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. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

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

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.