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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.