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

Could I Be Casein And/or Soy Intolerant Too ?

myserenityprayer

Recommended Posts

myserenityprayer Explorer
myserenityprayer
Posted

I posted this in another section and then realized there was a thread already for other food intolerances. And within the 5 minutes of originally posting I have also learned that the villi are damaged the same way with casein and soy and due to that, biopsy results for celiac may be inclusive. what the heck???

Okay so I know I'm probably just being crazy but...

I'm debating getting the enterolab tests for casein, yeast, soy, etc. intolerances. I have been gluten free (i think and hope!!) for about 1 month and I still feel awful. Yesterday I thought my problems had to be because of all the cheese I had been eating. I went to a "medical nutrition therapist" who told me I should eat more low fat cheeses to help with my insulin resistence, assuming I wasn't lactose intolerant. But I decided to stop eating cheese as of last night for a little while to see if that helps. Today my stomach is still off and I'm so unbelieably foggy, which may be as result of my horrible insomnia attack last night, but whatever! So, today I think that maybe I could be intolerant to soy as well. I eat a ton of tofu and have a lot of soy milk. I try hard to like meat but I just can't get it down sometimes. Turkey and some chicken are usually okay but any other meat grosses me out. Aside from the cheese I had for breakfast yesterday I also had cheese flavored gluten free rice crackers and then for lunch I had a salad with soy dressing. Within only about 15 minutes of eating lunch I had what felt like an axiety attack or a drop in blood sugar. I was shakey, had trouble breathing and inhaled a handful of almonds because I thought I was about to pass out. Then I had to leave work early with horrible stomach pains. This morning for breakfast I had Nutty Flax cereal with walnuts and cut up banana (which by the way was delicious) with unsweetened Westsoy milk. For lunch I had homemade cucumber salad and humus. Now I feel sick. No bathroom problems just terrible heartburn/indigestion and a bad case of brain fog. Could I be intolerant to soy now too? If thats the case I'll only be able to eat veggies, fruits, and nuts, until i find out im allergic to nuts too!!!!

If you are casein and/or soy intolerant what happens to you when you ingest it? Do you have the same reaction as if you were glutened? Please help me!!! You can tell me if I'm being too much of a worrywart too! Thanx

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

Celiac.com Sponsor (A8-M):


Guest ~jules~
Guest ~jules~
Posted

I don't think theres anything crazy about listening to your body. I just started this also. I had a day where I had some gluten-free soy sauce, and got sick. I thought I was being paranoid, but I really think I may have other allergies too. Okay I keep hearing entrolab. What is it?

CarlaB Enthusiast
CarlaB
Posted

You sound like your a bit worried. I mention that because many celiacs have a problem with adrenal fatigue, and stress certainly doesn't help. So, first thing, relax!! :)

With damaged villi, you are more than likely lactose intolerant and should avoid dairy. In the beginning, you might want to avoid soy as well, but it might not be necessary. For me, I'm avoiding all but a very simple diet until I feel healed. I eat meat, chicken, fish, eggs, vegetable, fruit, rice, potatoes. With the exception of potatoes, very few people are allergic to any of these foods. I also buy organic as much as possible so that I put as little stress on my system as possible. But I feel really bad overall with a high level of fatigue.

I would simplify my diet if I were you to just the basics. Then after you're feeling better, add back in foods -- soy, processed gluten-free foods, etc. Then try dairy after several months.

This will take the stress of you, too, as you won't be constantly worried that something is bothering you. Get lots of rest, your body needs its strength to heal.

The only thing proven to have an effect on the villi is gluten, but casein and soy are questionable, it just hasn't been resesarched. If you simplify your diet, then add back those items, you will know very quickly what is causing your problem. I react very similarly to casein as I do to gluten. It's an undeniable reaction!

edit - I want to add, in support of what Ursula said on the other thread, glue is made from gluten, soy, corn, and dairy. All those can have a flattening affect on the villi and some docs think no one should eat any of them. I don't. But I will see if I can tolerate some soy and some corn ocassionally after I am healed.

myserenityprayer Explorer
myserenityprayer
Posted
  • Author

yes, I am a nervous wreck! But thank you. Your words of advice helped me yesterday too. I know I need to just calm down. I think I will try to stick with light foods for the time being. And I have always tried to eat as little processed non-organic foods in the past. And I thought I was so healthy!! Little did I know I was actually terribly malnurished. There are some really great organic markets by my house. I guess I just need to stick to those and some meditation. Thanks so much for your quick responses. The support this forum provides is so wonderful. :)

I don't think theres anything crazy about listening to your body. I just started this also. I had a day where I had some gluten-free soy sauce, and got sick. I thought I was being paranoid, but I really think I may have other allergies too. Okay I keep hearing entrolab. What is it?

I learned about Enterolab on this message board also and its very new to me too, thats why im debating it. Apparantly its a mail away testing center where they can test for food intolerances possibly through a stool sample (i think). They test for casein, soy, yeast, egg, gluten, and maybe some others. Its expensive but maybe worth it. I don't know though, I'm still figuring it out too. A lot of people on here seem to have gotten tests with them though. Let me know what you think... check out there site :

Open Original Shared Link

  • 8 months later...
givingthanx Newbie
givingthanx
Posted

I'm starting to wonder if Nutty Flax cereal is truly gluten free. The last couple times I had it, I got bad brain fog. I can't be certain it's the Nutty Flax, but it seems a super strange coincidence. There was a couple weeks in between the episodes.

burdee Enthusiast
burdee
Posted
I'm starting to wonder if Nutty Flax cereal is truly gluten free. The last couple times I had it, I got bad brain fog. I can't be certain it's the Nutty Flax, but it seems a super strange coincidence. There was a couple weeks in between the episodes.

I have soy sensitivity (verified by Enterolab tests 8/06). I seemed to have problems every time I ate the Nutty Flax cereal which is supposed to be gluten free. So I did an allergy blood test which included flax. I did NOT react to flax on that test.

Then I noticed the lower side of the Nutty Flax box said "Made in a facility that also manufactures products containing soy and gluten. Strict manufacturing and sanitation practices are employed to prevent cross-contamination. This product is routinely batch-tested for gluten."

I concluded that even though they try to prevent cross-contamination, they also batch test for the presence of gluten in that cereal. HOWEVER THEY DID NOT SAY THAT TESTED FOR SOY. SO THE CEREAL COULD HAVE SOY CROSS-CONTAMINATION. I stopped eating that cereal and my symptoms disappeared.

If you are soy sensitive and abstain for awhile, you can react even more intensely the next time you ingest even a tiny amount from cross-contamination. Find another cereal.

BURDEE

givingthanx Newbie
givingthanx
Posted
I have soy sensitivity (verified by Enterolab tests 8/06). I seemed to have problems every time I ate the Nutty Flax cereal which is supposed to be gluten free. So I did an allergy blood test which included flax. I did NOT react to flax on that test.

Then I noticed the lower side of the Nutty Flax box said "Made in a facility that also manufactures products containing soy and gluten. Strict manufacturing and sanitation practices are employed to prevent cross-contamination. This product is routinely batch-tested for gluten."

I concluded that even though they try to prevent cross-contamination, they also batch test for the presence of gluten in that cereal. HOWEVER THEY DID NOT SAY THAT TESTED FOR SOY. SO THE CEREAL COULD HAVE SOY CROSS-CONTAMINATION. I stopped eating that cereal and my symptoms disappeared.

If you are soy sensitive and abstain for awhile, you can react even more intensely the next time you ingest even a tiny amount from cross-contamination. Find another cereal.

BURDEE

Thanks for that post, Burdee. I'll stop eating it. Too bad, because it tastes really good with agave nectar. It's definitely not worth it, though. It affected my job yesterday.

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

Celiac.com Sponsor (A8-M):


  • 4 weeks later...
Emily Elizabeth Enthusiast
Emily Elizabeth
Posted

You're not alone! I have much of the same symptoms (trying to be gluten free since 4/27) and am also wondering about casein and soy. I have decided to cut out the casein, but I'm holding on to soy for now. I will let you know if I figure anything out. Keep me posted as well!

hathor Contributor
hathor
Posted
If you are casein and/or soy intolerant what happens to you when you ingest it? Do you have the same reaction as if you were glutened? Please help me!!! You can tell me if I'm being too much of a worrywart too! Thanx

I don't get the same responses (except that gluten, casein & soy all constipate me). Gluten gives me brain fog & headaches, casein makes my sinuses run, and soy makes me break out. Egg upsets my stomach. According to Enterolab, I'm intolerant to yeast also, but I've never noticed a reaction.

Reactions really do vary from person to person. There is another thread just about different reactions to soy and I know there have been casein threads as well.

  • 5 months later...
oceanmonad Newbie
oceanmonad
Posted

Hi, I am new to the forum, but I wanted to add that I also seemed to have a glutened reaction when I ate Perky's Nutty Flax Cereal. Too bad, because it tasted pretty good.

hathor Contributor
hathor
Posted

Strange. I eat Nutty Flax and don't have a problem. I guess I found it and tried it after my last post here some months ago and had forgotten this discussion.

It makes me wonder if people are reacting to what they put ON the Nutty Flax?

hathor Contributor
hathor
Posted

You know, guys, after I popped my mouth off about Nutty Flax not being a problem, I was feeling bad and wondering, why don't I feel as good as I was for a while there? I realized that I went from never having this cereal, to having it occasionally, to having it every couple days. I looked at my diet/symptom journal. I also was having a brain fog experience which I have the day after glutening (not with soy or any thing else) and there was absolutely nothing I could see in the previous day it could have been. Except for, maybe, the Nutty Flax.

So I'm experimenting with not eating it. I'm going to start a thread devoted to just this and see what people have to say.

Archived

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

Go to topic listing

  • 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. RMJ
      - RMJ replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

      I agree with @trents that the IgA you listed sounds like a total IgA, not celiac-specific, if 114 is normal. Were any other antibody tests run?
    2. trents
      - trents commented on Scott Adams's article in Kids and Celiac Disease
      2

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

      The practical takeaway: "For people who care about celiac disease, especially families who have children at higher risk, the findings highlight the importance of self-advocacy." It's the only parameter that the affected individual or their family members have control over. We need to learn to become "politely pushy" in order to get proper testing done when...
    3. Russ H
      - Russ H replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility...
    4. Scott Adams
      - Scott Adams replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New "Glowing Bacteria" Pill Could Transform Gut Disease Detection (+Video)

      This technology is currently years away, as it will need to go through an extensive FDA approval process.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,000
    • Most Online (within 30 mins)
      7,748
    bonniebeebe143
    Newest Member
    bonniebeebe143
    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

    • RMJ
      Positive biopsy

      By RMJ · Posted

      I agree with @trents that the IgA you listed sounds like a total IgA, not celiac-specific, if 114 is normal.  Were any other antibody tests run?  
    • Russ H
      Positive biopsy

      By Russ H · Posted

      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
    • Scott Adams
      Positive biopsy

      By Scott Adams · Posted

      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. 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.    
    • trents
      Help understand results

      By trents · Posted

      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Fruits & Veggies

      By Jordan Carlson · Posted

      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
×
×
  • 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.