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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      results from 13 day gluten challenge - does this mean I can't have celiac?

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st worst 12 days of my life Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    2. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks. Even at 8000 I felt no noticeable difference. Then after...
    3. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I don't know if I am getting sufficient Omega Threes. I read about phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    4. Scott Adams
      0

      Gluten-Free Cantonese Steamed Fish with Ginger, Scallions, and Sizzling Oil

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      results from 13 day gluten challenge - does this mean I can't have celiac?

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    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

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
×
×
  • 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.