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Casiens - Revisted


SunnyDyRain

Casien  

7 members have voted

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SunnyDyRain Enthusiast

I am just handling This casien thing harder than gluten, I think it's because there is hope I one day will...

I just want to know about your experinces, and if anyone has any info on villi damage due to casiens.


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CarlaB Enthusiast

I didn't take the poll, but wanted to say that I tested positive for casein intolerance, went off it for six months and saw no improvement whatsoever. I went back on it and saw no change for the negative.

I didn't really fit into the criteria for the poll, but wanted to tell you that. Try being casein free for a while, then challenge it to see if you really are.

tarnalberry Community Regular

you can check pubmed for the casein-induced enteropathy studies.

MySuicidalTurtle Enthusiast

I could not stop getting sick from casein after going gluten-free but am a vegan now and avoid it anyway.

marciab Enthusiast

I wasn't tested (I won't go there), but everytime I ate or drank anything with dairy in it my stomach would go into spasm or I would get nauseas. Lactaid did not help ...

Having said that, for some reason I have been able to drink kefir made from organic cow's milk ever since going gluten free. This is really good with frozen fruit ... And a good probiotic.

I recently tested to see if I could handle cheese and I was fine. No pains, no nausea.

I'm not planning on adding it back in all the time though. I've read too much about how bad dairy is for us and I am still trying to heal.

Clear as mud, huh ?? Marcia

pedro Explorer

Hi.

I was hoping for the same, that one day soon I will be able to eat dairy products, but since I started the diet I knew in my heart that I will never can eat dairy products again. I need it confirmation, thats when I called EnteroLabs and they told me what I was suspecting all along.

This diet is for ever.

Best regards to everyone.

aikiducky Apprentice

I've been casein free for a couple years now, and if anything, I'm more sensitive to it (just like with gluten), although my reactions are not as violent any more as they once were (also just like with gluten). I did eat goats cheese up till two weeks ago, but I've stopped that as well for now and I'm planning to reintroduce it in a month or so to see if I react to goats cheese, too. I'm pretty sure I'll be cow milk free for life though.

It's almost harder to avoid casein isn't it? I find it's the combination of avoiding both gluten and casein that makes it very tricky, a lot of gluten free foods still have casein so it limits my choices much more. But hang in there, you really need to give it a good chance before you try to reintroduce.

Pauliina


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SunnyDyRain Enthusiast
I didn't take the poll, but wanted to say that I tested positive for casein intolerance, went off it for six months and saw no improvement whatsoever. I went back on it and saw no change for the negative.

I didn't really fit into the criteria for the poll, but wanted to tell you that. Try being casein free for a while, then challenge it to see if you really are.

I haven't been tested, but I know I react to dairy, pretty much the same way as I react to gluten. I am goin out of my mind trying to do this. I keep getting caisen, even the "non dairy creamer" has dairy. I am trying to find Vegan stuff, but it's not good subtitutes.

Every week or so I seem to slip up and am confirmed again, I still can't eat it.

dlp252 Apprentice

I was tested through Enterolabs, but that merely confirmed what I already knew. I will probably not ever be able to eat dairy regularly. I did buy a very small (6 oz) container of plain (unflavored, unsweetened) goatmilk yogurt last week...I ate half of it one day and half the next. That's it, I don't think I could eat more than that and be okay. Half the container seemed to work okay, but I think if I ate it every day I'd have problems.

jnclelland Contributor
I haven't been tested, but I know I react to dairy, pretty much the same way as I react to gluten. I am goin out of my mind trying to do this. I keep getting caisen, even the "non dairy creamer" has dairy. I am trying to find Vegan stuff, but it's not good subtitutes.

If you can tolerate soy, Silk makes a very good casein-free coffee creamer. I adored it until I realized that soy was causing me problems too! :(

Jeanne

SunnyDyRain Enthusiast
If you can tolerate soy, Silk makes a very good casein-free coffee creamer. I adored it until I realized that soy was causing me problems too! :(

Jeanne

I have been using Silk Soy Milk in my coffee, it's ok, not perfect but passable.

I may buy creamer for work though..

jnclelland Contributor
I have been using Silk Soy Milk in my coffee, it's ok, not perfect but passable.

I may buy creamer for work though..

I never did like milk in my coffee; it HAD to be half and half. But the Silk creamer is a pretty good imitation of half and half, and I really liked it.

Jeanne

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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