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

Recommended Posts

notme Experienced

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

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

YoloGx Rookie

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

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

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

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

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

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

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

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

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

notme Experienced

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

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

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

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

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

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

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.

  • 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 Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      GI DX celiac despite neg serology and no biopsy

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      17

      My journey is it gluten or fiber?

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      17

      My journey is it gluten or fiber?

    4. - knitty kitty replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      GI DX celiac despite neg serology and no biopsy

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

    • Total Members
      132,747
    • Most Online (within 30 mins)
      7,748

    hampiebee
    Newest Member
    hampiebee
    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

    • knitty kitty
      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent.   People of Mediterranean descent have HLA DQ 7.  People of Asian descent have HLA DQ 9.   There's other Indigenous populations that have other HLA genes that code for Celiac disease.   Are you still having symptoms?   What do you include in your diet?  Are you vegetarian? Are you taking any prescription medication?  Omeprazole?  Metformin?   Do you have anemia?  Thyroid problems? Are you taking any vitamins or herbal supplements?  
    • knitty kitty
      There are eight essential B vitamins.  They are all water soluble.  Any excess of B vitamins is easily excreted by the kidneys.   Thiamine is Vitamin B 1.  Thiamine is safe and nontoxic even in high doses.  Benfotiamine and TTFD are forms of Thiamine that the body can utilize very easily.   The form of Thiamine in the supplements you mentioned is Thiamine Mononitrate, a form that the body does not absorb well and does not utilize well.  Only about thirty percent of the amount on the label is actually absorbed in the small intestine.  Less than that can actually be used by the body.  Manufacturers add thiamine mononitrate to their products because it's cheap and shelf-stable.  Thiamine and other B vitamins break down when exposed to light and heat and over time.  Thiamine Mononitrate is a form that does not break down over time sitting on a shelf waiting for someone to buy them.  What makes Thiamine Mononitrate shelf stable makes it difficult for the body to turn into a useable form.  In fact, it takes more thiamine to turn it into a useable form.   Gastrointestinal Beriberi is a localized shortage of Thiamine in the gastrointestinal tract.  High carbohydrate meals can result in gastrointestinal symptoms of Gastric Beriberi.  Fiber is a type of carbohydrate.  So, high fiber/carbohydrate snacks could trigger Gastric Beriberi.   Since blood tests for Thiamine and other B vitamins are so inaccurate, the World Health Organization recommends trying Thiamine and looking for health improvement because it's safe and nontoxic.  
    • xxnonamexx
      Thanks very interesting I have to see if I should take these 2 vitamins along with my multi and super Vit B complex or if its too much or would hurt me. I don't have any other health issues but would love to see if this improves anything especially to feel stronger build muscle.
    • Roses8721
    • knitty kitty
      How can you be negative for HLA?   What markers did you have here? Curiouser and curiouser...  
×
×
  • 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.