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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.