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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.