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aedixon

Can You Help A Newbie With Gluten Labeling?

  

10 members have voted

  1. 1. I have Celiac and I can eat foods marked 20ppm or less:

    • Yes.
      3
    • Never.
      3
    • Sometimes.
      4


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On my 5th week gluten free, not officially diagnosed with Celiac, but feeling notably better and hoping it will help with my Anemia. The possibility was suggested by a doctor recently and I never knew anything about the disease before. I am 35.

I am confused about food labeling and wondering if there's a difference in items that specifically say they contain less than 20ppm and items that don't mention any gluten content at all?

I ask because I ate some boldly labeled GLUTEN FREE! Blue Diamond Nut Crisps. Thirty minutes after I started eating them, I had the tell-tale rumbley stomach and was a bit nauseated. That led me to pick up the box and look at the ingredients - thinking maybe I'd misunderstood the label. It said the crackers were processed in a facility with wheat but tested less than 20ppm for it. I even emailed the company who said their tests showed there's actually zero wheat in their product.

But, I can eat two bowls of Rice Chex, also labeled gluten-free, but with no disclaimer, and I feel fine.

Is there more to this story? I've tried to research a bit, but the forum here is hard to search, and I'm just not coming up with much in-depth commentary about this.

Thanks for any comments!!




  • Inexplicable, random vomiting/or D 30 min. post-meal beginning 2002
  • Diagnosed severely iron-deficient anemic August 2005
  • Bloating, weight gain, ongoing issues October 2009
  • Gluten-free September 2010
  • Self-diagnosed (w/doc's support) Celiac November 2010
  • (mostly) Corn-free December 2010
  • Iron count NORMAL after 3 1/3 mos. gluten free!

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The tests for gluten in foods don't test for no gluten. Some are tolerated by folks who are not very sensitive and some folks won't tolerate them. I don't tolerate small amounts of gluten but for me the key part of the label is 'processed on a plant that processes gluten foods'. Those I personally stay away from.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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im not sure if this is necessarily a question i can answer- because i am not one of those Celiacs who has to run to the bathroom with Nausea or "D" when crosscontaminated... i get more gas & constipation... the "D" comes with larger amounts or cumulative effects... so, i can tell you that i can eat those blue diamond cracker things just fine... but it still could be causing damage on the inside..????

idk.... and sometimes, regardless of abstaining from gluten, excess fructose & dairy, i still get annoying bloating & gas... maybe i am reacting?? or maybe i got SIBO, i think ??

i also feel better on NO carbs.

generally, i can eat those crackers fine.


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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Some products are simply labeled "gluten-free." The manufacturer does not have to have a gluten-free facility, or do any testing.

If they have shared equipment, or a shared facility, they may choose to voluntarily disclose that, but they are under no obligation to do so.

If they test, they will have a disclaimer about "less than x ppm." That is because no test can ever test for zero content. Common tests are sensitive to 5 ppm or 20 ppm. The product may, in fact, contain zero gluten, but the test can not verify that.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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So um, like many others said, it depends on HOW sensitive a person is. Some people may be able to tolerate the minuscule amounts of gluten that show up in the tests, up to the 20 ppm. But others, it completely may be different.

The thing is, companies, like has been aforementioned, arent required to do testin or even disclose information about the facility its produced in. I personally am really careful about this sort of thing, and I dont buy brands that sell wheat products unless they clearly state precautions are in place to maintain the purity of the gluten free products. Just because they place a label sayin its gluten free doesnt mean it is safe, especially for those who are EXTREMELY sensitive to gluten. For example, the other day, I bought some lemon merengues for eatin at like birthday parties and stuff, so I dont feel bad about not eatin cake. It had "gluten-free" all over the container. But I still got sick... Upon closer reading I realized they had mentioned about a risk of cross contamination... OOPS!!!!!!!!!!!!


Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff

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Oh, boy... Sounds like this is all a very ambiguous path.

And a food lover's worst nightmare.

Thanks for the replies. Look forward to hearing from more people.




  • Inexplicable, random vomiting/or D 30 min. post-meal beginning 2002
  • Diagnosed severely iron-deficient anemic August 2005
  • Bloating, weight gain, ongoing issues October 2009
  • Gluten-free September 2010
  • Self-diagnosed (w/doc's support) Celiac November 2010
  • (mostly) Corn-free December 2010
  • Iron count NORMAL after 3 1/3 mos. gluten free!

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Each individual has their own tolerance level for trace amounts of gluten. Some can eat products "manufactured in the same facility as", others can eat products processed on shared lines as long as the company follows careful cleaning practices, some people claim they get glutened just smelling something containing gluten :o I am probably not the one to talk to because my sensitivities are not that high, and I can handle most shared line products. Some I am leary of based on what other posters have said of their experiences. Such as, I do not drink Rice Dream milk. For most of us we have to test for ourselves to see how sensitive we are. :)


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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I avoid anything labeled "made on shared equipment" or "may contain wheat". I am very sensitive. I will react to something that has added gluten, but the amount of gluten or the processing makes the product test at levels that are considered "gluten free". One example of this is McDonald's fries--they actually use wheat in the processing, but when they test the finished product they test at below 20PPM and so they can call them gluten free. SOme people have no symptoms from eating McDonald's fries. I'm one that reacts.

I also wanted to point out, however, that those Blue Diamond crackers are made with soy flour and I would get sick eating them just from the soy. Some of us end up having addtional intolerances once we go gluten free. Soy is one of mine and anything with soy flour especially makes me ill. Just thoguht I would throw that out for your consideration in case you keep having problems with gluten-free products. You might want to keep a food diary for a while to see if you see a pattern. That way you can figure out if it's cc or an additional intolerance that's making you sick.


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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One thing that can help you make sure you get a very lose amount of gluten is to look for the CSA and GFCO gluten free certifications.

They will test products - that pay for this - and the CSA certifies the products to be 5ppm or less, I believe, and the GFCO certifies that the product has 10ppm or less.

The GFCO is a little black circle on a white background with a gluten-free in the middle. The CSA symbol I can't recall right now.

We're going through this with my daughter, because she started reacting to most 20ppm foods we tried, so now we've been calling companies and using products that test themselves as 10ppm or less. Pain in the petutie,I'll tell ya.

And don't forget - because it's not 'zero' gluten but 'really low' gluten, it's kind of like when we eat low calorie foods. We will still get fat if we eat a ton of low calorie foods. And we can still get too much gluten if we eat a ton of our 'really low' gluten products, ya know?


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Ok here's the thing. I don't have many symptoms at all so for me to be able to tell if I had an accidental gluten exposure is very hard to tell. I can't go by that, so my question to add to this discussion is that can we really base this on symptoms. If the intestines are being damaged on what the symptoms level is than we all have to avoid being exposed to any gluten. That becomes an issue of where we need to go to be active in getting gluten labeling standards.


Dx Celiac July 2010 by Endoscopy biopsy- had Endoscopy for another reason, not for possible Celiac

Lactose intolerant discovered August 2010

Hypothyroid Dx 2009. Sleep Apnea 2005

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I am pretty sensitive to gluten...but maybe not as bad as I think I am compared to others? I can tell you, I ate those Nut Thins like crazy in the beginning, and have never had a problem with them. When I went back to the doctor for a blood check 6 months into my gluten-free diet, there were hardly any traces of the anti body our bodies produce when gluten is consumed. Though, if they bother you, I would not eat them! I will say, I realize things NOW that I ate in the beginning and shouldn't have, just because I didn't know any better. It took a while to fully feel "better" and really know the things I can and cannot eat...which is still a problem somedays, I still have my bad days and it's almost been a year!


Diagnosed with Celiac Disease November 2009

2011:

Anemia is gone for the first time in my life, Yay!

Teeth are cleaner according to my dentist (interesting, eh???)

Eyesight has improved for the first time in my life (another interesting thing!)

**My advice to the newly diagnosed** HANG IN THERE!! It gets better and is so worth the seemly long road to getting better. Just be happy you can make yourself healthy with a diet change, and not have to take pills for the rest of your life. :D

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On my 5th week gluten free, not officially diagnosed with Celiac, but feeling notably better and hoping it will help with my Anemia. The possibility was suggested by a doctor recently and I never knew anything about the disease before. I am 35.

I am confused about food labeling and wondering if there's a difference in items that specifically say they contain less than 20ppm and items that don't mention any gluten content at all?

I ask because I ate some boldly labeled GLUTEN FREE! Blue Diamond Nut Crisps. Thirty minutes after I started eating them, I had the tell-tale rumbley stomach and was a bit nauseated. That led me to pick up the box and look at the ingredients - thinking maybe I'd misunderstood the label. It said the crackers were processed in a facility with wheat but tested less than 20ppm for it. I even emailed the company who said their tests showed there's actually zero wheat in their product.

But, I can eat two bowls of Rice Chex, also labeled gluten-free, but with no disclaimer, and I feel fine.

Is there more to this story? I've tried to research a bit, but the forum here is hard to search, and I'm just not coming up with much in-depth commentary about this.

Thanks for any comments!!

I eat the crackers all the time with no issues. Maybe you have some nut allergies??? :unsure:

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