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

For Those With Other Food Allergies And Interolences


myserenityprayer

Recommended Posts

myserenityprayer Explorer

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):



Ursa Major Collaborator

I react to soy pretty much the same as to gluten. In fact, soy and casein can both cause flattening of the villi as well. Meaning, that the biopsy possibly mistakenly diagnoses people with celiac disease when they might have an intolerance to soy or other things instead, unless you are confirmed to have the celiac disease genes (another good reason to question the 'gold standard' of biopsy for celiac disease).

myserenityprayer Explorer
I react to soy pretty much the same as to gluten. In fact, soy and casein can both cause flattening of the villi as well. Meaning, that the biopsy possibly mistakenly diagnoses people with celiac disease when they might have an intolerance to soy or other things instead, unless you are confirmed to have the celiac disease genes (another good reason to question the 'gold standard' of biopsy for celiac disease).

Oh gosh. So do you think I should get the Enterolab tests? And which tests would you recommend? I was diagnosed with celiac as a result of positive blood work and then to cofirm the diagnosis a positive biopsy. How do I get tested for the celiac disease gene? And what else don't I know that I should!!! ***sigh***

Ursa Major Collaborator

Your doctor could test for the genes (it's a blood test). I am doing research on different things right now. And while I found that soy can cause flattening of the villi several months ago, I have come across information just the other day, that many more things can cause it.

That's why I think that the gene test is more important than most people realize.

Your doctor doesn't know what she is talking about when it comes to fat. I think that you're damaging yourself by eating all that soy and cheese. Soy is NOT a healthy food. The only kind of soy that's okay, in small quantities, is fermented soy. Any other soy is pure poison to your body.

  • 2 weeks later...
Rachel--24 Collaborator

I dont think the gene test is a conclusive test at all. They havent determined all of the genes associated with Celiac at this time. There are still genes which are unknown at this time. I think a positive blood test AND a positive biopsy for Celiac indicates Celiac and a gene test would not be needed. The blood work has already proven an autoimmune reaction to gluten and the biospy has "backed up" the blood test. Even if you didnt carry one of the *known* Celiac genes....this would not mean that you dont have Celiac Disease.

Matilda Enthusiast

..

Guest Robbin

I think you should just try cutting out the soy for a couple of weeks to see what a difference it makes. In my case, gluten intolerance, soy intolerance and casein intolerance over the years caused bone and muscle development problems in childhood and the major health problems over the years. Chronic D for so long that I don't think I will ever have a completely normal digestive system. I realize now that the endoscopy I had sixteen years ago (no biopsy was taken) that showed widespread inflammation and ulceration, was from celiac. ( I was overweight and celiac disease was not even considered I believe because of that fact.) The long-term effects have been infertility problems, miscarriage, FM, damaged eyesight, horrible itchy rashes, etc., etc. (long list :angry: ) I agree with what others have stated --soy can be dangerous for some of us. Every bit as bad as gluten or casein. Please learn from my misery, lol.

-- Dr. Fine has stated that 1% of celiacs have the gluten intolerance gene. He, and other researchers have come to realize that there are other as -yet-to-be identified genes involved, as well. I noticed that so many of us with the gluten intolerance genes also have many other intolerances. Perhaps this combination is what causes the full-blown celiac disease as well as FM and the host of autoimmune diseases in many of us.

Perhaps keeping a food journal will help you. Soy can sometimes be a tricky one to eliminate. It is in so many convenience foods. I found that most gluten free items are soy free too, so that helps. Take care and good luck to you.


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



Celiac.com Sponsor (A8-M):



covsooze Enthusiast

Ursula - where did you find out that soy and other foods can cause flattening of the villi? Does the effect look the same as with gluten?

myserenityprayer Explorer
Was your soy salad dressing soy sauce based? If so are you sure it was gluten-free?

I checked with the company and its supposedly gluten free. i stopped eating it though out of nervousness!!

myserenityprayer Explorer
I think you should just try cutting out the soy for a couple of weeks to see what a difference it makes. In my case, gluten intolerance, soy intolerance and casein intolerance over the years caused bone and muscle development problems in childhood and the major health problems over the years. Chronic D for so long that I don't think I will ever have a completely normal digestive system. I realize now that the endoscopy I had sixteen years ago (no biopsy was taken) that showed widespread inflammation and ulceration, was from celiac. ( I was overweight and celiac disease was not even considered I believe because of that fact.) The long-term effects have been infertility problems, miscarriage, FM, damaged eyesight, horrible itchy rashes, etc., etc. (long list :angry: ) I agree with what others have stated --soy can be dangerous for some of us. Every bit as bad as gluten or casein. Please learn from my misery, lol.

-- Dr. Fine has stated that 1% of celiacs have the gluten intolerance gene. He, and other researchers have come to realize that there are other as -yet-to-be identified genes involved, as well. I noticed that so many of us with the gluten intolerance genes also have many other intolerances. Perhaps this combination is what causes the full-blown celiac disease as well as FM and the host of autoimmune diseases in many of us.

Perhaps keeping a food journal will help you. Soy can sometimes be a tricky one to eliminate. It is in so many convenience foods. I found that most gluten free items are soy free too, so that helps. Take care and good luck to you.

thank you very much. i actually started to do a lot of reading on soy especially as it relates to thyroid disease and apparently it is really dangerous and can cause severe negative reactions. although it is said that soy intake can help prevent some cancers, the negative effects seem to outway the positive. negative effects of unfermented soy can inlude, impairment of thyroid function, thyroid cancer, carcinogenic and mutagenic effects, blockage of trypsin and other enzymes needed for protein ingestion, the list goes on. There is some controversy and definitely more research needed but i'm done with it. i was eating so much tofu and drinking only soy milk. i through it all away a few days ago. The studies show that while fermented soy has been used for centuries in Asian cultures they do not consume it in the more common way we do. They also do not use it as much of a staple food as we think. And as a side note, i was on soy formula when I was little, which is the WORST!!! It extremely toxic to babies. That's probably how I developed autoimmune hypodthyroidism in the first place. I know that elliminating soy may be difficult, as it is in many products, but I will at least start with the more obvious and try to work on the rest of my family and friends who live by soy!!!!

frenchiemama Collaborator

At first I thought that soy, like dairy, was only bothing my skin. Soy makes me break out in eczema on my hands, elbow, knees and one ankle. Itchy and unpleasant. So I stopped eating soy. Then one day I was just dying for a cookie. The only thing I had in the house had soy (I hadn't thrown them away, just in case). The results were shocking. Not only did I break out as I had expected; but I was shaking, my heart was racing, I was having severe anxiety, grinding my teeth, and I couldn't sleep the entire night. I think I ended up getting less than 2 hours of sleep.

That was a huge lightbulb moment. For a while before that, I was becoming afraid that I was bipolar. I've always tended towards depression (but honestly, a lot of that was probably the gluten), but for a while now, especially the last 6 weeks or so, I had been a mess. Even my husband told me that I needed to find help. I was flipping between severe depression and almost delusional guilt (I was feeling guilty over things that happened 10+ years ago, and at one point I was just sick with guilt at how sad my mom was when I lost my first tooth) and being very hyper and anxiety ridden.

Then it dawned on me. My problems started getting severe right about the time that I gave up dairy, and replaced it all with soy. Now that I am 100% soy free again, I feel fine. Even keeled and normal.

diamondheart Newbie
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...

....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 :)

I think it's useful to get the tests done if it will help you. Let me give you my example. I stopped eating gluten, corn, and dairy on the advice of my acupuncturist. Casein seems to be ok for me, so I can eat the rice "cheese" that has casein in it. Fast forward 7 months: I had the Enterolab testing done, and my gluten, casein, and malabsorption all came back negative. Not surprising, since I had cut out gluten for so long and dairy as well. I didn't eat much of the fake cheeses with casein in them either because I didn't like them. But I do have two copies of a gluten intolerant gene (DQ1, subtype 5,5). That was the deciding factor for me to give up gluten for good, but getting rid of all the hidden sources of gluten was not taking care of my digestive problems.

I had surgery for something else in April, and my digestive problems were getting worse (whole 'nother story there, but related to LGS). My acupuncturist didn't think checking for more food intolerances was the problem, but that did in fact end up being the problem, as least the immediate problem to deal with at hand. I had IgG antibody testing done for delayed food intolerances for 90 foods. I moderately reacted to soy and some nuts and seeds. Now, I had decided to give up soy the month previous, but hadn't given up tamari and the antibodies were still showing up in my blood! That was enough for me to give up soy completely, but it's in everything! Soy lecithin is used in a lot of things, and you really have to read labels.

My reactions are mostly delayed, meaning I don't get a reaction when I eat the food. It shows up about 24 to 48 hours later. Sometimes even later. I get diarrhea and cramping in my abdomen, and generally feel lousy for a couple of hours after going the bathroom.

Even though I love dairy, I don't believe our modern dairy foods are very healthy, including organic dairy products. That is the only reason I have been able to stay off the dairy. I get an immediate reaction when I eat dairy. I can feel irritation in the back of my sinuses in my nose and I start getting post-nasal drip. My clogged sinuses have cleared up since I have cut out dairy. I still eat ghee, which is clarified butter, and the fake rice cheeses. There are just too many hormones in dairy that are not healthy, and I'm not talking about bovine growth hormones. We get a lot of estrogen and progesterone from dairy because animals are lactating when they are milked, or they are given estrogen and progesterone to get them to lactate when they normally wouldn't. These hormones are not listed on dairy packages, organic or not. We don't need excess estrogen and progesterone in our diets, especially women!

If the testing helps you, I say do it. Once you give something up, after about 3 months, you stop producing the antibodies to it. I wish I had tested for some of these foods while I was still eating them, but now I don't get any antibodies showing up for gluten, casein, or corn. I suppose that means I'm successful in having gotten them out of my diet, but I wish I had some information about how my body reacted to these foods.

I was really beginning to think I was crazy. I dealt with this for months. I think my acupuncturist thought I was crazy. But when I got my IgG test results back and cut out the foods I reacted to, my diarrhea went away. My brain fog is beginning to clear up. I know I need to get to the bottom of what is causing all these food intolerances, but cutting out the foods I'm reacting to was a big first step.

Claire

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,840
    • Most Online (within 30 mins)
      7,748

    sumkindofjoy
    Newest Member
    sumkindofjoy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This. How long has it been since you were tested for celiac disease?
    • trents
      You have been doing all the right things to manage your celiac disease since diagnosis so what would you have changed? Perhaps the only negligence was not seeking follow-up testing sooner and more regularly. But even then, what would you have done differently as far as the day to day management of your celiac disease? I assume you realize that when something is labeled "gluten free" that does not mean it contains "0" gluten. According to FDA regulations, it just means it contains no more than 20 ppm of gluten. And "certified gluten free" (GFCO) means the product contains no more than 10 ppm. Even the air we breathe contains some gluten as there has to be at least some wheat/barley/rye dust circulating in the atmosphere. My point is, take reasonable precautions to control what you can control and then live your life. You will eventually die of something probably not related to celiac disease.
    • PA Painter
      I've had the testing up to the biopsy. Once they confirm the intestine is not affected they cease pursuing further diagnosis, regardless of extra intestinal symptoms. They refuse to pursue anything non celiac.  I react to: banana, avacado, fresh cabbage, yogurt, pecans, walnuts, xantham gum, and obviously wheat, barley, etc. Even so called "gluten free" food cause a violent reaction. Believe it or not. I can eat 3 Tostitos any more than that ruins my next three days. I did have one of the genes for potential autoimmune problems but they said it could mean anything. The most I get in the stomach is acid reflux and hot snakes. My intestinal symptoms are minimal. I think the pathology is different in way yet similar in others.
    • Jsingh
      Hi,  Just to add to the possible cross reaction or contamination sources- look into how you are reacting to the milk protein casein, or course avenin in oats, quinoa protein, and also possible gluten contamination in cooking oils.  I care for my six year old daughter with Celiac, and it’s only after removing all oils from her diet has she felt better. Not even Certified ones were okay. I don’t know why is that, but it is so. I cook in animal fat whenever recipe calls for some oil. Nuts and avocado are the source of fat in her dieT otherwise.
    • knitty kitty
      Have you had a DNA test to look for the most commonly occurring Celiac genes?   There's some scientific evidence that Non Celiac Gluten Sensitivity is a precursor to Celiac Disease in genetically predisposed people. Which foods do you react to?  How do you react?
×
×
  • Create New...