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

Soya Lecithin


mushroom

Recommended Posts

mushroom Proficient

Okay, I know this isn't gluten, but since I have had to go soy-free also, every time I see the word soy in any shape or form I run a country mile. Of course, this has included soya lecithin, but I have been getting inklings in some posts that this can perhaps be differentiated from actual soy products. Is this so or is it just as deadly for those of us who are sensitive?

This is a very important issue to me (a chocaholic) since it makes the difference between eating chocolate and not eating any chocolate except Lindt 70% dark, which is okay but very limiting. Like no choc. chip cookies, etc.

What's the story?


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor

Probably the only thing you can do is try some chocolate with lecithin in it. My family was intolerant to soy but do fine with lecithin now. We were totally soy free for over a year though. We will eat stuff with soyoil (like mayo) when we eat at other people's houses since we don't want to put them through any more of a headache than gluten free. We are violently intolerant though and the long break may have allowed us some minor indulgences.

Juliebove Rising Star

If you have a soy allergy, you might be able to eat soy lecithin or soybean oil. Or you might not. Or you could simply buy soy free chocolates. Here are two places where you can get them.

Open Original Shared Link

Open Original Shared Link

You do have to make sure that the product you buy is also gluten-free because they do sell some gluten containing items.

mushroom Proficient

Thank you both for your responses. I think I am too "fresh" to attempt the soy lecithin yet--maybe a little further down the road since I am not ready for the itching yet. Julie, the soyfreesales site does offer some soy- and gluten-free choc. chips. I will order some when in U.S. and then I can make cookies!

  • 7 years later...
toneb66 Newbie

Hi, 

I am new here and was searching the forums for anything to do with soy lecithin.

I'm gluten intolerant and have been gluten free now for 2 years. Throughout that time I have felt quite ill on quite a few occasions - aches in my neck/shoulders, arms and legs and just a general feeling of lethargy - the kind of feeling that you get when you have the flu. I'd always put this down to the fact that I'd maybe been glutened but I could never work out what was causing it. 

Last week I was reading that this may be being caused by soy lecithins, which are found in many products. I decided to try eliminating any foods containing them - I was surprised how many things do! 

All week I have felt fine.....until this afternoon. I ate a bowl of Whole Earth Cornflakes not realising that they contain soy lecithins and I feel awful once more. I am now in no doubt that this is the cause of the aches and pains. I'm just wondering if anyone has experienced similar?

 

  • 2 weeks later...
toneb66 Newbie

An update on this. Yesterday I popped a square of chocolate into my mouth and before I had even swallowed it I realised that it contained soy lecithin. I didn't actually swallow any but last night I felt horrible again....aches in my arms, legs and neck. I am convinced it's the lecithin - I do seem ok when I eat soy though although I try to avoid that if I can.

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 Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

    2. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    4. - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

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

    • Total Members
      133,437
    • Most Online (within 30 mins)
      7,748

    vahid
    Newest Member
    vahid
    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
      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
×
×
  • 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.