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

Soy Lecithin A New "no-no"?


RacerRex9727

Recommended Posts

RacerRex9727 Rookie

I have been doing a pretty good job of being gluten-free, but I had a strong feeling I was missing something. Some things that were labeled "gluten-free" were still making me sick, and these were organic brands like Trader Joe's and Sprouts.

I found out that a family friend also has celiac disease, but she says her doctor told her to stay away from soy lecithin because it is a new addition to the "foods to avoid" list in the gluten-free diet. He could not emphasize enough how bad soy lecithin was for a celiac disease person. When I looked back to all the gluten-free foods that made me sick, I NOTICED THEY ALL HAD SOY LECITHIN!!! Gluten-free chocolate, candies, and some baked goods had soy lecithin in them. I was shocked considering these were under the gluten-free label even though soy lecithin is supposed to be a gluten-free "no-no".

Is this very new knowledge or do some of you guys know about this already? Does soy lechithin make you guys sick too? Apparently it's protein form is similar to wheat's which is why it is in the same family of grains.


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



Celiac.com Sponsor (A8-M):



Juliebove Rising Star

I've never heard this before.

chasbari Apprentice

Yep, caused me trouble from the beginning. I removed it early on...dumb luck on my part, I guess.

tarnalberry Community Regular

it doesn't have gluten, and isn't on the no-no list for celiacs due to 'autoimmune response to the molecule' reasons. some people avoid it because they cannot tolerate soy, and some people avoid it due to the excess soy processing to get the ingredient. but yes, something can be gluten free (contain no wheat, barley, rye, or oats) and have soy lecithin.

mushroom Proficient

Soy lecithin is a problem for many of us, but I don't believe it has any relation to gluten. It is just an often associated intolerance.

txplowgirl Enthusiast

I have problems with it but I have a problem with all soy.

ksymonds84 Enthusiast

I just recently diagnosed soy intolerant based on an IgA test. I've removed all soy and its made a VERY big difference in my symptoms but agree with everyone that soy is gluten free in itself. Just wish it was as easy as wheat to find on food labels!


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



Celiac.com Sponsor (A8-M):



Emily888 Rookie

Thank you so much for writing this Thread! Soy and Soy Lecithin has caused me trouble for sooooo long. I eliminated it early on and it is such a bummer because so many foods have it in it. Almost every chocolate bar has it :(

  • 3 years later...
Atomal Newbie

Anyone know of a nutrition bar that's soy-free, lactose-free, and gluten-free. Discovered on my flight that soy lecithin (in Kind nutrition bar) is a no-no for me

julissa Explorer

I am allergic to soy and dairy, so it is especially hard to find anything prepared, but it can be done. you just have to have expert skills in label reading, it gets easier, believe me.

 

try Enjoy Life products if you are wanting cookies, chocolate, etc. they are pretty good, just expensive as you can imagine.

  • 2 years later...
TheTruePath Newbie

Hello community, Self diagnosed Celiac guy from Sweden here...

Im writing this to approve that this is a real thing and NOT nescessarily a soy-allergy (not for me anyway)

I have the same problems with Soya Lecithin as Gluten, so yeah its on my no-no list, 

I get the same inflammation in the body, and feel very feverish just the same as gluten, (i do NOT have the traditional symptoms like stomache-ache and diarhea) 

The interesting part is that i can eat soy flour and other "natural" soy ingredients, and im feeling just fine

Soya Lecithin is a fat extracted from flakes of soy beans, to get these fats out, they use HEXANE to separate the fats from the flakes, and it might be these residues in soy-lecitin that activates the auto-immune response in some celiacs? 

  • 5 months later...
Comokiwi Newbie

I realised I was reacting badly to chocolate and narrowed it down to the soy lethicin - I have found Perugina chocolate which is made with sunflower lecithin and I can eat this without reacting - mercifully!!

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. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

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

    • Total Members
      133,366
    • Most Online (within 30 mins)
      7,748

    caroljben
    Newest Member
    caroljben
    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

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.