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  • Food Additive Connection?

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    Old 11-10-2014, 11:46 AM   #1
    noganilas
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    Food Additive Connection?

    This is my first post. Iím 34, female, white, donít smoke or drink. For about 17 years Iíve had a pattern of feeling healthy for a few years, then a cluster of many types of symptoms that *almost* completely disappear on their own after several months. This includes ongoing things like sensations of electric bee stings 100ís x per hour, extreme inflammation, odd sensations on my skin Ė too many to list, jerks and twitches, vision distortions Ėtoo many to list, hip and sacroiliac pain, one-sided headache, intention tremors, coordination and balance problems, outbreak of vitiligo on my face, sudden weight loss, fatigue, thyroid nodules that come and go, etc. And, over the same period, some ďmini-attacksĒ lasting a few hours or a few days, such as one blown pupil, paralyzed eyelids, full body paralysis, vertigo, extreme sensitivity to light, Raynauds-type thing on both arms up to the elbow, and so on.
    Iím very concerned because this is affecting some part of my body, all day, every day, for long periods of time. Iíve been to 9 doctors this year, waiting on more appointments. Doctors who specialize in a particular organ or system do not like to consider all the symptoms as a whole, Iím looking for one who will. Immune diseases do seem to run in my family. The doctors believe Sjogrens is likely, MS is probably ruled out, now looking to confirm or rule out if I have Sarcoidosis.
    I donít take any meds, but Iíve got the symptoms, especially the bee sting sensations and inflammation in my neck and belly, which I consider the most bothersome, pretty much under control through an elimination diet where Iíve abstained from all processed food and food additives for 6 months (not easy to do). Iím starting to systematically reintroducing foods to see what I react to. MSG, ďmodifiedĒ starches, and sodium benzoate all clearly produce a sudden spike in the number of bee stings I get per hour, lasting a few days up to a few weeks after trying a food sample. I can correlate bad flares of my symptoms in the past with periods of eating a heavily processed diet Ė university cafeteria food, kitchen renovation, for example. The connection between my symptoms and food additives is quite clear to me, but food additive intolerance has no reliable test other than trial and error, and based on my research should produce digestive-type symptoms, not neurological
    So hereís the question: Does anyone with confirmed sarcoidosis have this connection between processed food and worsening of symptoms? Are my doctors on the right track or is there something more likely that could be causing this?

     
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    Old 12-01-2014, 07:53 AM   #2
    IrishAD
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    Re: Food Additive Connection?

    Quote:
    Originally Posted by noganilas View Post
    This is my first post. Iím 34, female, white, donít smoke or drink. For about 17 years Iíve had a pattern of feeling healthy for a few years, then a cluster of many types of symptoms that *almost* completely disappear on their own after several months. This includes ongoing things like sensations of electric bee stings 100ís x per hour, extreme inflammation, odd sensations on my skin Ė too many to list, jerks and twitches, vision distortions Ėtoo many to list, hip and sacroiliac pain, one-sided headache, intention tremors, coordination and balance problems, outbreak of vitiligo on my face, sudden weight loss, fatigue, thyroid nodules that come and go, etc. And, over the same period, some ďmini-attacksĒ lasting a few hours or a few days, such as one blown pupil, paralyzed eyelids, full body paralysis, vertigo, extreme sensitivity to light, Raynauds-type thing on both arms up to the elbow, and so on.
    Iím very concerned because this is affecting some part of my body, all day, every day, for long periods of time. Iíve been to 9 doctors this year, waiting on more appointments. Doctors who specialize in a particular organ or system do not like to consider all the symptoms as a whole, Iím looking for one who will. Immune diseases do seem to run in my family. The doctors believe Sjogrens is likely, MS is probably ruled out, now looking to confirm or rule out if I have Sarcoidosis.
    I donít take any meds, but Iíve got the symptoms, especially the bee sting sensations and inflammation in my neck and belly, which I consider the most bothersome, pretty much under control through an elimination diet where Iíve abstained from all processed food and food additives for 6 months (not easy to do). Iím starting to systematically reintroducing foods to see what I react to. MSG, ďmodifiedĒ starches, and sodium benzoate all clearly produce a sudden spike in the number of bee stings I get per hour, lasting a few days up to a few weeks after trying a food sample. I can correlate bad flares of my symptoms in the past with periods of eating a heavily processed diet Ė university cafeteria food, kitchen renovation, for example. The connection between my symptoms and food additives is quite clear to me, but food additive intolerance has no reliable test other than trial and error, and based on my research should produce digestive-type symptoms, not neurological
    So hereís the question: Does anyone with confirmed sarcoidosis have this connection between processed food and worsening of symptoms? Are my doctors on the right track or is there something more likely that could be causing this?
    Hi there! I was diagnosed with Sarcoid in July of 2013. I was extremely sick, and did not have the symptoms that you have. Have you had a chest CT to look for lung abnormalities or enlarged lymphnodes? That is how I was diagnosed. Have you had your ACE checked, its not always correct, but could be an indication. Sarcoid is a diagnosis of eliminations, as there is no real way to diagnose it. I did have a lung biopsy, as that is how I got my diagnosis, along with several other tests including MRI's, spinal tap, blood work, etc. I have nuersarcoid, that is where I have the most trouble, as sarcoid can attack any organ at any time. Have you seen a rheumatologist?
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    Old 12-02-2014, 08:49 AM   #3
    noganilas
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    Re: Food Additive Connection?

    I've had a head CT, a head MRA, rheumatoid negative, have not had an ACE or spinal tap, waiting for appointments with a second neurologist to do nerve conduction study and second dermatologist to report on why I suddenly developed vitiligo. The dermatology report is required by the internist before he can proceed with ordering other tests. Sarcoidosis is the focus right now (used to be MS) but it could be several more tests before they tell me anything definite.
    I had a chest xray done several years ago as part of routine TB test for immigration. The doctor called a group of several other doctors over to look at my results. They stood around discussing ti for several minutes. they obviously saw something weird but didn't tell me what. I've had in the past a cough lasting months, but I've had no lung issues recently, so doctors have not put a priority on checking lungs right now, and are focusing on the skin changes and bothersome (but paroxysmal) neurological issues that can be controlled well through a whole food diet with absolutely no chemical additives (colour, modified ingredients, flavour enhancers etc). I've replaced these things in my diet with old-fashioned methods - freezing, drying, lacto-fermenting or pickling foods instead.

    My real question was if other people with sarcoidosis have this obvious connection between exposure to chemicals through consuming processed food and sudden aggravation of symptoms - whatever those symptoms may be.

     
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    diet, inflammation, paralysis, stinging pain, vision abnormality



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