My Gluten Free Story

In 2008, I opened Gluten Free Specialty Market, an all gluten-free market in Downtown Sacramento, California. Since opening the market, I am constantly asked about my gluten-free story. So, here it goes:

In 2001, I met Nicoli, a choreographer in Oxford, England that had been diagnosed with Celiac Disease. Before then, I had never heard about Gluten or about the auto-immune disorder, Celiac Disease. At the time, I tried exploring a gluten-free diet, but I didn't have a complete understanding of what gluten was.

Based on my research on Celiac Disease (known as Coeliac Disease in the UK), I learned that gluten was wheat, rye, barley and some oats. From my research, I didn't think that it would be hard to eliminate wheat, rye, barley and oats out of my diet, until I started reading labels. As I began to read labels, I became aware that gluten is in a large percentage of packaged and processed products. As a college student working and studying in England, I had a hard time finding the time to prepare food from scratch. After almost a month of trying to eliminate gluten from my diet, I gave up.

In 2002, I began working with Serena Ryder, a nutritionist in the Sacramento area. Serena encouraged me to keep a food journal and a feeling journal regarding my eating habits. When looking over my journal, Serena noticed that I reported feeling sick more when I ate bread, pastas and wheat based products. Additionally, she noticed that the more I ate grains, the more I had problems with stomach pain, constipation, migraine headaches and dermatitis (a condition that results in SEVERELY itchy skin). With my health in mind, Serena gathered together as many resources as she could possibly find to help me learn more about gluten and about Celiac disease. She put me on a gluten-free diet and sent me to have my blood drawn for the IGA antibody test associated with Celiac Disease.

My doctor sent me to have my blood drawn for the IGA antibody and sent me to my gastro-intestinal doctor to schedule an endoscopy, sigmoidoscopy and biopsy to check for Celiac disease. My IGA antibody test came up negative, but my gastro-intestinal doctor wanted me to continue with the biopsy plan. I was place on a gluten-challenge for 2 weeks before the biopsy. When I showed up for my biopsy, my gastro-intestinal doctor told me that I looked horrible and that I should really consider avoiding gluten even if my biopsy came up negative.

The biopsy came up negative. Despite the negative biopsy and IGA antibody test, my symptoms worsened during the gluten-challenge and I developed an ear infection in both ears, a sinus infection, severe stomach cramping (which feels a lot like food poisoning) and a chain of migraine headaches (amongst many other symptoms). I ended up visiting my primary care doctor several times during and after the gluten challenge and she encouraged me to think about going on a gluten-free diet to increase my quality of life.

It was hard to go on a gluten-free diet, because at the time there weren't a lot of resources available. Due to my negative Celiac Sprue biopsy, I never thought to contact the local Celiac support groups in my area. For this reason, I began the gluten-free diet one food at a time.

In the early days, I cried whenever I smelt pizza cooking and I felt like I wanted to cry every time a dinner or dessert I couldn't eat was placed in front of me. Sometimes I avoided the food and other times I endulged and felt violently ill afterwards.

Since 2002, I have been improving my health by maintaining a gluten-free diet. It has been a long and difficult road, filled with a mixture of correct and incorrect information. There were many times that I avoided things I could have eaten, but far more often, I ate things I should have avoided.

I am happy to say that every day and every month, it is becoming easier for individuals in the United States to eat gluten free. Thanks to a large amount of dedicated and supportive advocates, individuals starting a gluten-free diet, are now privy to a variety of resources including: gluten-free stores, good information on what gluten is and on what gluten is not, and a variety of academic research that is currently exploring the health effects of gluten and on the complications related to Celiac Disease.

Individual's on a gluten-free diet can check out information on gluten containing and gluten-free ingredients based on their location:

In the United States go to: http://csaceliacs.org/gluten_grains.php

In Canada go to: http://www.celiac.ca/EnglishCCA/egfdiet.html

In the United Kingdom go to: http://www.coeliac.org.uk/glutenfree_living/tools_for_choosing_safe_foods/1276.asp#update

When I am asked for information that is helpful for people starting the gluten free diet, I always recommend that they start by researching the publications and resource gallery that Shelley Case, author of the Gluten Free Diet, provides both online and in her book the Gluten Free Diet.
You can find Shelly Case's materials at: http://glutenfreediet.ca/resources.php

Written By: Melanie Weir

Common Question: How Can Gluten Hide In Ingredient Lists?

Due to my negative Celiac Sprue biopsy, I never thought to contact the local Celiac support groups in my area. For this reason, I began the gluten-free diet on my own, reading labels one food at a time and keeping a food journal to find hidden gluten in the foods I ate.

For years, I researched gluten and gluten-containing ingredients. During this time I noticed a huge discrepancy between different sources. Some ingredients that were always controversial include: carmel color, flavored extracts, alcohols derived from grain, and the term natural flavoring.

Lucky for individuals new to the gluten-free diet, there are now many credible sources regarding gluten-free and gluten containing ingredients:

In the United States go to: http://csaceliacs.org/gluten_grains.php

In Canada go to: http://www.celiac.ca/EnglishCCA/egfdiet.html

In the United Kingdom go to: http://www.coeliac.org.uk/glutenfree_living/tools_for_choosing_safe_foods/1276.asp#update

Common Question: What is Gluten?

Gluten is the outer casing of the wheat, rye and barley family of grains. Additionally, about 95% of oats produced in the United States are contaminated with gluten. The main reason for this contamination, is the farming of oats, but sometimes oats become contaminated during production and packaging.

Most oat farmers regularly rotate crops. Oat crops are often rotated with Wheat Crops. For this reason, wheat sprouts often end up popping up in the oat fields. For this reason individuals sensitive to gluten and individuals with Celiac Disease should not consume oats that are not certified as gluten free. The GFCO certifies oats at 20ppm or below.

In Living Gluten Free Answer Book, Suzanne Bowland describes gluten as being a sticky glue-like substance that gives "bread dough its viscosity and malleability, giving bread its structure and chewiness (p 51). I must include that it is also used: as a thickening agent, to preserve foods, and as a taste enhancer.

It is important to note that gluten has many names besides wheat, rye and barley. I'll go into more detail on the many names of gluten in the near future.