Newbee?

Thanks again!

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