Jump to content
  • 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 Intolerance...


Rachel--24

Recommended Posts

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.


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



Celiac.com Sponsor (A8-M):



  • Replies 57
  • Created
  • Last Reply
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

<{POST_SNAPBACK}>

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?

<{POST_SNAPBACK}>

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.


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



Celiac.com Sponsor (A8-M):



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!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    4. - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,440
    • Most Online (within 30 mins)
      7,748

    Lillian Steele
    Newest Member
    Lillian Steele
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.