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


CarlaB

Recommended Posts

CarlaB Enthusiast

I went gluten-free last December and felt a lot better. Almost three months later I got tested by Enterolab and had high numbers for both gluten and casein intolerance. Since I was feeling so good, I did not eliminate the casein. After 5 months gluten-free I'm feeling bad again much of the time and have linked it to milk consumption. I find it strange that I felt good for so long and am only now starting to feel the effects of the casein.

I was wondering what needs to be avoided to go casein-free. I don't know if it's in all milk products or not.


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
I was wondering what needs to be avoided to go casein-free. I don't know if it's in all milk products or not.

Yes, its in all milk products, cheese, yogurt, etc. Even the stuff thats labeled non-dairy like Cool Whip contains casein.

Here are a couple links.

Open Original Shared Link

Open Original Shared Link

AndreaB Contributor

Carla,

You might want to try just Cheddar Cheese. With the aging process it goes through it does something to the cheese. Don't remember if it's the lactose or the casein though.

Just looked that up...it's the lactose that's easier to handle.

That makes things really difficult. We went of dairy and went on to soy. Since soy is as bad as gluten we went off of it. Now we found out that both my hubby and I are intolerant to it anyway. I am allergic to dairy but not intolerant so have added it back in. Mostly butter and some cheese for me. Just bought milk for the kids to try.

CarlaB Enthusiast

Thank you for the replies.

Rachel, did Enterolab find a casein intolerance when they did your tests? It seems so strange to me that I was feeling so much better and now feel so bad ... the brain fog and fatigue are the worst, but the digestive problems are there, too. My casein was 30 on the Enterolab test, with <10 being normal. I finally noticed that it was after I had a cup of coffee with cream, or a latte, or ice cream that I would feel bad again. Does this make sense? Sorry if I don't the brain fog is really bad.

AndreaB Contributor
Thank you for the replies.

Rachel, did Enterolab find a casein intolerance when they did your tests? It seems so strange to me that I was feeling so much better and now feel so bad ... the brain fog and fatigue are the worst, but the digestive problems are there, too. My casein was 30 on the Enterolab test, with <10 being normal. I finally noticed that it was after I had a cup of coffee with cream, or a latte, or ice cream that I would feel bad again. Does this make sense? Sorry if I don't the brain fog is really bad.

Carla,

Sounds like you need to eliminate all dairy. :(

CarlaB Enthusiast

Yea, today is my first day off dairy. How long will it take to feel better?

flagbabyds Collaborator

it took me a couple days to feel better, but now i am bak on it, and i feel just fine!

hope it is only temporary (i can use lactaid without any problems) so they think it might have just been lactose not casein.


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast
it took me a couple days to feel better, but now i am bak on it, and i feel just fine!

hope it is only temporary (i can use lactaid without any problems) so they think it might have just been lactose not casein.

I'm glad you seem to be able to tolerate milk again ... especially since you can't have gluten, corn or soy!

flagbabyds Collaborator

i've very glad that i can have it again, i only had to stay off it for 3 months and then tried stuff w/ lactaid, adn it didn't make me sick, so now i am happily eating cheese again (and ice cream!)

Mango04 Enthusiast
Yea, today is my first day off dairy. How long will it take to feel better?

I'd give it at least a month. I say that because I wouldn't want you to give up on it if you don't feel better right away. The effects of casein sometimes have a way of lingering around for quite a while after you eliminate it.

Rachel--24 Collaborator
Thank you for the replies.

Rachel, did Enterolab find a casein intolerance when they did your tests? It seems so strange to me that I was feeling so much better and now feel so bad ... the brain fog and fatigue are the worst, but the digestive problems are there, too. My casein was 30 on the Enterolab test, with <10 being normal. I finally noticed that it was after I had a cup of coffee with cream, or a latte, or ice cream that I would feel bad again. Does this make sense? Sorry if I don't the brain fog is really bad.

My Enterolab was negative for casein (9). I had already been off dairy 4 months before testing so dont know if it would have been positive had I been consuming it. I react to dairy so I'm off of it regardless.

eKatherine Apprentice

It took me about a week after giving up dairy before I was able to fit into pretty shoes.

Nancym Enthusiast

I've been casein free for about 6 months. People get confused over casein and lactose, two totally different animals. Lactose is the sugar in milk and some processes, like culturing for yogurt and some cheese, the lactose is reduced. There's also an enzyme you can take or put in it that'll help you digest it. Some celiacs, the ones with intestinal damage especially, lose the ability to digest the lactose. But that can come back eventually.

Casein on the other hand is one of the proteins in milk, the other is whey. Casein isn't likely to be something you can ever digest, if you currently have problems. It is like gluten, very sticky stuff, if you've ever handled pure casein protein (I used to make protein drinks out of it... ugh!). I've heard that goat milk has a different sort of casein from cows milk. I'm currently experimenting with goat milk yogurt to see if I can tolerate it. I guess most mammals have variations to casein in their breast milk.

My main symptom to casein intolerance is bloating in the belly, gas, and I think both constipation and diarrhea.

CarlaB Enthusiast
My main symptom to casein intolerance is bloating in the belly, gas, and I think both constipation and diarrhea.

Yea, I've had the constipation, occassional diarrhea. My belly is bloated and I had expected that to go down when I got off gluten and it didn't. It's not bad because I'm pretty thin, but I notice it. It's the brain fog that gets to me.

This is my second day off it and I'm having the same symptoms as when I got off wheat (not gluten, I was off wheat first by a couple years). I feel like I have the flu -- extreme fatigue, d, and brain fog. I've only really been able to rest because I can't accomplish anything. I'm hoping this eases a bit by tomorrow. I've got to drive back to Indiana for my daughter's freshman orientation at IU.

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. - Kirita posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Recovery from gluten challenge

    2. - annamarie6655 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Airborne Gluten?

    3. - trents replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    4. - Celiac and Salty replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    5. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,239
    • Most Online (within 30 mins)
      7,748

    Chrystal May
    Newest Member
    Chrystal May
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kirita
      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
    • annamarie6655
      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum.    Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains.    HOWEVER, I realized something recently- the last time I got glutened and the most recent time I got glutened, I truly never ate anything with gluten in it. But i did breathe it in.    The first time was a feed barrel for my uncle’s chickens- all of the dust came right up, and most of what was in there was wheat/grains. The second time was after opening a pet food bag and accidentally getting a huge whiff of it.    When this happens, I tend to have more neurological symptoms- specifically involuntary muscle spasms/jerks everywhere. It also seems to cause migraines and anxiety as well. Sometimes, with more airborne exposure, I get GI symptoms, but not every time.    My doctor says he’s never heard of it being an airborne problem, but also said he isn’t well versed in celiac specifics. I don’t have the money for a personal dietician, so I’m doing the best I can.    is there anyone else who has experienced this, or gets similar neurological symptoms? 
    • trents
      I was suffering from PF just previous to being dx with celiac disease about 25 yr. ago but have not been troubled with it since. Not sure what the connection between the two is of if there is one. But I do know it is a very painful condition that takes your breath away when it strikes.
    • Celiac and Salty
      I have dealt with proctalgia fugax on and off for a year now. It feels almost paralyzing during an episode and they have started lasting longer and longer, sometimes 20+ minutes. I was recently diagnosed with celiac disease and wonder if the 2 are related. I did request a prescription for topical nitroglycerin for my PF episodes and that has helped tremendously!
    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
×
×
  • 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.