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. - Aretaeus Cappadocia commented on Scott Adams's article in Spring 2026 Issue
      1

      How Social Media Algorithms Are Fueling Gluten Anxiety: TikTok, Reddit, and Instagram Trends

    2. - Aretaeus Cappadocia commented on Scott Adams's article in Spring 2026 Issue
      4

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

    3. - Scott Adams replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Test interpretations

    4. - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Test interpretations

    5. - suek54 replied to Kayla S's topic in Dermatitis Herpetiformis
      4

      Need advice for some relief!

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,658
    • Most Online (within 30 mins)
      7,748

    Pope rome
    Newest Member
    Pope rome
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
×
×
  • 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.