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CGally81

Casein Withdrawal?

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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?


Born 1981. Is also autistic - officially diagnosed.

Started having fructose-related problems in late 2008.

Started noticing gluten-related symptoms around March 2009.

Discovered the problem and went (mostly) gluten-free in early August 2009. Promptly became hungry all the time.

I can tolerate fructose again now.

Went dairy-lite in mid December 2009, then casein-free in early January 2010. Hunger shot up again twice.

Hunger apparently mostly normal in mid February 2010.

Started taking fish oil in July 2010, then got new symptoms. Got different new symptoms when I stopped, and hunger shot up AGAIN.

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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.

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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).


Born 1981. Is also autistic - officially diagnosed.

Started having fructose-related problems in late 2008.

Started noticing gluten-related symptoms around March 2009.

Discovered the problem and went (mostly) gluten-free in early August 2009. Promptly became hungry all the time.

I can tolerate fructose again now.

Went dairy-lite in mid December 2009, then casein-free in early January 2010. Hunger shot up again twice.

Hunger apparently mostly normal in mid February 2010.

Started taking fish oil in July 2010, then got new symptoms. Got different new symptoms when I stopped, and hunger shot up AGAIN.

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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.


Born 1981. Is also autistic - officially diagnosed.

Started having fructose-related problems in late 2008.

Started noticing gluten-related symptoms around March 2009.

Discovered the problem and went (mostly) gluten-free in early August 2009. Promptly became hungry all the time.

I can tolerate fructose again now.

Went dairy-lite in mid December 2009, then casein-free in early January 2010. Hunger shot up again twice.

Hunger apparently mostly normal in mid February 2010.

Started taking fish oil in July 2010, then got new symptoms. Got different new symptoms when I stopped, and hunger shot up AGAIN.

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