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Casein Intolerance...


Rachel--24

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Rachel--24 Collaborator
For one, he claimed the ELISA blood tests are crap and don't work, whereas several people here have had good luck with them (then again, I know very little about the tests, but when people here have used them and a celiac disease book suggests it......makes me wonder).

<{POST_SNAPBACK}>

Actually most doctors are not supportive of ELISA tests. There are no guarantees with the ELISA tests...they are still controversial. They do help some people but I dont think they are foolproof...and they arent helpful to everyone. I had the tests done and I cant say it helped me at all....it really didnt tell me much. I tested negative for all the foods. <_< They also are very expensive.


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Claire Collaborator
I'm so glad we have this thread! I am going in Tuesday to see an allergist to be tested for food and other allergies. We suspect my apartment is making me sicker 9i think there's a mold problem as i CLEARLY feel better when I'm out of it and sick as a dog when I'm in it). My question is, can an allergist test for an intolerance as well as an allergy? I suspect I have a milk allergy (the chronic ear infection link for me) but I'm also wondering about a lactose/casein intolerance. Sometimes, but not always, I get really noxious gas from eating something like parmesan and other times, I'm fine. No clue but I'm glad this thread exists! Beverly

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This may or may not be useful for understanding allergy testing. I was skin tested by an allergist for just about everything known to man. Negative across the board.

I had the Blood Print Test offered by Immuno Labs (FL) and came up with sensitivies to a large number of foods including all grains except rice and oats. I agreed with most of the test but on some things I knew they had to be wrong because they were foods I dislike and have not eaten since childhood. Many allergists do not do these tests.

My naturipathic doctor is opposed to these tests because they turn up so many false negatives. They usually identify the reactive foods correctly but you have no way of sorting out the true readings from the false ones.

I now believe that the stool sample test from Enterolab is the best way to go. They can do this for gluten, casein, wheat, soy, eggs - I think that's all but these are the most common reactive foods. If you know for certain about these you can then self test for other things. Claire

bluelotus Contributor

The nurse called me again today to schedule the lactose test (I have put it off b/c I don't think I want it). I asked her if it tests for casein. Her response: "what?!" then dumb silence. Me: "You know, casein, the milk protein" Her: "I don't know anything about that"

Nice. Real quality professionals I am dealing with here.

And, thanks for the thoughts above, Rachel. I had only gotten the good side from my reading of books and posts here. It wasn't implied anywhere that there were problems. So I appreciate hearing the other side, so to speak.

elisabet Contributor
Well I don't have to worry about any *false* readings with my tests. My IgG delayed-onset tests were negative for ALL foods.  :blink:

I only reacted to mustard and alfalfa (barely).

I had these tests done when I was at my abosolute worst. Not absorbing anything...losing weight...reacting to EVERYTHING. I'm pretty sure I had leaky gut which was causing all the reactions but tests show no real immune response to any foods. Also Enterolab came back negative for casein, yeast and eggs. All IgE true allergy tests have been negative as well. The only thing I've actually tested positive for was gluten. I think my Enterolab casein test may have been positive if I'd still been consuming dairy but I wasnt for a few months.  I scored a 9 on that.

I guess after having IgG, IgE and IgA tests all come back negative theres not much left after that. Most of my *reactions* come after a glutening. Can Leaky Gut cause symptoms even though there is no actual sensitivities?

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you didn t have elevated Ige to casein,while you used diary?

Rachel--24 Collaborator
you didn t have  elevated Ige to casein,while you used diary?

<{POST_SNAPBACK}>

I'd have to look back at the test results to see if "casein" specifically was tested. The results showed no elevated IgG responses to ANY foods tested and I was eating dairy at that time. I did have the Enterolab tests for casein (IgA) and that was negative as well. I scored a 9...a 10 would have been positive. I had been off dairy for a few months before taking that test so I'm not sure if the results were affected by that.

  • 2 years later...
peanut369 Newbie

Hey Guys - I wonder if any of you have looked into avoiding preservatives in addition to gluten/casein? I found that I was having a similar, but not identical, reaction to store-bought gluten free items: coke, cookies, prepared meals (like that yummy stroganoff) and even some gluten-free cereals. Eliminating preservatives has helped a ton, and next is casein because I still haven't got everything under control. I don't wanna! I love my milk! :o:o

??

??

hathor Contributor

I try to avoid a lot of artificial ingredients. It does seem to help.

If it isn't clear in this thread, it is possible to have casein in things OTHER than dairy. You have to read labels and be on the lookout for anything with casein or caseinate listed among the ingredients. Manufacturers like to throw this into soy and rice cheeses, for instance.


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dbmamaz Explorer

Just wanted to jump in this thread w a few personal observations. First of all, i was off milk and wheat as an infant after a food challenge, but there was never any testing. I believed myself to be lactose intolerant most of my life, because I seemed to react better to dairy if it was lactose free or I was taking acidopholous supplement. But then I read that people who are allergic to dairy have an easier time digesting lactose-free dairy . .that kinda suprised me.

So, I quit both dairy and wheat at the same time. I did a test similar to the Elisa (A.L. C.A.T). They are similar but the test I took had a larger selection of foods - i wanted to be tested for everything. Some of the foods I was pretty sure I was reacting to werent on the other tests.

My AL C.A.T (note, if you spell it all together it gets changed in to 'lame advertising' by this website) test came back with only 2 'red' foods, 13 'orange' foods (including RICE!), and 43 or so 'yellow' (mild reaction) foods, plus a mild reaction to gluten, casien and candida.

I am kinda freaked out by how little foods I didnt react to - i guess they tested 175 foods and I reacted to more than 1/3 of them (including the various foods that casien, gluten and yeast pulled out). I am trying to console myself w the fact that there are a lot of false positives in these tests, but I need to eliminate it all before I can do a challenge . . onions, chili peppers, mushrooms, pork, the fish from my fish oil pills!!

I'm still waiting to get back my celiac test (done 6 weeks off gluten) and go to the allergist, because some of the foods i'm sure bother me (tropical fruits, shellfish and cashews) didnt show as reactions on the other test - but if I take those out, plus nightshades too, i'll be eating corn, chicken, turkey and beans, with squash and melons and berries and root veggies and greens .. and thats it!

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    • trents
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
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      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
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    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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