Me Being a Celiac – Gluten Free Finds

Gluten Content Test: Counter Culture Coffee Forty Six Coffee Beans + Nima Sensor False Positive

After being diagnosed with Celiac Disease in 2016, I wrote Counter Culture Coffee to see if the coffee beans I get from them (Counter Culture Coffee Forty Six) are gluten free.

My email to them:

“I have recently been diagnosed with gluten intolerance. Because of that, I need to eliminate gluten from my diet. Does counter culture coffee contain gluten or any gluten containing additives? I can’t imagine you use gluten anywhere in the process, but I wanted to double check.”

Their reply back (dated 3/8/16): “Thanks for contacting us! Coffee is naturally gluten-free and we do not add anything in the process of roasting, so you should be good to go!”

Note: This is their reply to me personally, not an official position, contact Counter Culture Coffee with questions and verify currentness of information.

Fast forward to 11/2017. I decided to double check this with my Nima Sensor

Result: Gluten Found! What the what?!!!! This result baffled me and sent me into a spiral wondering – Just what can I trust??? Single ingredient item from (what I consider) to be a high end coffee roaster, that has told me their process includes not gluten ingredients. After some digging, I realized that this was false positive result. Nima has issues with intensely colored things. See link below.

I decided to perform a GlutenTox test on this coffee. GlutenTox allows you to choose between 5 and 20 PPM. I performed this test at the 5 PPM (parts per million) sensitivity level.

I used a cooled down shot of espresso to complete this test.

The bag of coffee, two glutentox solutions and test strip

Close up of the results

The test stick has two lines, the one on the left is the blue control line and should always become visible. There is another possible line just to the right of that, that one is red. That becomes visible if gluten is detected at the selected concentration. As you can see in this photo only the control line is visible. According to this result the sample I tested has a lower than 5 PPM gluten content.

Order has been restored in the world

More About GlutenTox

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Each GlutenTox test comes with single use pipettes, extract solution, dilution solution, sample scoop and a test stick. The testing process is relatively simple and the instructions are clearly written. This test gives you some flexibility as you have the choice between testing at 20 PPM (parts per million) or 5 PPM. Under 20 PPM allows manufacturers to label certain foods as gluten free.

GlutenTox Home is a quick, user-friendly test to detect gluten in foods, drinks, cosmetics, or any other substance. It’s useful for anyone who suffers from celiac disease, or keeps a gluten-free diet for any reason.

Adjustable sensitivity: test for 20ppm or 5ppm of gluten depending on your specific needs
No special equipment required; everything but the test material is included in the kit
Safe, non-toxic, and easy to use
Quick response: a reliable answer in less than 20 minutes
The included G12 antibody recognizes the toxic fraction of gluten in wheat, barley, rye, and even oat.

Kits contain everything you need to test for gluten in foods, drinks or cosmetics. Kits are available in 2-, 5- and 10-test quantities.

Price varies based on how many kits you buy

Visit GlutenTox

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A note about gluten content tests: These are performed in non-lab environments with small samples. Processes and ingredients change over time. Tests found on Gluten Free Finds should not be considered authoritative in nature. Always check product labels and consult manufacturers for additional information on ingredients and processes.

Gluten Detective – At Home Test for Gluten Exposure!

I’ve been waiting for this product to reach the US for a while now.

GlutenDetect developed and released by Spanish company Biomedal tests for Gluten Immunogenic Peptides (GIP) are fragments of gluten resistant to digestion and therefore eliminated in urine and stool.

This at home test let’s you know if you have ingested gluten in the last 24 hours.

I’ve been eagerly awaiting this product because my celiac disease symptoms can be mild, at least with cross contamination level gluten. Sometimes I don’t know if I’ve been glutened. I’m excited to have the ability to conclusively answer the question – I have eaten gluten??

GlutenDetect has been released in the US under the brand name Gluten Detective. The current downside is the semi-outrageous pricing. I’m hoping they can bring the price down.

Gluten Detective

“Gluten Free” Labeling – Just Stop It Already – Kate’s Real Food

The photo above was taken at a coffee shop in Estes Park on a family vacation. Although Estes Park itself doesn’t have a lot of gluten free options, Boulder and Denver… do. I would venture a guess that Boulder, is one of the most gluten free friendly spots in the whole United States. We split time between all three locations. Look for an upcoming trip report to hear just how great Bolder and Denver are for us gluten free peoples.

Back to the subject this post. Kate’s Real Food Tiki Bar. These appear to be labeled gluten free, but they aren’t really. They are labeled “gluten free ingredients”. The label proceeds to tell you how they are processed on shared equipment.

From Kate’s Real Food’s website – “The Tiki Bar is gluten-free, peanut-free, soy-free and dairy-free, but made in a facility that also contains gluten, peanut, soy and dairy products”

Really?? Just please stop it. Either do it or don’t do it. This product is deceptive and dangerous. If you can’t make a gluten free (or peanut free or soy free or dairy free) product that’s really free of those things, please just hop off the bandwagon and stop.

Chick-fil-A: New Gluten Free Bun + What’s Gluten Free at Chick-fil-A

ATLANTA (June 19, 2017) – Chick-fil-A^® announced today the addition of a new Gluten-Free Bun. The addition comes in response to customers’ requests for more gluten-free/sensitive options on the menu. The new bun, which is now available in restaurants nationwide, comes individually packaged and can be ordered with any of Chick-fil-A’s sandwich offerings.

The Gluten-Free Bun is made with premium ingredients, including ancient grains quinoa and amaranth. It is enriched with vitamins and minerals and is lightly sweetened with molasses and raisins. The Gluten-Free Bun rolls out nationwide following successful tests in three cities across the country in 2016.

Data shows roughly 18 million Americans have a gluten sensitivity or preference. Chick-fil-A is one of the few quick-service restaurants to offer a gluten-free bun.

“We know our customers are looking for more gluten-sensitive alternatives. They asked, and we listened,” said Leslie Neslage, senior consultant of menu development at Chick-fil-A. “We heard positive feedback in test markets that the bun tastes better than some other gluten-free breads. That’s because instead of rice flower, we’ve made the bun with more premium ingredients like quinoa and amaranth. Our hope is that the Gluten-Free Bun addition opens up options for gluten-sensitive customers to enjoy more of our menu.”

Also worth noting – “While individually packaged and certified free of gluten, guests will be required to assemble their own sandwiches to reduce risk of cross-contamination. Chick-fil-A kitchens are not gluten-free.” See below for a link the full news release.

Chick-fil-A has also re-added a “gluten free” list to their website. That, and any reference to gluten, has been conspicuously absent from their site for years.

I think Chick-fil-A has been going the wrong direction with regards to gluten free for a while. See: Chick-fil-A – A Step Backwards When It Comes to Gluten Free. This menu addition and the additional information MAY be a sign they are changing directions. I still have serious concerns. Read on.

Chick-fil-A continues use phrases that make me think they are not using Celiac-safe methods.

Example: “For guests who wish to minimize their gluten intake, here is a list of additional menu items offered at Chick-fil-A. (The fine print: Due to the handcrafted nature of our food, variations in our supplier ingredients and our use of shared cooking and preparation areas, we cannot ensure that our restaurant environment or any menu item will be completely free of gluten.)” from the What’s Gluten Free at Chick-fil-A? page. Emphasis mine.

I get it. Their kitchens contain gluten and there’s no guarantee that cross contamination will not occur.

Troubling. The really troubling parts of that statement are – “variations in our supplier ingredients”…”we cannot ensure that our restaurant environment or any menu item will be completely free of gluten”

Wait, what? You mean to tell me that Chick-fil-A doesn’t have enough sway with their suppliers to work with them to guarantee certain ingredients are gluten free? So, the honey mustard is gluten free as of some point, but supplier A decided to change something and now it’s not and we can’t do anything about it and too bad.

What about other allergens? Can those just randomly show up in the food too? How about “Sorry guys, the coleslaw has peanuts in it today, hope you brought your EpiPen”.

This is careless, sloppy and/or reckless.

With regards to cross contamination… In 2013 Chick-fil-A had the following on their website: “While we don’t have a gluten free prep area for these items, our procedures have been written to avoid cross contamination”

Sometime after March of 2014, the term gluten was all but expunged from Chick-fil-A’s website. In December of 2016, the only mention I could find of the term gluten related to applesauce or something in their kids meals. The allergen matrix made no mention of gluten.

Now that gluten seems to be a valid word again at Chick-fil-a are they still trained to avoid cross contamination? Were they ever trained to do so?

Chick-fil-A… How about working with your suppliers to make sure they truly supply gluten free items? How about giving people with serious gluten issues some insight as to what goes on in the kitchen and give us a clue how and if we can order safely (within reason) at your restaurants??

Or – Just say it… Celiacs and the like – stay away. We use the term “gluten sensitive” because we’re hopping hopping on the bandwagon.

At least that way, you wouldn’t be hopping on the bandwagon at our expense.

Chick-fil-A Introduces new Gluten-Free Bun
What’s Gluten-Free at Chick-fil-A?
Previous Post on GF Finds: Chick-fil-A – A Step Backwards When It Comes to Gluten Free
Chick-fil-A Allergen List
2013 Gluten Free Information (via archive.org)
Chick-fil-A 2014 Gluten Free Menu Items List
GF Chick-fil-A Nugget Copycat Recipe

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Me Being a Celiac: Too Much Raw Food

I have Celiac Disease [About Me].

It’s taken me nearly a year and a half to figure this out, but, I have come to the conclusion that eating too many raw vegetables is a real issue for me.

I first read of this issue in one of the first books I read on Celiac Disease – Jennifer’s Way. Jennifer Esposito remarked that this was a problem for her.

Although I continued to feel quite crummy. I didn’t think that too many raw foods were a real issue to me (I’m also not saying they were the cause of all my problems a year and a half ago). I figured if I had a problem with too many raw vegetables and fruits, I would have some sort of GI reaction, which I did not.

Advice ignored.

Fast forward a year and half-ish. Even though I’ve adhered to a strict gluten free diet, I still continued to periodically feel crummy, without knowing why.

On the plane ride on a recent trip (heading to Florida and eventually on a cruise [See: Gluten Free on Royal Caribbean]) I finished reading Eat Dirt by Dr Josh Axe. Again, I read mention of issues with too much raw food. Again, I reasoned, this is not an issue I have.

Turning point. In Florida we ate a completely gluten free, vegan, raw restaurant. Within an hour or so I felt horrible and continued to fill ill through the next morning.

At this time, I also recalled that I started to feel ill after drinking my typical lunchtime smoothie AFTER I started adding Spirulina to the smoothie in heaping portions.

In all of these cases, I did not have specific GI symptoms, generally I just feel yucky, tired and blah. It’s almost as if my GI tract has too much work and tells the rest of my body – slow down, this is going to be bad.

Since, I have tried to limit raw vegetables and fruits and have noticed a marked difference. I feel better. I still eat raw foods, I just try to do so in moderation. I still make a smoothie, I just don’t put as much fruit in and I only use a pinch of spirulina. For me, this was some advice I was ignoring, that seems to have made a big difference.

I feel like I also have a similar reaction of I ingest too many probiotic-type things. As of this posting, I’m currently taking one Raw Probiotics Ultimate Care per day and that seems to be working well. I can also drinking a Kombucha or two without issue.

I’m also not saying raw foods were/are the cause of all my issues. I’m confused as to why I still seem to have this issue, but it seems I do. Hopefully over time it will become less and less of an issue.

Disclaimer: This is in no way a recommendation to you. This is not medical advice. The following is for informational purposes only. Before making a changes to your diet, talk to your doctor or healthcare professional to see what choices are right for you.

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New: Clear Coffee…. Why?? – A commentary on our over processed food supply

I subscribe to uncrate. The site features new/”cool” items. I do find a lot of their content interesting.

They just posted about this… Clear Coffee – it’s clear… coffee.

My question is… why??? Is non-clear coffee an issue?? Do the processing steps required to do this provide any health benefits?? Are any of the beneficial compounds in coffee removed? Are there any benefits at all to this?

To me it’s a sad commentary on our obsession, as a society with over-processed foods. Don’t get me wrong, I’ve eaten and periodically do eat my share of (gluten free) processed foods, but clear coffee????

Recommended Reading: The Paleo Cure | Eat Dirt

Also: What’s With Wheat Movie

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Dear Outback Steakhouse…. Second Thoughts on Salad Safety

xsDt5DTL

This past weekend I had the joy of visiting my two college-aged children at their college, Iowa State University in Ames, Iowa. The weather was beautiful and it was just an all around great time.

Since I have Celiac Disease [About Me] I must eat strictly gluten free. The Ames area has a few really good choices. One excellent choice is Hickory Park BBQ. This enormous restaurant is always busy, absorbing mass numbers of people in relatively short order. It reminds me of a bbq-themed amusement park. All of this would normally make me nervous, but Hickory Park does an excellent job of serving celiac safe gluten free food when I’ve visited. I’ve eaten there lots of times without issue and always walk away impressed. Their menu is expansive and they really understand the issue. We did visit Hickory Park on Sunday and had a great meal.

On to the subject of the post…

We also ate at a local-ish Outback Steakhouse. Normally this location does an excellent job and I’ve never had an issue. I’m thankful to Outback Steakhouse for having a nice-sized gluten free menu. The other times I’ve gone to since being diagnosed have went well. Thank you Outback Steakhouse your gluten free offerings.

This visit was different though. Even though the restaurant usually does well with safe GF and the location gets excellent Celiac Friendly ratings on Find Me Gluten Free, I still went over my standard spiel. The server said her mother has Celiac disease and she also said she was gluten sensitive herself. I was assured there was nothing to be concerned about, that I would be taken care of. Yay!

As I ate my salad, a foreign texture and sensation came from my mouth. A distinct crunch I haven’t felt in a long time. It confused me at first and for the first couple of seconds I continued to chew. When the dots connected, I immediately spit out what I had it my mouth and rushed to the bathroom to rinse my mouth.

I shared the incident with our server and received a quick and chipper “I’m sorry about that, can I get you another salad?” Yeah, ummm, no I don’t want another gluten-filled salad, thank you. The staff’s response went downhill from there. No additional follow up and no reduction of the bill for the salad I wouldn’t eat. It was “have a nice weekend and pay up”. When I realized nothing was going to be said or done, I asked to speak with a manager. Although he meant well, he really continued to handle the situation somewhat poorly. Among other things, he said the salad should have been made from ingredients directly from the cooler instead of the salad line.

Outback Steakhouse should ensure that their staff is properly trained when it comes to everything including salads.

If you have a similar experience, I encourage you to kindly and respectfully speak up. It’s important that restaurants know what’s going on. You are an ambassador of the gluten free community. Your effort to help educate food service providers benefits the entire community. Likewise speak up when you receive good food and service. Talk to staff and management and add fair reviews to Find Me Gluten Free.

How Safe are Salads?

Let’s face it, there’s probably a lot going on at most salad prep stations. Multiple ingredients, some containing gluten (croutons, chow mein noodles, bread, maybe more) all in close proximity. People building salads on top of other ingredients with things falling everywhere.

I don’t believe that a salad is the safe go-to some make it out to be. Not saying there aren’t plenty of safe salads, just saying that they are not a slam dunk, “of course, it’s gluten free, it’s a salad!” just isn’t accurate or fair.

The silver lining is… I did not get sick. My takeaway is… I’m leaving side salads behind. They offer little nutrition (iceberg lettuce and oily dressing) for a lot of risk.

If you’re sensitive to gluten don’t assume a salad is safe. Ask about prep and cross contamination. If gluten containing ingredients are close by, ask for a salad made from fresh ingredients from the walk-in.

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Lots of experimenting going on and… I’m the laboratory

xsDt5DTL

The longer I walk the journey of Celiac Disease, the more I am coming to grips with the fact that it really is a chronic disease. My initial beliefs/hopes that my life would go back to “normal” after being on a strict gluten free diet have been pretty well dashed to bits.

Although, for the most part, I feel healthy and function pretty much normally, I continue to learn about myself.

A recent example… I have been trying to avoid dairy. Not because I noticed a particular reaction or felt particularly ill after eating dairy, just because I know dairy is difficult to process and felt it would be better for me to skip it as much as possible.

That was all until this past Sunday, when what I now call “dairy-mageddon” happened. I must have been low on calcium because I ate and drank every dairy related thing I could get my hands on – americano with cream, a latte, yogurt, three glasses of milk and ice cream.

Fast forward to Monday and I was laid low. Extremely groggy, fatigued, trouble thinking and just overall ucky feeling. I can’t say for sure, but I think it was the dairy.

I get it, I shouldn’t eat dairy or at least very much. I guess the experiments continue.

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Celiac Sufferers – How Sensitive Are You? Sensitivity vs Severity of Symptoms

xsDt5DTL

I have Celiac Disease. If you’ve read GF Finds for long, you know that.

Because of my work on GF Finds, I regularly communicate with folks with Celiac Disease online. As far as face to face interactions with fellow Celiacs that mostly happens when I attend my local Celiac Support Group. If you’re not a part of one of those groups, I highly recommend it. It’s a great place to learn, fellowship and receive/give support. See: Celiac Support Organization to find your nearest group.

I will say that I am lately stricken by (at least my perception of) how lax some Celiac Disease sufferers are with regards to eating at home and eating out.

Example: 1: “My children and I share mayo and peanut butter, I just look in the jar and try to avoid the crumbs”, 2: Eating at restaurants that have a “gluten free menu” without inquiring about preparation and cross contamination. 3: Hey… If it says it’s gluten free bread, I should be good to go. Or… 4: My GF bagel came out on the same plate as my spouse’s regular toast. I ate it.

Many of these people have years more experience living with Celiac compared to me, some decades more.

I’m left confused. Am I too careful? Or, am I uber-sensitive vs most Celiac Disease sufferers?

If you are regularly exposed to small amounts of gluten, here are the options as I see them…

You are not sensitive to small amounts of gluten, you feel well and your body is healthy.
You are not perceivably sensitive to small amounts of gluten but you are continuing to do damage to your body.
You are not perceivably sensitive to small amounts of gluten because you are used to continual exposure. You are damaging your body.
Your symptoms are relatively minor or have otherwise become normal to you and you just live with them. You are damaging your body.

3 out of 4 of those options have you doing damage to your body.

To me, there are two factors at play here, I’m not doctor, these are my own terms and understanding…

Sensitivity – My threshold for reacting to foods. Example – If I just ask Chipotle workers to change their gloves, I will generally will not feel well. Changing of (presumably magic) gloves doesn’t do it for me when they are serving the exact same mildly cross contaminated food using fresh gloves, my threshold for reaction is lower than that. Related: How I order at Chipotle

Severity of Symptoms – How badly I feel or react after I am exposed. This will vary from person to person and presumably vary based on how much gluten you’re exposed to. Although I believe I’m extremely sensitive, my reactions are relatively minor in comparison how some react. I do not have to run to the bathroom or go to the ER.

I would make the case that whatever we call these two factors – that we should not confuse the two.

Just because I can make it through the day doesn’t mean I’m not sensitive.

Low level reactions, or symptoms are not acceptable to me as an everyday way of life, because I know I can feel well and I know that when I am having a reaction to any degree, I’m doing a disservice to myself and the people I love.

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Gluten Free Diet is Inadequate for Many Celiac Disease Sufferers

I received this email today from the Celiac Disease Foundation…

The evidence cannot be denied:

For many, if not most, celiac disease patients, strict adherence to a gluten-free diet is an inadequate treatment for celiac disease.

Because research dollars have been so hard to come by for celiac disease, biomedical researchers are still at the beginning of understanding the short- and long-term implications of the disease. What they have learned, however, is shocking: for many more celiac disease patients than ever previously thought, even strict adherence to a gluten-free diet, while possibly tempering symptoms, does not resolve celiac disease and/or comorbidities associated with celiac disease.

These revelations have only fortified CDF’s commitment to support celiac disease research for FDA-approved treatments and a cure. You are likely aware of iCureCeliac®, our growing and revolutionary patient registry that is fundamentally and positively changing the economics of celiac disease research. We are also proud of an exciting new, strategic initiative, the Young Investigators Award (YIA). We need to keep the pipeline going of talented biomedical researchers committed to celiac disease research. Thanks to a fruitful partnership, CDF has committed $150,000 to fund the North American Society for the Study of Celiac Disease (NASSCD) Young Investigator Award. We are pleased to announce the first YIA winner, Dr. Matthew Shale, a research fellow at Stanford University School of Medicine’s Institute for Immunity, Transplantation and Infection. To understand more about his pioneering research, please watch this video.

It is urgent for our generation, and for generations to come, that we invest right now in cutting edge research to find treatments and a cure for celiac disease. CDF recognizes that urgency and is committed to making well-vetted, strategic research investments. But we cannot do this without you. Please make a tax-deductible donation of $100, $500, or whatever you can afford, to support CDF’s critical research investments, including the Young Investigator Award.

Sincerely,

Marilyn G. Geller
Chief Executive Officer

I agree with this. As a Celiac Disease sufferer myself [About Me], I would like to see an effective cure or therapy for all CD sufferers.

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