Chestnut Street Inn

Diagnosing Celiac Disease: A Work In Progress

I am currently reading yet another book about Julia Child called “As Always, Julia” by Joan Reardon. This is a collection of a series of letters written between Julia Child and her friend Avis Devoto. In one letter, Avis Devoto describes having suffered from anemia for twenty-five years. As I was reading this a red flag flew up in my mind which had celiac disease written all over it. Let me explain. My mother in law, who was finally diagnosed with celiac disease in 1997 suffered from chronic anemia to the point that she was getting recurrent iron shots which didn’t seem to really help her. As it turns out, the anemia was a symptom of celiac disease but because doctors were not aware of or not accustomed to testing for this disease, they missed it and so she suffered for years without a real explanation.

Other very common symptoms that went misdiagnosed for years because of lack of knowledge were gastrointestinal problems, such as IBS, skin irritations, migraines, failure to thrive, fibromyalgia, neuralgia and any number of other diseases which involved lack of energy, stomach discomfort and a general sense of feeling ill. Many of these individuals went on to take medications for these ailments, which gave them only minimum relief and mostly just resulted in a sense of despair, a feeling that they would never feel “right” again.

I hear these stories over and over from those who have spent years getting a proper diagnosis. Ironically, most, if not all, feel an immediate sense of relief as soon as they eliminate wheat gluten from their diets. For some, these symptoms may not have appeared in their youth, but later in life. This represents basically two kinds of celiacs, those who are immediately affected and those whose effects are cumulative, meaning the build up of exposure to gluten over a period of time will eventually cause discomfort. My mother in law is the first kind. She knows within minutes and has violent reactions.

So what is celiac disease exactly?? Essentially the proteins in wheat gluten cause inflammation of the villi or hairlike projections in the intestine. These hairlike projectsions are largely responsible for absorbing the nutrients ingested from food. When they become inflamed, they shrivel up and the end result is essentially malnourishment which manifests itself in the above mentioned symptoms. These villi will grow back once gluten is eliminated from the diet and therefore celiac disease is perfectly managed through diet, not requiring any medication for most.

It is important to mention that celiac disease should not be called an allergy in the true sense of the word but rather an intolerance. An allergy by definition creates a histamine response, which causes inflammation in the whole body rapidly and may result in not only rashes, but anaphylactic shock where ones throat will close up causing them the inability to breathe. These kinds of responses can be severe and can result in death. There ARE those who do suffer from wheat allergies. An intolerance like celiac disease may result in death over the long term, mostly from lack of absorption of nutrients, but is not immediately deadly. It also cannot be treated with medication, such as an epipen, to alleviate symptoms.

Diagnosis is simple but not foolproof. Usually it begins with a simple blood test to determine a preponderance toward celiac disease. Once a preponderance has been confirmed an endoscopy is required to confirm the damage to the villi for a true diagnosis to be made. Part of the problem that has been encountered by some is that once they receive a positive blood test they eliminate gluten from their diet and then have an endoscopy. Since the villi will grow back after the removal of gluten, they will show a false negative from the endoscopy.

There is also the issue of self-diagnosis. Celiac disease and wheat intolerances have become somewhat of a fad lately. Many are jumping on the band wagon so to speak, attempting to treat a number of different ailments with the assumption that they must suffer from a gluten intolerance. This is not to say that they won’t feel better, as many will actually reap the benefits of eating more whole foods and less processed foods, but the result may not actually dictate the cause. In my mind, how you feel is enough to encourage you to continue on a wheat free diet, but to truly be sure, one should discuss this with a trained medical practitioner and particularly one who is familiar with testing for and diagnosing celiac disease.

For more information on how to eat gluten free, check out my cookbook “Let’s Party: Gluten Free Entertaining for Everyone.” The book was inspired by and tested on my mother in law. Log onto

2 thoughts on “Diagnosing Celiac Disease: A Work In Progress

  1. Thanks for sharing the info. Gluten intolerance can create a host of negative symptoms even when a person does not have active Celiac disease. I’m glad I was diagnosed after 50 years!

  2. Great article!! I have spent so many years and so much money going to specialists who were searching the wrong diagnosis. While always dealing with seasonal allergies etc, wheat was never found. Finally found a Dr who figured out it’s an actual cellular type allergic reaction to actual Wheat. I never had the tummy issues so Celiac was never pursued. Its very difficult to explain to people tha its an actual allergy, not just a current way of eating. We are looking forward to an anniv. trip to your Inn. My hubby has been really searching hard for some place to take me where I wont stress having to plan food since most places are not trained enough to accomidate someone with these types of allergies. Your book is great, and I love the blog.

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