Celiac Disease Awareness Month: One Mom's Story

Figuring out my reactivity to gluten was one of the key developments in my pre-conception health journey. May is Celiac Disease Awareness Month, and I’m glad there is increasing awareness about the havoc gluten can wreak on some people’s bodies.

Each person has her own unique story. There is no one-size-fits all approach with diet, even if we may share the same genetic predisposition to gluten sensitivity.

My story

The beginning

It was 2003 when I thought I was ready to begin trying to start a family, but my body told me otherwise. I was grappling with cystic acne, digestive troubles, and both anxiety and depression. My diet was near-vegan at the time, heavy on processed soy and whole grain products. A friend who had holistic health and nutrition training suggested my adrenals were exhausted and encouraged me to begin eating eggs and full-fat dairy. After months of no menstrual cycles, I ovulated two weeks after these diet changes and began to believe in the power of food as medicine.

I eventually began eating meat, and when this same nutritionist told me about having read Melissa Diane Smith’s then-new book, Going Against the Grain, and wanted me to have my stool tested for gluten sensitivity, I thought back to how much her other advice had helped and began limiting my gluten consumption. At this point, I was also receiving treatment for Graves’ Disease, autoimmune hyperthyroidism. My TSH had not budged from zero for months, but shortly after I began the new diet changes, it began coming back up.

When I did my first stool test with Enterolab, I had been gluten-free and mostly dairy-free for three months. When I got my results, my reactivity to both gluten and casein was through the roof, as was my intestinal malabsorption. And yes, I did present with the Celiac gene.

There are many people who are more well-versed in the specifics of Celiac Disease and the gut-brain connection than I am. I don’t profess to have all the answers, but it’s clear to me that gluten is not something I can have in my diet. Ditto casein, the milk protein. I don’t think I would have been able to reverse Graves’ Disease or keep my Hashimoto’s Disease at bay and not need medication if I hadn’t eliminated these foods from my diet.

Recent developments

After giving birth to two children – one via c-section – and with a body that is now 14 years older than when this journey began, things are more complicated.

It was shortly after my son’s birth in 2006 that I figured out that I could not tolerate corn. While having a bad digestive flare, I first tried a little of the grain-free Gut and Psychology Syndrome (GAPS) diet (and the Specific Carbohydrate Diet, or SCD) and then turned to these approaches in full force after the birth of my second child. Although my digestion improved dramatically following these guidelines, I believe that I consumed too many eggs and nuts on these protocols. In addition to sensitivities I may have had or developed, nuts and eggs are very acidifying. I also didn’t know that I have a genetic mutation that means I have trouble processing sulfur.

I am currently following the Autoimmune Paleo protocol (AIP). After hearing Real Everything (formerly Paleo Parents) blogger Stacy Toth speak at a 2013 Holistic Moms meeting and then again with The Paleo Mom Sarah Ballantyne at the 2014 Take Back Your Health Conference, I realized I needed to try eliminating legumes and nightshades from my diet as well as eggs and nuts.

I’m still on my path to figure out what my body needs.

My personal picture is complicated by chronic Lyme Disease and Epstein-Barr Virus (mono) and other viruses, and methylation issues. It may be that mercury toxicity played a role in my first health crisis. Ayurvedic practitioner John Douillard suggests in his new Eat Wheat book that people should be able to eat wheat and that an inability to do so is treatable. I have yet to read his work on this. I know I have a lot going on and am doing the best I can to address various issues, but it takes a lot of time, and I’ve been on the journey for a while and am getting tired of trying new things!

I removed my one amalgam safely in 2004 and did many detox protocols before and after. I highly recommend that everyone remove metal from their mouth and do it mindfully with dentists who use safe protocols and can provide detox support. My eBook has a category for local holistic dentists.

Advice for your journey

I encourage everyone who comes to an understanding that they can’t tolerate gluten to consider not just swapping out gluten-containing foods for gluten-free versions but to go on a deeper healing protocol that includes broth and healing supplements. There are many terrific health coaches and practitioners who now know how to work with gut healing protocols. Many our listed in the Mindful Healthy Life online resource directory, and even more are in the eBook Guide to Holistic Family Living, which is free to subscribers of the site.

Bioindividuality is key. What works for one person may not work for another, and what works at one point in time may not work for the same person again three years later. We all need different things at different times.

I have benefited from elimination diets but have experienced some side effects as well. It’s complex. I’ve gotten help from intuitive healers using energy work; from data gathered from blood, stool, urine and saliva tests; from herbs, homeopathy and nutritional supplements, and from bodywork. There is a lot of trial and error.

Doing research and making connections

If you have just been diagnosed with Celiac Disease or gluten sensitivity, I hope you will come to consider it a blessing. If removing one food or several foods from your diet can help to clear up brain fog or digestive upset or mood disorders, you will feel a lot better.

It will take time and detective work to determine all the pieces of your individual puzzle. If the person diagnosed is a child, congratulations on figuring this out early on. If I hadn’t spent so many years eating foods my body couldn’t handle, I probably would not have experienced so many skin issues and so much depression in my youth or have had a significant health crisis at age 30.

I also believe that some of my issues started in the womb. I was on a steroid cream for yeast until I was potty-trained. This indicates an imbalanced gut flora. I was born vaginally but not breastfed. My skin irritation may have prevented me from sleeping deeply, which contributed to early adrenal issues that may have made me more susceptible to everything else.

Childhood trauma could have also played a role: My brother’s death when I was 14 could have exacerbated my predisposition to chronic illness as did the unhealthy choices I made in the wake of that tragedy, which including drinking alcohol and smoking. Today, I can’t even take more than a sip of red wine – even if it’s organic! – without my face turning red and hot!

It’s complex and a work in progress. Things in my gut are a lot better than they were, but I’m still figuring things out. I’ve read a lot but there is a lot more I could read and try.

I recommend folks check out The Paleo Mom and Real Everything blogs for more on gut healing and the Autoimmune Paleo protocol (AIP).

There are many other people talking about the connection between gut health and brain health, gut health and thyroid health, non-celiac gluten sensitivity, and so much more. These include Josh Axe, Amy Myers, Chris Kresser, Isabella Wentz, David Perlmutter, Donna Gates, Robb Wolf, Kelly Brogan, Rodney Ford and many more.

Gluten-free products have also come a long way. There is still a lot available that is not nutrient-dense, but there are more and better options. One of my kids’ favorites is the new grain-free and nut-free Legit Bread, the creation of local mom Jennifer Robins of the Predominantly Paleo blog and several cookbooks, including the Paleo Kids Cookbook, which we wrote about last fall.

You can purchase the Legit Bread frozen or in a mix that you make at home, and Jennifer’s now got a bagel version, too! You can even get these products now on Amazon! Learn more at www.legitbreadcompany.com.

DC Gluten-Free Expo

The DC food scene and the national food scene have gotten more accommodating to gluten-free diners over the years. The DC Gluten-Free Expo has been educating consumers about living gluten-free since 2011 with its annual event. This year’s event takes place on Sunday, June 11 and takes the format of an education day with sessions led by well-known speakers.

There is an adult’s forum for ages 13+ with keynotes and breakout sessions, and for children there will be two experiences – one for children ages 4-6 and a separate forum for kids ages 7-12. All tracks last the full day, 9:00 a.m. to 4:00 p.m.

The 2017 DC Gluten-Free Expo includes:

A breakfast and three snack breaks sponsored by local bakeries, including Red Bandana Bakery, Rise Bakery, One Dish Cuisine, Lilit Cafe and national gluten-free companies Canyon Bakehouse, Garden Lites, Udi’s, Glutino and Bob’s Red Mill.
A full seated lunch catered by the Lettuce Entertain You Restaurants including: Wildfire, Stella Barra, Summer House Santa Monica, Big Bowl, Mon Ami Gabi, Community Canteen and RPM Italian.

Attendees will also leave with goodie bags full of treats. The event is almost sold out, so get your tickets at www.dcglutenfreeexpo.com.

If you know of other upcoming events or gluten-free resources we should know about, let us know in the comments or put them in the directory or calendar!

This page contains an affiliate link to the Chronic Lyme Disease Summit 2 by Health Talks Online, June 19-26, 2017.