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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,664
    • Most Online (within 30 mins)
      7,748

    Lkscot0uky
    Newest Member
    Lkscot0uky
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.