Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748

    Chels22
    Newest Member
    Chels22
    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

    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...