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

Casein Intolerance


Rachel--24

Recommended Posts

jenvan Collaborator

For me, I don't cheat on dairy free. Not worth it--it means starting the next day and for several weeks my whole system will get backed up...which causes other issues, including frustration! I also don't cheat b/c aside from my noticeable symptoms...I wonder if dairy is causing issues in ways I don't notice. Eventually I will try dairy again to see if my intolerance has gone away as a result of intestinal healing. Even if my intolerance did eventually go away, I think I would only go back to occasional cheese or ice cream...no full-blown milk including diet. Read quite a bit about milk and don't feel I "need" it in mass quantities in my diet.


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



Celiac.com Sponsor (A8-M):



  • Replies 51
  • Created
  • Last Reply
BamBam Community Regular

Regarding the dairy free diet.

MMaccartney - some cafeterias and restaurants use a dairy flavored oil, but their is no butter or milk in it. It's a thick oil that looks and tastes just like butter. Our cafeteria makes it available on our popcorn sale days, cause it is just like adding butter to the popcorn, but no butter involved. I do not remember what the stuff is called but it is ordered through the cafeteria here at the clinic/hospital that I work in.

Dairy has been my problem for the last 8-9 months. Thanks to JenVan's challenge I was able to locate some gluten in things I never thought of (yogurt), and I have been totally gluten free since. But I still wasn't feeling any better, still constipated and alternating diarrhea, lots of bloated and gassy feeling. So then JenVan challenged me again and says "give up dairy and see how you feel." And that was it. I have given up dairy since Valentine's Day and I am feeling better and better each day. I don't have the money to get all the tests done, and I have found solutions to my problems here on Celiac.com.

I will be giving some advice to some new celiac diagnosed patients, please pray that I am patient and can answer their questions correctly.

BamBam

jenvan Collaborator
I will be giving some advice to some new celiac diagnosed patients, please pray that I am patient and can answer their questions correctly.

BamBam

Thats wonderful! I'm sure you will do a great job! Makes my heart glad to hear you are continuing to improve...

Rachel--24 Collaborator
I got so depressed when I found out I was casein intolerant. I had been on a df diet for some time, as I knew milk was causing me a problem (food diary told me so!). I was truly hoping I was lactose intolerant due to intestinal damage, and was holding out hope that I could have things like blue cheese, chedder cheese, ANY cheese!!

Thats exactly what I was telling myself too...that it was only lactose intolerance and it would go away with healing. I knew it was a problem from symptoms and food diary as well. Food diaries really do work when nothing else does. It takes a looong time to see the pattern but its there and I'm glad I kept the journals.

For me, I don't cheat on dairy free. Not worth it--it means starting the next day and for several weeks my whole system will get backed up...which causes other issues, including frustration!

So it really can take weeks to get back to normal. I'm still backed up from my overindulgence 3 weeks ago but was thinking it couldnt possibly be affecting me this long.

VydorScope Proficient
If it's REALLY REALLY cold and you add some plain gelatin to it, you *might* be able to create something approaching whipped cream! Are you opposed to tofu? Some silken tofu might help thicken it up enough to "peak" a little. And for heaven's sake, add some powdered sugar and vanilla!

HAPPY BIRTHDAY!!!

Never tired tofu, do not know anything about it so cant be oposed to it yet.

jenvan Collaborator
So it really can take weeks to get back to normal. I'm still backed up from my overindulgence 3 weeks ago but was thinking it couldnt possibly be affecting me this long.

For me it can...I would say at the least a week...2 weeks is pretty standard but can get longer. It really sets me back...and takes my system a while to get back on track. W/o dairy I am pretty good but will need to break out the psyllium every couple of weeks for a day or two... Hope you feel better soon! That is such an annoying feeling!!!

lonewolf Collaborator
Mines today.. and first one with out ice cream cake... :(

I'm on a quest to find you a suitable ice cream substitute! Have you been able to find Sharon's coconut sorbet? It's really yummy and you won't miss the dairy. We make "ice cream" cake with it. Can you get Celestial Seasonings "Tea Dreams"? It's made with Rice Dream. We've only tried the Imperial White Peach flavor and it's good - much better than regular Rice Dream.


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



Celiac.com Sponsor (A8-M):



StrongerToday Enthusiast

If you have a juicer you can freeze bananas, then "juice" them - comes out just like DQ soft serve :P

VydorScope Proficient
I'm on a quest to find you a suitable ice cream substitute! Have you been able to find Sharon's coconut sorbet? It's really yummy and you won't miss the dairy. We make "ice cream" cake with it. Can you get Celestial Seasonings "Tea Dreams"? It's made with Rice Dream. We've only tried the Imperial White Peach flavor and it's good - much better than regular Rice Dream.

The ONLY sorbet my Kroger carries is "Whole Fruit" or somthing like that. Its liek $4/pint. I am realy hoping this DariFree stuff that the REALLY AWSOME AND WONDERFUL JESERYANGEL is sending me will make good ice cream.

As for the bananas what I foudn works well so far is fress banana and frozen strawberries with just a little juice in a blender. Its extremely thick and I plan to start saving for an ice cream maker to replace the one I wore out. I think it might make a decent ice cream. Not tried freezing the bananas yet though.

key Contributor

Vincent,

I make a healthy smoothy.

HEre it goes,

1 cup of Orange juice

1/5 Silken tofu block

5 or more large frozen strawberry's

1 Large Frozen Banana

1 Tlsp. Flaxseed oil (optional)

This is a very yummy filling shake for breakfast or supper. My kids love it and it is healthy. You may want to sweeten it more if you like. I have tried soymilks, etc, but my kids like orange juice the best. Also make sure you let your banana's sit and get brown spots before freezing, so they are sweet enough and take them out of the peeling before freezing.

I am trying to go dairy free now too. Just got some Silk coffee creamer. WE will see about that. Also ate my lunch without the usual cheese and sour cream. Then I wanted ice cream, but managed to resist. I know the longer I go without it the easier it will get. Especially if it helps me feel better. I am not sure my problems are even dairy related, but I know dairy isn't that great for you. I am also vegetarian and so I am meat, gluten and dairy free now. I am also cutting back on processed foods, which i didn't eat alot of to begin with. I suppose in other poor countries they live on far less, but I feel a bit deprived.

Goodluck to you.

Rachel and others,

I haven't read alot about casein intolerance. How do you know you have it?? I have been avoiding giving up dairy, because I haven't thought it was my problem, but now I think maybe it is. I too suffer from C and had never in my life until this year. Before gluten free it was C and D and now it is C, unless I am gluttened.

I wish this wasn't SO complicated. I am still continuing to feed my family all differently and that is fun.

I am with you about cheating once in awhile. It would seem ok, but then if your body isn't used to it, then you will probably feel gross afterwards and for me it would be harder to get back on track.

Monica

VydorScope Proficient

Oh bah. I did not peel the brown banana first and its already a rock in my freezer. AH well.

key, I found a like of Vance Food's Darifree in the smoothie helps give it a "creamier" texture. I do not at all like any of the soy, rice or almond milks.

Green12 Enthusiast

I have gone without dairy off and on for the last 10 or 12 years. In my experiences dairy is the hardest thing to stay away from. Dairy makes everything taste so much better! The dairy substitutes IMO are horrible and just don't even come close to the real thing, so it's challenging. At least with wheat, or gluten, there are so many other grains that are very close imitations in cooking and baking, so you don't feel deprived.

At first it was very hard for me, but it did get easier and easier as time went on. I am to the point now that I don't even touch milk, I don't like the taste anymore and I actually prefer rice or almond milk on cereal for example. Cheese, for me, is another story. I just love it so much so I do indulge once in a while, holidays, special occasions, etc. but I get really sick afterwards. That's the thing, the longer you stay away from it the sicker you get when you do have it. So the bad end result is an incentive to just say no.

You have to get creative with meals that are full of flavor, it can be done, and with time you will get used to it, and possibly even prefer your food without dairy.

Good luck!!

VydorScope Proficient

Have thier been any real studies by respected organiztions that show if or if not dairy is addictive? I know there is actidotole sings of it in this thread, but what about any hard fast research?

Carriefaith Enthusiast

You may find that you get bad reactions if you consume casein. My dairy reactions seem to be a lot worse than they were. Also, I have read that intestinal damage can occur from casein.

key Contributor

Vincent,

I haven't tried the "milk" you use before or heard of it. What is it made from? Anyway, I wasn't referring to soy or rice milks. This is actually the tofu in a box or found in the cold section of your grocery store. It gives the smoothy the creamy texture. It sounds and looks gross, but it is so good. My three kids all love them. THey think they are getting dessert.

I gave up cheese once for two years pretty much and when I would have any, it would make my stomach kill! As I gradually reintroduced it though it doesn't do that. So I agree with what someone said about wanting to avoid it, because it makes you feel gross. Now of course I don't know if that is causing me problems, so it is much harder to start avoiding the stuff again. Plus now I am not able to eat gluten either. I really wanted icecream today. Maybe once I feel great, then I will be inspired to continue.

Monica

VydorScope Proficient
Vincent,

I haven't tried the "milk" you use before or heard of it. What is it made from? Anyway, I wasn't referring to soy or rice milks. This is actually the tofu in a box or found in the cold section of your grocery store. It gives the smoothy the creamy texture. It sounds and looks gross, but it is so good. My three kids all love them. THey think they are getting dessert.

Open Original Shared Link <-- read about it htere

They say you can make ice cream with it. Which I plan to try as soon as I replace my ice cream maker.

Felidae Enthusiast
I haven't read alot about casein intolerance. How do you know you have it?? I have been avoiding giving up dairy, because I haven't thought it was my problem, but now I think maybe it is. I too suffer from C and had never in my life until this year. Before gluten free it was C and D and now it is C, unless I am gluttened.

I wish this wasn't SO complicated. I am still continuing to feed my family all differently and that is fun.

I am with you about cheating once in awhile. It would seem ok, but then if your body isn't used to it, then you will probably feel gross afterwards and for me it would be harder to get back on track.

Monica

Basically, most hard cheeses do not contain lactose. So you can eliminate all dairy until you feel good, about a week. Then try some hard cheese, if you react it is most likely casein intolerance. If you do not react than it could be lactose intolerance. You would test that by introducing one more dairy item at a time.

key Contributor

I tried some Silk Hazelnut coffee creamer this morning in my coffee and It was NASTY!!! I don't know how they sell that product. Horrible! Anyway, so I had regular milk in my coffee. Can't you just have a tiny bit and it not bother you. My main problem is IBS with C. It isn't a normal C though. If I am not nauseated after having milk or whatever, can't I just really limit milk?? Is anyone else doing this with success. I don't drink milk and I can't give up cheese, sour cream and ice cream. Wouldn't a tiny bit in coffee be ok. I really don't understand casein intolerance though. Is there proof it actually damages your intestine like gluten?? I think there would be a limit that people can tolerate. LIke my pancakes have buttermilk powder in them.

Any thoughts??

Monica

VydorScope Proficient
I tried some Silk Hazelnut coffee creamer this morning in my coffee and It was NASTY!!! I don't know how they sell that product. Horrible! Anyway, so I had regular milk in my coffee. Can't you just have a tiny bit and it not bother you. My main problem is IBS with C. It isn't a normal C though. If I am not nauseated after having milk or whatever, can't I just really limit milk?? Is anyone else doing this with success. I don't drink milk and I can't give up cheese, sour cream and ice cream. Wouldn't a tiny bit in coffee be ok. I really don't understand casein intolerance though. Is there proof it actually damages your intestine like gluten?? I think there would be a limit that people can tolerate. LIke my pancakes have buttermilk powder in them.

Any thoughts??

Monica

Thoughts? yea Soy mlik tastes like chalk! :D

Try the DariFree in your coffee. So far I have not found a min amount of real dary thats safe.

mmaccartney Explorer

Well, I'll chime in and say that I (and my family) LOVE soymilk. We drink it every day, use it in all baked items, I use Silk French Vanilla in my coffee almost daily. my sons drink chocolate soy milk constantly.

But hey, I'm the guy that likes to eat onions like apples! limes and lemons too!!

To each their own!

Enjoy the Dari free, I'll enjoy my soymilk :D

key Contributor

Michael,

I actually love the SIlk soymilk. The regular, chocolate and vanilla. We drink it all the time. I just didn't like the Silk Hazelnut creamer. Not sure about the French Vanilla, but maybe I will give it a try. Most everyone I know likes the Silk Soymilk, but most people say they like it better in cereal versus a cold glass of milk with a cookie. I can drink the SIlk plain, but just not with my cookies. I also like it with hot chocolate.

If you are a diehard milk fan, then I can see not liking Silk. My husband won't even try it.

Monica

VydorScope Proficient
Michael,

I actually love the SIlk soymilk. The regular, chocolate and vanilla. We drink it all the time. I just didn't like the Silk Hazelnut creamer. Not sure about the French Vanilla, but maybe I will give it a try. Most everyone I know likes the Silk Soymilk, but most people say they like it better in cereal versus a cold glass of milk with a cookie. I can drink the SIlk plain, but just not with my cookies. I also like it with hot chocolate.

If you are a diehard milk fan, then I can see not liking Silk. My husband won't even try it.

Monica

I have tried a couple brands of soy, rice and almond milks, did not like any of them. My wife likes 8th Content Soy though. :D

tarnalberry Community Regular

you know, I don't get severe symptoms from casein - it's hard to tell I've got an intolerance at all. but I've got so many stupid little problems, that I just don't risk it, and totally avoid the stuff. I wish I didn't have to, and sometimes think I'm taking it too far, but why worry? eh.

Mango04 Enthusiast

I finally found the name of those raw food vegan, gluten-free cheesecakes I was talking about earlier in this thread. They're made by a company called Earth Cafe.

www.earthcafeonline.com

It looks like you can order them online but I've seen them for sale by the slice at many different health food stores and vegan restaruants in a few different cities. They're kinda pricey but it's impossible to eat an entire slice - and they're good

Anyway - something to try if you're gluten, dairy, egg and soy free!

cornbread Explorer
I finally found the name of those raw food vegan, gluten-free cheesecakes I was talking about earlier in this thread. They're made by a company called Earth Cafe.

www.earthcafeonline.com

It looks like you can order them online but I've seen them for sale by the slice at many different health food stores and vegan restaruants in a few different cities. They're kinda pricey but it's impossible to eat an entire slice - and they're good

Anyway - something to try if you're gluten, dairy, egg and soy free!

Thanks Mango! I AM gluten, dairy, egg and soy free, and I LOVE cheesecake (and miss it), so this is an awesome find. I actually also saw that my local Whole Foods (ok, it's the flagship store!) has a raw food counter, and they had loads of delicious looking foods, including desserts. All availble to go. The best part about it is that I read all the labels and there was virtually no item I couldn't have! It was like being pre-gluten-free! I I didn't buy anything though because I'm doing the Specific Carbohydrate Diet, but I'm going to introduce as much raw food as possible as soon as I'm able to.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,960
    • Most Online (within 30 mins)
      7,748

    jujubean
    Newest Member
    jujubean
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Because you have already had the "gold standard" test done, and because you have some experiential evidence that removing gluten from your diet causes you to feel better, it would make sense to begin the gluten-free diet as you wait for biopsy results.
    • growlinhard1
      I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluyen free earing may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice.
    • Wheatwacked
      My mom said when he was born "you got what you gave".  Until 5 years of he was gluten free, was well liked by his friends, although did get them into mischief at times, a leader of his group of friends, physically active and paid attention, as much as any preschooler.      At 5 years old we moved to my hometown and had to rely on our friends, my pediatrition (still the best doctor I ever had), my wife was a nurse so her aquaintences and doctor friends.  They all still believed back in 1980's that Celiac was a growing phase, and he wanted to be like everyone else.  So everyone's opinion was that if he tolerates gluten with no symptoms he had outgrown it.  He passed the summer at the beach (lots of vitamin D) was a prodegy swimmer and the whole team liked him and he fit in well.     Fall came, he started kindergarden school, less sun ( low vitamin D, Seasonal Affective Disorder is real), new people and a morning schedule that did not end up in a fun, active day at the beach.  Getting him going got more difficult.  By the first teacher-parent meeting in December, they brought up the subject.  He was disruptive in class.  By then we had forgotten what his doctor said 5 years earlier.  So he was diagnosed as ADHD.      Competitive swimming was his saving grace.  All though High School he continued to swim with his competetive team most days after or before school and with the beach club team in addition in the summer.  Some records he set lasted years.  After high school he became a professional ocean guard. Now getting close to retirement.  But always had difficulty concentrating on schoolwork.      He, and his wife, incidentally, is now having the health problems that I just have just gotten rid of.  I had forgotten what the doctor said to us 60 years earlier, bout Celiac Disease being hereditory.  He is starting to listen, but still in denial.  Loves his pizza.  At 63 I had arthritis, fibromyalgia, sleep apnea, enlarged prostate, alcoholism and I got dumber as the years passed.  They all are gone with gluten free and vitamin replenishment. My wife had allergies, endometriosis, fertility problems and miscarriages.  She passed 18 years ago. Sorry for the long story.  Reminds me of a Joni Mitchell song.  "L've looked at life from both sides now. From win and lose, but still somehow, it's life's illusions I recall. I really don't know life, at all"  
    • Beverage
      I feel for you. I've had an interesting history with some vaccine, especially t-DAP. One time after just getting it, I remember walking from the pharmacy to my car, reaching for the door handle of my car as my last memory, then waking up slumped into my car with the door wide open hours later. Nobody even knew I was there. I did get a bad cut from rotting rusty wood and probably animal droppings, and it had been 10 years, so I got a booster recently, but took someone with me. My doc back then did say he was concerned about my reactions to vaccines, but we never talked about what alternatives there might be. What is your risk when you do get sick? For me, I almost always end up needing prednisone and antibiotics and have to crawl back to life for months after those are done, prednisone really messes me up, raises my blood pressure to stroke levels, and the antibiotics mess up my intestines really bad. I have to take mega doses of C and D and B's, especially flush niacin, and probiotics.  So preventing flu is critical for me since I always get a long term negative effect from the treatment. I did a lot of research, traditional and alternative medicine, and they all say high vitamin D levels are crucial to so many kinds of illnesses, including flu, cancer, etc.  People with high D during covid had much better outcomes.  I always tested low in D even with high oral supplementation of D3 and K2.  So last year I saved up and bought a real vitamin D lamp, not one of those cheapie ones that you can get on Amazon that don't work, seriously, those are junk. Wow what a difference with a real D Lamp. We haven't been sick all year, which is rare for me, even after being around several sick people or people that came down sick just after visiting. I use the lamp about every other day or if I've been in a group of people or around anyone sick.  I have not yet had my D levels retested since starting with it (will do that at annual check up later this year), but I have not gotten a cold or flu (knock on wood), feel better than usual for a cold wet winter in the NorthWest, and my hair is growing in like crazy, all signs of improved vitamin D levels. It doesn't take long to use, just a few seconds and first and gradually build up. I now do it for a count of 200, which is about 3 minutes. I don't remember all the details on how the body creates its own vitamin D, but I do remember that the body makes a reaction on the skin and you don't want to wash that off for a few hours.  So I do the D Lamp right after my shower, not before.  There are 2 reputable ones that I found in my research: Sperti Vitamin D Lamp uses florescent tubes, you stand and turn in front of it, be sure to get the VITAMIN D LAMP, not the tanning lamp:  https://www.sperti.com/product/sperti-vitamin-d-light-box/ Chroma Vitamin D Lamp is LED's, you can stand and turn in front of it or hold it in your hand and wave it over your body, always keeping it moving so you don't burn:  https://getchroma.co/products/d-light-vitamin-d-light-device-uvb-red-nir AND YOU MUST WEAR SPECIFIC EYE PROTECTION WHEN USING, KEEP ALL PETS AND OTHERS AWAY, THE GLASSES ARE PROVIDED WITH THE D LAMP. I got the Chroma D Lamp when they had a huge sale last year, it's a small start-up company in Seattle.  Sperti is a larger longer term well known, and you can sign up for a 10% discount on their web site.  If Chroma had not had the sale when I was going to buy one, the Sperti would have been fine. They both often have back orders on them, but they do deliver as promised. I have read various articles on the effectiveness of the flu vaccine for example, not always highly effective every year.  Since your risk with vaccines is high, or if your risk of bad illness if you get sick is high, maybe consider how to mitigate both in another way, perhaps a D Lamp. 
    • trents
      That's what came immediately to my mind as well, Bell's palsy. And don't assume every medical problem is connected to her celiac disease as there is still something known as coincidence. Get this checked out by medical professionals and push for some serious testing. Don't let them brush you off. Be appropriately assertive.
×
×
  • Create New...