Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


tom

Member Since 20 Jun 2004
Offline Last Active Feb 13 2014 09:50 AM
-----

#818215 Repost: Bloodwork After Being Gluten Free

Posted by tom on 16 August 2012 - 07:43 PM

Maybe you don't have celiac but the people who stay active on forums are understandably those most affected in the first place, from what I've seen, so you shouldn't place much significance on not being as bad off as many members here.

Almost 50,000 ppl have joined this forum and the majority aren't currently active. I like to think that most of them are out there living healthy lives w/out gluten and just don't need further celiac info or support or whatever originally made them register an acct.

Good Luck w/ the test Peppa :)
  • 4


#815041 Good News Bad News

Posted by tom on 31 July 2012 - 10:05 AM

:) Gotta love a positive attitude! :D
More good news - everyone reading learned about the black seeds.

Is mayo next or what?
  • 1


#814080 Vitacost Gluten Enzyme?!

Posted by tom on 26 July 2012 - 10:37 PM

You are absolutely right, Tom.

I did misread what Chad said and I will apologize to him personally and also, right here.

Sorry, Chad. Please accept my apologies.
I will edit my comment to you.

Tom, I am not dismissing their experiences; not at all. I did say if digestive enzymes do not agree with them, they should not take them.

Please do not misinterpret what I say.

It's certainly not right to claim I misinterpreted when at the time I was replying to your post it still had
"So, if you do not feel well taking them, do not take them.
You are not being CC'ed from them."
as the last 2 lines.

Not only did Chad never say he thought it was cc, but he also never said he was considering taking them any more.

Please don't edit out bits I've replied to.
  • 0


#813944 Losing Hope...

Posted by tom on 26 July 2012 - 11:51 AM

No, hon...an endoscopy will NOT diagnose you....you need to be (1)eating gluten and (2) have a BIOPSY for a celiac DX. but you said you will not do this.
...

The diagnostic *potential* of endoscopy/biopsy (the aversion was to gluten, right? Not biopsy too as phrased) is the same whether the OP reglutens or not. The accuracy is affected but it's not at all the impossibility of "will NOT". Every time someone isn't already great after a month gluten-free, there are, imo, valid comments such as "it takes time for your intestines to heal, the damage didn't happen overnight either".
An endoscopy could be hugely worthwhile despite x weeks gluten-free.

If kswan08 is having a colonoscopy on Aug 16 anyway, an endoscopy should be done at the same time imo. (Isn't the biopsy part a given once celiac is in the picture?)
With long-term GI issues I'd want my GI to take a good long look around. Mine found Barrett's Esophagus and some other .. ..argh don't remember well enough. Point is, I don't know why anyone'd discourage an endoscopy.
  • 0


#813514 Vitacost Gluten Enzyme?!

Posted by tom on 25 July 2012 - 02:00 AM

He never said he thought it was cc.
Why summarily dismiss two ppl's personal experiences w/ a product?
  • 0


#813214 Some gluten-free Bread May Not Be Gluten Free!

Posted by tom on 23 July 2012 - 11:05 PM

I'm not clear on why we are zeroing in on one company, Schar. ...

The original thread title was about Schar. As it was unjustly accusatory, the title was changed by moderators.
  • 1


#812603 Some gluten-free Bread May Not Be Gluten Free!

Posted by tom on 21 July 2012 - 05:46 PM

Wow lotta new comments while I typed so unfuriously.
  • 1


#812600 Some gluten-free Bread May Not Be Gluten Free!

Posted by tom on 21 July 2012 - 05:39 PM

..
I expected the information on the celiac site to be up to the minute accurate and I don't think it is, ...
...

I started researching celiac ~8-10 yrs ago. Many others commenting have long experience as well.

I think your opinion of this forum & this site will change over time. Don't give up on us because of this disagreement over a 1man-society's misguided assertions. (I did prev show he's mixing cc worries w/ zein intolerances/allergies)

CC (cross-contamination) IS a very common topic here. An entire category was created a while back called "Super Sensitives . ..." and they're the ones most affected by cc.
To me that shows that CC is taken very seriously here.

Anything can be CC'd.

Sorry the DH is hitting so hard. There's a big learning curve on what's safe for you specifically. It sucks & it can be hard but it can be done. Eating as simply as possible (low # of ingreds) combined w/ keeping a food/symptom diary is a proven method to get where you need to get.
I don't eat anything w/ a couple inches of ingreds but only because 1 or 2 affect me. Finding the 1 or 2 while eating longlist processed foods approaches 'needle in a haystack' status.

If specific corn chips affected you, you could check w/ fresh corn you husk yourself to elim cc as an unknown. Or another brand of chips. Or organic ones. Or not try any for a while.
Unfortunately, this is often the process new celiacs have to go through. There are several on this forum who are doing it right now (unless I'm seeing new posts on old unrecognized threads)

Read some in the "Coping..." category & "Other Intolerances..." as well as other categories & you'll find ppl you can relate to, i'd bet.

Not that ALL celiacs have the extra food issues, but the ones that do have reason to spend more time online, perhaps skewing some perceptions of how common soy/casein/corn/canola issues are for the average celiac.

I hope you stick around & maybe start a food/symptom diary. There are literally 100s of ppl who post regularly who have either been through it or are going through it and will help in any way they can.
  • 3


#812554 Some gluten-free Bread May Not Be Gluten Free!

Posted by tom on 21 July 2012 - 03:52 PM

This is from National Digestive Diseases Information Clearinghouse, updated January 27, 2012. Is this recent enough for you?

"Some people with celiac disease show no improvement on the gluten-free diet. The most common reason for poor response to the diet is that small amounts of gluten are still being consumed. Hidden sources of gluten include additives such as modified food starch, preservatives, and stabilizers made with wheat. And because many corn and rice products are produced in factories that also manufacture wheat products, they can be contaminated with wheat gluten."

It's recent but it doesn't say corn & rice are harming celiacs. It says corn & rice might get some wheat on 'em.

I actually have a problem w/ corn myself. Not as severe as soy (or, of course wheat/barley/rye gluten) and more like non-organic tomatoes. It can get complicated but it doesn't mean that the average celiac should expect these problems.
Sometimes I have no idea whether GMO is a factor, or pesticides or what. Canola oil makes me dizzy but it's highly GMO so I can't be certain whether original form organic canola would be fine like org tomatoes are fine for me. I mostly decline to run these experiments on myself just to keep from being sick sometimes. Any experiment w/out multiple outcomes is a poorly designed or executed experiment.
None of this makes me think the forum should highlight these possibilities any more than it already does, w/ the well-trafficked category "Other Food Intolerances .. ..".

Imho, an overstressed immune system combined w/ damaged intestines can lead to issues w/ other foods but doesn't make those foods an essential part of the definition of celiac disease in the way that wheat/barley/rye are. (Grammarians feel free to rephrase w/ your "that which"es & such) :lol:
  • 1


#812533 Some gluten-free Bread May Not Be Gluten Free!

Posted by tom on 21 July 2012 - 02:33 PM

Looking through the GFS site I see the July 17 article claiming "gluten-free bread damages celiacs".

A recent study found that patients with celiac disease can react to “gluten free” bread made with maize (corn) protein. Serum IgA was measured against the prolamine in corn. Previous studies have found similar reactions with corn in patients with gluten sensitivity. Source: J. Agric. Food Chem, 2008, 56 (4), pp 1387–1391.


A study from 2008 is called "recent".

There's a Chicken Little aspect to much of what I read on that site. He's totally scaremongering about the 2 distinct usages of the word gluten.

You'd be better off reading less there & more here (or more at other major medical & celiac sites)
  • 4


#812530 Some gluten-free Bread May Not Be Gluten Free!

Posted by tom on 21 July 2012 - 02:03 PM

Below is a blurb from an article by Dr. Manik G. Hiranandani about corn gluten. Dr. H. graduated in medicine from the Armed Forces in Pune India in 1980. He then trained in cardiology and internal medicine at Bombay University. To read the entire article go to:
My link
...

Here is the blurb from Dr. H. about corn gluten:

Types of Gluten allergy

There appear to be 2 types of gluten allergies. ...
...

Celiac & an actual gluten allergy are two different things involving different mechanisms. He's not talking about celiac at all.

This discussion is, at its heart, just a misunderstanding about valid uses of the word gluten. Plant science gluten vs food science gluten.
Corn gluten & rice gluten are valid terms in some circles, but only generate confusion in the celiac world. Really really wish we had different words.
  • 5


#812527 Some gluten-free Bread May Not Be Gluten Free!

Posted by tom on 21 July 2012 - 01:37 PM

...
But if this info is correct, ...
...

That's the thing - it's not.

The terminology is unfortunately context-dependent. In botanical science, grains have the same principal anatomical components. Three are bran, germ & gluten.

In food science the word gluten means ONLY the gluten that's harmful to people like us. It's a pretty ridiculous way to define something, but that's the way it is. Wheat, barley & rye harm every celiac. Rice gluten (botanical definition) & corn gluten don't. It should really be a different word in one case or another.

If that newsletter is freaking out about corn gluten, the author is either too new to know what's what or has motivations beyond providing honest info.
  • 7


#812011 Update....... Confused More Than Ever

Posted by tom on 18 July 2012 - 05:46 PM

Ok I am a person that needs yes or no. Either I have celiac or I don't. Lol

With a necessity for a yes/no, I'd be tempted to shift the question to "either I feel better gluten-free or I don't ".
  • 2


#811534 Misdiagnosed?

Posted by tom on 17 July 2012 - 12:15 AM

...
Today 07.16.12 I went to a new gastroenterologist to seek answers. He asked about my symptoms and right away said "Your celiac panel came back negative, so you don't have Celiac. You have IBS and you need to accept that."
...

IMHO this Dr's a jackass & it's infuriating that this type of Dr isn't rare.
With quotes like these I'm surprised I recently repeatedly have to defend the Drs who wrote "The Gluten Effect" for not being MDs.
MDs who aren't up to speed on Celiac/gluten are all too common.
  • 0


#811533 Validation

Posted by tom on 16 July 2012 - 11:55 PM

Boo! Original GI :angry:
Yay! New Doc! ;)
  • 1