Anyone else with a sulfite intolerance? I would love to hear from you!

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Alcie
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   Posted 2/17/2012 8:11 PM (GMT -6)   
Dear mikemac,

I don't eat organic, just minimally processed. I don't have sensitivities to fruits and vegetables, but am picky about where they are grown and wash everything. I'm OK with Activia yogurt in moderation. I can have 1 slice of some brands of pizza if I stay away from sodas and other processed foods that day.

I don't have IBS, at least never diagnosed. I get constipation from pain meds, bloating from "gassy" foods.

My reflux is only heaving since I had to have surgery on the stomach. Previously I didn't have acid because I was taking Nexium, but the stomach reacted with refluxing up its contents almost only in response to sulfited foods, proving to me at least, that reflux is not cured by antacids.

My worst problems are additives like sweeteners, colors and flavors. I do most of my own cooking, even took my own food with me when I had the stomach surgery.

You may have intolerances to things that don't affect me, or a worse sensitivity to sulfite. The latter seems to have degrees of intolerance. Mine is not nearly so bad as Rick's.

My point is don't think you have all the answers, not ever. You will continue to find new foods you don't tolerate, and may develop new sensitivities, and sensitivities can become "true" allergies. Keep a good journal so you can go back and review foods you have eaten in the past and figure out what ingredient is responsible or hopefully, you do tolerate something you suspected previously.

mikemac
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Date Joined Feb 2012
Total Posts : 23
   Posted 2/18/2012 7:19 AM (GMT -6)   
alcie conventional foods farmed with toxic chemicals just kills me, i cant process all the chemicals like miracle grows and nitrates that the food sucks up from the toxic soil,. so my processing problem wont allow for toxic chemicals which is in all conventional foods,.all conventional foods make me sick, i did the journal for 20 years ,didnt matter what i ate, if it was conventional toxic grown it made me sick. all organicf foods i can tolerate nicely with no issues at all,. also gluten is a bad bacteria. gluten is the same in all the wheat barely s and rye,. its complete cross contamination,these crops are just feet from eachother,so i dont believe there are different gluten bateria,its all the same and they share the croos contamination,lie the oats they farm along side the wheat barely and rye. its worth looking into organic foods,why ingect toxic chemicals, thats your choice. or you may want to read into chemical toxic free organic foods.. was the best tratment for people who have processing isuues,it put the least amount of tax on the body and i need all the help i can get. organics is the future ,over the next 10 years i belive everybody whos educated on it will switch over,. also the food manufacturers were already warned that if they continue to farm with the toxic chemicals that they now know can give you cancers and other severe illnesses that its no far off from what happened to the tobacco company years ago with the big lawsuit they had for poisioning people. yep these are facts im sharing not opinion. conventional means toxic,. organic means not toxic . i dont any gas with organic foods,zero . acid reflux that i had was my body secreting acids to help process the toxins,once i removed the toxins fro my diet acid reflux is completely gone. sulfite oxidase deficiency is not an allergy at all, thats laymans terms . there is an allergic reaction that secrets histamine,but not an allergy at all. the proper dr who knows about this could explain more properly,but if the drs says its an allergy i would run to a new dr because hes very wrong to say that. allergys dont kill you ,and give you great deficiencies in the body. complecated yes. let me try to say like this,. sulfite sensitivity is an accumaltive problem,you can process properly so these toxins accumalate in the organs and tissues of the body, in time the reason why sensitivty can go from problems to life threatning is becasue of the accumalation problem . as these toxic accumalte in time,there comes a point at which the body cant store any more toxins and the next toxic sulfite otr sulfur that you ingest the body cant store,it becomes saturated and as a self defense mechanism it shuts down,ex going into shock. so best not to eat conventioan toxins and accumalte these sulfites as the wreck havoc on your body and mind,. so its an accumaltive problem from the lack of processing,. no allergy out there has an accumaltive problem,that what sets my condition from a common allergy, where you were exposed to something they gave you a reaction but nothing to do with your past, sufite problems has everything to do with the past because you accumalte and the body in time gets saturated and shuts down ..

mikemac
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Date Joined Feb 2012
Total Posts : 23
   Posted 2/18/2012 7:27 AM (GMT -6)   
alcie as scary as this may sound, i cant find a dr out there that knows more then me on the subject, not even close.. i met the number dr out there who did the extensive study on this for many years,renownded for his work, and ive taught him alot,like he said i taken upon myself to read all material out there available on the subject,but as he said with envy ,that becasue i live with the conditioneveryday,with everymeal thatit makes complete sense that i would know more living and studying the condition then any dr who reads into it.. hes copied much of my work and has priased me for it. ( living with sulfite oxidase defiiency) i also have a twitter page. called living with sulfite oxidase deficiency.. i challenge any dr out there to go head to head with me on the subject of what i study everydayand live with til the day i die. anyone up for the pepsi challenge, would be entertaining.

mikemac
Regular Member


Date Joined Feb 2012
Total Posts : 23
   Posted 2/18/2012 7:34 AM (GMT -6)   
not to mention all the labratory test that i run on myself to foloow my process,most drs are not even aware of the tests that i run, and they will all tell you there is no treatment,wrong again,there is not cure at the time,but treatment is balancing out the imbalances causes my the dulfite oxidase deficiency,and it works amazingly,its night and day compared if i stop the balancing the imbalnces. but insurances wont cover for this, and if they cant charge your insurence they will say theres no treatment when im living proof of that. .my dr would confirm my amazing results. i will live much better and longer with the treatments...

mikemac
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Date Joined Feb 2012
Total Posts : 23
   Posted 2/18/2012 7:41 AM (GMT -6)   
alcie, at anypoint sulfite sensitivty can become deadly,at that point the body has become saturated. its according to your intake of sulfites,and how bad your procesing is that at what point your body is saturated that it becomes life threatening..i have found lots of ways to treat this.and the tests that i run show that there is ways to pull out the sulfite and sulfur from the tissues of your body,but you would need holistic treatment to do this,its not reconized by conventional dr who treat the side affects. something im documenting now and hope to share with others soon,but not ready to share , i want it documented so i may be credited for my extensive work and study on the subject ,.

mikemac
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Date Joined Feb 2012
Total Posts : 23
   Posted 2/18/2012 7:56 AM (GMT -6)   
alcie ,40 years of misdiagnoses by top drs who never made any sense had forced me to become my own dr. i found the problem myself few years ago, its took time for me the find the usa leading specialsit on the subject, dr rusel cancelari of southampton new york to confirm me finding with my overwhelming evident of my sulfite oxidae deficiency,. weve even gone down the roa of gene testing,which gets bit more complicated,.but it is an inherited condition, and again dr russel cancelari believes my condition is not rare at all just rare to diagnos because the dr are clueless and not taught what signs to look for, never mind what tests that should be done to piece the puzzle together..if they new what to look for they would see its not rare at all. so i am a rare lucky one to find my problem myself,thats very rae,and actually im the only one i know who identified the sulfite oxidase deficiency,.and i can surely help others which ive had, buttheres always the same problem, they run back tothere drs to discuss what theyve found and its the same drs who misdiagnosed them to begin with becasue they are clueless on the subject, not to knock the drs, but they dont teach onj the subject in medcial school in the usa,. if you want to help you will have to help yourself as i have. any drs out there who like to go head to head with me im ready for someone teach me new on the subject, but i been through this already,they learn much more from me then i can from them. ive read it all and live with it everyday..

Alcie
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Date Joined Oct 2009
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   Posted 2/18/2012 5:41 PM (GMT -6)   
There are nearly 200 gluten types. A tiny part of an article I just read gives you an idea why it's so hard to know what our problem is:

"Classification of gluten proteins. Celiac disease and gluten sensitivity patients react to the toxic peptides produced by members of the Triticeae tribe, including the grains of wheat, barley and rye. Some patients also react to the prolamins in oats.
Prolamins derive their name form their high proline and glutamine content that is resistant to proteolysis during digestion. The major prolamins in wheat are gliadins and glutenins.
Gliadins in wheat flour are further subdivided into α, β, γ and omega-gliadins (and peptides released from α-gliadins). Peptides from α-gliadin induce the greatest immune response (T-cell stimulatory response), which may lead to the development of celiac disease in genetically predisposed individuals. α-gliadin toxicity, and the resulting destructive cascade of immune reactions possibly leading to small intestinal villi damage, is largely mediated by a single glutamine in a single peptide. Colgrave et al. explain that partially hydrolyzed peptides cross the epithelium and gain access to the lamina propria by an unknown mechanism where tissue transglutaminase deaminates the glutamine amino acid that stimulates the immune response. Mutation of this glutamine to lysine, for example, abolishes the celiac toxicity of α-gliadin.
The α-gliadins are a gene family encoded by the Gli-2, Gli-A2, Gli-B2 and Gli-D2 loci located on the short arms of three homologous chromosomes (6AS, 6BS and 6DS) of hexaploid bread wheat (Triticum aestivum L.). Each of these loci may contain from 25 to 35, or even 150 α-gliadin genes per haploid genome.
Different species of wheat differ in their number of chromosomes: diploid (two sets of chromosomes, 2N), tetraploid (four sets, 4N) and hexaploid (six sets, 6N). High protein content is associated with an increased proportion of gliadins, including the α-gliadins, while strength is associated with selecting the most appropriate combinations of glutenin alleles. Higher ploidy (more chromosomes) wheats may contain more gluten proteins."

"Modified Starches The food industry also alters the chemical structure of starches to create a variety of functions in processed foods. Despite a review suggesting that modified food starches are 'safe', other researchers document a few cases (four out of 21) of increased breath hydrogen, loose stools and/or nonspecific diarrhea associated with modified food starches used in some baby foods. Do these starches cause gastrointestinal symptoms and possibly increased inflammation in a small percentage of the population? If so, their susceptible intestines are vulnerable to altered food products, and their clinicians are left wondering what is causing their symptoms."

I'm sorry the article is in a password needed site. If I find it elsewhere I'll post a link. I wanted to give you an idea how complex this subject is.

marry the night
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Date Joined Feb 2012
Total Posts : 20
   Posted 2/18/2012 6:56 PM (GMT -6)   
I know that the yolk and whites contain sulfur. Do boiled egg whites contain natural sulfites? I know that the yolk contains them in addition to sulfur, and I am pretty sure that the white does not. Undercooked egg white make me sick (histamine intolerance issue). However overcooked whites make me sick also. hydrogen sulfide maybe? I think that hydrogen sulfide increases when an egg is overcooked.

Alcie
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Date Joined Oct 2009
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   Posted 2/18/2012 7:27 PM (GMT -6)   
Welcome to the forum marry.

You might just be intolerant to proteins in eggs, but sulfites are in cooked yolks, not so much in the whites. I'd ask a really good allergist to skin test. One of the suggestions in Rick's online book (see link above) about sulfites, at one time, was eating raw (pasteurized) egg whites. I tried it, didn't notice a difference in my sulfite intolerance in a few days, didn't like raw egg whites, gave up, maybe too easily.

True histamine (IgE mediated) allergy can be dangerous to be testing without an allergist. If you have throat or heart issues I hope you will do all testing with your allergist. I've been in the ER a few times when I couldn't get my heart rate (my major symptom) under control.

marry the night
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Date Joined Feb 2012
Total Posts : 20
   Posted 2/18/2012 7:34 PM (GMT -6)   
thanks. My main protein source right now is boiled egg whites. The amines in meat I am so sensitive to. I can't eat yolks (sulfites). I am currently seeing doctors about this. I have pseudo-allergies and such. I hard boil my eggs and throw away the yolk, and probably over cooked them being paranoid of undercooked eggs (histamine intolerance). I never hear anyone complain about sulfites in egg whites. I was just checkin. thank you. I have never heard of anyone having sulfite reactions to boiled egg whites.

Post Edited (marry the night) : 2/18/2012 6:41:33 PM (GMT-7)


marry the night
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Date Joined Feb 2012
Total Posts : 20
   Posted 2/26/2012 8:55 AM (GMT -6)   
Do vegetable oils, e.g., canola and soy, contain any added or natural sulfites? I don't think that they have any natural sulfites (never heard anyone complain about it) but wanted someone else's viewpoint.

Alcie
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Date Joined Oct 2009
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   Posted 2/28/2012 7:36 AM (GMT -6)   
Hi marry.
 
I think egg whites may have a very small amount of sulfite.  Cooking is part of the problem.  It allows sulfur in the egg to be oxygenated into sulfite.  Rick's free online book is lots more informative. http://www.learningtarget.com/nosulfites/index.htm  There's a discussion of eggs in the book.
 
Oils don't seem to have sulfite, according to the tables in Rick's printed book.

Janey P
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Date Joined Mar 2012
Total Posts : 7
   Posted 3/13/2012 9:33 AM (GMT -6)   
Hi - Im so so so glad I came across this site. I live in the UK - and sulphite sensitivity/allergy is almost unheard of or unrecognized.  Im really really in the midst of a truly bad reaction.  Having figured out myself about 4 years ago that I had a sulphite sensitivity - i reacted really badly to alcohol - awful hives - all over my chest/face.  Went to my doctors - he disregarded it - in the UK we never get sent to allergists or dermatologists - and to pay privately cost an enourmous amount of money - and still we are so far behind the States when it comes to allergies.  So for four years i've been floudering around in the dark - having reactions to all sorts of things and being incredibly uneducated about ingredients/labelling etc.  My worst ever reaction is right now - hives all over my body - particularly my face and chest - I look like i've been burnt - ive been to docs - again he dismisses me from his surgery - even though my blood test showed I had high IgE levels in my blood - is this related - does it mean i have a sensitivity to sulphites or an allergy? I dont get anyof the gastro problems/breathing issues - just incredibly bad hives which start on my neck/throat and spread to my face.  Its ruining my live - until I read this thread i knew nothing.  Ive been eating all the wrong things - and even taking 5g of Biotin daily for last 6 weeks which I believe has triggered this massive reaction.  Doctor won't listne to me - im just trying to figure it out myself.  Im trying to improve my diet - BUT my biggest challenge is shampoo/washing lotions etc.  EVERY shampoo even aubrey organics is triggering a reaction - im literally on fire in the shower.  By powers of deduction i've also realised that whilst I react to anything with sulphites (shampoos have SLS dont they so this would account for that) even if i buy a SLS free shampoo - i react badly - i believe this is to the coconut derived ingredient.  Can anyone pls pls pls help - ive considered using baking powder and apple cider vinegar as an alternative - am I going to make matters worse? I literally can't function at the moment - the itch and the burn is immense - im desperate.  I've started taking b12 vitamins - have been assured they are sulphite free - but i dont want to do what I did with the biotin.  In the UK we are so many years behind all this reasearch - i havent met a single person with the same problems.its destroyed my social life and now my working life.  Any help would be so gratefully received - thank you for reading ps i happened upon rick's site - amazing info as well

Alcie
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   Posted 3/14/2012 6:03 PM (GMT -6)   
Hi Janey, so glad you found the forum. It's too bad you can't get the specialist you need. I can't imagine the doctor not at least sending you to a hematologist (oncologist here). Were not doctors, only patients, so don't take anything here for medical advice. We only know what's worked for us.

Look again at Rick's book. On the links page you can find House Mouse's link. She had a nearly lethal problem with detergents, shampoos and skin products. I have to double rinse all my laundry and only use "free and clear" detergents. I avoid fabric softeners, use only the "free and clear" ones. I use hypo-allergenic shampoo and facial soaps, usually Neutrogena brand.

Run away from apple cider vinegar! It's loaded with sulfite. Rice vinegar is OK. If you don't have a gastric reflux problem, why are you using this?

You may find your specific triggers if you keep a really good food journal. Write in it the time, everything you eat or drink, your medicines, what detergents, soaps and shampoos you use and your reactions. With hives, your reaction could be something you ate or used the day before. Migraine sufferers can have a reaction 2 days later.

You may find your problem is not sulfite at all, or you may find you have more than one trigger.

Was the "alcohol" wine or beer or in a citrus mixer? That could point to sulfite.

Janey P
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Date Joined Mar 2012
Total Posts : 7
   Posted 3/15/2012 6:47 AM (GMT -6)   
Hi Alcie - thank you so much for responding - ive read allof your threads with much interest. I appreciate your opinions. Today im in a worst state than ever - yesterday had awful headache and sickness - today im in completely covered in hives. The reason I think I may be sulphite sensitive is because mainly of the alcohol problem - the rash redness across my face and chest typically appears 24 hours after consumption of any type of alcohol - or cold beverage - so I dont drink any carbonated drinks/fruit juices etc - i even react if I drink carbonated water - eyes swell etc - but not straight away always around 24 hours later - which makes it really difficult to pinpoint the culprit. I would also react if I consumed any candy products such as Wine gums that contain sulphites - in last four years its mainly been a rash/swelling of eyelids etc - but if I look back ive suffered with terrible headaches/nausea - and a bad bout of dizziness which last on and off for 7 months - i never really kept a food diary - but have started one now. My hair is also in really bad condition and I started the biotin 6 weeks ago to help with that - i believe the biotin together with not really understanding the problem is what has caused this massive reaciton that im currently suffering with. Also i think I have a coconut sensitivity - any costmetic products at the moment flare my skin - and the one ingredient I have identified in almost all cosmetics is coconut is used in some form. I was going to try apple cider vinegar to rinse my hair instead of using traditional conditioner - so thank youfor the heads up on that. I think ive always reacted to alcohol when I was younger but the symptoms werent so severe. Im 37 now and four years ago I made the silly decision of highlighting my hair very very blonde- this conincided with all my allergies developing and over time they have got worse - do you think that overloading my hair with dye could make my sensitivity worse? Also have you heard of leaky gut and some assocations with sulphite sensitivity - ive read that some sulphite sensitive individuals might have candida or leaky gut -which can enhance their problems - or even be the cause because they aren't able to process the sulphites corrently due to leaky gut or candida? And sorry this thread is so long -but one more question if you or anyone knows - ive read that epsom baths are good for sulphite allergies - the body absorbs the epsom which aids with magnesium and helps to convert sulphites - has anyone else read this - for reference google Margaret Moss - UK Allergy clinic dietician - thanks so much for replying - it has really lifted my spirits

Janey P
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Date Joined Mar 2012
Total Posts : 7
   Posted 3/15/2012 6:55 AM (GMT -6)   
Just wanted to send this link - Margaret Moss Uk dietician and some of her theories about sulphite sensitivity

http://www.foodsmatter.com/allergy_intolerance/sulphites/articles/sulphates_sulphites.html

Alcie
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   Posted 3/15/2012 7:50 AM (GMT -6)   
If you hit the box that says post reply instead of  the quick reply box, the links become clickable and you can change fonts, colors, etc.
 
I found the website interesting, but I didn't find any credentials other than dietitian.  And her recipes saying add onlin, garlic, leeks is just wrong!  Those veggies contain lots of sulfite!  I love them, but they make me sick.  See provenance in Rick's book.  He researches, measures and calculates this stuff.  Nevertheless, I will read more of the website because it's got good points too.  I always want verification before I swallow anyones theories.
 
Again, there is no sulfite in pure alcohol, so were you drinking wine or beer, or was there a citrus mixer involved in your reaction?  Those drinks would have sulfite, and you could calculate from the amount you drank what your level of reactivity is.  Of course you would have to add in any sulfite from food you ate, and your allergy could still be caused by something different.  I get hives from the antibiotic Avelox, and get allergy symptoms from sunflower seeds.

Janey P
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Date Joined Mar 2012
Total Posts : 7
   Posted 3/15/2012 8:55 AM (GMT -6)   

Thanks for the tips alcie - really appreciate your lead on these things - im very new to forums - so any help is appreciated!

Yes - I also thought some of what Margaret said conflicted with other things I had read.  I have just actually spoken to her on the phone - and im only halved convinced I should make an appt withher -I dont want to make anything worse or pay for advice that I could basically find out for myself.  Because im not getting anywhere with my doctor im just so desperate for help or advice.  My experience with alcohol - Wine - always have a reaction 24 hours after consumption - eyes swell/neck/face hives, the same with beer.  I dont tend to drink vodka/gin etc - but if i do have a night out and just drink fruit juice on its own - an orange j20 - next day ihave the same reaction.  When  I completely cut out alcohol my symptoms got so much better - but this is the strange thing - my skin is worst now than it has ever been. And last year I did have wine/beer on a few occasions and didnt react.  In my mind I thought because id detoxed from alcohol this is why i wasnt reacting.  I had 2 glasses of beer on New Years Eve - and 24 hours later had a reaction - but the reaction hasn't disappeard since then - only gotten worse.  Maybe my connection with alcohol  has been a red herring.  It was only through this connection that led me to believe the only thing i could be sensitive to in alcohol is sulphite.  In the UK nearly all wine carries a sulphite warning.  My diet at the moment is very very limited - have cut out sugar, cut down on wheat & dairy but havent completely eliminated.  I've been eating crackers/celery/apples/chicken/banann's/few eggs/some bread/decaffinated coffee and when im really strugglign with my sugar i do have some chocolate - i know this a no go for sulphite sensitive people.   Do you think its possible that people with a very mild sensitivity can consume some sulphite foods regularly but eventually levels build in their system and then they have a reaction? Do you know of anything else in alcohol that can cause a reaction other than sulphites?  Do you buy into the Epsom salt theory or have you heard about this before?  apologies for rambling on and asking so many questions, and thanks again for your responses

 


Janey P
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Date Joined Mar 2012
Total Posts : 7
   Posted 3/15/2012 8:56 AM (GMT -6)   

Alcie - hope i get this right this time :-) - here is something else i've been reading -

http://health-report.co.uk/allergies.html

 

 


Alcie
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   Posted 3/15/2012 12:47 PM (GMT -6)   
Janey, if you make your bread yourself it should be safe, but I react to all store bread unless it's labeled "preservative free." Plain crackers - look at the labels and avoid those with lots of additives. Cutting out bread works well for losing weight, if you happen to need that. Cane sugar is fairly safe, but beet sugar, which is cheaper, has sulfite from bleaching the sugar beets. I don't know what's in an orange j20. Lemon and lime juices are highly sulfited, over 100 ppm. Eggs have natural sulfur. Eat them in moderation, and note reactions!

I've read that lamb and rice are the least likely to be allergenic, and an elimination diet starting with only these was recommended to me by my allergist. (Start with these for 2 weeks, then add one food every few days, depending on how long it takes to start the reaction. My reaction is usually within minutes to a couple hours.)

Since you seem to have a "true allergy" which is severe, be careful if you get to challenge testing. I wish you had a doctor, preferably an allergist, to help you.

It's possible, even likely to have an allergy or sensitivity to wheat. New allergies can start at any time. Celiac disease, where the patient doesn't tolerate any gluten can crop up any time too. I don't have a true allergy to wheat but I've gotten somewhat sensitive to it. Getting the preservative-free bread and repackaging it into 4-slice packets and freezing it helps me not eat so much, but it's available for my husband to make toast or a sandwich for himself.

Thanks for the link. It's interesting, but I wouldn't spend money with any of these people until you've read a lot more and done a lot of journaling to make sure of your sensitivities. I'm leery of "leaky gut." I have only heard of it from alternative medical providers. I worry it may be just the fad du jour, until I see an actual study done by qualified researchers. The same goes for yeast/candida. While you could have a problem with yeast if you take a lot of antibiotics, I don't see any reproducible research confirming it has such widespread pathogenesis as some claim. But then I don't follow much in the way of herbal medicine either.

Eweieie
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Date Joined Mar 2012
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   Posted 3/15/2012 1:24 PM (GMT -6)   
Hello, I have just found this site and am encouraged and hope I can help others. I have a life-threatening intolerance to all sulfites and can identify with your challenges. I was incorrectly given Thyroid meds many years ago which did not correct the problem. To keep my first reply short I also have hard swelling on any part of my body. I could go up 5 dresses sizes at a meal, finding it hard to walk etc. The pain in my chest and back was frightening. What was happening was that the soft tissue and muscles were being stretched to their max. My face was distorted with my lips swollen to my nose and my tongue hanging outside my mouth and my gums extended with my neck completely filled in from chin to base.
Painful. All my present Dr. could say was, "Youv'e been swelling up since I've known you." I have come to know a lot of info through intense study,and my Dr. has now depended on my research to offer help. Thyroid Med - put together with sulfites, all shelf meds contain sulfites, thank goodness I don"t require any. Yes, shampoos, toothpaste, most bottled water, soaps, creams, Epinephrine - sulfites, it's scary when you have to plead with hospitals, finally receiving an apology. No antihystamines, benydryl, etc. all put together with sulfites. I now take pure thyroid in capsule form, take it apart and put contents in whole milk (no sulfites in whole milk, only, so far.) This Sulfite Allergy is far more prevelent in new borns to elderly than the FDA and Pharmecutical would like us to know. IT IS A DEADLY PRESERVATIVE TO GIVE PRODUCTS A LONGER SHELF LIFE. Every person has a type of reaction from mild to wild. IT IS A MONEY MAKER, by their own admission. THERE IS NO ANTIDOTE, WORLDWIDE. Are we willing to take a stand against this? My heart goes out to you all.

Alcie
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   Posted 3/15/2012 1:56 PM (GMT -6)   
Eweieie, welcome to the forum.

I feel sorry for you having such an extreme reaction. I can't imagine what that feels like. I am lucky to only have the sensitivity, although I get tachycardia and have had to have chemical cardioversion for it. (stops the heart for a few seconds, hopefully heart resets itself)

Thanks for the note on thyroid meds. I was put on a couple of different types in the past and didn't tolerate them, thought it was the thyroid med. That was before I found out my sulfite intolerance. Since I don't need it now, I haven't thought back to that intolerance.

Some other people who get the "true allergic reaction cet relief with antihistamine tablets, not liquids or liquigels. At least these don't have an apprecible amount of sulfite. I use tablet Benadryl and Alavert with no problems.

I hope you have found Ricks No Sulfites website (link is a few posts up) with the book explaining how these chemicals got into our foods, what names they hide under.

Janey P
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Date Joined Mar 2012
Total Posts : 7
   Posted 3/16/2012 9:26 AM (GMT -6)   
Hi Alcie - again thank you for your advice. Im off work today - had really bad night my skin is beyond its worst - no other symptoms just hives from head down. Been to my doctor again this morning -she understands nothing off my concerns about food sensitivities - said it was unlikely because I dont have immediate reactions. She gave me more steroid creams and diazapam! i dont need tranquilisers I need medical assistance! Im waiting to see a dermatologist and have been told I should hear by May - but they wont do any food sensitivity testing. You get very bland medical assistance in the UK. I really am beating my head against a brick wall. She acknowledged I appeared to be having an allergic reaction 'to something' - im at a complete loss. Im going to start a proper elimination diet today - going to try lamb and rice - do you know of any 'safe' vegetables - or are all ok? I dont need to lose weight - im if anything very underweight - have lost 7lbs in last 2 weeks - im just under 51kg (8 stone) and food is becoming the enemy. I've stopped my b12 supplements (cant trust what is in them) along with my antihistamine - was taking fexofenodine telfast 180mg - but everything is making it worse! I appreciate your views on the links I posted - you make a lot of sense and are clearly very well educated about your sensitivities. I think I have alot more reading to do! Thank you again for your feedback.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5004
   Posted 3/16/2012 10:15 AM (GMT -6)   
Janey,
Diazepam is a tranquilizer only in higher doses. At 1 or 2 mg it is a terrific muscle relaxant. So sorry your primary? doc doesn't know about food sensitivities. You are right; they can cause late reactions. Skin reactions take a while to pop out. Rick points out that migraines can occur 2 days later. I had a serious reaction to albuterol 6-8 hours after inhaler use.

I think you are right in trying to solve the problem yourself. I had to. My allergist helped me with the idea of the food journal and directions for doing a food challenge, but I went in with a suspicion of sulfite. I had made wine in the past, had drunk it with no reaction, then sulfited a batch and reacted strongly. That was a pretty big clue, and my allergist agreed.

Safe vegetables, hmmm. It's going to be pretty boring eating, but it's worth it to get rid of the rashes. Rice is supposed to be safe unless you are asian and have eaten it a lot. Allergy to rice is known in Asia. Pears are supposed to be safe. I think you might be OK with a week on those three, then add one vegetable every 3 days or more. Longer time is better for you with the delayed reaction. You might try potato, but fresh baked only. Then maybe green beans or peas, sweet potato - choose all foods that are listed as low in sulfite to start - avoid onion family. No seasonings except salt. Pepper is sulfited in the roasting of the peppercorns.

I did a brief internet search for allergy-free foods, but mostly came up with ads for selling you foods - all of which would have sulfites. Maybe you can search for some good sites and post ones that aren't selling stuff.

Also try to find some safe skin products, avoiding as much as you can and rinse, rinse, rinse your skin, hair and laundry. You don't have well water with iron, do you? There is often sulfur in coal beds. This is going to be important since you have a skin reaction.

I worked as an ICU technician, but that was way back before kids - 40 years ago. I worked as a pharmacutical company technician before that. At least I have a science education so I can read the easy stuff.

I have no experience with actually doing an elimination diet, just making guesses. I had a clue because of my immediate reaction, so I just kept a journal and avoided high sulfite foods.

My allergist has me trying tobuild up tolerance to cashews and sunflower seeds. I eat 1/2 cashew and a nibble of a sunflower seed daily. In a couple of weeks I will start raising the dose until I get to a tolerance (hopefully) for a moderate serving.

Definitely keep us informed as to your progress! Your results will help others.

Janey P
New Member


Date Joined Mar 2012
Total Posts : 7
   Posted 3/16/2012 11:58 AM (GMT -6)   
Alcie, again thank you for your guidance. I've just been to the supermarket - dinner is lamb& rice with a pear to follow! I really do appreciate the time you have taken in your considered responses. On this avoidance diet do I keep to these 3 things for all meals? I read on Rick's site that some oatmeal is ok for breakfast, shredded wheat and all bran - but for the purpose of the diet do I need to just eat the 3 foods mentioned lamb/rice/pears? I am really going to struggle i think - but it will be worth it get some relief. I did read some of Rick's online book - but being a complete novice some of the techi stuff went over my head a little. I see you have a better understanding with your employment history and training. And you have clearly learned a lot along the way. Out of interest are you able to drink your own homemade wine now - or would you still react? I know grapes have high sulphite content. And over the years has your sensitivity become worse - or do you think you get to a point when you 'plateau' and it stays stable? Literally 3 months ago I was able to eat a much more varied diet with no reaction - apart from the fruit juices/alcohol etc - I just dont understand what has changed so much in 3 months. I'll keep you updated with the diet. I also read housemouses' site - and a lot of what she said made sense as well - I see she has had some very encouraging results with B complex supplements and organic carrot juice. I am already using the Aubrey Organics hair care range - but still reacting to the shampoo - I take a small sample of shampoo but it in a cup and water it down - I have less of a reaction doing it that way. For people who are reacting to shampoo - don't just consider the SLS's - the coconut derived ingredients in ALMOST ALL soaps/shampoos can be another problem - they take out the SLS's but replace with cocamidopropyl betaine - another nasty.

Did you have any thoughts at all on the Epsom salt baths? Thanks again for you advice
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