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

Soy Intolerance!


Matt007b

Recommended Posts

Matt007b Rookie

Well i've been sick for years, and after my 4th GI specialist he suggested with my chronic low potassium blood levels, and chronic white blood cells in my stool (negative colonoscopy/endo/celiac blood tests) that I was suffering from some kind of malabsorbtion issues...not sure what...so he said to go on a elimination diet.

So i've been on a food elimination diet for a good 3 weeks and have found out i'm VERY intolerant to soy. One drop of the stuff and I get severe nausea...anxiety..finally an answer!

So I took soy out for a good 3 weeks and counting but I still feel awful..so I'm now gluten free 12 days. Even though I tested negative i'm still going to try it for a few months since I don't have insurance. I do remember the doctor saying on my negative blood test "out of a scale one to six you're a two..so I don't think it's an issue" but i'm still going to try.

I'm still dealing with bad IBS-C...some minor anxiety..weak..tired..zero energy...i'm taking a gluten free multi-vitamin and just got some potassium to take..

But has anyone else had major issues to soy? How long did it take you to recover? I read somewhere that soy can damage the gut..not sure if that's true..I also suspect corn and i'm dairy/casein free as well just in case. Mostly my diet is veggies/fruits/meats...I went fructose free for a good month and that didn't work.

Thanks!


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



Celiac.com Sponsor (A8-M):



mushroom Proficient
Well i've been sick for years, and after my 4th GI specialist he suggested with my chronic low potassium blood levels, and chronic white blood cells in my stool (negative colonoscopy/endo/celiac blood tests) that I was suffering from some kind of malabsorbtion issues...not sure what...so he said to go on a elimination diet.

So i've been on a food elimination diet for a good 3 weeks and have found out i'm VERY intolerant to soy. One drop of the stuff and I get severe nausea...anxiety..finally an answer!

So I took soy out for a good 3 weeks and counting but I still feel awful..so I'm now gluten free 12 days. Even though I tested negative i'm still going to try it for a few months since I don't have insurance. I do remember the doctor saying on my negative blood test "out of a scale one to six you're a two..so I don't think it's an issue" but i'm still going to try.

I'm still dealing with bad IBS-C...some minor anxiety..weak..tired..zero energy...i'm taking a gluten free multi-vitamin and just got some potassium to take..

But has anyone else had major issues to soy? How long did it take you to recover? I read somewhere that soy can damage the gut..not sure if that's true..I also suspect corn and i'm dairy/casein free as well just in case. Mostly my diet is veggies/fruits/meats...I went fructose free for a good month and that didn't work.

Thanks!

Count me in for soy (even soy lecithin), corn, wheat, lactose, and throw in potato and citric acid too. How is it possible to be intolerant to so many things??? I do sympathise. It would be interesting if you could get a copy of your blood test results because doctors often do not read them correctly. My husband was told he was "borderline" celiac. That was before he broke out in dermatitis herpetiformis, which is definitely NOT borderline, it is full-blown. It's akin to being a little bit pregnant. I think it is a great idea to try gluten free and see if it helps.

If you are so tired and lethargic, have you had your nutrient levels tested, like iron, Vit.D, B12, folate, specifically, but other vitamins and minerals too besides the potassium? If your gut has not been working properly you are probably deficient in some of these.

Like you, I have had chronic urinary tract infections; I think it often goes with celiac disease. And even if you are not diagnosable under current criteria as a celiac, you could still be in the legions of us who are gluten intolerant and don't show up on the testing they currently have available. You can be just as sick, but with nothing to prove it.

Good luck on your dietary changes--I do hope they work for you.

Matt007b Rookie
Count me in for soy (even soy lecithin), corn, wheat, lactose, and throw in potato and citric acid too. How is it possible to be intolerant to so many things??? I do sympathise. It would be interesting if you could get a copy of your blood test results because doctors often do not read them correctly. My husband was told he was "borderline" celiac. That was before he broke out in dermatitis herpetiformis, which is definitely NOT borderline, it is full-blown. It's akin to being a little bit pregnant. I think it is a great idea to try gluten free and see if it helps.

If you are so tired and lethargic, have you had your nutrient levels tested, like iron, Vit.D, B12, folate, specifically, but other vitamins and minerals too besides the potassium? If your gut has not been working properly you are probably deficient in some of these.

Like you, I have had chronic urinary tract infections; I think it often goes with celiac disease. And even if you are not diagnosable under current criteria as a celiac, you could still be in the legions of us who are gluten intolerant and don't show up on the testing they currently have available. You can be just as sick, but with nothing to prove it.

Good luck on your dietary changes--I do hope they work for you.

Hey thanks for the response! :)

You know you gave me a good idea..i've been using citrucel since it's gluten free as far as I know..and I've had issues with acidic things in the past...I'm going to go citrus free as well. How in the world did you figure that out? That's a tough combination to break...I feel that my answers are just right around the corner it's just hard to figure out what the secret code is to break it...gluten/soy/citric acid? Soy/dairy/fructose?? I mean there's so many...

anyway what do you eat for breakfast? I've been doing rice chex with pacific foods rice milk, but I know it has traces of corn in it :S

well thanks I need it...been sick too long hope you are much better as well!

mushroom Proficient
Hey thanks for the response! :)

You know you gave me a good idea..i've been using citrucel since it's gluten free as far as I know..and I've had issues with acidic things in the past...I'm going to go citrus free as well. How in the world did you figure that out? That's a tough combination to break...I feel that my answers are just right around the corner it's just hard to figure out what the secret code is to break it...gluten/soy/citric acid? Soy/dairy/fructose?? I mean there's so many...

anyway what do you eat for breakfast? I've been doing rice chex with pacific foods rice milk, but I know it has traces of corn in it :S

well thanks I need it...been sick too long hope you are much better as well!

The citrus thing came on me later, with terrible itching. I stopped to think what, if anything, was different about my diet and realized that I had been drinking quite a bit of citrus juice (including with my Bacardi :lol: ) and it was citrus season here so had been scarfing mandarin oranges and using citrus as flavor to make up for lack of soy sauce, and the penny dropped....I hope to be able to go back to it later but haven't had any since May.

Why don't you try the elimination diet if you can't figure out what's causing your problems. Cut out all likely allergens, and then add them back in one at a time every two to three days. This is the quickest way of identifying the culprit(s). It means going back to meat/fish, veggies, rice to start with until your symptoms calm down, but you can progress through quite quickly in a couple of weeks. Keep a food and symptom diary too, don't trust your memory on your reactions.

I do yogurt with flaxseed oil mixed in for breakfast with some gluten/corn-free toasted muesli and sliced almonds on top, with kiwifruit, berries, or some other fruit with it. It is quite yummy.And yes, thank you, I am much, much better.

Matt007b Rookie
The citrus thing came on me later, with terrible itching. I stopped to think what, if anything, was different about my diet and realized that I had been drinking quite a bit of citrus juice (including with my Bacardi :lol: ) and it was citrus season here so had been scarfing mandarin oranges and using citrus as flavor to make up for lack of soy sauce, and the penny dropped....I hope to be able to go back to it later but haven't had any since May.

Why don't you try the elimination diet if you can't figure out what's causing your problems. Cut out all likely allergens, and then add them back in one at a time every two to three days. This is the quickest way of identifying the culprit(s). It means going back to meat/fish, veggies, rice to start with until your symptoms calm down, but you can progress through quite quickly in a couple of weeks. Keep a food and symptom diary too, don't trust your memory on your reactions.

I do yogurt with flaxseed oil mixed in for breakfast with some gluten/corn-free toasted muesli and sliced almonds on top, with kiwifruit, berries, or some other fruit with it. It is quite yummy.And yes, thank you, I am much, much better.

Good glad you're doing better! Yeah i'll go back on the elimination diet..I was dairy/soy/gluten/casein/corn free for a good 3 weeks but I can't seem to feel better, but now i'm wondering if it's either citrus or salicylate...I have had a bad reaction to asprine/soda/orange juice in the past so at first I thought it was fructose but now i'm dreading it might be one of those two (citrus/salicylate) so i'll go back on rice and meats..*sigh*...one day...one day i'll fly again..(it's been 4 years ugh!)

thanks for your breakfast ideas..that's the toughest thing is breakfast..right now i'm doing puffed rice with pacific rice milk or lactaid milk (I know not casein free but I just added that to my diet..I doubt I have issues with dairy..or even wheat...corn I think I have a problem..soy is a KILLER ugh.) so in a way it sounds a lot like your diet and problems. I'll keep fighting but thanks for the info! *sorry for the slow response*

lisa25 Rookie
Count me in for soy (even soy lecithin), corn, wheat, lactose, and throw in potato and citric acid too. How is it possible to be intolerant to so many things??? I do sympathise. It would be interesting if you could get a copy of your blood test results because doctors often do not read them correctly. My husband was told he was "borderline" celiac. That was before he broke out in dermatitis herpetiformis, which is definitely NOT borderline, it is full-blown. It's akin to being a little bit pregnant. I think it is a great idea to try gluten free and see if it helps.

If you are so tired and lethargic, have you had your nutrient levels tested, like iron, Vit.D, B12, folate, specifically, but other vitamins and minerals too besides the potassium? If your gut has not been working properly you are probably deficient in some of these.

Like you, I have had chronic urinary tract infections; I think it often goes with celiac disease. And even if you are not diagnosable under current criteria as a celiac, you could still be in the legions of us who are gluten intolerant and don't show up on the testing they currently have available. You can be just as sick, but with nothing to prove it.

Good luck on your dietary changes--I do hope they work for you.

Soy makes me feel really terrible too. A soy cross-contamination gives me a headache that can't be phased by taking excedrine migraine. It also gives me symptoms of a urinary tract infection sometimes turning into one and other times not. I have also figured out that I get UTI sensations from acidic juices like orange, grapefruit and cranberry. For a while I was drinking tons of cranberry juice which is supposed to help with UTIs, but eventually I read somewhere that for some people it is one of the worst things for a UTI. I also drink Pacific Foods Brand rice milk because I have had soy cc issues with some of the other brands even if they don't list soy as an ingredient.

Matt007b Rookie
Soy makes me feel really terrible too. A soy cross-contamination gives me a headache that can't be phased by taking excedrine migraine. It also gives me symptoms of a urinary tract infection sometimes turning into one and other times not. I have also figured out that I get UTI sensations from acidic juices like orange, grapefruit and cranberry. For a while I was drinking tons of cranberry juice which is supposed to help with UTIs, but eventually I read somewhere that for some people it is one of the worst things for a UTI. I also drink Pacific Foods Brand rice milk because I have had soy cc issues with some of the other brands even if they don't list soy as an ingredient.

Thanks Lisa, yeah I also do pacific foods rice milk..seems pretty safe to me, but yeah soy does the same thing to me too, severe headache..migrane - like a dark cloud over my head for a good couple of days. Very bad and quick reaction.

I've been doing this elimination diet, and I started up some citrucel and felt worse. The only thing I can think of is citric acid *shrugs* or something in it that caused that because i'm just eating rice and beef/chicken with salt right now.. :( So i'll go citric acid/citrus free for a couple of weeks and we'll see if it's the final nail in the coffin in beating this! I've had bad reactions OJ/Soda so..makes sense..

anyway thanks everyone for your help, I thought most people intolerant to citric acid was like skin..breathing and such but i'm finding a few people who have IBS issues..stomach pain and such as well.


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



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
Swimmr Contributor

crapola, I can't delete it...

  • 3 weeks later...
woodnewt Rookie

I had a goiter since I was a teenager, which doctors could not explain. Thyroid tests all came back normal, but within 6 months of stopping soy, the goiter is pretty much gone. Shame it wasn't discovered sooner.

So yes, I have issues with soy.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,361
    • Most Online (within 30 mins)
      7,748

    anabjermeland
    Newest Member
    anabjermeland
    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

    • Rogol72
      I've never had an issue this side of the pond. If I'm out I drink Bulmers Cider. Sometimes draft and sometimes bottled. The draft cider lines are for Cider only. 
    • Rejoicephd
      Hi everyone do you know whether when you get a draft cider if there is a chance that it runs through the same tubing as a beer did sometime prior?  the reason I’m asking is that I’m trying to eliminate a source of hidden gluten that I think hits me about once a month. And I have a suspicion it might be cider from the draft at certain bars. When I am out, if I decide to drink, I usually order a cider brand that I know is gluten free.    what I’ve noticed is that a couple times when I got a draft cider, I got symptoms of being  glutened that night and the day after. This doesn’t seem to happen with all times I drink cider. I had a draft at a very clean brewery and I didn’t react from that, which is what made me start to wonder. Does anyone know if this is a possible source of getting glutened? I am like 99% sure that this is the cause and I think I’ll switch to bottle/can only from here on out, but would be interested if others experienced the same thing (or work in a bar and know how this works). Thanks!
    • cristiana
      Thank you for the update @Rejoicephd it is good to know that you may have some answers.  Keep up the good work with your diet, and do let us know if you do get a firm diagnosis.  I took so long to feel better and for my TTG levels to normalise,  but got there in the end, so also bear in mind it does take longer for some of us.
    • StuartJ
      Well, three months later and a startling revelation!  After going gluten free (and nearly bankrupt buying special foods), my wife made a lunch of meat potatoes and gravy made with Bertolli white sauce - no wheat there right?  Big flare up withing hours and I was really wiped out with it.  She rechecks the label on the sauce bottle and right at the bottom of the ingredients XANTHAN GUM. There's our #1 suspect again!  So by way of experimenting, she decided to try making a loaf of bread with just regular white flour like she used to do and see what happened; the familiar smell hit me when I walked in the door last night and I sat down to eat this still warm, fresh goodness - I thought even if I have to take Imodium sandwiches, it will be worth it 😋 No ill effects, either overnight or today!  Half the loaf is now gone because I had some for supper, saving just one last slice for breakfast in the morning` - I've used the bathroom once and that was normal, so maybe it is not the gluten after all? Can't wait to try a beer! 😁
    • trents
      Unfortunately, the development of celiac disease usually is not an end in and of itself. It usually brings along friends, given time. It is at heart an immune system dysfunction which often embraces other immune system dysfunctions as time goes on.
×
×
  • Create New...