On Gluten

I have been listening to the Kristen Kancler-hosted Own Your Power Summit podcasts this week. The focus of the summit has been about encouraging listeners to rethink their body, including eating habits, fitness, body image, self-esteem, etc., and achieving life goals. I learned about the summit from Brittany Watkins, who I have been following for some time in my own path on overcoming emotional eating and who was a guest speaker for the summit.

Today, I listened to a podcast with guest speaker Dana James that piqued my concern. I will get right to the point: Ms. James advocated that most people who stay away from gluten do not have to do so forever. Her opinion is that most people can stay away from it for a nine month period to heal their gut, and with some other dietary adjustments, they may be able to resume eating it.

Gluten is a hot button topic these days. Debates are ongoing as to whether gluten intolerance, or gluten sensitivity, is a valid medical condition. Some studies suggest it is not, and that other ingredients in foods containing wheat may be at play, specifically FODMAPS. Other studies provide evidence that gluten sensitivity is indeed real. So it appears the coin has not fallen on either side of the fence, here.

Then, we have celiac disease, a proven autoimmune condition in which the body attacks itself if the person in question eats gluten. Medical documentation has existed on celiac disease since the 2nd century AD, with doctors associating the condition with diet since the 19th century. There is no question it is real.

Sadly, the desire to turn gluten free diets into a health and fitness trend has muddied the waters. Turning a diet that has restored the health of millions into a fad risks turning it into a pariah, and that exactly what has happened. When even Jimmy Kimmel skewers the gluten free "trend," you know the effort to educate others about why it's a necessary treatment for some is in trouble.

Source: YouTube

My take on the Dana James podcast that I listened to today is that it will do more harm than good in the need to educate, raise awareness, and advocate for those who have celiac disease and gluten sensitivity. I think it is also dangerous for her to argue that folks with these conditions can, at some point, go back to eating gluten-containing foods safely.

Why do I say this? Because I live in a household in which we have to ban gluten for health and safety reasons. My son and I have gluten sensitivity, as evidenced from swelling/bloating - not just the gut but water retention in limbs and digits, irritability, fatigue, and loss of mental clarity, or "being in a fog," if we eat gluten-containing foods regularly. We are able to handle the small amount in a Eucharistic wafer, but beyond that, a gluten-free diet is a must so that we can function and be at our best, physically and mentally. I have furthermore found in my case that going grain-free completely has helped me feel even better.

This is not totally surprising to me as I have heard of the connection between autistic symptoms and gluten for many years. Going gluten free does not cure or totally alleviate the symptoms for either of us, and most of the evidence on whether it is effective is anecdotal rather than scientific, but it certainly has been a big help for me and my son.

Some have also asserted a link between Hashimoto's and gluten sensitivity, and it is possible that is where my inability to digest it originates, rather than Asperger's... or maybe in combination with it. I simply don't know, but it reinforces that a gluten free diet is indeed best for my body.

Then, we have my husband, who has celiac disease, as diagnosed by a physician. I had already been on a gluten free diet for a year before he tried it as well out of curiosity. Lo and behold, symptoms he had experienced for much of his life began to disappear, including a skin condition we now know was dermatitis herpetiformis, which is a direct result of the autoimmune reaction to gluten common in celiacs. The mental fog he had experienced for so long lifted. He also began losing weight associated with inflammatory water weight gain. His doctor at the time confirmed that his response to an elimination diet was enough to confirm that he had celiac disease and ordered him to stay away from gluten.

In the ten years since his diagnosis, my husband has encountered cross-contaimination a few times when we've eaten at restaurants. His reaction is always the same: He develops a widespread red rash, usually behind joints and around his belly, along with fatigue, flu-like symptoms, and occasionally weeping sores.

The last time it happened, however, it was much worse and would not go away after a week. I urged him to see our family practice, where a PA informed him that his reaction was so severe that he was at risk for anaphylactic shock and his throat could have swelled shut on him. In short, his celiac has progressed to the level of a severe allergy. He had to take prescription antihistamines and a steroid, and his doctor even urged him to consider an Epi-Pen prescription to keep on him in case. All in all, it took several weeks for his rash and sores to heal completely.

So, in our home, whether my son and I have a valid gluten sensitivity is, to an extent, no longer relevant. We have to keep gluten out of our home to protect my husband from an allergic reaction, and even if my son and I had never had an issue with gluten, I would insist on having us all follow a gluten free diet out of solidarity at this point.

Sadly, even when we have been very open with our stories, we have still encountered very ignorant, judgmental, and hurtful responses. Family members blew off my husband repeatedly and became offended if we refrained from eating foods at gatherings where they could not confirm if it was gluten free. A former friend suggested my husband's symptoms were psychosomatic. We had to escalate a situation at my son's school recently after his classroom aide ordered him to eat a dessert, despite the substitute saying she was not sure if it was safe, and despite his IEP stating he must be on a gluten free diet.

It's families like mine for whom Dana James' counsel as she provided it on her podcast could prove questionable, if not downright dangerous. If my husband resumed eating gluten based on her advice - even just a bite - it could land him in the emergency room, or worse yet, the grave.

Mind you, Ms. James wrote an article on mindbodygreen where she lists who should not eat gluten, and that includes those with a celiac disease diagnosis, among others. She also talks about doing what is right for you and your body, and I agree on that point.

On the other hand, the article is nearly two years old, and I did not find it without doing an online search, so this information is pretty buried when it comes to the timeline and piles of information on the Internet. Additionally, the information and advice she provides throughout the article can come across as conflicting and confusing on first read.

Dana James is not the only person, specialist or not, who has a weigh-in on the gluten "debate." A quick Google search alone can overwhelm you. So, what to do?

If you have read my post On Good Brains, then you have seen me mention discernment as a valuable skill, and that definitely applies here. We all have to discern what is right for our bodies based on what we have experienced and on truth and facts. Yes, Google searches can be overwhelming; however, research is still necessary to learn about what may be going on with our bodies, and coupling that with conversations with your doctor or a specialist can help narrow down anything going on and what to do about it. An informed choice is the wisest choice.

Lastly, take articles, podcasts, and blogs with a grain of salt. That includes people like Dana James, and even more so, it includes ones like mine. As I state in my disclaimer, I am not a medical expert, and if I was one, I would still be telling you to consult your physician. Why? Because I couldn't diagnose you through a computer screen, and your situation is unique. Even if we shared the same symptoms and what I say resonates with you to where you say, "Oh, this has to be it! I must have the same thing!," there are too many medical conditions with parallel symptoms to allow anything I share to be a definitive marker for a diagnosis.

How will you make informed choices for yourself and your family?

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