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

By CarlaB
in Related Issues & Disorders

Recommended Posts

CarlaB Enthusiast
CarlaB
Posted

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
Rachel--24
Posted
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
AndreaB
Posted

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
CarlaB
Posted
  • Author

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
AndreaB
Posted
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
CarlaB
Posted
  • Author

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

flagbabyds Collaborator
flagbabyds
Posted

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
CarlaB
Posted
  • Author
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
flagbabyds
Posted

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
Mango04
Posted
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
Rachel--24
Posted
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
eKatherine
Posted

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

Nancym Enthusiast
Nancym
Posted

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
CarlaB
Posted
  • Author
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.

Go to topic listing

  • 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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? 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.