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. - Rebeccaj posted a topic in Coping with Celiac Disease
      0

      Help where to apply for jobs !

    2. - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Reverse Osmosis (RO) Water

    3. - knitty kitty replied to Rosalie P's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Oat &gluten free eczEMA MOISTURIZER

    4. - Scott Adams replied to Rosalie P's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Oat &gluten free eczEMA MOISTURIZER

    5. - Scott Adams replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Reverse Osmosis (RO) Water

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

    • Total Members
      133,504
    • Most Online (within 30 mins)
      7,748

    Brailyn
    Newest Member
    Brailyn
    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

    • Rebeccaj
      Hey guys.  Has anyone ever worked in McDonalds or hungry jacks or kfc with coeliac disease.!? like different packaging to fresh bakery cooked bread? Did they get neurological symptoms.!  Thanks.
    • Known1
      I am honestly not sure.  Initially I was purchasing my RO water via a refill station at the same store for the past several years.  My employer (at the time) also has an RO water filtration system.  Thus while drinking water and coffee at home or work, I was consuming RO water.  I just so happened to switch to a gallon of sealed store bought distilled water at home and instantly felt better.  I know that sounds like an exaggeration, but it is true.  My initial thought was the RO water refill station must have been contaminated, possibly from some sort of cleaning agent. Later I bought completely sealed RO water from a different store.  Again, my stomach started making crazy noises and I felt off.  It took a few days to get through all of the RO water I bought.  I thought it was distilled or spring, but after reading the label a bit closer...nope it was RO water.  Again, as soon as I stopped drinking it my stomach settled and I felt SO much better. I cannot say what it is about RO water that does not agree with me, but there are threads on Reddit and elsewhere on the Internet with plenty of people reporting GI related issues from RO water.  I linked to one in my original post within this thread.  While doing more research, I have discovered that RO water filtration systems should not be used with copper plumbing.  Per Google AI Overview:  Reverse Osmosis (RO) water should not pass through or be stored in copper plumbing because the purified, low-TDS water is highly aggressive and causes corrosion, pitting, and pinhole leaks in copper pipes. RO water leaches copper, resulting in a metallic taste and potential health risks like copper poisoning. Always use polyethylene (plastic) tubing for RO systems. The more I learn about RO water, the more I plan to steer clear.  If it is well know to damage and leach copper...well I'll just leave it at that.
    • knitty kitty
      Welcome to the forum, @Rosalie P, I like tallow balm for my eczema.  Vintage Traditions is my favorite brand.   I find that taking Niacin B3 and Omega Threes also very helpful in healing the skin from the inside out.  Our skin reflects the state of health of our intestines.  One of the first signs I ate something that my intestines didn't like is eczema.  Milk and other dairy products definitely make my skin break out.   Have you been keeping a food journal?  Have you noticed a link between break outs or exacerbation and the food you eat?
    • Scott Adams
      If you’re avoiding both gluten and oats, you’re right — a lot of “eczema” or “moisturizer with oat” products use oat-based ingredients (like colloidal oatmeal) that can be questionable for people with celiac or oat sensitivity unless the oats are certified gluten-free and tolerated. For truly gluten-free and oat-free moisturizers many people with sensitive skin use and recommend: Vanicream Moisturizing Cream — no fragrance, dyes, lanolin, or oats CeraVe Moisturizing Cream or Lotion — gentle, oat-free, widely tolerated Eucerin Advanced Repair Cream — rich but oat-free La Roche-Posay Lipikar Balm AP+ — good for eczema-prone skin and oat-free Aveeno Sensitivity Free (not Aveeno with oatmeal) — check the label carefully Always check ingredients for things like Avena sativa / oat extract, and if you’re extremely sensitive, call the manufacturer to confirm there’s no cross-contamination with oats or gluten. Patch test any new product on a small area first. Plenty of people with eczema and gluten/oat intolerance have found these work well without triggering reactions.
    • Scott Adams
      I wonder what in RO water would cause major issues with your stomach? That seems strange, unless there is an issue with the system itself, like an installation issue, lack of changing the filter for a long time, etc.
×
×
  • 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.