Do you think you’re ready to go gluten-free?
Don’t go gluten-free before you read this article. OK?
There is so much you need to do and know before you dive head first into the gluten-free diet, and there are many long-term repercussions of your choices and actions if you start now without doing a few important things first.
Going gluten-free is a MAJOR lifestyle change. It should not be something entered into lightly.
Additionally, many people start a gluten-free diet without ruling out serious conditions first and without getting a proper diagnosis. Not every digestive symptom is related to a gluten disorder and some symptoms could be the sign of a serious illness that might require treatment above and/or beyond the gluten-free diet.
I know telling you to NOT go gluten-free sounds counterintuitive to what I preach, as I’ve revealed that gluten causes an inflammatory response in most people who eat it; however, I truly want you to consider all your options, get a proper diagnosis, and do the gluten-free thing right before you enter into a gluten-free diet for life.
In other words, I’m telling you not to go gluten-free YET.
If you have celiac disease or a confirmed gluten sensitivity (or wheat sensitivity or allergy), you need to go gluten-free immediately. That is what happened with me. I started my lifelong gluten-free diet immediately after learning I had celiac disease. If you have celiac disease, proceed with the gluten-free diet.
But for the rest of you who are choosing to go gluten-free to see what happens without taking the time to rule out serious conditions or get a proper diagnosis, you must do the following FIRST.
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(1) Get Tested for Celiac Disease
I believe everyone with symptoms of celiac disease should get tested for celiac disease before going gluten-free. The kicker is that in order to be tested for celiac disease, you MUST be eating gluten to get an accurate result.
To get tested for celiac disease, your doctor will first do a simple blood test. The blood test is 99 percent accurate if a positive celiac test is present, but there are many false negatives. In other words, if you have a positive blood test, you most likely have celiac disease, but if you have a negative test, you should consider undergoing an endoscopy procedure to biopsy your small intestine. The biopsy will look for things like villi atrophy and damage to your small intestine consistent with celiac disease. (Note: A positive blood test also should be followed up with a biopsy as well in order to give someone a gold standard confirmation of their diagnosis.)
If you have celiac disease, you obviously must go gluten-free right away; however, let’s take a step back. Maybe you’re wondering why it’s so important to have a proper celiac disease diagnosis in the first place. You might be thinking, “If I feel better not eating gluten, what does it matter if I have a proper celiac disease diagnosis or not, right?”
I know you might feel that way, but here are four key reasons you need to get tested for celiac disease before you go gluten-free:
1. Many people don’t take their self-diagnosed, self-imposed gluten-free diet as serious as someone with celiac disease. These gluten avoiders are more like to cheat on their gluten-free diet (“Just a little gluten won’t hurt,” is what I hear often), or they don’t worry about things like cross contamination in the deep fryer, for example.
However, if you have celiac disease, even a crumb of gluten will trigger an immune system attack of your small intestine and will continue to damage your body and keep you feeling sick. You might give up on your gluten-free diet because you think it’s not working, but the reason it isn’t working is because you’re still ingesting small bits of gluten and not taking your diet as serious as someone with celiac disease would take it.
2. You want to repair your body. If you have celiac disease, your gut is in shambles and must be repaired. You are at greater risk for acquiring other autoimmune conditions, as well as certain kinds of cancers, so knowing is the first step in treating the disease, as well as preventing and screening for future disorders.
Also, you have had difficulties absorbing vital nutrients from your food, likely for many years, if ever, and you may need to address moderate or severe nutritional deficiencies differently. If you have celiac disease, you must begin healing and nurturing your body in a different way than someone just going gluten-free because it seems like it might help them.
3. We need ACCURATE statistics. Researchers need to better understand the prevalence of celiac disease in the U.S. and worldwide. Right now, about one percent of the U.S. population has celiac disease, but researchers in Denver say they believe the rate of celiac disease to be “more than 3 percent” based on tests done on 1,339 babies born in Denver who were deemed at risk of developing celiac disease. (Source: “The Celiac Surge,” June 1, 2017. The Scientist) This means the prevalence of celiac disease may be much higher than experts initially thought and that more screening and diagnostics can help us get a more accurate picture of this potential epidemic.
Remember, as the number of cases of celiac disease rise, so does interest from researchers, doctors, pharmaceutical companies, etc. We are starting to see researchers develop celiac disease treatments, and I anticipate more money and time will be spent understanding and treating celiac disease in the future… but only if it affects enough people and, unfortunately, only if makes financial sense for companies to do so.
Last year, researchers at Rutgers University found the rates of celiac diagnoses stagnant for the first time since 2009. However, this number is skewed because so many people are self-diagnosing their conditions and choosing to follow a gluten-free diet without FIRST having ruled out celiac disease. When you don’t first rule out celiac disease before going gluten-free, you make it impossible to determine the true prevalence of the disease… and worse, researchers might think the number of cases is decreasing and believe the disease is resolving itself, when we all know that the real numbers are more likely than not on a steep incline.
4. You want to be eligible for future celiac disease treatments. If you have a confirmed celiac disease diagnosis, you will be eligible for future treatment options should they become available. However, if you don’t have a confirmed case of celiac disease, and let’s say a cure or viable treatment option is found, you may have to go back on eating gluten for many months before you can get tested for celiac disease. (Remember, you must be eating gluten for several months before you can get an accurate diagnosis.) No one on a gluten-free diet (who is already feeling better) wants to go back on gluten and feel horrible again. If I’ve caught you before you started the gluten-free diet, get tested for celiac disease. Please, do it right from the start so you don’t have to kick yourself later.
Please note that I do not advocate for anyone who is gluten-free and feels better to go back on gluten for the sake of getting tested for celiac disease. This article is intended for anyone who is contemplating the gluten-free diet and hasn’t ruled out celiac disease quite yet. I don’t want anyone to feel sick or exacerbate their symptoms.
(2) Get Tested for Gluten Sensitivities and Wheat Allergies, Too
If you’ve ruled out celiac disease, you should then get tested for a gluten sensitivity and a wheat allergy. Your doctor can direct you on how to best do that.
A gluten sensitivity — called non-celiac gluten sensitivity (NCGS) or non-celiac wheat sensitivity (NCWS) — can be detected with a simple blood test (Cyrex Labs currently has the gold standard test but you must talk to your doctor about getting tested via Cyrex. You can also do an at-home food sensitivity test via Everlywell, although it does not provide the same level of detection as Cyrex Labs).
Just like with celiac disease, you must be eating gluten in order to get an accurate diagnosis, so that’s why I encourage you to get tested BEFORE going gluten-free.
Here’s more food for thought:
An Italian study in 2015 of 35 people found that two-thirds of people self-diagnosed with NCGS showed no reaction to gluten when it was reintroduced after they had been already following a gluten-free diet. This means you could be following a strict gluten-free diet for no reason – and that something else might be the real cause of your digestive maladies.
The only way to know for sure is to get tested before you go gluten-free. Going gluten-free means you’ll be making a serious, life-altering change to your diet. You owe it to yourself and your family to get an accurate diagnosis first and foremost.
(3) Get an Accurate “Other” Diagnosis
If you’ve successfully ruled out celiac disease, a gluten (or wheat) sensitivity and a wheat allergy, but you still suffer from digestive, skin or other chronic ailments, continue talking to your doctor to work towards uncovering a proper diagnosis. Diarrhea, for example, can be caused by any number of things, including a parasite infection, and all options should be looked at thoroughly before going on a gluten-free diet. Chronic pain or itchy skin conditions, for example, may be caused by an allergy to something specific. Your doctor might uncover other autoimmune conditions that must be treated with a specific regimen in addition to a gluten-free diet. (Read Autoimmune Disease and the Undeniable Gluten Connection.)
You might have other conditions, like small intestinal bacterial overgrowth (SIBO), candida or H.Pylori (read this detailed article from Holistic Help about the symptoms of each of these conditions), which might need to be treated with a combination of dietary changes and possibly antibiotics or antifungal medications prescribed by your doctor.
(4) Clean Up Your Diet
If you have ruled out celiac disease, a gluten sensitivity and other serious conditions, you might want to look at all the foods you’re eating that might be triggering your symptoms. Don’t be quick to blame gluten – as your digestive issues could be caused by any number of foods – or poor eating habits like excessive soda or sugary beverage drinking, excessive caffeine or sugar consumption, or lack of vegetables and essential nutrients in your diet. (You can do an at-home food sensitivity test to find out your reaction to nearly 100 foods commonly found in the American diet. Please follow up your food sensitivity tests with an elimination diet.)
Other causes of digestive maladies can include things like low activity and high stress. Perhaps you need to work out more, de-stress your life, sleep more (or better), and/or add more physical activity into your daily routine.
Also consider cleaning up your diet by taking out heavily processed foods, convenience packaged foods, and fast foods. Avoid genetically modified foods, chemicals, preservatives, artificial ingredients, food dyes, additives, etc. Instead enjoy real, whole foods that come from the produce section, not the packaged goods aisle. Adding whole foods to your diet WILL have real impact on your health. (If you have celiac disease or a gluten sensitivity, you also need to clean up your diet in order to heal).
Make lots of delicious green juices to soothe your digestive track and get a fast intake of essential nutrients. Take a high quality probiotic (50 billion CFUs or higher) to begin healing your gut by repopulating it with beneficial bacteria. Add a fish oil supplement to control inflammation. And take a daily multivitamin to ensure you’re getting the nutrients you need. (Read: How I Healed Myself from Celiac Disease.)
(5) Once You’re Ready to Go Gluten-Free…
Now that you’ve ruled out serious conditions and you’re eating a cleaner, healthier diet, I encourage you to remove gluten from your diet. It’s not good for you anyway and is very hard to digest. In fact, gluten is so hard to digest that it’s been widely linked as a key contributor to leaky gut syndrome.
Leaky gut is caused when undigested food particles break through the thin walls of your small intestine and enter your bloodstream (only nutrients should be entering your bloodstream, not food particles). Over time the damage to your intestinal wall allows food particles to “leak” out of it and into your bloodstream, causing a variety of maladies inside your body, usually wherever you are genetically weak.
However, before you take the gluten-free plunge voluntarily (i.e., not because you have to like someone with celiac disease or NCGS has to), remember these three things:
1. Avoid Gluten-Free Packaged Foods
Just because it’s gluten-free doesn’t mean it’s good for you. Gluten-free foods are often riddled with white flours and sugars – and many of them still include cheap, artificial and genetically modified ingredients too (although some GF products do offer up cleaner ingredient labels).
Try to eat more meals at home and focus on eating real, whole foods as much as possible while adding in a few packaged foods here and there to aid in your home cooking. For example, I love meatballs, but now I use gluten-free breadcrumbs instead of wheat-based breadcrumbs. Enjoy things like gluten-free breads, cookies, pizzas, bars, etc. in moderation. These packaged products are not going to aid in your healing.
2. Don’t Let Gluten Supplements Fool You
There are a slew of digestive enzymes on the market that tell you they will break down gluten upon accidental ingestion. I write about them in this article. These enzymes and supplements do NOT give you permission to cheat on your gluten-free diet… they are truly for times when you eat out and realize you’ve been accidentally glutened. Strict adherence to the gluten-free diet is mandatory if you want to see any benefits from your efforts. A little gluten will undo all your hard work, even if you’re only voluntarily gluten-free (i.e. no serious condition like celiac disease). Don’t fall into this trap.
3. Get Nutrition Advice and Help
When you’re ready to start a gluten-free diet, it’s important to get help so you do it right. Consult a nutrition coach – like me – to help you get started. A nutrition coach can help you make realistic, lasting changes to your diet and will put you on the path to healing and feeling your best self again.
Also, your coach can help you recreate some of your favorite foods in a gluten-free and healthier way, and he or she will ensure that you follow a gluten-free diet to the strictest level. (Gluten is hidden in everyday products, and if you want to give this lifestyle a fair shake, you need to be serious about being gluten-free.) A nutrition coach can give you the guidance and accountability you need to make these lasting, healthful changes in your life.
Please remember, don’t go gluten-free until you’ve ruled out celiac disease, NCGS and/or a wheat allergy. Being gluten-free is a life-changing experience and something that should not be entered into lightly. Do your due diligence, explore every avenue, and then proceed cautiously optimistically into what I believe to be the wonderful world of gluten-free living.
Ready to get started on your gluten-free diet? Read A Beginner’s Guide to Being Gluten-Free.
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