Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Well Soy Is Out


sandsurfgirl

Recommended Posts

sandsurfgirl Collaborator

I've only been gluten free for 8 days and today I was feeling the best I've felt in a long time. I also cut soy and dairy because I know I have trouble digesting them and I want to heal.

But like a big dummy, I was sorely tempted tonight by my kids drinking chocolate soymilk at the neighbor's house. I had a few sips and then a couple more.

Now my stomache hurts so bad. The pain is awful!!! I am so mad at myself. I'm so new to this journey and to mess up this soon into it just makes me feel silly. I mean seriously, what was I thinking?

All I ate at their house was steak and salad. I read the ingredients on the garlic salt for the steak and I read the ingredients for the salad dressing and they were safe so I'm pretty sure it was the soymilk.


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



Celiac.com Sponsor (A8-M):



chasbari Apprentice

I've only been gluten free for 8 days and today I was feeling the best I've felt in a long time. I also cut soy and dairy because I know I have trouble digesting them and I want to heal.

But like a big dummy, I was sorely tempted tonight by my kids drinking chocolate soymilk at the neighbor's house. I had a few sips and then a couple more.

Now my stomache hurts so bad. The pain is awful!!! I am so mad at myself. I'm so new to this journey and to mess up this soon into it just makes me feel silly. I mean seriously, what was I thinking?

All I ate at their house was steak and salad. I read the ingredients on the garlic salt for the steak and I read the ingredients for the salad dressing and they were safe so I'm pretty sure it was the soymilk.

My experience as well. When I went gluten-free last year I actually had a worse reaction to soy than to gluten. Haved stayed clear of it ever since with no interest in ever reintroducing it. You have to be as diligent at reading labels for it as well. Who'da thunk it would be in canned tuna fish...grrrr. It has never been granted GRAS (Generally Regarded as Safe) status as a food in the US from my understanding and yet here it is in everything.

CS

Jestgar Rising Star

Sorry for this :(

Some people find they can tolerate soy lecithin, which would make your life easier if it were true for you as well. Might be worth testing it out.

ravenwoodglass Mentor

It is wise to drop soy for now but..... You are new to the diet. What did your friend do to prevent CC while cooking for you? If they eat gluten at the house precautions need to be taken. You could have been glutened by crumbs that were in the butter or on a counter, a cutting board that had had gluten ingredients cut on it, a colander that was used to rinse the salad veggies that is also used for pasta, a non-stick pan that had been used for gluten food and has scratches, A wooden spoon with gluten residue etc. It is very hard for us to eat food prepared in others homes. Do go ahead and drop soy for now but your reaction may not have been from that.

sandsurfgirl Collaborator

It is wise to drop soy for now but..... You are new to the diet. What did your friend do to prevent CC while cooking for you? If they eat gluten at the house precautions need to be taken. You could have been glutened by crumbs that were in the butter or on a counter, a cutting board that had had gluten ingredients cut on it, a colander that was used to rinse the salad veggies that is also used for pasta, a non-stick pan that had been used for gluten food and has scratches, A wooden spoon with gluten residue etc. It is very hard for us to eat food prepared in others homes. Do go ahead and drop soy for now but your reaction may not have been from that.

I was wondering about that stuff too. I've been eating things with soy lecithin and they haven't bothered me at all, so hopefully it's just the actual soy. I think soymilk, and pretty much all milk is just hard to digest in general so I will be more careful and avoid all of it for now.

Funny thing, I'm generally lactose intolerant but I ate some things that later I realized had dairy components like casein an other types of additives and no reaction. That might be a good sign! I just need something milky and creamy in my tea and breakfast cereals. Rice milk is a sad substitute.

mushroom Proficient

I was wondering about that stuff too. I've been eating things with soy lecithin and they haven't bothered me at all, so hopefully it's just the actual soy. I think soymilk, and pretty much all milk is just hard to digest in general so I will be more careful and avoid all of it for now.

Funny thing, I'm generally lactose intolerant but I ate some things that later I realized had dairy components like casein an other types of additives and no reaction. That might be a good sign! I just need something milky and creamy in my tea and breakfast cereals. Rice milk is a sad substitute.

Have you tested yourself on goat's milk? Lactaid milk??

sandsurfgirl Collaborator

Have you tested yourself on goat's milk? Lactaid milk??

A long time ago Lactaid didn't do it for me, but I will see in the future if my lactose intolerance was due to undiagnosed celiac. I'm really praying for that. I don't need a lot of dairy. If I could just have some cream or milk in my tea!!!

I've never tried goat's milk because the taste is well... goaty. LOL


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



Celiac.com Sponsor (A8-M):



VioletBlue Contributor

When I went gluten-free I pretty much cut out processed foods, so I've gotten very little soy in the last couple years. I've never cared for tofu or any other soy products so the only soy I was getting was soybean oil and soy lecithin in gluten-free things and of course in chocolate chips and bars.

Then I started having serious allergic reactions a few weeks ago to products with soy lecithin in it. The symptoms are less alarming with soybean oil, but soy lecithin is definitely out along with all other soy now.

The so called experts claim that soybean oil and soy lecithin can't cause allergic reactions because they don't contain enough of the soy proteins that set off soy allergies. Yeah, well, not in my experience.

I was wondering about that stuff too. I've been eating things with soy lecithin and they haven't bothered me at all, so hopefully it's just the actual soy. I think soymilk, and pretty much all milk is just hard to digest in general so I will be more careful and avoid all of it for now.

Funny thing, I'm generally lactose intolerant but I ate some things that later I realized had dairy components like casein an other types of additives and no reaction. That might be a good sign! I just need something milky and creamy in my tea and breakfast cereals. Rice milk is a sad substitute.

jackay Enthusiast

This past summer I tested positive to soy protein through a saliva test. Last month I tested negative to soy through a blood test. Yesterday I ate a can of tuna which contained soybean oil. I tested negative to tuna with a blood test. I noticed gas a couple hours later so wonder if the soy is still bothering me. Or is some gas normal?

My doctor said I shouldn't be bothered by either soybean oil or soy lecethin because they don't contain soy protein. I don't trust everything he says. Maybe I have outgrown the soy intolerance. Guess only time will tell.

psawyer Proficient

Or is some gas normal?

It is quite normal for all humans, whether celiac or not, to produce some gas as a result of the incomplete digestion of some complex carbohydrates. Certain foods are noted for producing larger amounts (think baked beans). But if you are reacting to fish in oil, that is likely a different issue.
nmlove Contributor

I just need something milky and creamy in my tea and breakfast cereals. Rice milk is a sad substitute.

Have you tried other alternative milks like almond, hemp?

The so called experts claim that soybean oil and soy lecithin can't cause allergic reactions because they don't contain enough of the soy proteins that set off soy allergies. Yeah, well, not in my experience.

I see this issue in my breastfed daughter. I kept reading how the oil and soy lecithin were ok but my daughter kept proving they were not! It's a pain reading labels for soy because it's not always bolded or in the "contains ..." statement if it's just the oil or lecithin. Plus, it's in everything! I'm still finding stuff that I somehow missed. Like in my cooking canola spray (I hardly ever use it). It's my least favorite of all (between dairy, soy and gluten).

jacnit Newbie

don't feel bad about messing up so soon:) i've been gluten-free (seriously trying anyway) for about 4 months..last weekend i went out for sushi on Friday night and helped myself to 5 pieces complete w/soy sauce oh and had two or three bites of my husbands udon noodles..didn't sleep due to horrific stomach cramps and guess what? went out the next night to the same place and did it all over again even though i KNEW better..i just wanted it soooo bad..was sick for three days...it's hard no doubt about it but i seriously think i finally learned my lesson.

jnclelland Contributor

Like in my cooking canola spray (I hardly ever use it).

The only cooking spray I've found without soy lecithin is Pam for Grilling. But it's gluten/dairy/soy-free (knock on wood that it stays that way!) and works fine for an all-purpose cooking spray.

Jeanne

T.H. Community Regular

Oh, related to the soy lecithin! my GI doc was just telling me about that, warning me to stay away from it. He was saying that he's noticed most of his celiac patients and others with auto-immune issues are more sensitive to genetically modified foods, and tend to develop food allergies more readily when they consume them. And on top of that, he was saying that soy lecithin is almost always genetically modified.

I wonder if that's one of the reasons your little one reacts so much, ya know?

I see this issue in my breastfed daughter. I kept reading how the oil and soy lecithin were ok but my daughter kept proving they were not! It's a pain reading labels for soy because it's not always bolded or in the "contains ..." statement if it's just the oil or lecithin. Plus, it's in everything! I'm still finding stuff that I somehow missed. Like in my cooking canola spray (I hardly ever use it). It's my least favorite of all (between dairy, soy and gluten).

VioletBlue Contributor

I was reading up on soy lecithin and found that it is literally the waste product left over from making oil out of soybeans. It supposedly will carry any contaminates or pesticides from the bean with it. I can't imagine how it wouldn't contain a fair amount of protein given the way it's processed.

It's a safe bet that about 99% of soy in the market, unless it specifically states it's organic is GMO soy. The same is true with corn and most everything else in the world these days. It's downright scary what's been done to our food supply in the last twenty years by Monsanto.

Oh, related to the soy lecithin! my GI doc was just telling me about that, warning me to stay away from it. He was saying that he's noticed most of his celiac patients and others with auto-immune issues are more sensitive to genetically modified foods, and tend to develop food allergies more readily when they consume them. And on top of that, he was saying that soy lecithin is almost always genetically modified.

I wonder if that's one of the reasons your little one reacts so much, ya know?

runningcrazy Contributor

I was reading up on soy lecithin and found that it is literally the waste product left over from making oil out of soybeans. It supposedly will carry any contaminates or pesticides from the bean with it. I can't imagine how it wouldn't contain a fair amount of protein given the way it's processed.

It's a safe bet that about 99% of soy in the market, unless it specifically states it's organic is GMO soy. The same is true with corn and most everything else in the world these days. It's downright scary what's been done to our food supply in the last twenty years by Monsanto.

I despise Monsanto! Grrrrr...

AKcollegestudent Apprentice

I almost react worse to soy than I do gluten, despite the fact that gluten affects me more in the long run. I am lucky--in very small amounts, I can handle soy lecithin. But anything else, including soybean oil? Migraine, fuzzy head, and all that fun stuff.

lvanderb Newbie

When I read this, I was thinking... uh oh... soy sauce... it probably has wheat in it.

My younger daughter was getting really bad nose bleeds and they're really much better now that we're all gluten free, but if she has soy sauce with her rice in a restaurant - I just wait and 2 or 3 days later she gets a nose bleed. I guess we have to find a nice portable size of gluten free soy sauce to take to Swiss Chalet.

don't feel bad about messing up so soon:) i've been gluten-free (seriously trying anyway) for about 4 months..last weekend i went out for sushi on Friday night and helped myself to 5 pieces complete w/soy sauce oh and had two or three bites of my husbands udon noodles..didn't sleep due to horrific stomach cramps and guess what? went out the next night to the same place and did it all over again even though i KNEW better..i just wanted it soooo bad..was sick for three days...it's hard no doubt about it but i seriously think i finally learned my lesson.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Jack Common's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      33

      What should I do with these test results?

    2. - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe

    3. - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,324
    • Most Online (within 30 mins)
      7,748

    TimothyV
    Newest Member
    TimothyV
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Itsabit
    • Itsabit
    • trents
      From the article you linked: "Currently, there are no recommended methods to test for non-celiac gluten sensitivity." "No recommended methods" is the key phrase here. Just on the anecdotal evidence of reading many posts on this forum, I think we sometimes see some elevated igg test scores with NCGS. They seem to be mildly elevated in these cases, not high high.
    • Itsabit
      Thank you for your reply. I’m beginning to think of iodine as another culprit in this, as much as I fear it. I will say my rash is extreme and diffuse - it’s everywhere! I first had it on both sides of my neck in the summer of 2023. My PCP and dermatologist at the time, thought it was a reaction to jewelry I was wearing, even though I had been wearing the same necklaces for literally years with no reaction. The dermatologist at the time repeated over and over again that “allergies are acquired.” Which I knew. But I was not reacting to any other jewelry I was wearing. So it didn’t make any sense to me that it would only be from my necklaces. Anyway, it abated on it’s own. Only to come back with a vengeance months later - and I had not worn any necklaces at all. And the rash involved more area. I was put on Prednisone (oral steroid) taper and it worked well, and the itch and eventually the rash went away. Another trip to a different dermatologist at that time, prior to starting the Prednisone, told me to change all of my hygiene products like soap and shampoo, and to slather on Vaseline. None of which worked, hence the Prednisone. Needless to say, the itch and subsequent rash returned - and now spread everywhere, not just the hollows on both sides of my neck. It’s there, on my upper chest and left breast, both upper arms front and back, and elbows, my entire back, down both of my hips and buttocks and the front of my right thigh. Now the back of that right thigh is starting to itch as well. Also my lower right forearm and middle knuckle on my left hand since going gluten free. I’m just itching everywhere all the time. It keeps me awake, or wakes me up when I do fall asleep. I’m trying my best not to scratch, but it’s nearly impossible! I’ve been using a dry washcloth to rub instead of scratching. And I have used cool wet washcloths which help, but only lasts for a few minutes before starting up again. I’m pretty much at my wit’s end. Just waiting for something to indicate what’s really going on so I can do SOMETHING to stop it! 
    • Itsabit
      Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer to abate. Instead of relief from the Dapsone, I had adverse reactions so had to stop it. After 2 months on it, if hadn’t helped with the itching at all, and I understand it usually helps in the first few days if it’s going to. My itch and rash actually got worse on the Dapsone and with going gluten free - which lead me to question whether I was getting glutined from other products I am using. It’s like a huge puzzle trying to put all these pieces together to somehow make it fit and make sense. Right now, myself and my doctor are perplexed. 
×
×
  • Create New...