Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Cassin Intolerance?

VydorScope

Recommended Posts

VydorScope Proficient
VydorScope
Posted

Does there exist a test for Cassin Intolerence? I know theres one for lactose, but what about Cassin?

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

Celiac.com Sponsor (A8-M):


Kasey'sMom Enthusiast
Kasey'sMom
Posted

A couple of months ago I did the YORK panel. They've redone the panels and have included casein in the the "Standard 96-Food IgG ELISA Panel." They have also started testing for Yogurt, Goat Milk, Cheddar Chesse, Cottage Cheese, Mozzarella Cheese, and Whey. I was suprised to find I didn't test positive. I geuss my problem must be lactose.

I wish they would have broken down as these indv. items when my dd was test this summer but at that time that just tested for cows milk as a whole. We will probably have her retested sometime next year.

:)

StrongerToday Enthusiast
StrongerToday
Posted

Great Smokies Labs will also break down many foods for sensitivity testing including casein, cheese, milk, goats milk, etc.

Emme999 Enthusiast
Emme999
Posted

I had the ELISA testing with US BioTek labs. The dairy section tested me for the following allergies (individually): Casein, Cheddar Cheese, Cottage Cheese, Mozzarella Cheese, Whey, Milk, Goat Milk and Yogurt.

I was off the chart on all of 'em! (Talk about an overachiever ;))

They can guide you to a doctor in your area that uses this laboratory if you go to their website. Good luck!

- Michelle :wub:

jenvan Collaborator
jenvan
Posted

Great plains also has casein and several forms of dairy on its intolerance tests as well. I was off the charts :)

VydorScope Proficient
VydorScope
Posted
  • Author

Okay.. great answers all! but can any of you provide a link? :D

jenvan Collaborator
jenvan
Posted

here is Great Plains Lab: Open Original Shared Link

here is list of tests, you can get descriptions of what each tests: Open Original Shared Link

i choose great plains b/c i could bill my insurance for it and it didn't cost me much at all. they have an allergy specialist/biochemist you can talk to on the phone also about results etc.

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

Celiac.com Sponsor (A8-M):


VydorScope Proficient
VydorScope
Posted
  • Author
here is Great Plains Lab: Open Original Shared Link

here is list of tests, you can get descriptions of what each tests: Open Original Shared Link

i choose great plains b/c i could bill my insurance for it and it didn't cost me much at all. they have an allergy specialist/biochemist you can talk to on the phone also about results etc.

Cool that one specifly has a means to bill BC/BS which is what i have :) THANKS!!!!! Now I just need to get my doc to prescribe it some how

jenvan Collaborator
jenvan
Posted

I basically told my doctor I wanted to do it :) He signed the form, they took my blood at the dr.s office and sent the package for me. If you order the tests, you need only call to do so first, they will send it to your house. You don't need drs signature till you send the labs in.

VydorScope Proficient
VydorScope
Posted
  • Author
I basically told my doctor I wanted to do it :) He signed the form, they took my blood at the dr.s office and sent the package for me. If you order the tests, you need only call to do so first, they will send it to your house. You don't need drs signature till you send the labs in.

I ordered the test kit, but cant find on thier site hte form? Is it in the kit?

jenvan Collaborator
jenvan
Posted

the kit comes with several forms you'll need to fill out...and one of those your doc will sign.

darkangel Rookie
darkangel
Posted

I had the ELISA tests run and it said I didn't react to anything but paprika and some obscure mold. :blink: Yet, I know from listening to my body I have very strong reactions to gluten and casein. It's frustrating, but I've found the tests aren't helpful for me. I never understood why, but I found this quote...

The only way to be absolutely sure of the diagnosis is to follow a program of elimination and provocation. Blood and skin testing may sometimes help, but they are expensive and are not reliable to diagnose delayed-onset food allergies or chemical sensitivities. Although some such tests are marketed by clinics and laboratories, I have found the rate of false positive and false negative results to approach 50%. Even with testing, it is still necessary to eliminate all (or most of) the offending foods for 30 days or more to confirm the results. Then to provoke symptoms by adding them back. It would be nice if there were an easier method. But I have not found one.

Open Original Shared Link

I've also been told that a large percentage of folks that have problems with gluten also have problems with casein.

VydorScope Proficient
VydorScope
Posted
  • Author
the kit comes with several forms you'll need to fill out...and one of those your doc will sign.

MOst Excellent. Site says 2-5days for delviery. Once that arrives I'll stop by my docs and see if i can get them to sign it. Worht a $20 copay if they will do it thats for sure! :D

bluelotus Contributor
bluelotus
Posted
I had the ELISA tests run and it said I didn't react to anything but paprika and some obscure mold. :blink: Yet, I know from listening to my body I have very strong reactions to gluten and casein. It's frustrating, but I've found the tests aren't helpful for me. I never understood why, but I found this quote...

Open Original Shared Link

I've also been told that a large percentage of folks that have problems with gluten also have problems with casein.

My doctor basically told me that the ELISA tests don't work (well, anyway), so he tried to steer me clear of them. Still haven't gotten any done, but I guess there are people out there that might argue for your intolerance to gluten, etc. since the tests don't seem to work for everyone. Who knows, certain things work for certain people. Best thing to do is to take everything with a grain of salt and just listen to your body. Vydorscope, good luck with the test!

Emme999 Enthusiast
Emme999
Posted
My doctor basically told me that the ELISA tests don't work (well, anyway), so he tried to steer me clear of them.

My (conventional) allergy doctor sent me away with a card for a psychologist :P

Here are some quotes from The Encyclopedia of Natural Medicine (Michael Murray, ND):

"The skin-prick test or skin-scratch test commonly employed by many allergists only tests for IgE mediated allergies. Since only about ten to fifteen percent of all food allergies are mediated by IgE, this test is of little value in diagnosing most food allergies."

also -

"Most nutritionally oriented physicians now employ blood tests to diagnose food allergies. Despite a tremendous amount of scientific support, for some reason the diagnosis of food allergy and blood testing is still somewhat controversial in conventional medical settings. ... A variety of blood tests is available to physicians, with the ELISA (enzyme-linked immunosorbent assay) test appearing to be the best and most popular laboratory method currently available (and reasonably priced). This test can measure IgE, IgG, IgG4 and IgA antibodies, therefore identifying both the immediate and delayed allergic reactions. ... One of the key advantages of the ELISA over other laboratory methods is its ability to measure IgG4 antibodies. This subclass of antibody was initially thought to act as a blocking antibody, thereby exerting protective effects against allergy. However, it now appears that IgG4 antibodies are actually involved in producing allergic symptoms."

Anyway - worked for me ;)

- Michelle :wub:

P.S. Note that I had a *very* LOW reaction to gluten containing grains in this test - So, it will not pick up celiac disease, since that's not an allergy ;) (But you guys already knew that :rolleyes: )

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,393
    • Most Online (within 30 mins)
      7,748
    Caroline Cox
    Newest Member
    Caroline Cox
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • NavyMom
      I’m terrified it’s too late for me😭

      By NavyMom · Posted

      Hi CathiJean, Wipe those tears my friend.  Finding out that you have celiac just gave you the cheat code on how to start feeling better!  It may feel like a loss right now, but honestly within 6 months you will start feeling better.  Within a year you will look back and wonder how in the world did I survive feeling like that for what feels like a lifetime?  You mentioned 15 years, that's about how long I have been really ill as well.  I had told every doctor I saw that I kept getting sick, infections, hair loss, joint pain, etc. and nobody would listen to me until I turned 45.  I went in for a colonoscopy and the doc says how often do you have bowel movements and I said usually between 10-15 times a day.  Suddenly I had someone actually listen to me and the testing began.  What I can tell you is use this forum, talk to peers, read everything you can about how to gluten-free your kitchen, encourage your family to participate in your journey (trust me they love you enough to make the effort), how to order food in restaurants, and how to avoid cross contamination.  Accept that you will make mistakes and allow yourself grace as you implement your new normal and have a clear understanding that going gluten free will begin healing your body in ways that you will not even begin to understand until you actually do it.  So, have faith that the nutrient deficiencies that you are probably experiencing right now can be corrected and you are on a bright path to feeling SO much better.  Think about how incredible your mom journey is about to become as you begin to feel better!!  Your kids are going to be amazed at your energy levels, ability to play and go do stuff...you are leveling up knowing that you have Celiac.  Knowing gives you power my friend, harness it and have gratitude that it was discovered...even if the docs missed it - you know now and keep moving forward.  You got this!! 
    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
×
×
  • Create New...