Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiacandme

Recommended Posts

Celiacandme Apprentice

For those of you that have determined you can't handle sulfites - how did you determine? What kind of symptoms did sulphites cause you? Was this during the healing process for you and were you able to add them back in?

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



greenbeanie Enthusiast

I get classic allergy symptoms from sulfites - runny nose, coughing, swollen tongue, etc. It's pretty much immediate, like within the first few bites. As a teenager I went through a period of gasping for breath after eating dried fruit, though we had no clue what was causing it at the time. I react to foods with naturally-occurring sulfites too (yogurt, vinegar, tofu - basically anything fermented), as well as any bleached flours and starches. It was hard to figure from labels, since sulfites are often used in the manufacturing process rather than added as ingredients, so I'd had no idea that lemon juice concentrate and other stuff like that was high in sulfites.

It took me about six months after going gluten free to recognize the sulfite issue. I doubt I ever would have figured it out beforehand, as there was just too much going on and I couldn't distinguish which foods were causing which symptoms. This did solve a long-standing mystery about why I often got very sick from mashed potatoes and fruit salad in restaurants but was totally with those same things at home: sulfites and/or lemon juice concentrate are added to prevent browning. This is irrelevant now because I don't eat out, but it was nice to finally have an explanation.

Antihistamines do help me quite a lot, though I know some doctors don't consider it a true allergy. In any case, I've been gluten free for over two years now and unfortunately my sulfite reaction hasn't really improved with time. However, I eventually learned my limit, so I can have some fermented foods and bleached flours/starches once in a while as long as I don't have them often.

mamaw Community Regular

I get  about  what Greenbeanie mentioned  plus  a BIG migraine....

  • 8 months later...
CCandS Newbie

Have had the sulfite problem since the very early 90's. Found out by inhaling fumes from a product called Iron Out, while cleaning a water softener, and then a few weeks later a dishwasher. Not too long after that, my worse asthmatic attack was from eating some horseradish. It was very, very scary as I didn't realize why I had such a hard time breathing and thought like the other times, it would go away in 5 or 10 minutes. It took longer maybe 20 minutes? I also was getting really bad migraines, that would start in lower back of neck and move up to my sinus's and behind both eyes ( still get these a few times a month). I was prescribed Imitrex, and it took some of it away, but not enough, so I would take tylenol. Within an hour of taking tylenol I would throw up, then start to feel better. I started making myself vomit when I had these headaches to feel better. I eventually read the labels on the products that had given me the asthmatic symptoms. A common ingredient was metabisulfites! I then went to the pharmacy to check on the tylenol, and after a little persuading managed to get the pharmasist to check his drug  bible. And yes back then tylenol did have sulfites in it. One of our big problems living at that home in the country was the well water. It was high in iron and organic sulfer, which you can see if you look in the back of a toilet. It's a black, slimy, greasy looking substance that didn't have a strong sulfer smell but clogged up water filters pretty fast. Maybe the fumes/drinking water etc. started all this I don't know. Within a year of this I got really sick, bedridden for 3 days, foggy head weak soaking wet night sweats, etc. After many doctor visits, tests, and more tests, I was also diagnosed with crohn's. I blame the sulfites and taking nsaids? Didn't now about nsaids and bowel damage back then and maybe would of taken anything to stop the pain anyway? About 2007 a friend with celiac prompted me to get a blood test, because she said, "my symptoms were so simular to her's" and she thought maybe I was misdiagnosed. I was going to a surgeon anyway so I asked him about the test. He said OK. I figured it would be good to rule it out so I had the blood test done. It came back positive. So he booked me for the scope biopsy, also positive. My gastro Dr. had a hard time believing I would have both "like getting struck by lightening  twice" he said. So he did he own scopes, and yes celiac and crohn's. Soooo now am on a very, very limited diet. Crohn's problems (bowel narrowing from scar tissue), 1 1/2 yrs ago forced a bowel resection, removing 25" of small bowel and appendix. I really think sulfites started this whole mess, but not many doctors seem to know or talk about sulfites. I have gotten more sensitive to sulfites over the past few years and now cannot tolerate natural occurring sulfites like in onions, garlic, old cheese. Seems they put that sulfite sh*& in so many things now, even my epipen :( 

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      12

      New Celiac Mama in My 30s

    2. - RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

    3. - knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

    4. - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      12

      New Celiac Mama in My 30s

    5. - trents replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748

    volivier
    Newest Member
    volivier
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.