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Casein Withdrawal - When Will It Be Over?!
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Hi all. I recently had a positive IgG test for Casein so am taking this out of my diet - which would make sense as over the last year I had added it back in after coming off gluten and amongst other things I've had weight gain (crazy!), water retention, hot sweats, itching, wind, constipation etc. Now I'm off it the wind, sweating and constipation are resolving pretty quickly but I am itching like mad particularly in the afternoons after a busy day. I've tried liver herbs to help with the detox but they aren't doing much. Also I wondered if anyone knew when the water would start to come off. I have bad swelling in my lower legs by the end of the day and have also been treated for adrenal fatigue (I suppose from having eaten something for some time that my body didn't like). Any tips and stories would be greatly welcome. I know not directly about gluten but I know a lot of you will also have this issue with milk/casein because of the celiac. Thanks!

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My casein symptoms involve a dry mouth and possibly a low grade fever, or maybe decrease in body temperature. I've only gained weight since being gluten and casein free, despite already being obese. I've never suffered from gluten withdrawal or dairy withdrawal that other people talk about.

I have never heard of IgG tests for anything beyond gluten. Who did this test and why is it positive to casein and not, for instance, gluten? For instance, when I asked my GI about whether I could get tested to see if I had an issue with dairy beyond lactose (like casein or whey), he said it wasn't really done and that my IgA (yeah, I know that's not IgG) was most very, very likely elevated due to gluten. With a confirmation biopsy, there's no question that I'm a celiac.

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Hey Cavernio. thanks for your reply. things are already starting to get better. I'm loosing that feeling like I have water oozing from every pore and the water weight is starting to come off too. Tummy still a bit dodgy though and ear still ringing but I suppose it's going to take a while to get everything back to balance. The gluten didn't show on my IgG because I stopped eating it over a year and a half ago - so it wouldn't show up because all the IgG storms with the markers for gluten will have gone away. Eggs and soya didn't show for the same reason - I stopped eating them about 4 months ago. But my acupuncturist can feel in my pulse that they and the gluten are bad for me. Perhaps in a year or two she won't feel that reaction anymore because I had zero of any of them in my system. I think the moral of the story for me is - eat clean, eat healthy and don't ever have any proteins that remotely look or behave like gluten... eggs, casein, soy are all very similar. Makes eating out a challenge! I'm always opting for steak and plain boiled potatoes and peas! Thank goodness for olive oil and balsamic!

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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