Your package of lentils may have a statement proclaiming that lentils are “naturally gluten free,” and it is true that lentils, themselves, don’t contain gluten, BUT when lentils are inspected, they typically contain a certain percentage of “foreign grains,” including wheat, barley, and rye which DO contain gluten!
There are several reasons why this can happen:
Birds, wind, etc spread seeds from other fields. These seed sprout up in the crop of lentils and are harvested and processed along with the lentils.
Grain processing facilities receive grains of all types, and bit and pieces of previously processed grains are often left behind. When the next shipment of grain is processed, those bits and pieces cross contaminate the current batch.
Shipment containers are used to transport grain products from grain inspection sites to packaging facilities. These containers haul massive amounts of grain of all types, and this is an easy way to cross contaminate a whole batch of “naturally gluten free” grains.
Packaging facilities typically process many different types of grains, and unless the facility is a dedicated, gluten-free packaging facility, cross contamination can occur.
How To Make Lentils Safe For Those Who Are Gluten Intolerant
From what I understand, lentils CAN be made safe for those who are gluten intolerant by doing a visual inspection, removing any foreign grains, and rinsing them thoroughly under running water. Here is a statement from Gluten Free Watchdog that explains the process:
“As a precaution, please make sure to pick through dry lentils carefully and rinse them very thoroughly under running water. This should be done regardless of the presence or absense [sic] of a gluten-free claim. Errant grains have been found in lentils labeled gluten-free, certified gluten-free, and not labeled gluten-free.”
Knowing where gluten is hiding is three-fourths of the battle when you are cutting gluten from your diet. Of course, you’ll be ditching the obvious gluten-laden foods like breads, noodles, gravy, cakes, cookies, etc, but did you know that bouillon cubes have gluten in them? What about Pepto Bismol and Advil? No kidding! We have found gluten in some of the most unexpected places, and this is what TOTALLY undermines the efforts of those who need to maintain a zero-gluten lifestyle due to gluten intolerance and autoimmune issues.
Buyer Beware:Some companies issue statements that their products are “naturally gluten free” or they “do not have gluten present in their recipes,” but this is absolutely NOT an assurance that their product is gluten free. In fact, most of these companies include a statement that they DO NOT test for the presence of gluten AND their products are manufactured in a facility that also processes items that contain gluten. What this means to gluten sensitive families is that cross contamination is strong possibility.
This is one item that you may not even think of as “food” because it is not being served at the table but rather as part of a religious service; however the unleavened bread that is typically used for communion wafers contains wheat.
We recently ate at a place with a wonderful gluten-free menu where we have often eaten successfully, but this time we got “glutened.” I feel certain that it was from the sauce on the Steak Marsala, which is typically made with beef stock. I’m guessing the kitchen used beef bouillon to make it. (We let the manager know that this gluten-free dish had been contaminated, but it wasn’t until later that I had enough wits about me to realize the most likely source of the gluten was the Marsala sauce.)
Be aware that some cereals SEEM like they would be gluten-free but aren’t because they have MALT added to them. For instance, the original Kellogg’s brand Rice Krispies and Frosted Flakes both contain gluten because they have malt in their recipe; however Kellogg’s does produce a special gluten-free version so look for those. They are packaged with a totally different look in order to avoid confusion.
Special Note regarding Gluten-Free Cheerios and Lucky Charms: The Gluten Free Watchdog, a gluten testing organization, recommends that individuals with Celiac Disease and other gluten-related disorders do not eat these two products until the manufacturer improves their gluten testing method. (Our family has tried the Gluten-Free Cheerios on several occasions and found that they did, indeed, cause issues. Your mileage may vary.)
Unfortunately, this means that almost all Chinese food is off limits – unless you cook it at home. From what I have read, all La Choy Brand foods are gluten-free, but we use Coconut Aminos due to a soy allergy.
Many of the brands sold in our area do not test for the presence of gluten AND their products are manufactured in a facility that also processes items containing gluten. What this means to gluten sensitive families is that cross contamination is a strong possibility. Don’t be fooled by the “Naturally Gluten Free” comments on these products. Always look for “Certified Gluten Free.”
Hidden Valley DOES test its products and they label those which are gluten free, so look for that marking on the label.
This is a super sneaky one! Oatmeal doesn’t naturally contain gluten, but because farmers grow oats and wheat in the same field in alternating seasons, leftover wheat seed will sometimes spring up and grow along with the oats. When the oats are harvested, the wheat that sprang up is included in the harvest, and this accidental contamination is a major problem! Look for oat products that say “Certified Gluten Free.” These oats are either grown in fields that do not grow wheat in the alternating season OR they are rigorously tested for gluten contamination at the processing facility.
Bob’s Red Mill, Gluten Free, Old Fashioned Rolled Oats: Amazon | Walmart
Quaker, Gluten Free Oats, Old Fashioned: Amazon | Walmart
Rice Krispie treats are also a sneaky hideout for gluten, because rice doesn’t naturally have gluten, but Kellogg’s adds malt for flavoring – and malt has gluten in it. No worries, though, because these Crunchy Rice Rollers are GREAT substitutes!
It shouldn’t be this hard to identify which meds contain gluten and which ones don’t, but we have learned that, just because wheat or gluten isn’t noted on the label, does not mean it is gluten-free. Lately, we are seeing more “store” brands print “Gluten Free” on their labels (i.e., Equate, CVS, Walgreens), but the big name brands have been slow to adapt to the needs of the gluten intolerant population. Always read the label and if you have any doubt, ask for a consultation with the pharmacist. Our local Walgreens pharmacist has been super helpful!
Pepto Bismol Liquid
When you have persistent tummy problems, bismuth is one medicine you need to keep on hand! But from what I have read, the makers of Pepto Bismol do not guarantee their product to be gluten-free. Here are the workarounds we use:
From what I have read, some Advil products used to contain wheat but they have recently removed that ingredient; however the manufacturer still is not willing to state that their products are gluten-free, so we have stopped using those and buy these instead:
We were well into our gluten-free lifestyle before we FINALLY started checking the labels of our shampoo and conditioner products, and we found that a lot of those products contained gluten, as well. I guess that explains the skin problems we were having! The same was true of makeup and several other products. This is such a broad area, I won’t bother making recommendations, other than to say … Check the labels of all health and beauty aids!
We’ll be adding more items to this list as we have time and inspiration! (Bookmark this page and check back from time to time.)
Generally speaking, Rose’s guts were hurting and uncomfortable on a regular basis (especially when we traveled), but doctor after doctor told us that they couldn’t find anything wrong.
Her CBC blood panels always looked “fine.”
Her liver enzymes looked “fine.”
Her endoscopy looked “fine.”
Her colonoscopy looked “fine.”
Her gallbladder function test looked “fine.”
The confusing part was that she didn’t feel “fine.”
Her uncomfortable tummy kept us intensely focused on digestive issues, but none of our efforts ever seemed to provide any insight regarding the source of her pain. She struggled her way through college and eventually graduated and moved away for her first internship – and that’s when her health completely fell apart! But that’s also where her story FINALLY took a turn in the right direction …
Video Capsule Endoscopy
A new doctor with fresh ideas and better testing equipment ran a series of tests over the next two months, including a Video Capsule Endoscopy (VCE), where Rose swallowed a tiny wireless camera (the size of a large vitamin) while wearing a harness with a device which recorded the camera’s journey through her digestive system.
Video Capsule Endoscopy, MayoClinic.Org
With this video, the doctor was able to see extensive inflammation and other damage in the duodenum (which is located near the gallbladder and is likely the cause of her pain in that area) and throughout her small intestine. These images confirmed what the blood work and other tests suggested – Celiac Disease. Thankfully, there was no indication of cancer, and the scaring that was caused by years of untreated Celiac Disease did not appear to be serious enough to threaten a blockage of the intestine.
There is a small risk, which is elevated in patients with Crohn’s Disease and those with strictures in the digestive tract, that the camera capsule could become lodged in the small intestine. For this reason, Rose’s doctor chose to do some preliminary tests before proceeding with the capsule endoscopy. Several days after the endoscopy, a follow up x-ray was done in order to confirm that the capsule was gone. If a capsule camera becomes lodged, it must be removed either by surgery or through an endoscopic procedure, depending on where it is stuck.
Greatly Improved Health
Years and years of unanswered questions and unresolved health issues were finally answered! Rose was treated with two rounds of steroids to bring the extreme inflammation under control. We understood the risks of steroid use, but there are times when there is no better option available.
We bought her a Nima Gluten Sensor so that there would be no more guessing about what has gluten and what doesn’t, and she began a very strict gluten-free lifestyle which she will have to adhere to for the rest of her life – because just eating less gluten does not equal “healthy” if you have an Autoimmune Disease that reacts to gluten!
Moving forward, I began researching the best possible healing strategies for those with Celiac Disease and Gluten Intolerance. I’ll be sharing more about the steps we have taken in future posts and in our Celiac, Gluten Intolerance, And Wheat Allergy Support Group. We invite you to join us there as we encourage and inspire each other in this journey!
The first step is to take a two week break from eating out. I know that is a hard pill to swallow because we all live busy lives and eating out is a real lifesaver since we rarely have time to prepare every-single-bite we put in our mouth! Plus, eating out is our social outlet! Church groups, ball teams, and play days with the kids often end up at a restaurant. But for two weeks, take a pass on eating out – even if the restaurant offers a gluten free selection. I’ll explain why shortly.
Next, check the labels of absolutely EVERYTHING you eat. If it says “Gluten Free” or “Certified Gluten Free,” you can generally trust that it’s safe. If it says, “Manufactured in a facility that also processes wheat,” pass it up for the same reason you are taking a pass on eating out – cross contamination.
What is Cross Contamination?
If you are new to the idea of gluten intolerance, you are almost certainly going to be surprised at how little gluten it takes to do damage the gut of a person with Celiac Disease. Even the smallest amount will set off an autoimmune response that, for some CRAZY reason, makes it attack the villi in the gut. This attack causes “blunting” of the villi, which basically means that it kills the greater part of the villi and leaves the lining of the gut smooth and raw. When this happens, the lining of the gut is irritated by almost everything that is put into it!
Every single time a Celiac eats gluten, the villi is damaged in this way, and every single time, it has to regrow – a process that researchers say can take up to a year in severe cases. In our experience, we have found that it takes about two weeks for the most prominent symptoms (pain, bloating, and “bathroom” drama) to settle down and return to a more normal state, even if the villi has not completely revived in that amount of time.
Because it takes only a TINY amount of gluten to cause this “killing off” process, cross contamination is just as damaging as eating an item made with gluten. Cross contamination happens when gluten free food is prepared on the same countertop or conveyor belt as food that contains gluten. Small particles of the previously prepared food finds its way into the next food, and BAM, you have hidden gluten! THAT is why it is important to read the labels on ALL products and pass on it if the label indicates that it was processed in a facility that also process gluten.
LESS gluten does not equal “healthy” if you have an Autoimmune Disease that reacts to gluten! Your goal must be ZERO gluten.
For the same reason, eating at restaurants without getting cross contamination is a BIG challenge. When gluten free foods are prepared on the same countertop as regular foods, cross contamination is going to be an issue. If foods like french fries are fried in the same fryer as breaded chicken strips, cross contamination is going to be an issue. If a gluten free sandwich is made with the same utensil or the same jar of mayo as sandwiches that contain gluten, cross contamination is going to be an issue.
You may find a few restaurants that can be trusted, but our experience with eating out has been very discouraging due to accidental glutening followed by two weeks of pain. For this reason, we always suggest that newbies take a two week break from eating out. That will allow the gut time to heal a little, and it will also give you time to carefully consider where you might find a safe meal away from home.
Pro-Tip #1: We typically opt for a baked potato if we are eating out because that seems to be the least likely to be contaminated. Wendy’s has a good one and so does Sweet Peppers Deli and McAlister’s Deli.
Pro-Tip #2: In the early days of our diagnosis, we would eat bunless burgers from Wendy’s and grilled chicken nuggets from Chick-Fil-A, thinking they would be gluten free. We eventually tested both of these items and learned that they BOTH contain gluten – either in the seasonings or in hamburger filler. So don’t think you’re getting something that is gluten free just because you remove the bun!
Our Biggest Mistake
Our biggest mistake is forgetting to check EVERY label. For example: One day, Rose and I spent a whole HOUR reading labels on everything we bought from Walmart, but on our way out, she picked up a small bag of yogurt covered raisins. We FORGOT to check that label, and on the way home, we ate a handful or two. She was in pain before we even got to the house! And of course, that took two weeks to heal.
Encouragement Along The Way
I know it sounds overwhelming, but it is possible to find things that don’t contain gluten. You will get the hang of it! There are more products out there now than ever before. Plus, there are some great support groups where we can learn from each other and speed up our journey toward better health. Rose and I regularly participate in this one: Celiac, Gluten Intolerance, And Wheat Allergy Support Group
Even though she shared her on-campus apartment with roommates who understood her gluten intolerance and were careful to keep their food separate from hers, gluten cross contamination is always a risk in a shared kitchen, and before long she was having problems with inflammation that caused stiff, swollen fingers which made writing her exams difficult. Thankfully, her instructor allowed her to speak her answers and a student-worker penciled them in for her. Also, her ankles swelled and her hips became so stiff that she had trouble walking across campus, but Continue reading →
As I’ve said before, tummy issues aren’t a “lovely” topic of discussion, but when you are new to Celiac Disease and Gluten Intolerance, you have questions – LOTS of questions! Because our family has been dealing with this issue for more than two decades, we have gained valuable insight regarding the disease, it’s symptoms, and how to manage it on a daily basis, and we hope to answer some of your questions by telling our story and sharing what we have learned along the way.
How it feels to have Celiac Disease.
Rose has had tummy troubles since she was born, but we didn’t have a “name” for it way back then. Our journey to find a proper diagnosis was complicated, costly, and FRUSTRATING because, until recently, the medical community in our area was either unfamiliar with Celiac Disease or hesitant to diagnose it … I’m not sure why, but that’s a rant discussion for another day! Continue reading →
I can’t tell you how much money we have spent on Gaviscon, Tums, Prevacid, Zantac, Nexium, etc! In our home and cars and purses, there has ALWAYS been a little medicine bottle or baggy with an assortment of over-the-counter meds that we hoped would help if a “situation” arose that day. No kidding … every vacation and every special celebration meal has included hurting stomachs either during the event or immediately after it. Continue reading →