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 Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
    2. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test. In...
    3. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covere...
    4. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced. Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well. Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside...
    5. Wheatwacked
      - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748
    SinnamonToasty
    Newest Member
    SinnamonToasty
    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)

  • Upcoming Events

  • Posts

    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      Have I got coeliac disease

      By trents · Posted

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      Have I got coeliac disease

      By Wheatwacked · Posted

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
×
×
  • 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.