Blueberry pancakes. Warm rosemary bread. A plate piled high with pasta Puttanesca. Steamy wheat popovers with jam. I have to confess that there are a hundred more reasons why I don't want a diagnosis of celiac and most of them are food. But food is the least worrisome when you compare it to osteoporosis, auto-immune thyroiditis and other health challenges.  I loved to eat! How ironic that my favorite things would turn out to be the enemy. 

Writing and research are two more favorite things. I suppose without them, I may never have been diagnosed. A little knowledge is a dangerous thing. I chose to believe more knowledge can help see you free. 

Get the picture. I am a petite, 5'3" woman. Because I love to eat, I have a 5 pound red alert built into my brain because I want to stay slim and petite. But the usual cut back and eat a lighter did not work this time. I continued to gain. After 3 months of struggling and 15 pounds later, I just knew something was not quite "right". Even my hair was falling out by the handful when I shampooed. I was tired. All the time.

Since my thyroid medication had recently been changed, I queried my endocrinologist but she quickly dismissed the symptoms to "age" and "peri-menopause". But I believe symptoms are the way my body says "something isn't normal" and I have learned to be a good listener. I know a lot about diet and taking supplements and staying healthy. How could I be doing everything right and feel so wrong?  

The researcher in me took action. The easy bruising may be low vitamin C. My hair needed B vitamins and my dry skin might mean low vitamin A. or D. Hmm. My endocrinologist does monitor some vitamin levels. She thought my 1000 I.U.a day of vitamin D3 too high (the typical dose then was 400-600 I.U.) so she ordered a D3 blood test. To her surprise, I was woefully low (half of "normal.)   She doubled the dose and retested in 3 months but the level barely charged. It took 5000 I.U. a day for several months to get it back to normal. My other concerns were mostly ignored. So I bought bigger clothes but kept looking for answers.

A short time later, I discovered a research paper from the Mayo Clinic  that stated 33% of auto-immune thyroid patients tested positive for celiac disease. Many of the symptoms matched mine. Not one to self-diagnose, I brought the paper to my endocrinologist and asked to be tested. She declined my request but my family doctor agreed to test. Good thing! The Deaminated Gliadin Peptide (DGP) blood test measures the reaction to gluten as the first step to diagnosing celiac.  My result  was unquestionably positive. No more bread for me!  I later learned that many of our grains are hybrid and genetically altered to be bug and disease resistant. Plus, the gluten content of bread is 7x more than a decade ago. Gluten helps bread rise more quickly, saving valuable production time. I was handed a pamphlet on celiac and told to avoid gluten. Time to do more research.

Celiacs are born without the enzymes needed to break down gluten, the protein found in most grains such as rye, wheat and barley. Since celiac is genetic, severity may depend on whether one or both parents were celiac. A simple blood test can identify the two primary celiac genes,  HLA-DQ2 and HLA-DQ8. If you do not have the genes, you will not be celiac. In Italy, babies are tested as newborns and if they have either or both of the genes they are brought up on a gluten free (GF) diet. Since some genes in the body are dormant until "turned on", the GF diet keeps them from developing the diseases associated with celiac like osteoporosis and auto-immune thyroiditis. Gluten damages villi in the intestinal tract lining which are required for the transport of nutrients, nutrient you need to build bones and assist with normal thyroid hormone function. I tested positive for both genes so probably both my parents carried the genes but I never was able to find out. 

Once you are diagnosed, having celiac means a life-long commitment to a gluten-free way of life, not just from grains but to any food with gluten as an ingredient. Not following a GF diet could mean damage anywhere along the digestive tract from the mouth to exit. One of the key threats is inflammation from the gluten allergy. Continual assault by gluten allergy may  even cause certain cancers of the mouth, stomach and in the GI tract. 

It would have been nice not to have reached the low point that I did. But celiac is not a "loud" disease. In fact, celiac symptoms can be so subtle that 97% of those who have it are undiagnosed. I was one of them. Statistically, 1 in 100 people currently have celiac, a number which should be higher. In Italy, celiac is a recognized disease. The United States is behind in taking a pro-active steps to protect  our health. Celiac is considered a "childhood failure to thrive" disease so it's often missed in adults. 

Given the compromised to nutrient absorption, who knows how many disorders have celiac as a contributing factor, a factor which is basically ignored?

A year into the diet and retesting shows my gluten levels are not "normal" yet. I am a work in progress as I've learned it can take up to two years for my body to recover. Although you make new GI cells every 7 days, the GI system needs time to completely heal. Since many nutrients are "manufactured" there, including A,B,D and K vitamins, my nutritional status needed recovering too. Good thing I owned a supplement store where I could get what I needed. Oh, and that weight problem? Gone -- two months after starting the gluten-free diet.  

Ultimately, I believe that the body can heal itself when given the nutrients and the tools to do so. In my case, I have a pretty specialized tool box! But I'm determined. I fired the endocrinologist (a first for me) and am so thankful I had a family doctor who listened to me. It was a time of trial and error but we made a good team and I feel blessed with her care, even if she couldn't give me a good recipe for GF bread!

Addendum to my story, 2020

For three years post diagnosis, I teamed up with a local naturopathic doctor and the two of us started a celiac support group. She was the seasoned celiac with a 20 year history and I was the "newbie". I learned a lot and we helped others get the right testing, find healthy foods to eat and raised awareness for diagnosis in adults with this disorder. Although the supermarket shelves have packaged GF foods, please read the labels. The government criteria for GF means it could contain up to 20 ppm gluten which could still compromise  most people with celiac. The product could be cross-contamination in a manufacturing facility that processes other foods with gluten. You are better off eating  close to nature. Even if it means more prep time making meals, they will be healthier  and better for you. 

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