Outrageous price gouging and iffy labeling of gluten-free food.

I really don’t get why people jump on fad diet bandwagons. The gluten-free diet is necessary for about 1% to possibly 2.4% of the population. Of that 2.4%, 72% do not have celiac disease. Several sources would indicate that up to 25% of the population eats gluten-free some of the time.  Why?  Gluten-free is not a weight loss diet, it is not cheap, it is not healthy (it lacks fiber and necessary nutrients). These fad followers have made a joke out of my medically necessary diet.

Restaurants don’t take us seriously when we ask about cross-contact/cross-contamination.  Manufactures are slapping “Gluten-Free” labeling on all sorts of products and then in tiny, itty bitty fine print, hidden somewhere on the packaging they add the clause: “manufactured in a facility, or on equipment that uses wheat”. This disqualifies their product as being safe for a sensitive individual with Celiac disease or at least confuses the heck out of us, wondering if it is or is it not safe for us to consume.

Please give me back my gluten-free food medical prescription. 

Here are two label examples seen this week.  My go-to flour substitute has doubled in price over the last 5 years. One pound of my gluten-free flour costs $4.  The equivalent wheat-based flour can be purchased at a cost of $0.25 per pound.  Gluten-free flour is 176% more expensive than wheat flour. 

Here’s an example of a product I got excited to see labeled gluten-free at Costco this week.  I love potato salad but don’t always think far enough ahead to make it.  One, I need the raw ingredients on hand and second I need to prepare, cook and cool the potatoes well before I wish to assemble the salad, and then there’s the cleanup. As you can see, this San Francisco potato salad is clearly labeled on the front as gluten-free.  How many times have I bought a gluten-free labeled product, only to discover later that there is some fine print disclosing that it really maybe isn’t truly gluten-free? 

I had hope that when the FDA passed the new labeling law in 2014, it would have cleared things up. That was the goal at least. I keep hearing about too many products being recalled under the labeling law and I can’t find anything about that little itty bitty disclaimer “processed on equipment or facility with wheat”.  What does that mean to a Celiac?  


See the differences?

The cost to eat gluten-free has become a big scam. The only winners are the corporations.

Notice anything different between these two packages? Look at the red dots. Look at the package weights. Compare to wheat version below.

Yep, the count has gone down from a mere 8 to now just 6. This package costs around $6.00. This change happened last month. And the tortillas are even thinner. Do the math, ounces/count.

Compared to standard wheat tortillas, count of 10 for about $2.25. And each tortilla is slightly bigger at a cost of about 22 cents each versus the gluten free version at a cost of about a dollar EACH! Are you kidding me? A difference of 4 to 1. Well, fewer soft rolled burritos in my life, back to scooping the filling with tortilla chips.

So, don’t be offended when you ask for just a taste of my gf cookie or muffin and I say “No!”.

Why would anyone choose to eat gluten free unless it is a medical necessity?

Gluten cross contact – who am I fooling?

I try to convince myself that food I don’t prepare is probably safe. Who am I kidding? Only me!

I tell people about ingredients to watch for, things to do to avoid Cross-contamination, so they can “believe” they can “feed” me. But I’m only jeopardizing myself. I do want to believe I’m not getting Cross Contamination. But, I know I am being CC, which really is “Cross-Contact”.

I feel sometimes only slight indications or just off a bit and always try to tell myself “oh, it must be something else.” And NO, it’s not “just in my head.” That’s BS. It’s also what everyone is told until something is figured out. But when have you ever heard anyone ever say after the fact “Oh, I guess it was not really just in your head. Oh, you really were experiencing something.”  Until science catches up with reality of what a Celiac experiences, the general population will continue to doubt us and think it is “all in our head.”

Yes, this gluten restriction is hard, really hard to live with.

Reminded this past week why I hadn’t eaten “out” in 2 1/2 months. It’s definitely like playing Russian roulette, except I lose every single time, no matter what I tell myself.

Here are some answers about CC, cross-contact. And, NO, you can’t destroy gluten by burning it off or heating it. Baking bread doesn’t “kill” gluten. Gluten is a protein (not a type of bacteria) and proteins cannot be “killed off” using heat or disinfecting agents like most bacteria can be. Read more here on where and how CC occurs.

CROSS-CONTACT – beyond celiac

Celiac disease (CD) patients adhering to a gluten-free diet (GFD) are exposed frequently to low levels of gluten that contribute to symptoms and persistent intestinal histologic damage.

These surrogate biomarkers of gluten ingestion indicate that many individuals following a GFD regularly consume sufficient gluten to trigger symptoms and perpetuate intestinal histologic damage. Link to 2018 scientific paper here:

Determination of gluten consumption in celiac disease patients on a gluten-free diet

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Thank God My Toilet Bowl Cleaner is GLUTEN FREE!

Oh my gosh, I am so relieved to know that my TOILET BOWL CLEANER is GLUTEN FREE.  I plan on drinking my toilet water! NOT!

So, let me get this right, my bacon and ice cream, because they are meat and dairy products, DON’T have to be labeled if they are processed on equipment or in a facility with wheat, or contain added gluten according to the FDA. But my toilet cleaner is labeled?  


Guess what? Processed, even just sliced and packaged products of meats and ice cream are known to contain enough gluten to make me sick.

I’ve been having vague tummy issues so I’ve been trying to narrow it down to what I’ve eaten lately.  In doing so, I emailed Trader Joe’s the following:

How can I verify if products are produced in a gluten free facility? Are your Uncured Bacon Ends & Pieces and French Vanilla Ice Cream Gluten Free?  They are on not on your Gluten Free Online pdf list.  I am Celiac and am trying to figure out what I am reacting to.

Trader Joes Reply: Thank you for contacting us with your product inquiries.  In response, both of the products referenced do not contain any gluten ingredients, however, they have not been tested for possible cross contamination.  Therefore, we do not make a “gluten free” claim for these products.

They didn’t answer the first part of my question:  Are they produced in a gluten free facility?

Duh, I can read the ingredients label and know that gluten wasn’t added but I’m asking about cross contamination.

Trader Joe’s used to be one of my favorite stores.  But over the last couple of years I find I am buying fewer and fewer of their products for this very reason.

Back to making more homemade ice cream, homemade granola, my own baked goods and buying real food that I can identify the species: a banana, an egg, a zucchini etc.  I’m realizing that meat “if packaged” may not be safe.  I can usually get a straight answer from the butcher at the local market.  Did you know that a packaged  “fresh” turkey or packaged bacon can contain gluten?  And as mentioned, legally  ice cream doesn’t need to be labeled.  Dairy and meat are exempt from the FDA lbelling law of the top 8 allergens.


Gluten Lesson Learned AGAIN!

Lesson Learned AGAIN!  I should be blogging about my vacation but here it goes again….

Gluten? Is it hiding in that prepackaged Tri-tip sold at Costco?  The ingredient list looks fine. But the packaging doesn’t say anything about allergens.  Ok, google the product name and gluten free.  Nope, don’t come up with anything. Hmm, there’s a phone number on the package. Ok, I’ll call.  The person on the other end of the line, says, “I’m pretty sure it’s fine, it’s gluten free. But let me check and call you back”.  (This is a local distributor in Huntington Park, California)

This whole Tri-tip issue came up because on our recent travels we stopped to visit some friends who wanted to feed us/me.  They tossed a prepackaged Tri-tip from their Costco in Medford, Oregon onto the grill. The brand sold in Oregon is pre-packaged but WAS labeled Gluten Free.  Unfortunately, after inquiring about cross contamination, I knew I could not eat their offerings.  They have heated wheat rolls on their bbq and clearly they have gluten food products in their kitchen.  I’m really getting tired of trying to explain to kind friends why I can not eat their offerings.  NO, pouring boiling water over your cutting knives and utensils DOES NOT MAKE THEM GLUTEN FREE. Maybe washing several times and scrubbing with a never before used scrubber would work. I don’t really know how to make something gluten free except to NEVER expose it to gluten.

I had not realized until today that meat products are exempt from the labeling law.  What the HELL?

Food Labeling Requirements: On August 2, 2013, the U.S. Food and Drug Administration (FDA) published a new regulation defining the term “glutenfree” for voluntary food labeling. This new federal definition standardizes the meaning of “gluten-free” foods regulated by the FDA. Foods regulated by the U.S. Department of Agriculture, including meat and egg products, are not subject to this regulation. The regulation requires that any food with the term “gluten-free” on the label must meet all of the requirements of the definition, including that the food should contain fewer than 20 parts per million of gluten. The FDA rule also requires foods with the claims “no gluten,” “free of gluten,” and “without gluten” to meet the definition for “gluten-free.”

Well, I finally decided while walking around Costco while waiting for phone confirmation if the Tri-tip in my cart was safe, to not buy it.  I wouldn’t receive the confirmation phone call until much later, after I had left the store.

The answer from the company, the certified Angus Beef, Steakhouse Beef Tri-Tip from American BBQ Company distributed by www.GWFG.com is not gluten free.

Once again, an excellent reminder of why I should NEVER eat other people’s food unless they are also Celiac and their kitchen is 100% gluten free.

I was a bit extra cautious this time because recently I had once again slipped up on my diligence of being safe.

I hadn’t been to a Starbucks in years except to purchase a bottled by Coke Cola Starbucks Mocha Frapuccino, which are certified gluten free.  It had been my birthday the day before and I still get those kind emails from Starbucks saying I could get a free drink “on them” for my birthday.  We were traveling and had a very early start.  I was sleepy.  I had a free drink gift certificate.  I goofed up.  I stopped at a Starbucks and redeemed my free birthday coffee certificate.  I splurged.  I got a vanilla latte.

Oh no!  That’s right, Starbucks coffee’s are NOT GLUTEN FREE.  NO PREPARED DRINKS CAN BE GUARANTEED GF AT STARBUCKS. Repeat to self, Starbucks coffee’s are NOT GLUTEN FREE.  Not even a plain regular cup of coffee.

In about thirty minutes after thoroughly enjoying my vanilla latte my stomach began to feel a little off.  Hmmm……  google Starbucks again and gluten free.

Damn, the mix Starbuck’s uses for the vanilla flavor contains gluten.  Oh, and a reminder, ALL of Starbucks teas contain gluten.  Yes, you read that right.

Lesson learned.  Lesson learned until I forget AGAIN!

Food From a Celiac’s Point Of View

Food, it sustains us.

Food, it can even be enjoyable to eat.

Food, shouldn’t be feared.

Food, consumption shouldn’t be a chore.

Sometimes, I’m just sick of food.

Sometimes, I really don’t want to cook.

Sometimes, I hate having to think of what to eat.

Sometimes, I wish I could eat anything, anywhere, prepared by anyone.

I know folks mean well when they offer or prepare food for me.

But how can I explain the risks of cross contamination? 

Your cutting board has traces of gluten. Your grill has traces of gluten. Your kitchen sponge and dishtowels have traces of gluten. Your pots and pans may have traces of gluten. Did you remember to wash your hands after you ate that cracker?

Yes, you read the labels. But did you buy the product labeled “gluten free” or just the one that didn’t list any obvious gluten ingredients? Are you sure you know all the ways gluten is hidden in common everyday foods?  What? Gluten in tea? salad dressing? ice cream? cheese? sausage? lunch meat? canned vegetables? soup broth? The list is shockingly long.

Did you google the company to verify if the product is produced on a wheat free production line or wheat free facility?  I do.  Every time I buy a processed food product I check the label, even if it was labelled safe last time.  If I can’t find a satisfactory answer, I don’t buy it and I don’t eat it.

How can I explain what gluten does to me? Even the tiniest trace amount can cause me to not feel well.  I may need to know where a bathroom is for sudden tummy issues.  I may get a migraine that lasts for a couple of days. Afterwards, I may be exhausted for a few days and suffer from brain fog. My joints will hurt. I may feel bloated.  The list of symptoms is long.

Please don’t be insulted when I bring my own food.

I’m sorry I have to pick the place if we eat out.

The list of restaurants that claim they could fix me gf is getting very short.  I may eat at a place 2 or 3 times, but then the next time I may feel I was “glutenized”. Seems like every place I thought was safe eventually fails.  This includes restaurants that have gluten free menu’s.  It is one thing to offer gluten free foods. It is totally another thing to understand how to prepare food and keep it gluten free.  There are extremely few restaurants that have been trained in gf food prep. It includes a separate prep area, separate pans and utensils and safe food handling techniques.

Please try to understand why I don’t register for lots of events that provide food. I can’t eat the food included and no where have I seen events let you pay a reduced price to opt out of the food offerings. Why should I have to pay the same price and or even more if I need the gf option?

And yes,the food at events looks and smells so heavenly. But, having to ask about ingredients and prep area questions and then to wait for answers and clarification just make me look like a “snobbish jerk”. But unlike a lot of people who “CHOOSE” to eat gluten free because they think this is the latest and greatest fad diet, THIS IS NOT A CHOICE FOR ME.  THIS IS SURVIVAL.

When these people make a huge fuss at a restaurant to have a gf meal and then order CAKE for dessert, they hurt Celiacs.  Just like when someone uses a fake service dog or try’s to pass their pet off as a service animal, they hurt true users of highly trained service animals.  And then it comes down to faith.  Can I have faith and trust that the chef and staff “get it” and will do everything possible to make sure the food they serve me is safe.

Please, don’t tell me it is in my head or maybe “you just exercised too much” or “you’re dehydrated”. Or “it can’t really be that bad.” Or “you can’t really be that sensitive to gluten”. I have lived with this disease my whole life and with an understanding of the diagnosis these past 5+ years.  I now know, and have been validated by others with the disease, this is not in my head. I’m not crazy. I’m did not make it up all those years I was not feeling well.  How do I know?  Because now that I eat gluten free, I feel 99% better most of the time. Of over 30 plus diagnosed medical conditions that I had when eating gluten, now eating gluten free, most all of those ailments and conditions don’t occur regularly anymore.

I know when I’ve been “glutenized” or cross contaminated with gluten. Only I can understand how I feel.  Please be patient with me while I fret over where my next meal will come from.

Don’t think I can’t read your body language, your eye rolls, tsk’s and sighs.  I know I frustrate you and you wish I’d just get over it and deal with a little gluten.  Tell that to someone with a nut, shellfish or other food allergy.  My symptoms just aren’t as visible as theirs, but they are no less serious.

Give thanks that you don’t live with this disease.

I give thanks for the gift of a second chance at life.  I give thanks for the most amazing husband that does his absolute best at helping to keep me healthy and gluten free.  I give thanks for the friends who understand I still want to socialize, but I don’t want to eat their food.  I give thanks for the friends who still include me in dinner party’s and other food centric social events.