3 Years On, Still Sick.

[up late]

My knees and calves have started to go down a bit, the bottom of my calves tho feel hard as a rock. I've managed to get things to settle a bit with the anti inflammatory, strong OTC pain relief, wearing tight stockings and staying off my feet, fingers crossed nothing else happens before I get to the specialists.

I've just stripped my diet back to something very close to the allergy safe one I was on before they started giving me challenges. If it is something in my diet I should start to come good in about two weeks. I suspect if anything it's going to be the amines. Theoretically something like a fish meal that wasn't so fresh could push the level high enough to provoke a reaction if my accumulative level was already way up. Alcohol increases absorption which would provoke a faster/stronger reaction and could explain why I can't tolerate alcohol. I still don't see it doing that much though, nothing has ever done that to me, it would have had to have been a whopper dose to have pushed it up to a level I've never experienced before and get that kind of reaction, I would have had to have been practically poisoned with it. I don't know if being gluten-free has any effect on amine sensitivity or absorption, gluten-free, not drinking, not smoking and eating more healthy are the only things I'm doing different.

I've got another month and a half till I go back to the clinic and I've run out of options, it's a pain to be limited to not much more than rice, chicken and a few selected fruit and veg but in the short term it won't hurt and I figure it's the safest thing I can do right now.

[up late]

I'm having a LOT of trouble loading this site, can someone post a link to the low fi version?

*crossed fingers I don't lose this post too*

Alergy clinc today, they did a diet review, I am totally gluten-free. Amines, preservatives and dairy are now removed completely on a month trial. I had some improvement cutting down from what info I had over the last several weeks, off most pain meds now.

Hidden sorces of amines were picked up, alcohol and mixers were a source. Amines had inadvertantly increased when I went gluten-free initially because of what I sustituted for gluten containing foods, the reason I'd got rid of one set of symptoms only to pick up another.

rheumatolgist tommorow for test results.

[up late]

The rhuematology workup was normal except for high calcium, it's been both high and normal before so he's retesting. He also said if I have another flare up I can get seen straight away so I'm not going to be left to deal with it all on my own like I was back when all this started.

[precious007]

Hi everyone. I've been gluten-free for about 3-4 years now (after 18 years of symptoms) I had a big improvement when I first went gluten-free but somehow I've ended up sicker than I was before (although not with the same the symptoms)

My stomach problems cleared up gluten-free (which were excruciating so was worth all the hassle on it's own) and I don't get those awful maddening itchy rashes as often. Also my migraines have thinned out and not as severe, join pain had been improving and my anxiety level had dropped as well. I did the elimination diet through the hospital so I've been screened for other allergies and intolerances, I saw their dietitian who monitored the gluten-free transition and the sensitivity I had to dairy cleared up after several months gluten-free.

After the first year I stopped getting better, at first it was just fatigue (though worse than when I ate gluten) I went back to the clinic and the dr told me to give it a bit longer. Now it's turned into utter exhaustion. I've had to quit work and I'm down to only 2-3 productive hours a day, I cannot push through it anymore without collapsing in pain that leaves me completely burnt out and barely able to move.

I now also have more chronic pain, joint pain, bone pain, muscle pain, I'm in the process of trying different pain meds. This year I've packed on a stack of unexplained weight (with no change to diet or amount of exercise) and I keep blowing up with fluid. I've recently had MS like symptoms (numbness, tingling, vertigo and I was unable to walk properly for 2 weeks) It's left me with leg muscle weakness, clumsiness and dragging one of my feet. MRI and a neuro consult came back clear. I was tested for vitamin deficiencies (I had low D the first year but corrected with a high dose supplement), they were ok, cholesterol ok. I have had low potassium in the past but with different symptoms (BP low, sinus bradicardia on an ECG with bad chest pain). I have osteoporosis (which I'm not old enough to have) but it was stable at the last bone scan. Chronic UTI's (and all the lovely things that go with them) have finally cleared up after multiple doses of antibiotics that went on for a year and a half, I saw a urologist and that's clear too. Tested for diabetes, rheumatoid, FBC, liver, stroke, HIV, thyroid all negative.

So far the only thing current that's shown up is a slightly high free testosterone (my estrogen/progesterone are ok) and ketones which the dr says is likely after a virus. Visually my colour and skin temp are a bit like something from day of the living dead, dark circles, grey pallor, hair and skin are flakey dry, limping, I don't look well. I also have the coeliac genotype which I don't know a lot about or if it's relevant for something else. Other than that apparently I'm healthy :/

Has anyone had something similar or know what might be going on? It feels like everything is shutting down, it's picking up speed and I don't know why. I haven't been able to get a diagnosis much less treatment and I'm running out of options.

 

hi - Your post caught my attention because of the myriad of symptoms you're dealing with which are very close/similar to what I am experiencing for years, in the past 3 or so years everything went downhill with months of being almost bedridden then I slowly regain some of my health back. 

 

To make the story short this cannot be just celiac in my opinion, I'm also dealing with bouts of POTS, heart issues, mainly tachycardia and low blood pressure, muscle pain, shooting pains, dizziness, loss of coordination, blurry vision (I have a list of almost 100 symptoms and another list of about 15 diagnoses to date. 

 

I have been suspected of Lupus, Ankylosing Spondylitis and what not, still haven't done the tests, I am in the process (I didn't have the money to see doctors and didn't have insurance for years either. Now I am in the process of seeing more specialist even though I hate bouncing back and forth from hospitals, ER, and doctors, I also suffer from anxiety and depression issues and it's really a burden for me. 

 

My last flare made me bed ridden an am still very sick - Doctors have told me to have an upper and lower endoscopy. I have only had the upper endoscopy done and guess what (I have esophageal candidias - and no I do not have cancer and I test negative for HIV, basically this means I am immuno-compromised) CFS/ME might be another possibility but as long as many doctors believe CFS/ME is infectious al the way I am no longer looking into this diagnosis. 

 

Based on your symptoms you might want to take another route and look into systemic infections (candida primarily and other viral or bacterial infections) 

 

I have also been diagnosed with lyme disease, EBV, herpes viruses etc etc. I am completely confused and currently trying to work on my immunity and fight off candida and other viral and bacterial infections that I have been diagnosed with. Heavy metal toxicity might be another possibility based on your symptoms. I don't afford to have so many tests done unfortunately and most of the time I have to be my own doctor, pretty sad but true.