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pianoland

Any Issues With Kind Bars?

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(yes, I know this is an old topic, but . . . .) I need to avoid anything with CHICORY ROOT or INULIN.  This is one of the main ingredients used in fiber bars to get things moving along.  The amount in a Kind bar is probably less than in a fiber bar but still is enough to cause a problem.  I used to eat their peanut butter granola with no problem, then picked up an oats and honey bag by mistake and had a big problem.  I just looked at their web site and see oats and honey no longer has chicory root, yeah!!.  I also need to avoid anything with sorbitol and to a lesser degree, xanthan gum.  All of these items give me problems.

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I buy KIND bars, but give them to my gluten-eating daughter (no gluten in our house).  I have some nut intolerances and almost everything has almonds in it, so I buy gluten-free nuts and peanuts and make my own granola.  I do use Lara bars (the ones without almonds) on occasion.   I do not worry about fiber (nuts have fiber). I eat plenty of veggies!  Did/Do the Inuits worry about fiber up in the Arctic?  

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On 6/22/2019 at 7:16 PM, cyclinglady said:

Actually, we have a group called the Gluten Free Watchdog 8; the US.  It is kind of like a Consumer Reports that advocates for celiacs and checks products.  The group takes no financial support from any advertisers (just subscribers).  The GFW has found that over 95% of products they have tested meet gluten-free standards.  So, American manufacturers are doing a good job.  

What I have found since my diagnosis is that 20 ppm might be too much for some celiacs.  Some celiacs might be more sensitive.  This, avoiding even 20 ppm might be helpful.  Also if you are new to the diet, it can take up to a year or more to feel well or heal.  It is estimated that about 60% of celiacs due to heal.  At first refractory celiac disease was suspected, but researchers found that celiacs make mistakes despite their best efforts.  Dr. Fasano (Ped GI Boston/Harvard University) recommends a special gluten-free diet for the short term to aid in healing.  This diet consists of two things:  no processed foods (like your Kind Bars) and no eating out (greatest chance of cross contamination).

Personally, I avoid processed foods (except on vacation) and only eat out at Dedicated gluten free restaurants.  This has worked for me.  My last repeat endoscopy revealed a healed small intestine.  You can take more chances once you are well.

I hope you find this helpful.  

Hi, 

Thank you for updating, and apologies for starting a transatlantic war on assuming your labeling worse that ours in UK! That's good information, so thank you for providing that. I wrote my post out of anger and frustration of constantly being glutened by so-called gluten free products, and Naked and KIND were the recent culprits. So, apologies for any offence. 

I've been gluten-free for over 10 years, and still getting caught out despite stringent practice. I've decided now that best to avoid all gluten-free labelled products and only eat fresh, as you indicate. I've been to a nutritionist who advises similar. You may be right on the 20ppm as that has been suggested on another forum (Gluten Free Guerillas). I've done some hunting around, and research showing that 1/3 of coeliac sufferers intolerant of any gluten, so need 0ppm which does not exist in UK/US. Only Australia and New Zealand follow that rule. Apparently the original research cohort for the 20ppm level was quite a small cohort also, so many mistrusting of that. I'm getting a petition rolling to have the government/food standards agency to revisit this level and consider a further/additional 0ppm standard as 1/3 of coeliac sufferers is quite a high number. I also think that maintaining foods that meet the 20ppm level has pushed my tolerance level down, without allowing for my gut to heal. Two years ago I was fine with gluten free beer. Now I'm not. So something has changed.

Thank you again for replying. 

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@Leve — 

Wow!  I read my older posting and found typo errors that I can not fix now.  

Anyway, maybe you have not heard my story.  I was glutened  a few years ago.  I am not even sure of the source, but it occurred after a tooth infection, rounds of antibiotics, the flu, and a cold all within a month or so.  I experienced many GI symptoms and developed chronic autoimmune hives.  When my symptoms did not resolve after a few months, I went to my GI.  My DGP IgA blood test was off the charts.  This seemed to confirm my glutening.  However, my antibodies were not coming down months later and I was still struggling with hives.  My allergist had me on a cocktail of antihistamines and she thought that my Hashimoto’s was the cause of the hives.  My GI wanted to do a repeat endoscopy but I refused.  Instead, I trialed the Fasano diet.  By this time, I had lingering nausea and GERD symptoms that were not resolving on the Fasano diet (basically no processed foods).  I went in for the repeat endoscopy almost a year later which showed healthy villi.  I could even see my healthy small intestine as my GI took photos.  However, the endoscopy and pathologist’s report showed Chronic Autoimmune Gastritis.  That was the lingering cause of my symptoms not my celiac disease.  

I was going crazy trying to determine how gluten was getting into my diet.  I found out that I was actually doing a good job. During my research, I realized that every celiac is unique with individual issues like dealing with other autoimmune disorders, intolerances or allergies, or other concurrent illnesses (e.g. SIBO).  We may also be more sensitive due to those concurrent issues.  We must all find our own way in terms of diet, which is very frustrating.  What other illness requires the patient to treat themselves?  

While some countries (like Australia) have stricter gluten free standards there is no 0 ppm that can be measured by any equipment.  The best they can measure is 5 ppm.  When food guidelines were being established, researchers in the US determined 20 ppm as being safe.  The studies were small, but at least it was a start.  At least manufacturers could offer gluten free foods.  It was better than what we had before — nothing.  

Processed food can be tasty and addictive (think sugar) and it is convenient.  I think personally that we all consume too much of it.  This is evident by our obesity and diabetes crisis.  

My personalized diet is pretty much grain free.  I just do better and it helps with my insulin resistance.  I eat meats, poultry, fish, eggs, dairy, vegetables and a little fruit.  I also consume some processed foods, but reserve those for treats or holidays.  I avoid foods that trigger my other issues like garlic and onions (Rosacea).  I avoid nuts because of allergies or intolerances, hence I do not eat Kind bars.  I do not eat out except at 100% gluten free restaurants.  

My individualized diet has calmed down my autoimmune issues.  Right now, everything seems to be in remission.  Whatever I am doing, it works for me.   

What brand of beer do you drink?  Is it certified?  Or just gluten removed?  I drink certified gluten-free beers. Directly from a can or bottle while in a bar or pub, unless bar glasses are run through a commercial dishwasher.   Of course, when my autoimmune Gastritis is flaring, I do not consume any alcohol at all.  

I have been in the UK and I personally think the UK and the US are about equal in terms of safety of gluten free foods.  There seems to be more general awareness in Italy and Finland.  Maybe because they have more diagnosed celiacs?  

To end this thread, I just wanted you to know that not everything (symptoms) can be blamed on gluten even if you have celiac disease.  Do not get stuck inside the gluten free box. 

 

 

Edited by cyclinglady

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On 6/22/2019 at 9:01 PM, kareng said:

Kind do actually test for gluten.  I eat them with no issues 

Hi Kereng. Thanks for responding. I'm having discussion with a number of coeliac people on another forum over this conundrum of why some react to gluten-free labelled/tested foods and others don't. General wisdom is tolerance levels differ, so some people need a 0ppm, whereas food producers can work up to a 20ppm level to still claim a product is gluten free. Just seems to vary a lot across the board for individuals. They are lovely bars though, so make the most of them!

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2 hours ago, Leve said:

Hi Kereng. Thanks for responding. I'm having discussion with a number of coeliac people on another forum over this conundrum of why some react to gluten-free labelled/tested foods and others don't. General wisdom is tolerance levels differ, so some people need a 0ppm, whereas food producers can work up to a 20ppm level to still claim a product is gluten free. Just seems to vary a lot across the board for individuals. They are lovely bars though, so make the most of them!

 testing them at <10 ppm does not mean they have 9 ppm!  There hasn’t been an accurate test for “0” yet.

what I have found, over the years, it that these people who think they react to 1ppm, actually have some other issue.  Sometimes it’s something serious like MAST cell disease.  Sometimes it’s something as silly as a stomach virus they caught from their kids.  Sometimes it’s another food intolerance.....etc, etc.  

for those that truly believe they react to 2 ppm, they should never eat any pre- packed foods

Edited by kareng

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Hi Kereng.

I do not doubt anything that anyone is stating regarding their illness. It is incredibly undermining to call into question what others state about their health and state that they are just imaging that or misunderstanding their symptoms as gastric flu. We already have too much of that at doctor/GP/general practitioner level when presenting with coeliac symptoms.

A person with coeliac will know their body more than anyone else. Equally not all coeliac symptoms will demonstrate as gastric. For me it's mainly neurological/joint inflammation in addition to some abdominal pain. 

I, and those who I've discussed this with, are fully aware that 10ppm or 20ppm does not mean a product has the full level of ppms. I'm also aware that the current testing sensitivity is 5ppm. However, the fact remains that there is much evidence that individuals only heal from ceoliac when they avoid anything coming out of a packet/tin that is labelled as gluten free, so your assertions to that are correct. 

A prime example of this is gluten free beer. We have many brands of this in the UK, and many have the accreditation/seal of Coeliac UK (cross-grains logo). I have drank this beer and had coeliac symptoms. Lots of other people state similar. There is a clear link between consuming that product and having coeliac symptoms. It has clearly been tested to within the prescribed ppm level, but it still makes individuals ill. Similarly to brands of gluten free bread, or products containing wheat codex. 

Again, everyone knows their own body best. 

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2 minutes ago, Leve said:

Hi Kereng.

I do not doubt anything that anyone is stating regarding their illness. It is incredibly undermining to call into question what others state about their health and state that they are just imaging that or misunderstanding their symptoms as gastric flu. We already have too much of that at doctor/GP/general practitioner level when presenting with coeliac symptoms.

A person with coeliac will know their body more than anyone else. Equally not all coeliac symptoms will demonstrate as gastric. For me it's mainly neurological/joint inflammation in addition to some abdominal pain. 

I, and those who I've discussed this with, are fully aware that 10ppm or 20ppm does not mean a product has the full level of ppms. I'm also aware that the current testing sensitivity is 5ppm. However, the fact remains that there is much evidence that individuals only heal from ceoliac when they avoid anything coming out of a packet/tin that is labelled as gluten free, so your assertions to that are correct. 

A prime example of this is gluten free beer. We have many brands of this in the UK, and many have the accreditation/seal of Coeliac UK (cross-grains logo). I have drank this beer and had coeliac symptoms. Lots of other people state similar. There is a clear link between consuming that product and having coeliac symptoms. It has clearly been tested to within the prescribed ppm level, but it still makes individuals ill. Similarly to brands of gluten free bread, or products containing wheat codex. 

Again, everyone knows their own body best. 

Unless you have had repeat blood tests measuring antibodies (good) and repeat intestinal biopsies (best), you can never know for SURE if you have healed  or have had a gluten exposure while consuming a gluten free diet.  Without testing you can only base your symptoms on how you feel which, quite frankly, works for most celiacs.  The problem is that often those feelings/symptoms overlap with many, many, other illnesses.  

The Mayo Clinic really says it well and Doctor Murray is a leading celiac disease expert in the US and world-wide (credible source):

https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/gluten-may-not-be-culprit-in-nonresponsive-celiac-disease/mac-20430035

When I was first diagnosed (at the time I only presented with  anemia and had no GI issues), I thought I was getting glutened due to intestinal discomfort.   Turns out that I can not tolerate Xanthan Gum which is found in many commercially processed gluten-free foods and flour blends. Even healed, I do not digest this well.    Again, it is not always gluten that is the culprit.

In the US and Canada, we are having disputes regarding mechanically/optically sorted grains (oats) or even gluten removed items (like some beers).  Celiacs are reporting symptoms.    It is why we need to continue to advocate for food safety.  The Gluten Free Watchdog (who is a dietician and a celiac) is actively working with celiac researchers and the FDA (Federal Food and Drug Administration).  She also tests gluten-free products.  (Is there access to request product testing in the UK?)   Consider following her.  

If you have been gluten free for 10 years and are still getting gluten exposures, consider trialing the “Fasano”diet which is basically does not allow processed foods.  It is a temporary diet, but can aid in healing.  If issues do not resolve, consider seeing your GI as the referenced Mayo Clinic recommended.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

Following a gluten free diet has a steep learning curve (and I am talking not just to you, Leve, but other members).    Each gluten-free diet needs to be personalized for other food intolerances and time to learn exactly how much gluten your body can have without causing a rise in antibodies.  Some celiacs are very sensitive, while others may just take too many risks.  Only you can determine what is best for you.  I wish there was an easier way.  

Celiac.com has many members.  Most are no longer active.  Why?  My theory is that they have healed and are now leading normal lives.  A few of us have stayed on the forum because we like helping others.  You can heal and feel good, so there is hope!  

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All I am telling you is what has happened with some of the previous posters.  Not everything is about gluten.  Sometimes people ignore other issues they could have fixed.  

But, if you or anyone else is extra sensitive, you will not be able to eat processed foods- that includes things like Kind bars, canned or frozen vegetables,  certainly not that gluten removed beer they call gluten-free in some countries, not actual gluten-free beer, etc.  

Edited by kareng

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I tried them years ago. I had one or two called company to go over sources of ingredients and manufacturing/processing etc. I have issues with corn and corn derivatives as well. The employee was upfront and knowledgeable about products and manufacturing/processing. For me it likely was an ingredient derived from corn that caused me issues.

My husband took the rest of the bars to work so they didn't go to waste. I don't recall the flavor but it wasn't oats and honey. My daughter eats gluten-free oats for oatmeal, but I feel best avoiding oats altogether .

Best wishes

Edit: I just realized I responded to initial thread which is old. Oops. 

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