Going Gluten-FreeAugust 10, 2018

Online Gluten-Free Support Groups: Supporting Misinformation?

Comments (2)

Posted by Erica Dermer

When I first went gluten free, I attended several different in-person support groups. Some were helpful, and some were not. It was interesting to see how the tone differed so vastly between the groups. One was positive - focusing on all the great new products available and sharing positive stories. Another was negative, focusing on how difficult life had to be as a celiac. After a while, I slowly stopped attending. I shifted to online support groups - on top of social media sites like Facebook. However, I struggled with the constant barrage of misinformation. Now, years later as a blogger, I spend a chunk of time each day busting myths online. I’m not the only one, as readers commented that they too have encountered many myths online. Here are some of the top myths about gluten-free eating that continue online.

online gluten free support groups

Erica Dermer

Is It Gluten? MSG, Maltodextrin, and More

Any time someone posts “is maltodextrin safe,” or any other question about a strange sounding ingredient, comments come out in droves that claim the ingredient makes them sick, and then must be unsafe and not gluten free. We understand that it’s a little scary to count on reading ingredients for your health, but science doesn’t need to be scary! MSG is safe, and so is maltodextrin, unless wheat appears as an allergen. If you have a question about an ingredient, go to trusted sources, not a Facebook group, which are filled with misinformation. Check out Beyond Celiac’s “Is It Gluten Free” and our website for more information about ingredients and products that might be questionable.

It’s Safe! Sourdough Bread and More

There have been several posts from readers that attend local farmers markets and food fairs and find products that claim to be safe for those with celiac. These products are made from wheat or sourdough, and the people who make it claim that it’s safe for celiac. Either they have done something to the wheat, or they claim fermenting the bread kills the gluten. That is untrue. Only gluten-free bread is safe for those with celiac. No bread made from wheat* should be consumed by celiacs or those with a wheat allergy.

*Please note that there are very small amount of products made with CODEX approved wheat starch that is processed to remove gluten, and is generally considered safe for those with celiac, but unsafe for those with a wheat allergy. This ingredient is mainly used in European products. 

Made in a Shared Facility

Did you know that phrases “made in a shared facility” and “made on shared equipment” are not mandatory labeling? Manufacturers are not legally required to disclose on their label if a product is “made in a facility” or “on shared equipment” with an allergen - it’s all voluntary. This causes confusion for people who see a certified gluten-free item that is “made in a facility.” Some have thrown out perfectly good food because they didn’t understand the warning. Just because an item has this warning, it does not mean that it’s unsafe, especially if certified gluten-free. A gluten-free certification symbol means that it’s been verified as safe from a third party. It, however, is legally required to call out allergens (either bolded in the ingredient list or at the end in a “contains” statement). However, keep in mind that since only wheat is a top allergen, barley and rye could still be hidden in the list of ingredients. 

Chiropractors Can Cure Celiac?

We see many doctors - naturopaths and chiropractors are the most often noted - that claim they can “cure” celiac disease. A gastroenterologist should properly test you for celiac disease and monitor your progress with the disease. There is no cure for celiac, only a life-long gluten-free diet. While there may be pharmaceutical interventions in the future, there are no cures now. 

It’s Not Always Gluten

There are a lot of “I had xyz product and felt sick afterwards - it has gluten!” comments online. The product mentioned in the post is often certified gluten-free or knowingly safe to the majority of the community. As celiacs, we have to remember that we’re all different and we all have different food sensitivities. I, for example, am sensitive to dairy, and while something with dairy makes me sick, it would be fine for you. It’s easy to be quick to blame gluten, when in reality, it may be another food sensitivity or personal issue with a protein, sugar, or carbohydrate in a food. Work with a board certified allergist to find true food allergies, and work with a dietitian or nutritionist for elimination diets for food sensitivities, or issues with FODMAPs.

GMOs Aren’t The Enemy

Celiac disease has been around for a very long time. Longer than GMOs. While modern wheat is dramatically different from wheat grown in 1900s, peoples’ issue with wheat was around way before modification of wheat, or even companies that genetically modify food. Regardless of your feelings about eating GMO or non-GMO foods, it should not factor into celiac disease management. 

A Little Won’t Hurt

We’ve heard everything - from “it’s okay to have cheat days,” or “my doctor said it was okay if I had a cookie every once and a while.” It’s difficult at first, I understand! It’s easy to think that you can cheat every now and then and just start fresh the next day. However, a gluten-free diet is a medically necessary diet, not a fad diet to come off and go back on when the timing is right. Consuming gluten long term can lead to some very serious medical consequences. It’s never okay to cheat on a gluten-free diet and knowingly consume gluten, unless it’s under medical supervision for a gluten challenge.

While online support groups are a great way to meet fellow celiacs, to trade tips and tricks about life with this disease and the gluten-free diet, it’s important to take advice with a grain of salt. You should not take medical or nutritional advice from those in an online support group and should always consult your doctor if you continue to have symptoms on a gluten free diet, or if you develop new symptoms.

Comments (2)

Great article! I'm curious about your thoughts on non-celiac use of a gluten free diet (or reducing gluten) for purposes of reducing inflammation in the body? Do you have any experience with this or resources to help?

Posted by: CoachTammi | August 14, 2018 7:21 AM    Report this comment

Thank you, thank you, thank you!!!! I can't tell you how many online support groups I have left for this very reason. Everyone thinks they are an expert and none of them should be giving medical advice, but so many do in these groups. When I point out people should be talking to their doctor about the issues, I get slammed by other members. There is nothing wrong with saying, "When this happens to me I do that and it seems to work for me." But when someone tell another member that they need to do a certain thing when they have a certain issue, they are crossing the line and there is potential for them to cause real harm to the person they are "advising". And it is so easy nowadays to find a reliable source of information that is based in fact and not opinion. I sure hope a few of the offenders read your article and take it to heart!

Posted by: Vicki T | August 13, 2018 2:58 PM    Report this comment

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