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

Hi Alcie:   Tachycardia.  Ab.Fib.  !!!I have heard it called so many names, I really don't know what it is.  All I know is that my heart rate goes up to 120 p.m.  at a steady rythm as far as I know. But you feel you are going to die.  Can't even speak or move. Just lie flat.

Takes ages for it to go back into normal rythm. I am usually in hospital then.

P.S.  Just want to ask you where a New post that it put up with this emoticons can be found.  I find it very difficult to locate things on this site, as I can't find a page that is just "subject" listed.  As on Sulphite Sensitivity site has.  

pps.  Do you re-act to printing ink,  i.e. as in photo copies from printers....  Bye.

does dutch processed cocoa contain sulfites?

My mom has a sulfite allergy, and today while I was looking at Panera's menu to see if there was anything she could eat, I noticed they had this warning posted:
Canada notice: Many of our products also contain or may come into contact with common allergens, including sulfites and sesame.

That made me wonder, like Stella5, whether anybody here eats out any more. Are there specific things at particular restaurants you guys know are safe because they're well within your tolerance levels?

Surprisingly, it looks like Subway's Italian bread, at least, doesn't have sulfites in it:
www.subway.com/nutrition/Files/AllergenChart.pdf

Red, Hot, and Blue (barbecue) has a similar chart:
www.redhotandblue.com/nutritional/allergens.htm

Quizno's:
www.quiznos.com/subsandwiches/Menu/PDFs/allergen_table.pdf

Denny's:
www.dennys.com/files/allergen_sulfites_2012.pdf

Pei Wei (which implies that PF Chang's should have one, too, but I don't see it):
www.peiwei.com/downloads/PeiWei_Nutritional_Allergy_Menu_Guide.pdf

These aren't local to us, but for anyone for whom they are:
www.buona.com/download/restaurant-allergen-info.pdf
www.fatz.com/media/15163/fatz-allergen-information.pdf
www.panago.com/pdf/nutritional_info.pdf (ingredient-based)
www.roundtablepizza.com/rtp/PDF/RTP_Allergen_Chart.pdf
www.eastsidemarios.com/pdfs/original/EastSideMariosAllergendata.pdf
damons.com/interactivemenu.cfm (you gotta select what you want to eat first...)
www.jerseymikes.com/menu/food-allergy.php

Of course, I imagine there's a possibility of cross-contamination eating at any of these places, but I'd think that the possibility of a reaction would be much lower. Anybody else have one to add?

I have a sulfite sensitivity. Guess you call it an allergy. I go anaphalactic when I get ahold of sulfites in medication, like the full swollen face, neck, extremities, can't breathe, grab your epi/pen kind of reaction. Absolutely crazy. Oh and I can't drink or eat anything with wine because of sulfites. If I drink it (just two or three sips) it's coming right back up. If it's in food, my gastronomic system is screwed for days and I feel achy like the flu.

My six year old daughter has struggled with severe bloating and flatulence for the past few years. We had suspected a lactose intolerance and eliminated it but it improved only marginally. Today was particularly bad and I had an A-HA moment when I remembered that she had had dried mango today and the last time it was this bad she had also had a snack of dried fruit. That lead me to googling sulphite sensitivity and this group. Most published symptoms seem to talk more of headaches and breathing issues and rashes (she does have eczema) but I wonder if her gastro-intestinal issues could be related to sulphites. Are these known symptoms?

The more I read, I actually wonder if I too have a sensitivity. I get frequent headaches (especially if I drink wine) and do have an allergic reaction to sulpha drugs. Are they related? And if I do, could it be hereditary and I've passed in down to my daughter? Any information you could pass on would be appreciated.

MadgeW,
I empathize with your frustrations. I think the advice is conflicting b/c everybody's body is so different even if we all have sulfite trouble.

I don't have any clear answers for you besides that paprika usually always has sulphur dioxide with it unless it's organic. HOWEVER, DON'T GIVE UP! I'm grateful on your behalf that you have discovered what might be causing you trouble...you might not get your body and how it responds figured out today or tomorrow, but it's totally worth taking it one step at a time.

I was depressed and overweight as a kid and in college got terrible chest pressure and had my first major scary reaction at 21 when I had red wine and cheese together for the first time in my life. Benedryl helped. My doctor put me on meds, but I was sure it was food related. So I saw a nutritionist/holistic health practioner and she had Dr. Amy Yasko's Nutrigenomic Methylation cycles blood test done were I learned that my SUOX gene is varied along with some of my neurotransmitters. That basis has helped, but the reality is that it's just a day to day, listening to my body. I tested my urine sulfite levels through my health practioner for a time to know what it feels like to be high in sulfites. Now I know that if I feel heavy and achy and cry (when I'm not PMSing), my sulfites are high and I need to back off on some foods.

I was so sick for awhile I couldn't work, but now I found the joy of my life working with the elderly and I hold down a full time job with benefits-----a true miracle!

I've been on the "I'm aware of my sulfite issue" journey for some 10 years now and it's HARD, but as I keep accepting it and doing my best with what I eat with knowledge that is experiential mostly and also from the recommended sites.

I find that for me it's a balance, where I'm never quite sure where my tolerance levels are at regarding naturally high sulfur and sulfite foods. I completely cleaned my system out over a span of 3-5 years and am slowly trying to add foods back in to see how I react and sometimes I crave the foods I react to and then have to readjust. I've cut out the obvious things that clearly say sulphur dioxide on the labels. And from there, it's been by elimination diet and listening to my own body. I do a lot of bodywork, too: acupuncture, spinal network, chiropractic, sauna, cranio sacral massage and meditation and prayer counseling.

I instantly react to wine (even some no detectable sulfites organic ones) with flushing and tingling in my face and sulfited shrimp effects my face and neck with tingling and pressure. Benedryl always stops it but I also have an epi pen just in case. I also don't eat wheat or fermented foods.

Hang in there. The journey is worth it!!!!!!!!

Post Edited (fullcontactcook) : 6/27/2012 4:13:06 PM (GMT-6)

Hi, everybody.

I'm somewhat new to the whole sulfite allergy thing - five months now. It's been the most recent discovery in a series of 'what's wrong with me now' revelations, but I'm crossing my fingers that it will be the last of them. I look forward to learning from everybody here! I'm sure I already have from some of you. I've been haunting every sulfite- free place I can find, at this point, to try and get a handle on this!

My initial reactions involve vertigo, cognitive impairment, nausea, and so on. Onset is less than 20 minutes after ingestion or inhalation. I only seem to get hives when I've been getting a higher sulfite load for a few days in a row, and then it will get worse and worse until the smallest amount can set off hives. I have no idea if that means this is a sensitivity or an allergy, at this point.

I also have Celiac Disease and if I get gluten contamination, my sulfite tolerance drops like a stone. I had my molybdenum levels tested once (not the greatest test, admittedly), and I had undetectable levels after getting gluten cc. So I assume that my absorption is affected and therefore my sulfite oxidase levels. In this case, it only seems to affect the initial symptoms of vertigo and such, not the hives.

I'm looking back and seeing a lot of sulfite signs I wish I could have known about when I was younger. I imagine a lot of people here have that. This can't be an easy allergy to figure out unless one reacts to a really obvious sulfite source right away, yeah?

I've hated high sulfite foods my entire life - dried fruit, wine, etc... The one time I actually had a few glasses of wine, years ago, I was sick for well over a week. It's something that makes me realize how lucky I've been when I really think about it. At the time, everyone assumed I just got really drunk, really fast, because my initial reactions mimic intoxication so much. So I was tucked away in a bed and left alone the rest of the night.

Thank god I don't have hives and breathing issues, or I don't think I would have been there when they came to check on me the next morning.

There's lots of other things to look back on and wonder about. No idea how to deal with them now, though. I always seemed to have side affects to any medication I took and tried to avoid meds as much as possible. I have a dozen allergies to medicine listed, but after examining that recently, I realized that all of these medications ALSO have sulfites in them, so I have no idea now if it was sulfites or the medication that I reacted to originally. No real desire to test it out, but at the same time, it would still be nice to know.

Currently, I react to sulfa drugs, to sulfites, and to foods naturally higher in sulfites or sulfur oxides (I think that's the right term? Unsure). I'm also get neurological damage after ingesting even a tiny bit of gluten contamination and I have a few other allergies as well that I have to avoid (dairy, eggs, soy, coffee, and sugarcane, mostly).

So as you can imagine, I don't eat out and I cook everything from scratch now. And I'm not that great a cook, so my tongue and stomach complain a lot, LOL. I am hoping to find some people who have some utterly amazing recipes for sulfite free stuff...that is such a simple recipe, a monkey could do it. ;-)

Again, looking forward to getting you know you all.

Shauna

I am gluten intolerant and anemic. I am juice fasting with beets carrots kale. I am taking an iron/folic acid/b12 pill for the iron deficiency and I have been feeling ok. Last night I ate a salad with kale cucumber red onion red pepper and red wine vinegar. Then some dark chocolate. Ouch! Looks like I overdosed on sulfites! I am posting for people who have symptoms like mine, as they are not yet mentioned on this forum. Shortness of breath, brain fog, fatigue, fascia pain. I hurt all over, especially the back of my neck and my back. Severe back pain. I sometimes get chest pains, which is just the fascia locking up in my chest. Feels scary but it's not heart. So fascia cramps up and I can hardly move. Google fascia if have this symptom. They would probably diagnose me with chronic fatigue syndrome or lupus or fibromyalgia. But it turns out I have food intolerences to gluten and sulfites, and iron and b12 deficiency and my fascia is reacting severely. So take iron, b12, folic acid, avoid gluten and sulfites, and when I accidentally ingest either gluten or sulfites, take benadryl and lots of b12 and wait it out. For me it takes 3 days for my system to flush it out. Problem has been that it was constant because I didnt know about sulfites till last night. Thank you God for leading me to this website. And thank you everyone here.

Hello, I am new to the forum. Quick question for someone, please. What Chapstick do you use with a sulfite allergy. I am to scared to experiment. I have only been having reactions for the last 17 days. I have lost 10 pounds and slowly reintroducing foods. My lips are so dry. Thank you.

-Kary

Hi,
I have just been diagnosed by a doctor -allergist in Canada -with a possible sulfite allergy in foods-started to get rash on head and eyelids and bloating -not as bad as some but discomfort etc plus eyelids look horrible! Anyway I wanted to tell the lady with the intense burning from the shampoo that I started to use bicarbonate of soda couple of tablespoons mixed with warm water then two rinses of castille soap -if you can tolerate it-anyway for the first three weeks my hair was hideous really greasy after only a few hours as you would expect but due to continued scalp and eylid rashes persisted with this approach -after three to four weeks my head and hair has rebalanced itself to accept this new "shampoo" and believe it or not its less greasy than it used to be with the sulfite shampoo-my relatives think this sulfite "diagnosis" is rubbish as I am usually healthy but my husband whom I have been married to for 19 years -thinks it all makes total sense-feel poisoned after airport and Asian food etc etc

 I was diagnosed with sulfite allergy 4 years ago. but after i left out sulfites from my diet,i did much better but there were many fruits and vegetabls and pure foods that were still making me ill. 3 months ago i nailed it! And anybody else with sulfite intlerances or true sulfite alleregy may want to read about pst deficiency. Dr rosemary waring has a whole sight for anyone to read. Its been a big life change for me.. turns out my body wasnt producing or reataining sulfates in my liver..i been supplemeting with epsom salts baths and 6 weeks later i can eat just about anything and not get any ill effects.. keep in my i went to the emergency room 8 times in the last 2 years with anaphylactic shocks !Very serious and life threatneing . I went back to my allegy dr who diagnosed me with the true sulfite allergy and he never even heard of the PST deficiency,and he was very wrong with his poor partial diagnoses.  he never even heard of amines! and barley new about salycalates . if you use the epsom salts it must be done very slowly. 2 tablespoons for a 20 miute soak, and increase a tablespoon or 2 each time and keep increasing with each bath as long as theres no reactions. Read dr rosemary waring. she is the dr who identified the pst deficieny.SHes the best on the subject! she work s in the uk.but her sight has it all.. turns out a few people i new who also had been diagnosed with sulfite allergy from this dr ,all had the pst deficency,and thanks to me and dr rosemary waring these people are getting the help they need and are able to make full sense of all the madness..

 

Hi all,

I too have a sulphite allergy and in the UK little is known about it. Over the years my tolerance level has reduced and I am now finding I am reacting to things I was once fine with. Alcie your information has been invaluable, as has the no sulfites website I found several years ago, but at the moment I am reacting badly to bread, even when it is home baked. Do you have any advice?