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naturegirl

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    Female
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    Boulder, CO

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About Me

Most of my symptoms come and go and are sometimes much worse than other times.

Since June 2012, I periodically get the following symptoms, all at the same time, in what I consider to be 'episodes'. The onset is sudden:

Swollen abdomen

Nausea (much worse at night/ in early morning)

Stomach cramps (much worse at night/ sometimes eating helps)

Swollen glands (in neck - near tonsils)

Swollen lymph nodes (groin, armpits, neck, knees...) - I think these are my lymph nodes (but could also be some other kind of gland?)

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 (hurts my eyes to drive at night, look at a computer screen...)

Hypersensitive to smells

General malaise / feel like I'm getting the flu

Chills and feel hot at same time (prefer to be warm though)

'Buzzing' in my head (not a sound - more a sensation)

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 the Mirena IUD inserted - not sure if related, might just be a weird coincidence). When I do not have them, I feel mostly like a healthy person in my early 30's... but unfortunately they come frequently, sometimes weekly, sometimes bi-weekly, and are getting in the way of all aspects of my life (work, relationship, travel...).

The other symptoms/issues that I have are more ongoing and I've had these issues since childhood, although some have got worse in the last couple of years. Frequently getting very painful UTI's /kidney infections (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 around age 8.

I've been gluten-free (and dairy light) since July 2009, which has helped me a LOT with my 'baseline' GI issues (bloating, diarrhea, flatulence, cramping, gurgling...). But not with these other symptoms (that started almost at same time.

  1. Good to know, thanks. I'm already off all oats but I do eat organic gluten-free bread, rice, quinoa and must admit, I have a sweet tooth (I love dark chocolate and sometimes indulge in gluten-free cake!). I would say that my diet is mostly organic wholefoods but by no means 100% and I consume grains, including organic corn and small amounts of soy (e.g. in...
  2. Thanks for sharing... I looked over symptoms for the different forms of thyroidism and it doesn't seem to really align with my symptoms but I will perhaps see whether the doctor recommends getting an thyroid ultrasound done (as I have had the strange sensations in that area). I'm also waiting for a 'hormone test (saliva samples over 30 days)' so perhaps that...
  3. Thanks a lot for sharing. How was your hyperthyroidism diagnosed? I did have a couple of thyroid function measurements done in this recent blood test. My TSH was 1.73 mU/L (normal range: 0.3-4.5) and 'free' T4 was 1.00 ng/dL (normal range: 0.7-1.8). I have recently had a subtle but noticeable sensation in my neck around where I think the thyroid is.....
  4. Makes sense! And you would recommend doing a repeat of that test to determine whether gluten contamination could be the source of my symptoms? Thanks.
  5. I'd be interested to hear of anyone else experiencing low cholesterol and/or cortisol and any accompanying symptoms. Does this often occur in celiacs (seen several other posts about this)? Even when they are on a gluten-free diet? I first had low cholesterol and cortisol flagged one year ago. I just received new bloodwork (see signature for numbers...
  6. Thanks a lot Skylark. That is good to know and is sort of what I was 'guessing'. I found your other longer post about this, which was really interesting and informative. I have done some scientific research, so I know that peer-reviewed publications are a good indicator that the data is solid! And the lack thereof is of concern (especially considering the...
  7. Thanks a lot Skylark! Much appreciated! Do you mean attach the actual lab results?
  8. Hi there... I posted in detail about this here but it was probably way too long! Has anyone experienced getting a lower anti-gliadin IgA (from stool testing) after being gluten-free? If so, did you also have some symptom relief? Thanks for your help!
  9. 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...
  10. Thanks so much for the responses... it is really helpful to just talk these things through with others that have had / are having similar challenges. I would not say that constipation is a major issue for me. It happens once in a while but is pretty low on the list of 'concerning symptoms'. I posted here (my previous post) about my other symptoms... ...
  11. 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...
  12. Hello, I was wondering if anyone else has had polyps found. The gastroenterologist found more than 30 polyps when I had a colonoscopy done (a year and a half ago when I was 31 years old). Fortunately, they were all hyperplastic and not of the type that tend to be pre-cancerous, after the biopsy. He removed most of them. I have not had a formal celiac...
  13. I've had really strong reactions to fluoride. I'm originally from Europe and grew up in the UK and Belgium, where they don't add fluoride to the water. When I first moved to the States I had 8 months of unexplained D (10x/day)... I was drinking filtered Brita water. When my D disappeared on going to Europe and promptly returned when I came back to the States...
  14. Hi there, I frequently consult this site and find it both helpful and reassuring. I posted here a couple of times a while ago... but am now going to post a few separate questions in the hope of finding some answers, as my symptoms seem to be continually getting worse despite being strictly gluten free (to the best of my knowledge) for 3 years now (I'm...
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