Important to Note:
The information contained on this page is some of what I learned from experts teaching at conferences I have attended put on by the Celiac Association.
One such expert is Dr. Alessio Fasano, MD with Massachusetts General Hospital. A doctor from Italy, he is credited with bringing the diagnosis of celiac disease and gluten intolerance to the forefront in North America.
When Dr. Fasano came to the United States in 1993, celiac disease was considered to be a very rare disease. It was believed that only 1 in 10,000 people suffered with celiac disease. Because of this high number, no research was being done to look for a cure. (It was also difficult to shop or eat out in restaurants because few companies were familiar with what gluten free eating was all about.)
Over the course of the next 10 years, Dr. Fasano was involved with extensive research. His research brought the number of occurrences from 1 in 10,000 to 1 in 5,000, then 1 in 2,500, then 1 in 1,000 and finally in 2003, he made a presentation to the National Institute of Health outlining his research proving the occurrence is 1 in 133. In fact, he believes that further research would have proven it to be 1 in 100 but rather than continue on that path of research, he asked for money to begin doing research on a cure!
Thank you for your tireless efforts Dr. Fasano! Because of your determination, countless people have been diagnosed with celiac disease and are now living a healthy life on a gluten free diet (including me!)
** Interesting true story:
A few years ago, a lady was diagnosed with celiac disease. She had been very ill for a number of years. After being diagnosed, she began following a gluten free diet and her health returned. Her husband was so thankful to have his wife healthy again, he made a donation to Dr. Fasano's research to find a cure. His donation was 43 million dollars!! That will go a long, long way towards helping Dr. Fasano and other experts in finding a cure.
Tips for Diagnosis
Do you have Celiac Disease? Do you have a Wheat Allergy? Do you have Gluten Intolerance?
These are important questions and you NEED to know the answer. It WILL affect the rest of your life!
TIP: You must be referred by a family doctor to GI specialist. To be seen faster by a GI specialist, DO NOT ask for a specific specialist by name. Instead, ask the family doctor to send the referral to the Central Medical Triage and you will be seen by the first available GI specialist.
TIP: Do not go completely gluten free until you know FOR SURE it is necessary. Get a proper diagnosis first. That includes a blood test usually requested by your family doctor. If this blood test comes back positive, you must be referred to a gastroenterologist (GI specialist) and in most cases an endoscopy (a biopsy of the small intestine) will then be done.
TIP: If you're sick and you know eating Gluten Free helps you feel better, DO NOT go gluten free completely until you have seen a GI specialist. Going gluten free BEFORE being tested WILL impact the results. The diagnosis may come back incorrect or inconclusive.
Instead, to help you feel better until you see a specialist, just go GLUTEN REDUCED. That means keep a small amount of gluten in your diet such as crackers, cereal, soup or packaged products that contain gluten. This small amount kept in your diet will be enough to keep your small intestine in a damaged state that the doctors can detect and will allow for an accurate diagnosis. By avoiding large quantities of gluten such as a plate of wheat pasta, a sandwich or pancakes, it will hopefully reduce your symptoms or reactions and make it tolerable until you get the diagnosis.
GLUTEN INTOLERANCE
Perhaps, after the endoscopy (biopsy of the small intestine), you will be told that you do not have celiac disease but that you are gluten intolerant. That means you will still require a gluten free diet to feel better but should you ingest gluten (either accidentally or on purpose) it will not damage your intestine as it would if you had celiac disease. Instead, you will just have to cope with the immediate symptoms or reactions that gluten causes you such as loose bowels, stomach problems, headache, etc. These reactions might be short term and worth it to you to get "glutened" on occasion depending on the circumstances!
If you have celiac disease though, even when you are absent any recognizable symptoms, your intestine knows when you ingest gluten and a portion IS damaged! You must always strive to adhere to the gluten free diet to the very best of your ability.
Definitely, finding out a proper diagnosis is worth it so you know the answer to "Do I have celiac disease or am I only gluten intolerant?" It really can affect the way you eat and the quality of your life forever!
RESEARCH UPDATE
Following a positive reading on the celiac screen blood test, Dr. Fasano was the doctor/researcher that set the biopsy / endoscopy as the “Gold Standard” method for diagnosing celiac disease.
In a recent interview, Dr. Fasano has now said that he may have set the standard too high with only the endoscopy as the way to confirm diagnosis. They are now looking at the 5 specific indicators of celiac disease and believe that having 4 out of the 5 indicators will be sufficient to make an accurate diagnosis of celiac.
These 5 indicators are:
Dr. Fasano has also recognized that there is legitimately a condition now known as non-celiac gluten sensitivity.
It is still in the beginning stages and researchers are still working on a way to diagnose it, thus, it is unclear just how many people have gluten sensitivity. Dr. Fasano senses that it is probably much more frequent than celiac disease (which is approx. 1 in 100) but does not know how much more they are talking about.
One such expert is Dr. Alessio Fasano, MD with Massachusetts General Hospital. A doctor from Italy, he is credited with bringing the diagnosis of celiac disease and gluten intolerance to the forefront in North America.
When Dr. Fasano came to the United States in 1993, celiac disease was considered to be a very rare disease. It was believed that only 1 in 10,000 people suffered with celiac disease. Because of this high number, no research was being done to look for a cure. (It was also difficult to shop or eat out in restaurants because few companies were familiar with what gluten free eating was all about.)
Over the course of the next 10 years, Dr. Fasano was involved with extensive research. His research brought the number of occurrences from 1 in 10,000 to 1 in 5,000, then 1 in 2,500, then 1 in 1,000 and finally in 2003, he made a presentation to the National Institute of Health outlining his research proving the occurrence is 1 in 133. In fact, he believes that further research would have proven it to be 1 in 100 but rather than continue on that path of research, he asked for money to begin doing research on a cure!
Thank you for your tireless efforts Dr. Fasano! Because of your determination, countless people have been diagnosed with celiac disease and are now living a healthy life on a gluten free diet (including me!)
** Interesting true story:
A few years ago, a lady was diagnosed with celiac disease. She had been very ill for a number of years. After being diagnosed, she began following a gluten free diet and her health returned. Her husband was so thankful to have his wife healthy again, he made a donation to Dr. Fasano's research to find a cure. His donation was 43 million dollars!! That will go a long, long way towards helping Dr. Fasano and other experts in finding a cure.
Tips for Diagnosis
Do you have Celiac Disease? Do you have a Wheat Allergy? Do you have Gluten Intolerance?
These are important questions and you NEED to know the answer. It WILL affect the rest of your life!
TIP: You must be referred by a family doctor to GI specialist. To be seen faster by a GI specialist, DO NOT ask for a specific specialist by name. Instead, ask the family doctor to send the referral to the Central Medical Triage and you will be seen by the first available GI specialist.
TIP: Do not go completely gluten free until you know FOR SURE it is necessary. Get a proper diagnosis first. That includes a blood test usually requested by your family doctor. If this blood test comes back positive, you must be referred to a gastroenterologist (GI specialist) and in most cases an endoscopy (a biopsy of the small intestine) will then be done.
TIP: If you're sick and you know eating Gluten Free helps you feel better, DO NOT go gluten free completely until you have seen a GI specialist. Going gluten free BEFORE being tested WILL impact the results. The diagnosis may come back incorrect or inconclusive.
Instead, to help you feel better until you see a specialist, just go GLUTEN REDUCED. That means keep a small amount of gluten in your diet such as crackers, cereal, soup or packaged products that contain gluten. This small amount kept in your diet will be enough to keep your small intestine in a damaged state that the doctors can detect and will allow for an accurate diagnosis. By avoiding large quantities of gluten such as a plate of wheat pasta, a sandwich or pancakes, it will hopefully reduce your symptoms or reactions and make it tolerable until you get the diagnosis.
GLUTEN INTOLERANCE
Perhaps, after the endoscopy (biopsy of the small intestine), you will be told that you do not have celiac disease but that you are gluten intolerant. That means you will still require a gluten free diet to feel better but should you ingest gluten (either accidentally or on purpose) it will not damage your intestine as it would if you had celiac disease. Instead, you will just have to cope with the immediate symptoms or reactions that gluten causes you such as loose bowels, stomach problems, headache, etc. These reactions might be short term and worth it to you to get "glutened" on occasion depending on the circumstances!
If you have celiac disease though, even when you are absent any recognizable symptoms, your intestine knows when you ingest gluten and a portion IS damaged! You must always strive to adhere to the gluten free diet to the very best of your ability.
Definitely, finding out a proper diagnosis is worth it so you know the answer to "Do I have celiac disease or am I only gluten intolerant?" It really can affect the way you eat and the quality of your life forever!
RESEARCH UPDATE
Following a positive reading on the celiac screen blood test, Dr. Fasano was the doctor/researcher that set the biopsy / endoscopy as the “Gold Standard” method for diagnosing celiac disease.
In a recent interview, Dr. Fasano has now said that he may have set the standard too high with only the endoscopy as the way to confirm diagnosis. They are now looking at the 5 specific indicators of celiac disease and believe that having 4 out of the 5 indicators will be sufficient to make an accurate diagnosis of celiac.
These 5 indicators are:
- Related symptoms
- Positive blood test for auto antibodies using the TtG or EmA testing
- Genetic disposition meaning HLA DQ2 or DQ8 marker
- Gluten free diet resolves symptoms
- Biopsy / endoscopy shows damage
Dr. Fasano has also recognized that there is legitimately a condition now known as non-celiac gluten sensitivity.
It is still in the beginning stages and researchers are still working on a way to diagnose it, thus, it is unclear just how many people have gluten sensitivity. Dr. Fasano senses that it is probably much more frequent than celiac disease (which is approx. 1 in 100) but does not know how much more they are talking about.
