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
RacerRex9727
Posted

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
Juliebove
Posted

I've never heard this before.

chasbari Apprentice
chasbari
Posted

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

tarnalberry Community Regular
tarnalberry
Posted

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
mushroom
Posted

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
txplowgirl
Posted

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

ksymonds84 Enthusiast
ksymonds84
Posted

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
Emily888
Posted

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
Atomal
Posted

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
julissa
Posted

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
TheTruePath
Posted

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
Comokiwi
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.