Celiac Disease, Gluten Sensitivity, Miscellaneous, Uncategorized

What Is Gluten-Free?

27 Comments 21 May 2012

These are my notes from the private conference call I mentioned I was invited to attend last Thursday with the North American Society for the Study of Celiac Disease (NASSCD).

First off, there was a short introduction about the NASSCD. It was founded last year by Dr. Stefano Guandalini, the founder and president of the University of Chicago Celiac Disease Center, to bring together the international medical community that is taking the lead in researching celiac disease and related disorders. There are 30 founding members from all over the world.

The theme of this discussion was “Is it Gluten-Free Or Not?”

Dr. Guandalini said that it was time for the medical community to speak up due to the recent confusion about what the definition of gluten-free is. They wanted to send out a message from a “strong and clear voice based on facts and research”.

He stated that it is a pity that North America still does not have a food industry standard for use of the term “gluten-free.” It has been 2+ years we’ve been waiting on the FDA to define a standard of less than 20 parts per million (ppm) – the same standard as Europe. As of now, any company can claim to have “gluten-free” food.

Less than 20 ppm of gluten = 20 mg per 2.2 lbs

Individuals that are very sensitive may react to 10 mg a day, but studies show that 20 mg a day is what sets most people off. Some people can tolerate up to 100 ppm a day, but studies show that after 100 ppm all patients show inflammation.

Here’s the part that I thought was especially interesting…

Aside from celiac disease, which affects 1% of the population and equals 3 million Americans, there are non celiac sensitivities.

Gluten Allergy
7% of bakers are affected by asthma due to inhalation of wheat

Gluten Sensitivity
Which is a problem, because we don’t even know how to define it. We know it exists with adverse reactions. Some symptoms are similar to celiac. Patients feel better when gluten is eliminated from their diet. We are only at the beginning of understanding this situation and more research is needed. There is no change in intestinal biopsies and no specific gene.

A) No definition
B) Prevalence unknown
C) No markers for diagnosis, no tests, only relying on patient reports

So, basically, the medical professionals have a problem with any assertion that people with gluten sensitivity can tolerate trace amounts of gluten.

I personally find this interesting, since I am meeting more and more people that eat gluten on a regular basis…or restrict gluten and then binge on it…that claim “I’m just gluten sensitive”.

Dr. Guandalini explained that some people that claim to have gluten issues may have fructose absorption problems.  Another possibility that needs to be studied more is a reaction to ATI – a protein in wheat.

“Can these people tolerate any amount of gluten? We don’t know. It is dangerous to say they can tolerate a little when it is not based on facts.”

So, in summary, gluten sensitivity is not only real, but it is to be taken seriously.


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Your Comments

27 Comments so far

  1. 1
     
    Wal says:

    Do you know if 20ppm is an average for the product or a maximum?

    •  
      Kelly says:

      Wal, if I understand your question…20ppm is the amount a product should not exceed. The goal is for a “gluten-free” item of food to be less than 20ppm. 20ppm is what an individual with celiac should not exceed in one day. 20 ppm means 20 parts per million. It’s a ratio. So a lot of people get confused thinking that what ppm a product tests to be is the actual amount in the product. No, it’s a ratio…so…OK, so if a beer tests out to be 6ppm …people mistakenly think that they’d have to drink over 3 beers (6×3=18) to exceed 20ppms for the day. Wrong. They’d have to drink a TON of beer to equal 20ppms. I’m not sure how the ratio would convert for liquid measurements, but I can try to find out.

      That’s why they gave the grams converted ratio of:
      Less than 20 ppm of gluten = 20 mg per 2.2 lbs

      So, let’s translate that into a baking mix. If a gf baking mix says it tested below 20ppm, then you’d have to ingest 2.2 lbs of that mix to reach your 20ppm limit of the day. Make sense?

  2. 2
     
    Ryann says:

    I glutenized myself today. It was horrible. I don’t know exactly how much it takes to set me off, but it doesn’t seem to be a lot. I had a donut this morning (I miss them), and then for lunch I splurged and had chicken tenders for the first time in 2 years… apparently that is all it took to make me VERY sick :( It makes me so sad to see all my friends and family enjoying every day foods knowing that I have to literally suffer for the rest of my life if I eat anything “normal.” Of all the things I miss the most… peanut butter and jelly sandwiches win, or rather the bread I used to use for my sandwiches. I absolutely HATE this. It is annoying for me and my family especially during the holidays. Gluten sensitivity and celiac disease is very real. It is a very serious problem for people like me, and it is not fun dealing with people who don’t understand how it affects people.

    •  
      Gloria Duy says:

      To Ryann, a regular gluten donut and chicken tenders is a HUGE amount of gluten!! 20 ppm would be as if you ate a GF donut that someone set on the plate that had a gluten donut on it.
      I hope you can find some safe products out there. Kinnikinick makes good GF donuts and you can make your own chicken tenders easily. You don’t have to go without. Stay safe.

      •  
        Don says:

        Gloria is so right. There is no such thing as cheating or having a little. Hang in there and do the research needed to keep yourself healthy.

        •  
          Debi says:

          I know it is difficult to see family and friends eating what we grew up knowing as “normal food” but there are products out there that are gluten free, no they are not the same texture but I would sacrifice texture any day for feeling good. I wish you continued health and hope you find a way to feel good about the gf diet.

    •  
      Don says:

      I want to add to what Gloria Duy wrote. Yes, the Kinnikinick donuts are great. Bell and Evans make chicken tenders, chicken fingers, and chicken nuggets that are really good! My kids and I really enjoy them.

  3. 3
     
    Heather says:

    This article really summed up the situation, thanks! Even though the moves made by Dominos were really not well thought-out by the company, I love that it really sparked some great debate and discussion about this within the Gluten Free community. A strong definition of “Gluten Free” is really what we (Celiacs, gluten intolerant/allergic) need moving forward so others will understand the cross-contamination issue. Many have seen the latest celebrity trend toward the Gluten Free diet for weight loss and don’t understand the differences.

  4. 4
     
    Dee Cee says:

    HI:

    Recently my daughter had an endoscopy for reasons other then testing for celiac disease. She was diagnosed with celiac many years ago and has been on a strict gluten free diet ever since. Even though corresponding blood tests indicated that she was following a gluten free diet her endoscopy showed active disease. Our doctor, who is head of Children”s Hospital Gastro in Boston said this is due to cross contamination and items not being truly free of gluten. Therefore the benefit of being on the GF diet helps my kids feel good but does not prevent them from being at higher risk for the long list of diseases associated with celiac disease. Apparently the blood tests are less sensitive than our intestines. Very distressing.

    •  
      Heather says:

      Dee Cee,
      I have been doing a lot of research on this subject because it seems to be coming up a lot with Celiac patients. Please look into both the Specific Carbohydrate Diet (SCD) and the Gut and Psychology Diet (GAPS). These both address issues with continued symptoms and the lack of healing that sometimes happens with the gluten free diet. I would highly recommend doing some research on this. Lack of healing is not necessarily always caused by cross contamination. Best of luck to you and your children.

  5. 5
     
    Kirk says:

    As a 67 y.o. physician diagnosed with Celiac disease a year ago I have read everything there is on the subject. It is very confusing because surely there are different individuals who have different tolerance levels. Occasionally I have made a mistake and accidentally had a few bites of macaroni salad for instance, and had no symptoms. I follow a strict diet buy as is the case with everyone I do make mistakes. Surely there are many celiacs who could eat a Domino’s pizza and not have a problem. And then there would be the unlucky one who got enough cross contamination and was sensitive enough that they got sick. I am still trying to learn more as I go along.

  6. 6
     
    Don says:

    I want to encourage you and thank you for all you do to help other Celiacs, to keep us informed. Keep up the good work and let us know how we can help to move our FDA and other government agencies to make labeling mandatory so that all Celiacs will be safe.

    •  
      Kirk says:

      And I did forget to mention that I am an ophthalmologist and not a gastroenterologist. However, since I went undiagnosed for at least 8 months and lost 55 pounds and was very sick I want to help as many people as possible. I can say that no one should say they are celiac if they haven’t had an upper endoscopy. No blood test can absolutely make the diagnosis.

  7. 7
     
    Eva says:

    I have not been confirmed celiac by a biopsy but I am certainly gluten sensitive. However, I do eat out at restaurants that may not be as strict in their kitchens as those that are certified by the NFCA. I am always careful and give them my business card that tells them what I cannot have in my food. Over the span of a year I might get sick once so clearly the levels of gluten around are not high. Of course I never go back to a restaurant that gives me “white food” – that is grilled chicken or fish with a baked potato.

  8. 8
     
    Aleka Munroe says:

    People,
    While I don’t want to sound unsympathetic, I have been diagnosed and on a gluten free diet for 21 years. Back then there was one kind of bread and it was awful. I never want to eat another rice cake again, after eating them for about a year until I was well enough to begin making my own pasta, bread and everything else,

    The life of a Celiac today, me included, is very easy today. I didn’t eat in restaurants for many years because no one had knowledge of gluten free. I know it’s hard to get used to the diet. In 21 years I have never intentionally eaten gluten. I really miss my baklava that so far has never been replicated gluten free; however, I have found replacements for everything else. I recently got Katz GF custard filled donuts. My first custard filled donut in 21 years. I was a happy camper!

    Hang in there and NEVER cheat. If I can do it for 21 years, so can you. Believe in yourself. Your whole body’s health depends on it! To quote Dr. Alessio Fasano, “The gut is not Las Vegas. What happens in the gut does not stay in the gut.”

    •  
      Gloria Duy says:

      I agree with Aleka as I was diagnosed celiac 16 years ago. It does seem like the world is our GF oyster now compared to then.
      However, as a dietitian that works with new celiacs, they have to go through their grieving process for their old foods, sometime glutenate themselves a few times, and ultimately start to feel well before it totally sinks in. It is not as hard today, but it is still very hard to be different. There is a mental componant, not just physical. The day I had my first cold beer in 15 years was great!
      I complained about walking a mile and a half to school as a child and my father’s stories of walking 10 miles uphill with no shoes in the snow didn’t phase me!
      Love the quote about Las Vegas!

  9. 9
     

    Personally I can’t wait until the US finally pass legislation where companies cannot label products as ‘gluten free’ unless they adhere to specific standards and contain less than 20ppm. As a Scottish celiac who has travelled a lot and is currently living in the States I find the risk to be so much higher here than in Europe/Argentina/Australia/New Zealand and the list goes on as it’s hard to trust many companies at all. I’ve been caught out my products labelled as ‘gluten free’ but which have been made on shared equipment with wheat. This is ridiculous and the US is way behind the rest of the world on this :/

  10. 10
     
    Michele says:

    You had an ad this am which led onto a video on what people can and can’t eat to lose or maintain weight. It is gone now. I want to finish the video which was about 39 minutes with a male and female. He do I find them?

    •  
      Kelly says:

      Michele…I’m sorry…any ad that was up is a Google ad and I have no control over them. So I have no way of finding out what it was. :/

  11. 11
     
    Chris C says:

    I am classified as Gluten Sensitive after having been misdiagnosed with “IBS” since I was 18 years old.

    The longer I go gluten free the less tolerant I am of any accidental presence in my diet. The reaction is severe and prolonged. So no I would never knowingly ‘sneak” a little.

    I believe the US FDA needs to get in line with the international standards.

  12. 12
     
    Katie says:

    Can you explain to me when you say in the email that people who say they don’t have to be as careful as someone who is celiac are misinformed?

    I’m gluten intolerant, but cross contamination doesn’t usually bother me, or if I make some kind of inadvertent mistake while eating out. I am usually very careful, but I can eat out and sometimes take chances that many super sensitive Celiacs can’t.

    One time I accidentally ate a few bites of flour tortilla that the waiters told me beforehand would be corn, and I freaked out, waiting for the stomach pains to come, but I was shocked that nothing happened. Even though I’ve had some bad reactions in the past.

    Can anyone explain this or let me know If I am mistaken in being slightly cavelier (but mostly careful)?

  13. 13
     
    Trish says:

    Yes, the world may be an “oyster” to some celiacs, but I can detect if there is a touch of gluten in ANYTHING. It can be in chicken broth, salad dressing, sauces, candy, just about ANYTHING. I read labels before I buy and eat ANYTHING. If it has “starch”, “gluta-” any unspecific thickeners, or is NOT labeled GF, I pass. If a restaraunt cannot make me a decent meal without cross-contamination, I do NOT go there. I call and ask in advance. Most GF menus are salads with meat on them, and too many greens give me diarrhea!! I cannot even take Communion anymore, as I am NOT even allowed ANY alcohol. Lucky for ME I am a good cook.

  14. 14
     
    Edwin Power says:

    I like the attitude at the local Pat & Oscars with their gluten free pizza. The chain has trained the employees to use a dedicated (no gluten) pizza board & cutter to limit cross contamination. The employees will warn you that they take care but that some cross contamination can take place so that you are aware. Much better than the no pizza days. Tastes good. Not perfect but good.
    Falling off the diet wagon. I have read that the irritant of even lower level gluten could pose a risk for cancer. So no MSG, ferous glutamate in some olives, and I guard against the wrong vegitable proteins.

    •  
      Gloria Duy says:

      Glutamate has nothing to do with gluten. MSG does not contain gluten or wheat. And vegetable protein that contains wheat must be clearly labeled as such since it is one of the eight major allergens and is required by law.


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Thanks for stopping by! I'm Kelly Courson and this is where I've shared my gluten-free finds since 2003. The world has been my gluten-free oyster for 14 years now and I love sharing what I've learned in order to help others adapt to a gluten-free diet. Have a look around and feel free to leave a comment. Connecting with people like you is what has kept me going this long! Seriously.
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