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Way To Go, Today Show :(

notme

By notme
in Coping with Celiac Disease

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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???

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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. <_<

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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.

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