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

I"m Soy free, getting there was hard.


John Burlingame

Recommended Posts

John Burlingame Explorer

Soy destroys my life entirely. I know what has soy and what does not, by touch taste or smell. I can tell if it contains soy in a few seconds. Being soy free is a acquired lifestyle. Everything I eat, I make from scratch, candy, chocolate,cookies, crackers,chips, flavored drinks. I do no t wear deodorant, can't. Cant drink most sodas, most contain soy now. Handshakes are a thing of the past after shaking a hand of a doctor and getting a soy contact, must have used moisturizers (vitamin E) manufactured from soy. All my meds are compounded. My neosporin is one my most expensive drugs, on 7$ tube runs me $80 compounded. My Ibuprofen 200mlg $1 a pill. pain meds a ton more.  Going to a store, any store is adventurous. The air fresheners contain soy. makes a bad day for me real quick. I've left stores in a hurry due to the soy contact that overcomes me.  Today, I'm looking into air mask so I can go into stores with out risking a soy contact, also finding gloves are hard. most of the easy fit gloves contain a soy powder. I have a facebook page dedicated to being soy free (Soy Lecithin) crossbones for a pic. My life of becoming soy free was a real adventure. I feel great, until I mistakenly come in contact with it. Soy starts With brain Fog, memory loss, then the panic attacks start. get overwhelming fast. Some days I feel trapped in my own body. Outside is land mines just waiting for me to eat, taste,smell or touch.

 

In the past I would have been fine, but all these regulations has made it easy to have soy in everything manufactured. Its the cheapest thing to use, so was asbestos, maybe one day they will realize what soy does to your brain, as its doing to mine 100 fold. Soy is in almost everything, If you cant make it your self than its in it. My start in going soy free, the day I realized it was soy,soy lecithin killing me slowly. I was suicidal, a few days at best before I realized it was soy. There is no info out there about i. If there is, Soy manufactures have snuffed it out. 


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

I am highly allergic to corn....I feel your pain in a way. Personally I avoid pure soy as the distress it does to my gut and body. Soy lectin sometimes is in a few things and I try to avoid but it is damn near impossible.   

Oh mask, I got some allergy mask from this one company that work great and look cool. www.respro.com/store/product/techno-mask  is the one I got check out their others.

Victoria1234 Experienced
2 hours ago, John Burlingame said:

Soy destroys my life entirely. I know what has soy and what does not, by touch taste or smell. I can tell if it contains soy in a few seconds. Being soy free is a acquired lifestyle. Everything I eat, I make from scratch, candy, chocolate,cookies, crackers,chips, flavored drinks. I do no t wear deodorant, can't. Cant drink most sodas, most contain soy now. Handshakes are a thing of the past after shaking a hand of a doctor and getting a soy contact, must have used moisturizers (vitamin E) manufactured from soy. All my meds are compounded. My neosporin is one my most expensive drugs, on 7$ tube runs me $80 compounded. My Ibuprofen 200mlg $1 a pill. pain meds a ton more.  Going to a store, any store is adventurous. The air fresheners contain soy. makes a bad day for me real quick. I've left stores in a hurry due to the soy contact that overcomes me.  Today, I'm looking into air mask so I can go into stores with out risking a soy contact, also finding gloves are hard. most of the easy fit gloves contain a soy powder. I have a facebook page dedicated to being soy free (Soy Lecithin) crossbones for a pic. My life of becoming soy free was a real adventure. I feel great, until I mistakenly come in contact with it. Soy starts With brain Fog, memory loss, then the panic attacks start. get overwhelming fast. Some days I feel trapped in my own body. Outside is land mines just waiting for me to eat, taste,smell or touch.

 

In the past I would have been fine, but all these regulations has made it easy to have soy in everything manufactured. Its the cheapest thing to use, so was asbestos, maybe one day they will realize what soy does to your brain, as its doing to mine 100 fold. Soy is in almost everything, If you cant make it your self than its in it. My start in going soy free, the day I realized it was soy,soy lecithin killing me slowly. I was suicidal, a few days at best before I realized it was soy. There is no info out there about i. If there is, Soy manufactures have snuffed it out. 

That's really rough. I am so sorry you have to go thru this. How do you go about your general life? How do you work? Are you working with a doctor on any of this?

apprehensiveengineer Community Regular

Have you been tested formally for a soy allergy by an allergist? I am allergic to soy (+ via skin prick), but don't generally have a problem unless I ingest it or have it put directly on my skin. Soy allergies tend not to be anaphylactic.

To be clear I'm not doubting your experience -  it's quite possible that your allergy is more severe than mine. But... I found that initially, when I was still healing that I had a hard time telling the difference between a glutening and a soy exposure, because there is some overlap in my symptoms and my immune system was pretty out of control/erratic, making association between events and symptoms very difficult. Now it is more clear that many of the events I thought might be soy-related were probably more celiac-related, as with time the reactions became more delineated. I would honestly consider that first, as what you seem to be describing in terms of symptoms seems pretty celiac-related, not allergy-related.

I'll certainly sympathize that avoiding soy is quite difficult - the amount it gets pushed in America is absurd, considering that it is a top 8 allergen. I don't think my diet would change much if I was somehow magically able to stop being celiac because nearly all processed foods, personal care products and medications (even many allergy meds!) contain soy. Although it is probably not entirely necessary as these ingredients should not contain soy proteins, I do choose to avoid soy lecithin, unspecified tocopherol and natural flavours in what I ingest or put on my skin. That said, in the case of a handshake, you're looking at a trace of a trace at worst... I might consider that perhaps there are other more likely sources for your problems. I had to get rid of all processed food before I started noticing big improvements, and I'm very certain this had more to do with trace amounts of gluten (at a level that is tolerated by most celiacs, but apparently not me) than it did with soy.

You do have my deepest sympathies here - I certainly remember being super, super sick, having no idea what was causing it, feeling crazy and feeling like everything was out to get me. As an aside, if you're looking for gloves, you can get the powder-free, nitrile kind as well (I work at a hospital, and this is the only kind we use due to allergy issues).  Hope things get better!

Edit: if you're having problems with perfumes/fragrances, you might also have an allergy to that. My mother does, and she gets headaches/nausea/vomiting from being near people who wear heavy perfume/cologne, or in environments featuring scented candles etc. She is also allergic to soy, amongst many other things. I do not seem to have a problem with fragrances though... so her issues are likely unrelated to soy specifically.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,781
    • Most Online (within 30 mins)
      7,748

    BH1951
    Newest Member
    BH1951
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • nanny marley
      Hi I've been told I need a MRI on my bowels , I was booked for a colonoscopy, but because of my sever back issues and trapped nerve it can't be done , the nurse told me I will have to have a manitol drink a hour before the scan , I'm just a bit worried has I have issues with sweeteners like even a little,  I get a weird throat and ears and I've read it is a similar substance , not sure if anyone has had one of these scans or could give me some advise on the drink prep thanks in advance 😄
    • Colleen H
      Ok thank you.  Me either 
    • Colleen H
      Hi all ! Can a celiac attack be so intense that it causes your entire body to work in reverse? Meaning really bad pain,  neuropathy and muscle,  jaw pain,  the stomach issues , Horrible anxiety and confusion??  I had a Tums and you would think I ate poison. My jaw and stomach did not like it . Not the norm for me. Things that are simple are just out of control. Anyone ever have this happen??  I'm trying to figure out what I ate or did to bring on a celiac like attack. I had an idea before but yesterday I didn't have any gluten unless it was in a medication ?! Any positive suggestions ??  Thank you 
    • Scott Adams
      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
×
×
  • 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.