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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,560
    • Most Online (within 30 mins)
      7,748

    cdones1029
    Newest Member
    cdones1029
    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

    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
    • knitty kitty
      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.