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

Soy Intolerance? What Else?


AJ Leigh

Recommended Posts

AJ Leigh Rookie

I self-diagnosed myself with celiac just under a year ago. I went on a gluten free diet, and for about 5 months I felt incredible. I suddenly had energy, my stomach aches were gone, and best of all I didn't need to sleep 15 hours a day. It was such a dramatic change that near strangers noticed a difference! However, for the last couple of months I've been feeling quite ill again. I have terrible burning stomach pain, like acid indigestion, that's bad enough that I had a colonoscopy and an endoscopy. Of course they both came up completely negative for anything, save the fact that they discovered I'm severely lactose intolerant (which I already knew).

Anyway, I'm beginning to think I have an intolerance to soy. I take in quite a bit of it between soy milk, ice cream, the gluten free baked goods, and coffee, so I've switched to coconut and almond milk and am trying very hard to cut soy out of all my food, which has been excruciatingly difficult. My question is what kind of intolerance symptoms do you guys have with soy? And how long do you think it'll take to get it out of my system? I've read that soy reactions can linger up to 4 weeks. I just need an idea of when I should consider the fact that it may be something else besides soy.


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



Celiac.com Sponsor (A8-M):



mercury6 Newbie

I self-diagnosed myself with celiac just under a year ago. I went on a gluten free diet, and for about 5 months I felt incredible. I suddenly had energy, my stomach aches were gone, and best of all I didn't need to sleep 15 hours a day. It was such a dramatic change that near strangers noticed a difference! However, for the last couple of months I've been feeling quite ill again. I have terrible burning stomach pain, like acid indigestion, that's bad enough that I had a colonoscopy and an endoscopy. Of course they both came up completely negative for anything, save the fact that they discovered I'm severely lactose intolerant (which I already knew).

Anyway, I'm beginning to think I have an intolerance to soy. I take in quite a bit of it between soy milk, ice cream, the gluten free baked goods, and coffee, so I've switched to coconut and almond milk and am trying very hard to cut soy out of all my food, which has been excruciatingly difficult. My question is what kind of intolerance symptoms do you guys have with soy? And how long do you think it'll take to get it out of my system? I've read that soy reactions can linger up to 4 weeks. I just need an idea of when I should consider the fact that it may be something else besides soy.

As someone with multiple food allergies I avoid gluten, soy and limit dairy. After nixing gluten I was eating alot of products that contained soy, just as you probably have been and I soon found that soy gives me asthma. I'm not sure how long the effects linger and everyone's reaction will be different, but for me I noticed an improvement in my symptoms within a few days of removing it from my diet. The less I am exposed to the better. Watch out for soy lecithin, too. It's in numerous products like teas, candies and just about all commercial chocolate (as an emulsifier). You may want to consider talking to your physician about getting an ELISA blood test to identify any other food allergies. Be sure to keep reading food labels. Good luck and hope you feel better soon!

missmellie Newbie

My response to soy is very much like the reaction to gluten (typical gastrointestinal response), without any skin reaction though. Dairy affects me the same way. I hope you feel better soon.

AJ Leigh Rookie

Thanks guys <3 It seems like no matter what I eat these days I get a tummy ache :(

Bubba's Mom Enthusiast

Once I eliminated gluten from diet I felt better, but only for a short while. I was getting migraines,D, achy joints, reflux, off balance, pain in my lower right quadrant. I was keeping a food log and as I tried to figure the puzzle out it seemed soy was causing me problems?

At first I could tolerate soy lethicin and some soy oil, but became more and more sensitive. Now my soy reactions are much worse than gluten. I can't tolerate even miniscule amounts, like tocopherol in vitamins, etc. Most recently I reacted very strongly to EggLand's Best eggs, which are fed a very soy heavy diet.

I had allergy testing and was negative. My allergist explained there are certain kinds of allergies, or intollerances that there's no good test for finding.

I'm still feeling the effects of soy from the egg I ate 4 days ago.

I suggest keeping a log of everything you eat and any reactions. If soy is your problem, be sure to look for it in any supplements you may take. I'm finding that soy is in SO many things..it's harder to avoid than gluten!

Good luck to you. I hope you can figure out what might be aggrivating your system.

AJ Leigh Rookie

Ugh I didn't think about vitamins and stuff. I need to keep my food log regularly. Thank you :blink: !

vb10 Newbie

As far as I know, this is very common.

The same thing was happening to me and many other people who went gluten free. I have developed intolerance for: milk, dairy products, soy and soy products, oils, seeds, nuts, gluten free stuff (pasta, bread, etc.), corn, rice, potatoes, yams, eggs, canned good and a whole range of other foods.

Why? Here is my theory: for many years, I was gluten intolerant but my body was able to handle that. For four years following my surgery I have developed a full-blown celiac disease, without even knowing it. When the symptoms got so bad I thought I was dying from some mysterious illness, my new doctor (God bless him) told me to go gluten-free. And my body, that got so used to attacking gluten, suddenly had nothing to attack anymore. So it started searching for things that would be similar to gluten in structure so it could attack them. Grains and starches, as well as milk protein were the first targets. Even though they do not have gluten, they have proteins that are very similar in chemical structure. When I eliminated all possible causes, my body turned on itself and I developed a severe gastritis.

Right now I am on Paleo diet. A modified version of Paleo, I must add, since I only eat some vegetables and tubers (no nightshades, no onion family, no citrus fruit and no nuts or oils). However, I do not feel sick after meals and my body is not attacking itself any longer.

Good luck to you! And try eliminating everything but vegetables and grass fed chicken/meat/low-mercury fish, see how it works for you. No salt or any spices either. If you think it does not taste good - that is not true. I have finally discovered how good food actually tastes without all those additives, so it worked for me! Above all, listen to your body and what it is telling you.


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



Celiac.com Sponsor (A8-M):



Pegleg84 Collaborator

Hi Bubba's Mom, and everyone else.

I've also recently started to suspect soy as another problem food for me, along with dairy (likely Casein intolerance rather than lactose intolerance). I've been on the gluten-free diet for nearly 3 years, and have been much better. If I accidentally get into gluten, I get some gastrointestinal and other mild symptoms starting a couple hours later, and feel kinda bleh and sometimes mild anxiety the next day or two.

In the past year, though, I've been having problems with mild vertigo (most of an unsteady, rocking feeling, with sinus pressure and some nausea, that comes and goes for several days at a time). I've been tested for inner ear and balance disorders and so far all clear. In an attempt to manage the symptoms I've cut back on salt, dairy, and haven't been eating much soy for nearly two months now (cut out soy sauce and such mostly because of the salt content). Now when I eat anything with much salt or dairy my head goes all swimmy within minutes. I've been suspecting that soy might cause it as well. Tonight I cooked some tofu as a deliberate test of this theory. and yep, feeling kind of off now, though not necessarily as bad as with milk.

It seems that intolerance to milk and/or soy commonly goes hand in hand with Celiac disease. Vb, that's an interesting theory about our immune systems finding something similar to gluten to attack once we've cut it out of our diets. I've read that soy and casein have similar structures to gluten, though it's inconclusive whether they can also cause damage the same as gluten.

Could it also be that even having trace amounts of gluten is preventing our bodies from healing completely, hence the reactions to other similar foods?

In any case, I've also gone from feeling pretty great for a long time, thought i'd figured out the whole diet thing, and now it's been thrown into chaos again. My reactions to soy and dairy might not be bad yet, but could worsen as time passes. Maybe there's more to Celiac than just gluten? hmm.

Good luck to all trying to figure out what to eat and what to avoid.

Bubba's Mom Enthusiast

There can be other causes for flattened villi, so if you are still having problems it may be time to look at them as the source for your symptoms?

https://www.celiac.com/articles/50/1/Main-Causes-of-Flattened-Villi/Page1.html

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. - trents replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    2. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    3. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    4. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

    5. - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

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

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    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
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
×
×
  • 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.