Thank you so much for replying.
Sorry to take up your time but could you please answer a few questions.... don't worry if you don't know the answers.
a) Do you find oral medicines with sulfates ok? I understand from research that sulfite oxidase changes the sulfite into sulfate... so if it is already sulfate is it ok? I ask as I used to take glucosamine sulphate (with potassium sulfate)..I was reacting so much to lots of foods so I never worked out if this was one of the problems and it all but cured my embryonic arthritis problem... I am ok at the moment but I may need to take something in the future and I found the sulfate helped more than the hydrochloride.
b) If my body isn't converting the sulfite into sulfates is this not likely to cause a sulfur deficiency? The articles I have read about sulfur deficiency sound awful!
c) I have already purchased some sublingual B vits including B12 but not taken them yet.... the B12 is cyanocobalamine.... is the toxicity likely to be a problem if I take it in the short term until I find the methylcobolamine?
d) I have also read that biotin in vit tablets has high sulfite... this seems to be in most of the multi vits I have looked at... I have stopped taking my usual brand due to this. do you find this a problem?
e) What dose of molybdenum do you take? I have read about this causing a copper deficiency.... (I read far too much)....
f) do you have problems with tea in tea bags and cheese... I have cut them out temporarily as tea is fermented and cheese is preserved (you can tell I am really not sure that I am doing at the moment)
Unfortunately as I live in England there doesn't seem to be the same rules here about labelling sulfites.... and no-one else seems to have any idea what I am talking about....I had my Eureka moment when I had a really bad reaction to a packet of gummy bears (gelatine!) ...i ate the whole pack!!! which were made in Australia and were labelled. I googled it and the jigsaw fitted together... I had already isolated onions, grapes, I have always hated any vinegar products so was already on the way. I feel so much better now that I have cut out anything obviously sulfited... I am actually awake and alert and can even walk up and down the stairs better, I don't feel such an old lady any more....my itching has almost gone (still get a few bouts but have found you can't avoid all sulfites), and my bad indigestion /wind has gone.
I am on a self imposed elimination diet at the moment but feel so much better I really am reluctant to try out other foods and make myself feel temporarily ill. But I know I have to do this to find out what I can eat as my diet is so restricted at the moment.
I have had dental surgery about 3 months ago with lots of injections... so seem to be ok with my dentists brand of anaesthetic... but will ask her to let me know if she changes it!
I am so sorry to bombard you with questions... I am sure you have much better things to do!Thanks so much for your time.... you are the first actual person (rather than looking at websites) I have communicated with about this.
My initial symptoms (symptoms vary from person to person):
When I started my elimination diet I already suspected gluten was the culprit. But was also suspicous of dairy. After many weeks of testing I confirmed gluten and dairy was the problem food. However, later I learned that once I was gluten free I could then tolerate dairy. (halajujah!)
I was relieved to be finally doing something about my situation as I was tired of being sick and tired. But I must add that there is a gluten mourning period that I went through. But after a couple of episodes of denial and feeling sorry for myself, meaning I actually thought I could eat a little gluten, I decided no amounts of gluten was worth the misery. I have been gluten free for 10 years. I was substituting using corn, tapioca bread, rice, etc. But as luck would have it a year or so ago I started feeling the same/similiar symptoms. I then discovered I could no longer eat corn. What the **** is going on! And last thursday I ate some soup my daughter fixed and it has been down hill ever since. My daughter, 23 years old and just graduated with a BS in food sciences and dietetics. She is well aware of what foods I can't have and is great about reading labels. She is very careful and I trust her cooking. The soup was a coconut milk/curry soup with prawns and different veggies and cool asian mushrooms (don't remember the spcies name). I packed the soup in my lunch bag to eat at work and it was amazing. However, soon after consuming it (Thursday afternoon) I started feeling that lethargic/sleepy feeling I used to get when eating gluten. I was tired all night and had a slight headache. (I should mention that I had approx. 6 oz. of red wine when cooking dinner that night. I know some of you food allergy/intolerance experts know where this is leading.......) I woke up with a slight headache and slightly swollen eye the next morning. I haven't been in denial about food for many years but I was in denial and decided that I could have this amazing soup again the next day (Friday afternoon) for lunch; so I did. My thinking was clearly very fuzzy on Friday afternoon making it quite difficult to be efficient at my job; building technology specialist. (That eveing I had another small glass of wine that evening....maybe 4 oz.) I told my signigicant other that evening that I was so tired I felt like I had weights on my legs. I went to bed early. Amazingly enough I woke up feeling pretty good. However my eye was still slightly swollen. I was planning on taking the dog for a walk and decided to take the dog to the porch and brush him first. After brushing him I stood up and almost passed out. It was all I could do to catch myself from hitting the ground and barely caught myself soon enough to plop down on the porch step. I wrote it off as' I simply got up too quickly.' However, the dizziness has not gone away for 3 days.....it subsides only to return. At night when I turn over the room is spinning. This is a new symptom for me. Although some dizziness would accompany food intake episodes in the past it never has come on so suddenly. I'm still in self-diagnosis stages of this situation and have also scheduled 2 doc appt. My self diagnosis is toying with the idea that I had a reaction to the sulfites. The coconut milk listed sulfites which means there is at least 10 parts per million. (The new labeling regulation--which goes went into effect Jan. 9, 1987--further defines when the presence of sulfites must be declared in a finished food. Any food that contains at least 10 parts per million of sulfites must identify the sulfite in the ingredient list on the label. ) My 1st appt. is today with a general pract.; just to make sure nothing life-threatening is occurring. My family has a history of diabetes and I want to have this checked. My next appt. is Wednesday with a Naturpathic - ND. The ND was the person who originally diagnosed my issues.
Note: In addition to the symptoms I listed as experiencing in the last few days I've also have experienced a tight chest. This is usually a symptom that accompanies my asthma (only slight case) and surfaces during stress, ingestion of foods I can't tolerate, exposure to fumes (stains, urethanes) and dust. (I should mention that our house in under construction and I am frequently exposed to these things.
Having said all that I want to make a few things very clear to those of you that have or or suspects food allergies/intolerances:
Last year I went to Virginia Mason to see one of the 10 top allergists in Seattle and was reviewing my scratch test allergen results. (Only showed hazelnuts<results =slight allergy reaction> and tree pollens <higher reaction> as items I was allergic to.) I couldn't believe that wheat, corn, barley, etc. etc. did not show results. I asked the doctor (remember....a top 10 allergist in Seattle) "How can I have such severe reactions to a food yet not show any allergy results to them." After some pressuring her reply was, "we are just not there yet." I left feeling quite defeated.........this truly is a journey I need to take by myself. Sure your family and friends can support you.....but in the end it is up to you.
A couple of quick thoughts that may help you in other areas:
I have had a horrible reaction to chephalexin (antibiotic) and was the only person leaving after a colonoscopy with a puke bucket. (I still need to investigate what was given to me then.) I also identified that there is an anesthetic that I cannot tolerate (nausea) that the dentist commonly uses. The dentist tried something different at the next visit which agreed with me and killed the pain.
I could go on and on as there are many things I have not covered. For instance, my recently acquired corn intolerance....symptoms are different that the gluten intolerances. Feel free to ask me questions if you have any. I find these type of sights to be a great way to find out info about intolerances and allergies. I find more info here than most docs have to offer.
Bottom line for me.....pure and natural foods. I need to quit hoping and experimenting.....it is never worth it.
Take care of yourselves. Life is not a dress rehearsal. DF (PS - I'm not editing....takes too long. I'm sure you don't mind if there are a few typos.)
Post Edited By Moderator (Red_34) : 12/17/2010 4:25:58 AM (GMT-7)
I cannot eat any processed or take out food or food in a restaurant. I was sitting with my sister and nephew two years ago at Christmas time at Swiss Chalet and having chicken breast, fries and gravy with a salad and my face was flushed and swollen, the throat constricting and did not feel myself at all. That weird feeling of distress and doom and gastro going on and since then I seriously started to go to the doctor and allergist. I stopped eating out, period.
It came to a point where I thought I was 'allergic' to all food because whatever I ate, I would get the symptoms of sulfite. I actually self analyzed myself and the allergist here in Canada, although there is no test for sulfites confirmed it after hearing all my symptoms. She was quite helpful and told me to try to get fresh veggies from the market etc but in Canada, the organics are gone in fall and winter and its very hard for me right now.
I don't know how to live with this allergy, it is unlike other allergies. In USA, there is no sulfites in fruit, but when that same fruit is sent by truck to Canada from USA or other countries, they are sulfited or sit in a sulfite bath and then put in a refrigerated truck to head for Canada. EVEN ORGANIC FRUITS AND VEGGIES. Organic is pesticide free but not necessarily sulfite free thats what I have learnt.
Organic produce from Canada in summertime is okay for me but I still cannot have Swiss Chard and I found out it is loaded with natural sulfites, ofcourse, its full of iron, FeS04. But so is spinach but I was okay eating the local organic spinach and eggplant, zuccini and cucumbers, sweet peppers and turnips and sweet potato, oh dear, I miss those so much! In winter here, day to day is hard for me to repeat the same food, and to be honest I am really scared to trying to eat anything else until I have answers.
This forum is the greatest, I learnt so much and you are wonderful and have so much knowledge, I know with friends like you, I will be okay and I want to thank you for that.
My allergist suggested I go to Cleveland hospital either in Ohio or Florida where they have a special clinic for Sulfites and I can get help from there.
I have spoken to my boss on 16th dec to ask him for a medical leave for about a month so that I can fly down to the clinic and get some answers and maybe some education on this as none of the doctors here in Canada including the hospital emergency doctors know anything about sulfite allergy and that it is also in epipens.
I also get chest pains and whenever ended up at the hosp. they did all the heart tests with always the same results, nothing wrong with the heart!! Then how is it it feels like I am going to die.
I was reading that tachycardia is also due to the sulfite reaction, I am thinking it may be that and not anything to do with heart attack or so.
Sometimes when I am driving home in the bumper to bumper cars where I am stuck for a long time till I reach home, the exhaust fumes from the car ahead of me (sulfur dioxide fumes) affect me and my left arm will go heavy and numb and I feel like I am going to pass out and the feeling of doom and anxiety and then chills around my chest sometimes. I am scared to take benadryl in case it is my heart and not a reaction but it has happened to me three times now over the 5 months and I am putting all this together to be sulfite allergy. This also happens at gas stations if I spend too much time waiting to fill gas.
When I have this reaction, I will be just sitting in one place and not wanting to move, its like I am in a trance and the different reactions take place.
There is so much more, my life is upside down as I work 8 and a half hours but wake up at 6am and come home at 6pm thats 12 hours and after that have to cook my food and attend to my yorkie and take her for walks on nice days. I am exhausted and if I get a reaction from something that did not agree with me, I still have to go to work the next day, regardless.
I also have a rotator cuff injury from my work some years ago and am dealing with a bad right shoulder (partially disabled) so things are hard enough for me to do so much work at work and then come home and do more work and then do all the cleaning of the mess.
sorry, I am just venting here, but this all adds up and I am just wanting some answers and solutions so that I can have a healthy life like everyone else.
thanks for listening to me and trying to help me. Do you think that if I call the Cleveland clinic and speak to a specialist to see if they can help me and take it from there or should I just pursue with endless tests which they are doing here but always same answer, 'nothing' is found and they don't know.
Alison never answered and I never got to know what other foods I can safely eat.