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

Way To Go, Today Show :(

notme

By notme
in Coping with Celiac Disease

Recommended Posts

notme Experienced
notme
Posted

just reported that if a person has celiac, it may be possible to re-introduce wheat after 'awhile'!! is this true in any way, shape or form???

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

Celiac.com Sponsor (A8-M):


kayo Explorer
kayo
Posted

Not true in any shape. A person with celiac has to remain gluten free for life.

YoloGx Rookie
YoloGx
Posted

Not true in any shape. A person with celiac has to remain gluten free for life.

It is unfortunately however what people of an older generation did believe. Thus I was re-introduced to gluten at age 4. I had different symptoms so my gluten reactions went unrecognized until many years later when I (in various stages) finally figured out what was going on.

Thus also my mother believes she got over it too at age 20--even though it messed with her mind, mood, concentration, joints, eyes, and eventually skin--she just didn't and doesn't recognize it as such.

I have met other older generation folks who strongly believe that too--and there they are with their humped backs, digestive difficulties, flaking skin, joint problems, lack of clarity etc. etc.

Googles Community Regular
Googles
Posted

I have met other older generation folks who strongly believe that too--and there they are with their humped backs, digestive difficulties, flaking skin, joint problems, lack of clarity etc. etc.

Is flaking skin from Celiac? I have flaking skin. I hate it. I'm gluten free (for about a year) but my flaking skin hasn't changed. Is there something to treat it?

Lisa Mentor
Lisa
Posted

just reported that if a person has celiac, it may be possible to re-introduce wheat after 'awhile'!! is this true in any way, shape or form???

I don't think that there is enough research on that. The doctor (on the Today show), said that re-introduction of wheat may be possible in very small quantities, after healing. That may be in conjunction with the 20ppm of gluten tolerated for MOST people with Celiac to consume. (Which soon will be the standard reference range in the US for labeling a product "gluten free".)

The general consensus of this forum is zero tolerance. I too have followed that advise and have given it often.

Every person with Celiac Disease is different. After over five years gluten free, I can now consume small amounts, on infrequent occasions and be totally symptom free...and I know my symptoms, and am thoroughly aware of hidden/silent damage. I consider myself in remission. I would never recommend that a fellow person with Celiac to consume gluten. I am just stating my personal experience. :)

notme Experienced
notme
Posted
  • Author

Not true in any shape. A person with celiac has to remain gluten free for life.

o my gosh, when she said that, my jaw dropped! half the battle with dealing with this (for me, so far) is educating my family and people around me that this is NOT something that is ever going to change. I. can't. eat. gluten. period, end of story. for a national news program to throw such a statement out to the public sets us all back! in a matter of 5 minutes. she also mentioned the gluten-free fad.

and to think, I just told my kids I was buying locking mayonnaise jars if they kept sticking their gluteny knives back in the mayo...

so instead of looking careful, I can be considered anal when I'm being particular about what I eat. thank you, dr. nancy snyderman. :(

heatherjane Contributor
heatherjane
Posted

so instead of looking careful, I can be considered anal when I'm being particular about what I eat. thank you, dr. nancy snyderman. :(

I know... really helps our cause, doesn't it. <_<

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Actually there are some people who desensitize. When I went to a celiac conference this spring one of the speakers mentioned it. Here is a case study of someone who was gluten-free for 10 years, gradually introduced gluten, and was able to eat wheat again with no damage and no antibodies.

Open Original Shared Link

That paper that was all over the news about a "celiac vaccine" was based on this idea.

Lisa Mentor
Lisa
Posted

Actually there are some people who desensitize. When I went to a celiac conference this spring one of the speakers mentioned it. Here is a case study of someone who was gluten-free for 10 years, gradually introduced gluten, and was able to eat wheat again with no damage and no antibodies.

Open Original Shared Link

That paper that was all over the news about a "celiac vaccine" was based on this idea.

Interesting, thanks.

TrillumHunter Enthusiast
TrillumHunter
Posted

That is very interesting, but not something to be done without supervision. This patient had controlled amounts introduced and was monitored by endoscopy and blood work--not by her subjective reports. No one should return to gluten without medical supervision as there can be intestinal damage without symptoms.

This is what I will be saying in my email to the Today Show. ;)

srall Contributor
srall
Posted

I'm so thankful for the "gluten-free" fad. It literally saved my life.

notme Experienced
notme
Posted
  • Author

That is very interesting, but not something to be done without supervision. This patient had controlled amounts introduced and was monitored by endoscopy and blood work--not by her subjective reports. No one should return to gluten without medical supervision as there can be intestinal damage without symptoms.

This is what I will be saying in my email to the Today Show. ;)

thank you :) I am very new to all this so I didn't feel comfortable writing to them. I thought I might mess up my facts as I am still learning.

notme Experienced
notme
Posted
  • Author

saturday was my husband's family reunion. I spent the better part of the day explaining why I couldn't eat anything except what I brought (which I brought enough for everybody of everything) also going over every dish and telling people what was in it that I couldn't eat and the rest of the time having people come up to me and say 'try this and see if it makes you sick' (???????!!! gee, thanx!) I feel somewhat, I don't know, discredited??? I swear if people knew what I felt like before I started gluten-free diet I know they would be more sensitive. so, when that show said they were doing a segment that included celiac I was like 'allll riiight!' just to be let down. sorry to rant... arghhhhhh!!!!

arlene

Skylark Collaborator
Skylark
Posted

That is very interesting, but not something to be done without supervision. This patient had controlled amounts introduced and was monitored by endoscopy and blood work--not by her subjective reports. No one should return to gluten without medical supervision as there can be intestinal damage without symptoms.

This is what I will be saying in my email to the Today Show. ;)

Sounds great. I totally agree that celiacs should not be encouraged to go off the diet on their own.

Arlene, I totally know how you feel. Sometimes this diet is a totally unwanted hobby.

notme Experienced
notme
Posted
  • Author

I'm so thankful for the "gluten-free" fad. It literally saved my life.

well , then, that's a good thing :) I was dragged (kicking and screaming) to my senses lol

notme Experienced
notme
Posted
  • Author

Sounds great. I totally agree that celiacs should not be encouraged to go off the diet on their own.

Arlene, I totally know how you feel. Sometimes this diet is a totally unwanted hobby.

thanx, skylark - haha I was the 'party game' - I totally kept my cool, though. I credit that to my diet *wink* I'm also much calmer and sleeping better :) I sure hope nobody was discouraged by that report.

bincongo Contributor
bincongo
Posted

I normally don't watch the Today Show because I don't like where they stand on issues but I was bored and watched the other day. I was very disappointed in Dr Sniderman saying that sometime gluten can be reintroduced. Maybe she was talking about wheat allergies and not Celiac but it shouldn't have been put out there in my opinion. It does more harm than good for all of us.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Ooooh that makes me so mad. I wonder if the wheat industry sponsored that "study." We all know that the tests can give false negatives. How often are they testing? We all know you have to eat a boatload of gluten to challenge it and test positive. So if they are just eating small amounts they are doing damage but not enough to show up on the crap tests.

And even if it's possible it's RARE and really shouldn't even be discussed because 99.9999% of celiacs need to avoid gluten. Forever. Period. Amen.

She is irresponsible on so many levels.

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
      13

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

      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say? do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did it take to get a diagnosis? if you are legally blind there are adaptive devices that will help ...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

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

      @catnapt, I apologize. Obviously I've confused you with someone else. I have vision problems due to undiagnosed Celiac complications. Being legally blind, y'all look the same from here. You still have not said which new medication you started taking. Parathyroid disorders can affect antibody production. Bone Loss Correlated with Parathyroid...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

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

      during the gluten challenge I did not consume any wheat germ the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least. no anemia however the endo who ordered...
    4. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

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

      @catnapt, I'm sorry you're having such a rough time. How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them. Do you pressure cook your beans? Were you pressure cooking your wheat germ? What drugs are you taking? Some immunosuppressive drugs affect IgA production. Do...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      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 🤔
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Helen1984
    Newest Member
    Helen1984
    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

      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • 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 🤔
×
×
  • 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.