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. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    2. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    3. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    4. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    5. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

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

    • Total Members
      132,831
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • 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.