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 Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

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

      Small Bowel Resection 12 inches

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

      Small Bowel Resection 12 inches

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

      Small Bowel Resection 12 inches

    5. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

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

    • Total Members
      132,831
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. 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.