Contamination Anxiety- Help!

[beth01]

I have a feeling that those that think you don't need to be "anal" about cross contamination are the ones that haven't been sick their whole lives and haven't had to wait for a diagnosis and don't have tons of other medical issues that have stemmed from undiagnosed celiac. When you live your whole life like that, you welcome any change no matter how drastic is seems.

 

I frankly have been very anal about cross contamination.  I am sick of the brain fog, sick of the stomach aches, sick of the joint pain, sick of the muscle aches, sick of the nerve damage that affects my whole body from head to toe.  But I guess if you haven't had to live with all that, having a few beers and some soy sauce is nothing. I myself would rather stick a hot needle in my eye than eat one crumb of gluten, as I sit here looking like I am 24 months pregnant from all the bloating and D of getting CC'd by my boyfriend forgetting to brush his teeth ( he feels just awful, if I hear " I'm sorry" one more time....) and not looking forward to the next seven days or more.  Took me 7 days to recover from the last glutening, hopefully this one won't take as long.

[Redbard52]

beth01:

 

I am sorry to hear that you have had so many issues with gluten.  I fully support your right to be "anal" about gluten.

 

(FYI, you are right in that I was only diagnosed 2 years ago, so my time dealing with celiac disease has been relatively short.)

 

I am only advocating my approach for those that are not extremely sensitive and find that trace amounts of gluten do not impact their daily life.  They do still need to monitor their consumption of items that potentially contain gluten - even at 20 ppm, too much quantity can reach damaging levels.

 

Redbeard52

[kareng]

I don't think the study or the quote below were meant to mean that you should go out and consume gluten up to a certain level on purpose.  I think it was meant to re-assure people that a tiny inadvertent amount won't bother most Celiacs.  Because we might be getting a tiny amount at any time, we shouldn't go out looking for trouble by consuming things with known gluten - like a beer or a wheat based soy sauce.  

 

Open Original Shared Link

 

Is it possible to completely eliminate gluten from my diet?

Celiacs must be aware that trace amounts of gluten (remaining gluten residual, cross-contamination, gluten in naturally gluten-free products) will be practically impossible to avoid. A safe limit of intake for most celiacs is less than 100mg per day, though some do react with as little as 10mg.

 

 

 

Open Original Shared Link

 

 

 

A lifetime commitment

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms.

[notme]

I fully support your right to be "anal" about gluten.

hello, friend.  you seem to be obsessed with the buttholious.

 

there are people on here who will get really sick from drinking regular beer and soy sauce made of wheat.  if you are too weak or unwise enough to resist these things, please do not try to encourage others to engage in things that will hurt them.  i am thinking that since you are still ingesting gluten regularly that you haven't experienced the clarity of mind that comes with a celiac completely removing gluten from their diet.  maybe you should try it

[Redbard52]

notme!:  My references to "anal" used the same language as the original posters - I was only using the language they had initiated.  And I have repeatedly stated that people that react with symptoms to minute amounts of gluten should not do what I do.

 

I have been told that I cannot suggest that anyone can intentionally ingest even trace amounts of gluten on this forum (even though it is not explicitly stated in the Board Rules Policy).  But I can post legitimate research.  Please refer to the following research paper:

 

"A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease.

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Open Original Shared Link

• 1Center For Celiac Research, University of Maryland School of Medicine, Baltimore, MD 21201, USA.

Conclusions: The ingestion of contaminating gluten should be kept lower than 50 mg/d in the treatment of celiac disease.

Comment in

• Open Original Shared Link [Am J Clin Nutr. 2007]"

 

 

This paper concludes that 50 mg of gluten can damage your intestines but 20 mg of gluten did not show damage in the research.  (Note that the participants ingested gluten intentionally as part of the research project.)  Draw your own conclusions.

 

Redbeard52 

[notme]

This paper concludes that 50 mg of gluten can damage your intestines but 20 mg of gluten did not show damage in the research.  (Note that the participants ingested gluten intentionally as part of the research project.)  Draw your own conclusions.

 

Redbeard52 

it also says some had a relapse....    

 

to argue over 20 mg of gluten is kind of hey have one bite of pizza?  i guess whatever floats your boat - it wasn't a long term study, right.  so, that's what you are:  a living, long term study?   report back in 10 years, i suppose.  you must have been diagnosed for a reason.

[beth01]

What most of us don't understand is that a diagnosed celiac would intentionally ingest gluten.  Would you intentionally ingest poison?  That is what the vast majority of us don't understand.  I spent 37 years of my life sick with no known cause from the doctors until three months ago.  I have so many unresolved health problems stemming from misdiagnosis for 37 years, and I am not the only one. Some of those symptoms may never go away and they happen to be damn painful.  This is a diagnosis for life, until and if they come up with something that will block the autoimmune response that happens when we ingest gluten. Some patients may be more tolerant of trace amounts of gluten, but no medical doctor in their right mind is going to suggest going for it even if you don't have a response. You should not be ingesting gluten no matter what, if you react to it or not.  It's common sense.

 

That's my story and I'm sticking to it! 

[kareng]

notme!:  My references to "anal" used the same language as the original posters - I was only using the language they had initiated.  And I have repeatedly stated that people that react with symptoms to minute amounts of gluten should not do what I do.

 

I have been told that I cannot suggest that anyone can intentionally ingest even trace amounts of gluten on this forum (even though it is not explicitly stated in the Board Rules Policy).  But I can post legitimate research.  Please refer to the following research paper:

 

"A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease.

Open Original Shared Link1, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link,Open Original Shared Link, Open Original Shared Link.

Open Original Shared Link

• 1Center For Celiac Research, University of Maryland School of Medicine, Baltimore, MD 21201, USA.

Conclusions: The ingestion of contaminating gluten should be kept lower than 50 mg/d in the treatment of celiac disease.

Comment in

• Open Original Shared Link [Am J Clin Nutr. 2007]"

 

 

This paper concludes that 50 mg of gluten can damage your intestines but 20 mg of gluten did not show damage in the research.  (Note that the participants ingested gluten intentionally as part of the research project.)  Draw your own conclusions.

 

Redbeard52 

 

 

 

If your follow-up tests are all negative, I guess you are doing OK.  

 

Like I said before, that test wasn't done to say "Hey Celiacs!  You can cheat everyday."  I think it was one of the ones done to try to see if a 20ppm standard would be safe for most Celiacs.  When I heard them talk about that study, they never once suggested it was so people could cheat on their diet.  

 

There are issues with tests for gluten in beer, so I don't think we can really know how much gluten are in them from the barley at this point.

[Redbard52]

I am just reporting what works for me - as I said, draw your own conclusions.  I do not eat food known to contain more than 20 ppm gluten.

 

notme!: a bite of "normal" pizza would likely be more than 20 mg of gluten!!  I make my own gluten free pizza.

 

beth01:  I regularly and intentionally ingest poison - drinking water, food from the grocery store, etc.  Food is rarely "pure and clean".  Ask your local water department what trace amounts of various chemicals they allow.

[notme]

 

This paper concludes that 50 mg of gluten can damage your intestines but 20 mg of gluten did not show damage in the research.  (Note that the participants ingested gluten intentionally as part of the research project.)  Draw your own conclusions.

 

Redbeard52 

quoting you, dude.  ok, so, not even enough gluten to be semi-enjoyable.   so, the point is..........?

[beth01]

glutendude.com/alcohol/is-corona-gluten-free

 

This guy know his stuff.  Has very valid points. Like many of the gals said along with glutendude, you say it's safe even though you don't know for a fact it is, someone reads only your post when doing a search, they then think it's safe ( hey, this dude on celiac.com said it was), then others follow. All from one piece of bad information. Like Karen said, testing for gluten in beer is not an exact science, it's very controversial.

[LauraTX]

Open Original Shared Link

 

There is a clickable link for the less tech savvy of our readers.  It is a good read.  Thanks for pointing us to it, Beth!

[Redbard52]

So "glutendude" is considered to be a "legitimate source"??  Ramblings about gluten testing of beer without any new facts?

 

I would guess that many people on this forum with celiac disease eat foods labeled "Gluten Free".  So here is my rambling...

 

 

I have celiac disease, so I eat foods labeled "Gluten Free".

 

But Gluten Free only means "less than 20 ppm gluten".

 

So I may be ingesting 19 ppm gluten!

 

But the FDA says it is safe for me to eat foods with 20 ppm gluten?

 

But others tell me that I should not consume "any" gluten.

 

I'm so confused!!

 

 

Redbeard52

[kareng]

So "glutendude" is considered to be a "legitimate source"??  Ramblings about gluten testing of beer without any new facts?

 

I would guess that many people on this forum with celiac disease eat foods labeled "Gluten Free".  So here is my rambling...

 

 

I have celiac disease, so I eat foods labeled "Gluten Free".

 

But Gluten Free only means "less than 20 ppm gluten".

 

So I may be ingesting 19 ppm gluten!

 

But the FDA says it is safe for me to eat foods with 20 ppm gluten?

 

But others tell me that I should not consume "any" gluten.

 

I'm so confused!!

 

 

Redbeard52

 

 

This seems like deja vu.  Seems like we have had these same comments before.....  

 

Eating gluten-free and accidental gluten are not the same as telling people they can eat things with gluten just because it didn't bother you.  

[GottaSki]

Corona may have less gluten...but still has gluten...nothing scientific, but I was not diagnosed until age 43 by which time I had had a few beers in my life.

 

I never liked any beer -- made me bloat like crazy -- interestingly when camping in baja during my late teens and twenties...we only drank real Corona...the stuff you bought next to the water stores in Baja...at that age when presented with buying drinking water or beer for nearly the same price, well you get the idea -- we all survived on cases of corona or tecate rather than buying bottled water while camping in Mexico.

 

Here is the interesting part -- when back in the states I'd order Corona or Pacifico and bloat -- different manufacturing plant -- different reaction.

 

As I said, nothing scientific about it since I didn't learn the words Celiac or Gluten until a couple of decades later

 

If you are diagnosed with Celiac Disease...it is simple.  Avoid all gluten, regardless of reaction.

[Redbard52]

I agree with kareng: it seems that I keep seeing the same comments as before.  I will not respond any more to comments that say little more than "your'e wrong, we're right" unless accompanied by legitimate factual sources.

 

Let's return this thread to the questions raised by Afitgirl, which is what I was originally responding to.

[GottaSki]

I agree with kareng: it seems that I keep seeing the same comments as before.  I will not respond any more to comments that say little more than "your'e wrong, we're right" unless accompanied by legitimate factual sources.

 

Let's return this thread to the questions raised by Afitgirl, which is what I was originally responding to.

 

That is a great idea