• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

For Those With Other Food Allergies And Interolences
0

12 posts in this topic

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 :)

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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).

0

Share this post


Link to post
Share on other sites
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***

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites




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?

0

Share this post


Link to post
Share on other sites
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!!

0

Share this post


Link to post
Share on other sites
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!!!!

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,346
    • Total Posts
      935,626
  • Member Statistics

    • Total Members
      65,027
    • Most Online
      3,093

    Newest Member
    lcook9@my.wgu.edu
    Joined
  • Popular Now

  • Topics

  • Posts

    • You have a few options. If your in a restaurant or cafe and want a safe meal, just declare yourself celiac or alternatively say 'no gluten please, it's a medical requirement' if you're uncomfortable doing this. The objective is for them to treat your being gluten free seriously and distinguish yourself from hipster part time fad dieters.  With friends you can develop a shorthand answer: 'I worked out myself I had a problem with gluten and now sadly the tests won't work. I know I either have celiac or non celiac gluten sensitivity, either way I have to be gluten free for life from here on out. No exceptions, its just not worth it' and stick to that line till they're bored senseless by it and stop asking.  Consistency is the key to this and will help you immensely, whilst people think you can be persuaded they'll try to do so and you'll constantly find your willpower being tested. Once they realise that it's just not an option for you they'll stop and that will make it easier for you. Read up on NCGS here if you're interested: https://www.celiac.com/gluten-free/topic/117969-non-celiac-gluten-sensitivity-a-resource/   Best of luck      
    • You might be like me and need to get a vitamin and mineral panel blood test.  And make sure it includes iron.   We both might be deficient in certain vitamins/minerals.  My medicals bills have been so high I've put it off and just started taking a multivitamin instead.  But I'm not sure it has it in what I really might be deficient.   So I'm going to spend more money and get a vitamin and mineral panel blood test. Even at my age I have high metabolism.   Gluten free meals only fill me up for 2-3 hours so I have a backpack with me everday and have gluten free snacks to hold me over.   My weight went from 168 to 161 my first month gluten free.  But it seems to have stabilized and might be going back up again a little.  I'm in the start of my 3rd mo. being/trying to be gluten free.   If I am hungry for too long I kinda get light headed and dizzy so I bring gluten-free snakes with me. I drank a bottle of Ensure + my first month to help keep weight on but it didn't seems to agree with my stomach.   It might of been my body trying to adjust to the new gluten free diet that caused that issue.  
    • Thanks, cyclinglady.   That's encouraging to know that people can have a relatively normal life with Crohn's.   I have a co-worker whose in his 50s with Crohn's.  I understand he's had it most of his life.  Lots of surgeries, iron infusions and ongoing pain.   My GI appointment isn't for another three weeks.   I had an abdominal CT scan 9 years ago for similar issues and it was clean.   I'm fairly old for Crohn's --I'm in my mid 40s-- and understand that it mostly affects people in their teens and 20s.  But, there are always those outliers. Given that both my brother and his son have Celiac...I'm hoping(?) for the less destructive disease.   
    •  Sounds like gluten might have snuck back into your diet, either a condiment, spice, a contaminated pot, utensil, bowl, or cup. Is your whole house gluten-free? Are you still fixing gluten meals for the kids? Once you go completely gluten free after the first few months many become hyper sensitive to gluten, where as a tiny amount of CC throws it all off the cliff like all hell broke loose in your guts. Double check back over everything. Read the 101, clean out and double check everything, I found freezer paper/butcher paper to make a nice clean work area and clean up a breeze, foil line pans etc. Cheap starts with cookware are to use microwave cook ware from nordicware, crock pot liners, and disposable or new utensils/cookware. https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ Try keeping a food diary with a list of everything your eating, include every condiment/spice etc. Try to find a common denominator, Rotate your meals using different foods, cuisines, and source that are gluten-free. You might find some other foods that offend your gut, as many of us also find or develop other intolerance in the first few months.
    • Hi! I was officially diagnosed a couple of months ago now but I have been gluten free for about 4 months since my endoscopy. However, in the last month I have noticed some worrying post diagnosis and treatment symptoms. My appetite has shrunk enormously. I used to be able to eat bowls and bowls of food and still be hungry, I could consume food even when full and I was constantly snacking. I understand over eating is a big part of celiac disease before going on a gluten free diet but food is such a huge part of my lifestyle. This last month I feel as though I have lost myself a bit as huge parts of my character like my love for food, huge appetite and my non fussy nature have all been turned upside down. I could easily not eat any snacks in a day now and not have to have all my meals. I thought I might have lost weight so I weighed myself on the same scales I did a couple of months ago. I am a young tall girl and was 10 stone for the last year at least. In the last few weeks I have lost half a stone which is 7 pounds and am now 9.5 stone. This is not intentional and I did not aim or want this to happen so I am concerned about any continued lack of appetite and weight loss in relation to my health. Therefore, I am going to weigh myself each week and make sure I am eating all three meals. If it continues I'll visit the doctor. Also, I am noticing fatigue still which was a huge part of my pre diagnosis symptoms. I get to a certain point in the afternoon where I feel like I need to go home and rest because I can no longer continue. I have no stamina and it is restricting my freedom, which I feel has already been taken from me as a result of this diagnosis that came at a frustrating point in my life which was a huge nuisance. Finally, I am also finding it a bit of a struggle to get my head around the whole thing still and to understand what it means for me and my life. I am very worried and scared that it will impact me not just physically but mentally and socially and it scares me. I guess this was more me getting all this off my chest and into the open, if anyone has any advice or feedback I will be hugely grateful.
  • Upcoming Events