Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.