Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Withdrawal?


CGally81

Recommended Posts

CGally81 Enthusiast

About 2 weeks after I went mostly gluten-free (not realizing that malt powder contained gluten, and thus eating something with gluten in it), the withdrawal symptoms set in. For me, they're muscle twitching, chills in my legs and forehead, itchiness, nausea in my throat, and having my chest be so sensitive I can easily feel the buttons on my work shirt as if they were pushing against it.

The symptoms got worse and worse, before eventually getting better and better and mostly disappearing.

Well, in an attempt to see if too much calcium was at the root my headaches, I went casein-free (and multivitamin-free, as it contained calcium) for the past 5 days. And what happens? My withdrawal symptoms are coming back. Same symptoms as with gluten, except now it's casein I cut out.

What I read online seems to indicate that casein withdrawal isn't as bad as gluten withdrawal. For example, one guide for putting autistic children on the Gluten-free Casein-free diet says that casein withdrawal might take 3 weeks, and gluten withdrawal might take 3 months.

Who here had casein withdrawal? How long has it lasted for you? Does it get worse before it gets better? (That wouldn't surprise me, considering my unfun experiences with gluten withdrawal)

I hate having to restrict my diet even more, since I never got glutening symptoms from casein. But I guess I'll have to.

So, what are your experiences with casein withdrawal?


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



Celiac.com Sponsor (A8-M):



RollingAlong Explorer

my spouse had withdrawal symptoms for only about 2 days. I think it started on day 3. Those 2 days were really weird for him - he said he felt like his head wasn't completely attached. By the end of two weeks, he started feeling really good, but it was only those 2 days that were especially hard.

But after that he had a lot of random occasions when he felt like he might have had gluten. (mood and stomach issues). Some of these may have been newbie mistakes, but he was eating very simply and often I could not find anything to even suspect. I think it was just part of healing up.

Now when he makes a gluten mistake, the first 2 weeks seem rough, and he doesn't seem 100% for about 6 weeks.

When he made casein mistakes he would have stomach problems but he never had the huge withdrawal issues again.

I hope you are feeling better.

CGally81 Enthusiast
my spouse had withdrawal symptoms for only about 2 days. I think it started on day 3. Those 2 days were really weird for him - he said he felt like his head wasn't completely attached. By the end of two weeks, he started feeling really good, but it was only those 2 days that were especially hard.

But after that he had a lot of random occasions when he felt like he might have had gluten. (mood and stomach issues). Some of these may have been newbie mistakes, but he was eating very simply and often I could not find anything to even suspect. I think it was just part of healing up.

Now when he makes a gluten mistake, the first 2 weeks seem rough, and he doesn't seem 100% for about 6 weeks.

When he made casein mistakes he would have stomach problems but he never had the huge withdrawal issues again.

I hope you are feeling better.

Since I never got glutening symptoms from casein, I'm reintroducing some dairy into my diet. It already seems to help the hunger slightly. As for why I have casein withdrawal? Could have to do with being autistic, as autistic people respond to gluten and casein even if they're not celiac. Casein never seemed to bother me like gluten did (and does even more now that I have celiac).

Anyway, my withdrawal symptoms were the same as my gluten withdrawal symptoms, only not nearly as strong (my gluten withdrawal symptoms were long lasting and pretty bad at one point, and they stayed really bad for a few weeks, gradually getting better over time).

Nancym Enthusiast

Aw, sorry you're having withdrawal symptoms. I never had any at all, at least that I could identify.

ravenwoodglass Mentor
Since I never got glutening symptoms from casein, I'm reintroducing some dairy into my diet. It already seems to help the hunger slightly. As for why I have casein withdrawal? Could have to do with being autistic, as autistic people respond to gluten and casein even if they're not celiac. Casein never seemed to bother me like gluten did (and does even more now that I have celiac).

Anyway, my withdrawal symptoms were the same as my gluten withdrawal symptoms, only not nearly as strong (my gluten withdrawal symptoms were long lasting and pretty bad at one point, and they stayed really bad for a few weeks, gradually getting better over time).

If your getting withdrawl symptoms then it is a sure sign that you are doing the right thing by eliminating casien. I would not add dairy back. Casien is not always going to make someone feel 'glutened'. The casien could be responsible for your continued elevation in hunger, feeding the withdrawl what it wants might alleviate that but that doesn't mean you should go back on dairy. Try to ride it out, drink lots of fluids and keep busy to keep your mind off it. The withdrawl will end.

RollingAlong Explorer

I agree with ravenwoodglass - having withdrawals from a food is not a good sign and you should eliminate dairy. I actually think casein is even sneakier than gluten.

CGally81 Enthusiast
I agree with ravenwoodglass - having withdrawals from a food is not a good sign and you should eliminate dairy. I actually think casein is even sneakier than gluten.

I'm going to see an endocrinologist next month. I think I'll get tested for casein peptides then. But autistic people have withdrawal from gluten and casein anyway. The gluten withdrawal symptoms I had were identical to things I experienced in my senior year of high school, yet I never suffered glutening symptoms then. At the very least, I'll keep it during the Christmas vacation, eating only yogurts but not other dairy products, and then try reducing it a bit afterwards. If yogurt reduces hunger a bit, it might be the probiotics in it, so I'd find a non-casein probiotic to replace it with.

But I don't want super-high hunger during Christmas vacation, especially since I haven't felt any symptoms from casein at all, and mercury (from excessive fish eating) was discovered to in fact be the cause of my headaches. I'll hold this off a bit. Many people here went gluten-free first, then much later dairy free. Plus, I know a celiac who does not have casein problems, despite having gluten problems so severe that he lost 50 pounds from it.

So... I'll be dairy-lite, then test for a casein problem after Christmas vacation, when I see my endo in January. If I do have one, then I'll just let the hunger spike do its thing and try to somehow survive it, with probiotics and such. I might try to slowly phase dairy out, or yank it all at once and if there's a hunger spike, just carry peanut butter around at all times or something.


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



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,374
    • Most Online (within 30 mins)
      7,748

    RenaRL
    Newest Member
    RenaRL
    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

    • Zuma888
      I didn't ask a doctor about this actually. I did ask several doctors a long time ago and they told me gluten has nothing to do with hashimoto's. One of them told me to do a gluten challenge to test for celiac, but at the time I was in graduate school so couldn't afford to be even more ill than I was. If you have the symptoms, I really don't advise you to do a gluten challenge. It messed me up mentally and physically for months. At the same time, I benefitted from doing the challenge in the sense that it convinced me that all my symptoms were truly from gluten - even stuff like insomnia! So now I am terrified to eat gluten, whereas before I would have a little once in a while and not notice anything dramatic. 
    • Winnie-Ther-Pooh
      I am in a similar situation where I can't feasibly do a gluten challenge but have all the symptoms and I have 2 celiac genes. I'm curious if your doctor advised you to eat as if you had a diagnosis or if they were more dismissive about it. 
    • Zuma888
      Negative, although I had most of the symptoms of celiac disease. I now eat as if I had a diagnosis.
    • Winnie-Ther-Pooh
    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
×
×
  • Create New...