Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

2 Questions
0

23 posts in this topic

Good Morning everyone,

Okay, I just got my test back from enterolab yesterday with a positive test for casein sensitivity. So there seems to always be confusion on this, but it is very different than just lactose intolerance..correct? If you are casein intolerant, you should never have casein again, as with gluten, right? But if you are lactose, it is less serious and you might eventually be able to tolerate it again, or you could just take lactaid pills when you want some, right again? There always seems to be some confusion on this. Also, does anyone know any good sites that talk about casein specifically? I couldn't find any that didn't have anything to do with autism and it didn't seem like a very 'hot topic.'

Question 2: I'm thinking I may be rice intolerant because for the past month and a half, I've been having constant stomach problems. With the help of Patti (thank you) and by looking over and over in my food journal, I've noticed that the ONLY constant, or the 'staple' so to say, in my diet has been rice. So starting today, I'm taking it out to see if that helps. And I know there was a post not too long ago on rice intolerance, but I looked and looked and I couldn't find it! I also didn't read it because I always thought rice was def. my safest food. So, anyone have rice intolerance? And how common is it amoungst celiacs?

Any other comments regarding both of these topics would be very helpful to me right now.....I think I'm really onto something here but I want to be reassured that I'm not crazy.

Thanks in advance!!! :D

0

Share this post


Link to post
Share on other sites


Ads by Google:

You are correct with your statement about Casein...it is an intolerance and should be avoided. The casein is a protein in dairy (including goat milk, although the protein is slightly different), which, in your (and in my) case is causing a reaction in your system. Lactose is the sugar in dairy and some people are able to have it again.

I can't comment on your second question, although I'll be cutting rice out in the next few days...I'm just waiting to get through some lab tests and once those are done, I'm taking all grains out. I have read of people on this board who are intolerant to rice (or at least it gives them problems). I don't know if I'm intolerant to rice, but something is still causing me problems, so I'm going to try the SC diet to see if I can calm things down enough to figure it all out.

0

Share this post


Link to post
Share on other sites
Good Morning everyone,

Okay, I just got my test back from enterolab yesterday with a positive test for casein sensitivity. So there seems to always be confusion on this, but it is very different than just lactose intolerance..correct? If you are casein intolerant, you should never have casein again, as with gluten, right? But if you are lactose, it is less serious and you might eventually be able to tolerate it again, or you could just take lactaid pills when you want some, right again? There always seems to be some confusion on this. Also, does anyone know any good sites that talk about casein specifically? I couldn't find any that didn't have anything to do with autism and it didn't seem like a very 'hot topic.'

Question 2: I'm thinking I may be rice intolerant because for the past month and a half, I've been having constant stomach problems. With the help of Patti (thank you) and by looking over and over in my food journal, I've noticed that the ONLY constant, or the 'staple' so to say, in my diet has been rice. So starting today, I'm taking it out to see if that helps. And I know there was a post not too long ago on rice intolerance, but I looked and looked and I couldn't find it! I also didn't read it because I always thought rice was def. my safest food. So, anyone have rice intolerance? And how common is it amoungst celiacs?

Any other comments regarding both of these topics would be very helpful to me right now.....I think I'm really onto something here but I want to be reassured that I'm not crazy.

Thanks in advance!!! :D

After Enterolab diagnosed me as positive for casein, I asked them about it...here's the reply:

"If you do not take gluten and casein out of your diet, you could eventually incur intestinal damage.

Dr. Fine encourages a lifetime elimination of both gluten and casein once you are positive. You may not have the same symptoms after a period of elimination and then reintroduction of casein into the diet, but it can still do damage and cause other more systemic symptoms. casein sensitivity can be just as serious to the intestine as gluten sensitivity. I would be as vigilant about casein as gluten."

As for rice, I am highly suspicious myself that it bothers me, at least it does if I have it too often. In the context of various breads etc. made with rice (among many other things I haven't eaten much more), I have definitely noticed a connection between eating them and feeling bad. At the moment I'm totally avoiding gluten free breads, cakes, cookies etc. and I believe I'm feeling better already. We'll see....

Also, someone mentioned discovering she had a problem with tapioca starch, and I looked at some of the things I was eating (some of which did not contain rice flour), and a common denominator was the tapioca starch, so I'm considering that as a possible problem, too.

I'm thinking I need to eat very carefully for awhile to let things calm down from whatever damage gluten and dairy has caused me. I think the SCD diet will help ferret out what all I can actually eat (or not eat).

0

Share this post


Link to post
Share on other sites

Carole--that would be me with the tapioca starch problem. I feel that it gives me far worse symptoms than rice--the baking mix that included both of them caused me a gluten-like reaction. Really bad. I am doing much better off of all the grains except sorghum--but only 1 or 2 times a week, I don't want to become intolerant to that, too.

0

Share this post


Link to post
Share on other sites




Thanks everyone!

Starting today I'm actually going to go off of all grains for a while and see if things improve. I'm just so scared that the more I eat of the same thing, the more intolerances I'm going to get and pretty soon I won't be able to eat! Has there ever been a senario like that? I mean, then what? I'm really stressing myself out over here. I want my life back.

0

Share this post


Link to post
Share on other sites

This really is like a huge can of worms. I can see my major problems were with gluten and dairy, but as I was eating most things I liked, it was just a snowball effect most likely. So I eliminate gluten and dairy, and all the other stuff comes to the forefront. You mentioned in your signature about sugar...I also think that affects me in a huge way. But it was always hard to determine for sure since sugar was always mixed up with gluten and dairy. When I'm not feeling so great, however, I stop caring about what I'm giving up and I just want a non-reactive digestive system. It's weird how you can give up gluten (and dairy) and feel great for a short time, and then suddenly all this other stuff crops up. It's like a minefield. :o

0

Share this post


Link to post
Share on other sites
This really is like a huge can of worms. I can see my major problems were with gluten and dairy, but as I was eating most things I liked, it was just a snowball effect most likely. So I eliminate gluten and dairy, and all the other stuff comes to the forefront. You mentioned in your signature about sugar...I also think that affects me in a huge way. But it was always hard to determine for sure since sugar was always mixed up with gluten and dairy. When I'm not feeling so great, however, I stop caring about what I'm giving up and I just want a non-reactive digestive system. It's weird how you can give up gluten (and dairy) and feel great for a short time, and then suddenly all this other stuff crops up. It's like a minefield. :o

Exactly. So what are we supposed to do about it? Keep stressing? Or just deal with pain for the rest of our lives? I know that seems like giving up, but I feel like I'm making myself crazy with all of this. This has become my full time job outside of work and school.

0

Share this post


Link to post
Share on other sites

I still believe it's going to get better. I asked a question about new intolerances from some of the long time celiac people and most of the answers say it does get better eventually...new problem foods get less and less and that makes sense to me.

0

Share this post


Link to post
Share on other sites

I cant eat any grains or starches at all...I kept cutting more and more out until I was only eating brown rice hot cereal. Everytime I eat Tinkyada pasta it messes me up. The hot cereal is out now too...I wasnt doing well the whole time I was eating it. I came to the conclusion thats its not the rice itself that I'm having problems with (I'm not intolerant) but my system just isnt processing these foods correctly and its making me sick. I started SCD on Saturday and have felt better than I have in a LONG time. Also my chemical sensitivities have been reduced quite a bit. I dont know why I didnt do this a long time ago but better late than never. :)

0

Share this post


Link to post
Share on other sites

Rachel--That sounds great! I'm glad that you've found a way of eating that agrees with you. And I'm happy you're feeling better--was a little worried about ya there for a while ;)

0

Share this post


Link to post
Share on other sites
Okay, I just got my test back from enterolab yesterday with a positive test for casein sensitivity. So there seems to always be confusion on this, but it is very different than just lactose intolerance..correct? If you are casein intolerant, you should never have casein again, as with gluten, right? But if you are lactose, it is less serious and you might eventually be able to tolerate it again, or you could just take lactaid pills when you want some, right again? There always seems to be some confusion on this. Also, does anyone know any good sites that talk about casein specifically? I couldn't find any that didn't have anything to do with autism and it didn't seem like a very 'hot topic.'
I am allergic to milk so I avoid casein just like gluten. I read ingredients on labels just like I would with gluten. Here is a list of some foods that may have casein other than the obvious:

potato chips

popcorn (butter)

margerine (whey)

candy

wine

gluten free products

boost (whey)

rice crackers

soups (some Thai kitchen soups have dairy in them)

lactose free products

0

Share this post


Link to post
Share on other sites
I am allergic to milk so I avoid casein just like gluten. I read ingredients on labels just like I would with gluten. Here is a list of some foods that may have casein other than the obvious:

potato chips

popcorn (butter)

margerine (whey)

candy

wine

gluten free products

boost (whey)

rice crackers

soups (some Thai kitchen soups have dairy in them)

lactose free products

Wine???????????? Really???????????? I have never thought to question wine! Which wines have casein?

0

Share this post


Link to post
Share on other sites

Apparently wine can contain casein. I thought that casein was gone after the distilling process, but apparently casein can still be present in some wines. Here are some quotes:

"Casein, a milk by-product, is also commonly used and its worth noting that many people have an allergy to casein. Again, improper filtering can leave residues."

http://72.14.207.104/search?q=cache:7aXy9c...celiacdisease=2

"Wine! Casein is one of six substances that may be used to clarify wine. (Egg white is another.) If you call the vintner, ask if casein is used in the "fining process"."

http://72.14.207.104/search?q=cache:nTw62t...&ct=clnk&celiac disease=4

"Wine is clarified, or cleared, after fermentation. Some of the ingredients used include:

- edible gelatins (made from bones)

- isinglass (made from the swim bladders of fish)

- casein and potassium caseinate (milk proteins)

- animal albumin (egg albumin and dried blood powder)"

http://veganconnection.com/notvegan.html

Here are some links to some "vegan" casein free wines:

http://veganconnection.com/veganwine.htm

http://vegans.frommars.org/wine/

0

Share this post


Link to post
Share on other sites

Wow! Thanks for all the information. I had no idea.

0

Share this post


Link to post
Share on other sites

I thought that casein was removed from wine, but I had one glass of wine on the weekend and then I started having a typical dairy reaction within a few hours. So I did some reading and found that casein can still be present in some wines. I'm not drinking wine again until I find some vegan brands.

0

Share this post


Link to post
Share on other sites
Thanks everyone!

Starting today I'm actually going to go off of all grains for a while and see if things improve. I'm just so scared that the more I eat of the same thing, the more intolerances I'm going to get and pretty soon I won't be able to eat! Has there ever been a senario like that? I mean, then what? I'm really stressing myself out over here. I want my life back.

I am in the same boat as you all here and I am so frustrated and sick of being sick, I am going to stop eating anything with grain and potatoes for awhile, too. I still need to check out the scdiet and try that. It is so depressing sometimes, I know but we will get there. I want my life back too.

0

Share this post


Link to post
Share on other sites

Holy crappers, casein in wine. Maybe that is the cause of my D for the past two weeks. This whole casein thing sucks. I have no problem being gluten-free, but I hate being casein-free. Anyways, thanks for the great and extremely helpful info.

0

Share this post


Link to post
Share on other sites

Now I'm getting depressed again. One thing after another gets tossed out of my diet due to gluten or casein. Let'se see now...I can eat eggs, chicken, some fish, veggies but not nightshades or anything with starch, no rice, no this, no that. No wine! One of my few pleasures that was left! Time for a pity party I guess. Boo hoo hoo :(:(:(

0

Share this post


Link to post
Share on other sites

Wow, Carrie, thanks! I had no idea about the wine. I also don't drink the stuff in general, but still....

As for the rice topic, I tested allergic to rice when I did allergy tests a year ago. I just retested and am waiting for results. However, rice is one of the things I kept on eating anyway. Not because I LOVED it, but because I needed something to eat and had a very limited diet in general and lots of allergies. If you can go off it, you probably will feel better. I think all grains can be hard to digest for celiacs, especially when your body is still healing. I've been gluten-free for 2 years now and am finally starting to feel human again, and occasionally even get enthusiastic about eating something, lol. And I'm starting to eat more stuff. There IS light at the end of the tunnel, even if the tunnel is longer than you expected. ((hugs)))

Merika

0

Share this post


Link to post
Share on other sites

I agree with all of you, casein is harder than gluten free for me too. I was wondering if there is a specific gfdf website or any info someone is aware of that I could check out. I was always told it was a lactose intolerance -no wonder I never could drink milk even with 2 or 3 extra strength lactaid tabs (!)

0

Share this post


Link to post
Share on other sites

My pet theory now is that we've got some bad gut bugs that feed on starches and having a food intolerances makes it hard for the good bugs to thrive and lets the bad bugs take over. I think once the gut heals up and the balance of "good and evil" :D is restored then we won't be responding so harshly to so many things.

0

Share this post


Link to post
Share on other sites
My pet theory now is that we've got some bad gut bugs that feed on starches and having a food intolerances makes it hard for the good bugs to thrive and lets the bad bugs take over. I think once the gut heals up and the balance of "good and evil" :D is restored then we won't be responding so harshly to so many things.

Yeah...this is what I believe too. Its all about the balance...or should I say disruption of the balance.

My doctor seemed really pleased that I'm doing SCD....he doesnt want me adding new foods in yet though. Not only does the diet take away their food supply but not eating the foods we're reacting to takes some stress off the immune system and it can then focus more on the bad bugs.

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
      103,608
    • Total Posts
      918,336
  • Topics

  • Posts

    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,707
    • Most Online
      1,763

    Newest Member
    Ree8080
    Joined