Testing for celiac for those on a gluten free diet requires a 6-12 week gluten challenge. This is one of the most controversial topics in celiac disease diagnosis. We are gonna talk about it now!
Some people say that the a 6-12 week gluten challenge is unnecessary for those already on a gluten free diet. Why do you need to know if you have celiac disease or not? I mean there is no medicine and the only way to treat celiac is a gluten free diet for life. If I already know gluten bothers me, why should I get tested and put myself through the gluten challenge?
The most important reason is simple – the gluten free diet! The gluten free diet is notoriously low in a variety of nutrients like iron, B12, B6, zinc, copper, and fiber. Without enough iron and B12, you die. Quickly. It is also incredibly difficult to do correctly, even for those that are already diagnosed with celiac disease. I won’t even mention the social isolation that comes with the gluten free diet, too.
Another reason to investigate a celiac diagnosis, is that the issue might not be with gluten. A study was done in Australia with people who believed they had gluten intolerance and tested negative for celiac disease. The people were given a low FODMAP diet, a gluten free diet, and a regular diet. Participants reported the fewest gastrointestinal symptoms on the low FODMAP diet. Other studies indicate that a low FODMAP diet can reduce 75% of IBS/gluten intolerance symptoms. Gluten containing grains are considered high FODMAP foods. So, people could be confusing an inability to digest high FODMAP foods and gluten sensitivity.
Also, what if you really do have celiac? A confirmed diagnosis carries some protections, such as FMLA and ADA protections. It also puts your doctors on high alert for other diseases such as Type 1 Diabetes and Hashimoto’s Thyroiditis. Having celiac affects all first degree relatives because they should all be checked for celiac due to its genetic components.
My daughter recently had a bout with impetigo – a skin rash that needs treatment with antibiotics. The PA at urgent care asked an interesting question – she asked if my daughter had any autoimmune diseases. Because, I have an autoimmune disease I thought it was odd, so I asked. She explained that impetigo left untreated or in those with autoimmune diseases, can cause damage to the kidneys and that she would have to treat the impetigo more aggressively than if she didn’t have an autoimmune disease. Who knew?
Finally, there is the mental aspect to getting diagnosed. If you have the full diagnosis, it is much harder to cheat on the gluten free diet. If you don’t have a diagnosis, a beer or piece of bread here or there may not matter too much. One might feel bad for a day or two. With Celiac, that mental lapse can lead to concerns over doing significant damage to my gut because of my mental lapse. So, it is an important mental distinction between in the two as well.
I understand that doing a 6-12 week gluten challenge is daunting. It is scary and nobody wants to be sick. However, I feel like a celiac diagnosis affects enough of one’s life that an accurate diagnosis is important. If someone truly has celiac, 6–12 weeks may not be required if they’ve been “gluten lite” or have been gluten free for less than about 6 months. It took me two years to get my blood tests in range and my biopsy to normal, when I was diagnosed in my early 40’s. The doctors can also cut the challenge short if it is truly disturbing your lifestyle. Also, make sure all testing is complete, including blood tests and biopsy. If you are going to go through the gluten challenge, you may as well do it all.
Finally, the first tenant of medicine is “Do no harm.” Some may argue that a gluten challenge is doing harm. I disagree. I think the gluten free diet can do more harm if not done correctly and one could be limiting themselves unnecessarily by being gluten free when they don’t have to be. I think the gluten free diet is inherently harmful, but for now it is the only option those with celiac have to live a “normal” life.
This is just my two cents. You can have them for all they are worth.