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

Whey?

MallysMama

Recommended Posts

MallysMama Explorer
MallysMama
Posted

Okay, so my 81 year old grandpa was diagnosed with Celiac (on his deathbed - having a last chance surgery to remove something from his pancreas...and then they went "digging" around to see if anything else was wrong - when they discovered no villi in his intestines). It's nice to know where I got this disease from...I'm no longer the only one in my family with it. Had they just done a simple blood test months and months ago (especially after my mom suggested it) - he could be just fine by now. However, he's still on IV's.... and they might be allowing him to start on liquids soon. So - anyway... my mom calls me today and says that they've told him that Whey contains gluten (comes from barley)?! We're completely flabbergasted! No research I've done proves that these idiot doctors are correct. I'm wondering if any of you know what they're talking about?? Whey, in my knowledge, is a dairy product or derivative. But we don't want to give my grandpa false information that could make him sooo sick again. (I'd actually like him to be able to meet my next baby!!) So, any help - and as soon as possible - is greatly appreciated.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

To the best of my knowledge, whey, is diary durived and it not connected to gluten.

If he is having a problem with dairy, yes that may be an issue for him.

lindalee Enthusiast
lindalee
Posted

The SCDer's eat whey and they are totally no grains. I hope some others can help.

jerseyangel Proficient
jerseyangel
Posted

You are right--whey does not contain gluten--it is from milk.

MallysMama Explorer
MallysMama
Posted
  • Author

Thanks! Now I just need to convince my grandma that the nutrionist they talked too is Wrong! (Easier said than done!) She said that the nutrionist told them that whey can come from either milk or barley. Which is completely stupid! No information I've found says that. I even looked on the Whey Protein Institute's website!! (www.wheyoflife.org) Argh! Stupid people making my grandpa's new diet more complicated than it needs to be. Thanks for the input, though!! I'll pass on the info!

Ursa Major Collaborator
Ursa Major
Posted
Thanks! Now I just need to convince my grandma that the nutrionist they talked too is Wrong! (Easier said than done!) She said that the nutrionist told them that whey can come from either milk or barley. Which is completely stupid! No information I've found says that. I even looked on the Whey Protein Institute's website!! (www.wheyoflife.org) Argh! Stupid people making my grandpa's new diet more complicated than it needs to be. Thanks for the input, though!! I'll pass on the info!

You're right, and there is another incompetent nutritionist in a hospital, of all places. Whey is definitely ALWAYS derived from milk.

But do you know that casein can blunt the villi as well? And also, most celiacs are unable to digest dairy for at least six months after being diagnosed (even if they're not casein intolerant), because the tips of the villi produce an enzyme called lactase, which helps in dairy digestion.

So, since your grandpa is so sick, it would be a very good idea to eliminate all dairy from his diet for several months, before reintroducing it to see if it causes a problem. He may not get well if he has dairy products at this point. In fact, he needs to start out with a simple, non-irritating diet to heal. And dairy is hard to digest at the best of times.

tarnalberry Community Regular
tarnalberry
Posted

Whey can't be "derived from barley"! It's a milk protein! Open Original Shared Link is helpful as well. "They" are smoking something funny over there!

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

Celiac.com Sponsor (A8-M):


MallysMama Explorer
MallysMama
Posted
  • Author

Yeah, I had already checked the wikipedia site and got their definition. I sent all the info to my mom in an email for her to pass on to my grandparents. I let my grandma know about the dairy being hard to digest at first....thinking maybe that's why they told her to keep him off of whey. That wasn't the case... but she knows about the dairy issues now, at least. I plan on making a visit up there sometime this week - so I can hopefully make sure they got the correct info. Thanks for your help... it's good to know that I'm not the only one who thinks that "nutritionist" is crazy!

debmidge Rising Star
debmidge
Posted

One way to get to the bottom of this is to find out the manufacturer of the product and call their support number and ask about gluten and whey....(by I.V. I think you mean liquid nutrition, not the clear saline/sugar solution hospitals give you to keep you hydrated).

Archived

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

Go to topic listing

  • 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. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    2. trents
      - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient. The one test that was ordered...
    3. mamaof7
      - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful...
    4. Dizzyma
      - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me. My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free i...
    5. tiffanygosci
      - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,956
    • Most Online (within 30 mins)
      7,748
    Srowton
    Newest Member
    Srowton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Help understand results

      By trents · Posted

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      Help understand results

      By mamaof7 · Posted

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.