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

What's The Science Behind Celiac Soy Intolerance?

Chakra2

By Chakra2
in Coping with Celiac Disease

Recommended Posts

Chakra2 Contributor
Chakra2
Posted

I have read about why some celiacs have trouble digesting dairy at first -- you need the lactase from the tips of the villi. But why are so many gluten-sensitive people also bothered by soy?Is there a similar anatomically-based reason?

Also, I'd love to know if/when/how anyone was able to reintroduce soy. I was vegetarian for 19 years (now pescatarian) so I did learn to love my miso and my tofu! And wheat-free soy sauce would be a big treat now that it looks like I'll be eating a lot of rice from here on out. :)

I'm curious about a dairy issue, too. Are all lactose-intolerant (non-celiac/non-gluten sensitive) folks out there missing the tips of their villi? Or are there other reasons that "normal" people become lactose intolerant?

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

Soy is a big, giant, hard-to-digest protein, as is casein. It may be that a lot of people don't digest it well, but don't get enough symptoms to be bothered by it.

Many adults are lactose intolerant. You are designed to consume milk only as an infant, it's a recent mutation that allows the lactase enzyme to persist in adults.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I don't have any science (sorry) but I read on some natural medicine sites that there was a connection between soy and thyroid disease. Hypothyroidism runs in my family so I cut out soy when I first did my elimination diet. When I tried to add it back in I had fatigue, joint swelling, muscle pain and extreme moodiness. So even though my thyroid tests are still coming back as normal, I'm inclined to think from my own personal testing that soy messes with my thyroid. Like I said I don't have any hard science to back this up, but if you do a search you will find all kinds of sites warning about giving infants soy formula. Perhaps that could be a starting place for you to find some scientific articles.

Marz Enthusiast
Marz
Posted

Well if certain gene mutations cause the body to produce antibodies in response to gluten, when not soy? Especially if they're similar structures.

I'm wondering if there are some "soy" celiacs out there that are being missed because their body is producing antibodies to soy, and not gluten? Maybe that's why lots of blood tests are false negative - we're just not looking for the specific antibody that some of us are producing? Just speculating at this point, because I have no scientific basis for any of this :)

I do know I react in *exactly* the same way to soy as I do to gluten, both immediately and days later.

Skylark Collaborator
Skylark
Posted

With the gluten and dairy, some celiacs' anti-gliadin antibodies recognize casein. This doesn't happen in all celiacs, so there are some negative studies around as well.

Open Original Shared Link

Open Original Shared Link

There was also an interesting study on biopsied mucosa where damaged mucosa could not break down casein. Bigger fragments of food protein are more immunologically active.

Open Original Shared Link

Celiacs have more anti-casein and anti-soy antibodies in general.

Open Original Shared Link

Open Original Shared Link

If you piece things together, you can hypothesize that celiacs have a combination of more antibodies in general and poor digestion. Bits of undigested food might react with all the antibodies so you get a soy or casein reaction in unhealed celiacs.

By the way, it took me between six and nine months to reintroduce casein and soy.

kwylee Apprentice
kwylee
Posted

With the gluten and dairy, some celiacs' anti-gliadin antibodies recognize casein. This doesn't happen in all celiacs, so there are some negative studies around as well.

Open Original Shared Link

Open Original Shared Link

There was also an interesting study on biopsied mucosa where damaged mucosa could not break down casein. Bigger fragments of food protein are more immunologically active.

Open Original Shared Link

Celiacs have more anti-casein and anti-soy antibodies in general.

Open Original Shared Link

Open Original Shared Link

If you piece things together, you can hypothesize that celiacs have a combination of more antibodies in general and poor digestion. Bits of undigested food might react with all the antibodies so you get a soy or casein reaction in unhealed celiacs.

By the way, it took me between six and nine months to reintroduce casein and soy.

This info is so helpful!!! And thanks so much for the synopsis of the links in everyday speak! Appreciate that!

Skylark Collaborator
Skylark
Posted

This info is so helpful!!! And thanks so much for the synopsis of the links in everyday speak! Appreciate that!

Summarizing links was Jestgar's excellent advice. :) Glad it helps and you found the info useful.

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

Celiac.com Sponsor (A8-M):


tweeks2010 Apprentice
tweeks2010
Posted

Today I tested myself with the ingredient soy lecithin i about 5 different things I ate today. Guess what...I get the same symptoms with that as I do when I get glutened. I only did a somewhat small amount , but it was enough to give me stomach cramping that has so far lasted hours and is still going.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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
      - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess...
    2. Roses8721
      - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    3. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    4. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    5. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy

      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,473
    • Most Online (within 30 mins)
      7,748
    Kelly Hannon
    Newest Member
    Kelly Hannon
    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
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      gluten-free Oatmeal

      By Roses8721 · Posted

      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • 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.