I decided to write this post after speaking with a number of people who would have loved to have an official diagnosis but don’t due to the fact that they stopped eating gluten before they were tested. Some people are able to stay strictly gluten free and live like a celiac whether they have an official diagnosis or not whereas others need to know for sure before they take the diet as seriously as you need to when celiac is the diagnosis. This post is for those of you in the latter category. Folks like myself who need to see it in black and white.
If you are suffering from lots of the horrible symptoms which sound like what might be celiac disease and you want an official celiac diagnosis you MUST continue eating gluten pretty consistently until you’ve been tested. Many people stop eating gluten before getting tested, often at the recommendation of their doctor to see if they feel better without gluten or because they don’t fully understand what the tests are looking for and as a result are left without a proper diagnosis.
Why do I need to eat gluten for a celiac diagnosis?
You NEED to be eating gluten for the celiac blood tests and endoscopy/biopsy to provide accurate results. These tests are looking for antibodies and damage to your intestines and there aren’t going to be antibodies or damage to find if you aren’t eating gluten.
I haven’t yet found a celiac organisation which doesn’t recommend that patients continue to eat gluten until they have a diagnosis. Celiac organisation throughout the world such asÂ Coeliac UK, theÂ Celiac Disease FoundationÂ andÂ Coeliac AustraliaÂ view the small bowel biopsy as the only way to gain a celiac diagnosis.
The great thing about sticking to a gluten free diet when you’re celiac is that these antibodies disappear and the intestinal damage heals but if this healing happens before the determining tests are done there will be nothing to find and doctors won’t be able to tell if you have celiac disease or not.
It’s much easier to continue eating gluten for a little while longer than to stop eating it altogether and then be forced to start eating it again for testing purposes. I’ve had a few friends who felt so terrible when they had to start eating gluten again prior to testing that they stopped and were left without an official diagnosis.
It is possible to have problems with gluten and not be celiac.Â Celiac disease and non-celiac gluten sensitivity (NCGS) are different. Often the symptoms are the same but with NCGS there aren’t the same long term consequences which are linked to celiac disease and so knowing where you stand may make you less likely to cheat.
From the American Celiac Disease Alliance – Celiac disease is an autoimmune condition, where the bodyâ€™s immune system starts attacking normal tissue, such as intestinal tissue, in response to eating gluten. Because of this, people with celiac disease are at risk for malabsorption of food, which cause nutritional deficiencies and may result in conditions such as iron deficiency anemia, osteopenia, and osteoporosis.Â Persons with a wheat allergy or gluten-intolerance usually do not have severe intestinal damage, and therefore are not at risk for these nutritional deficiencies.Â They also are not at increased risk of developing other autoimmune conditions.Â This is why I personally think it’s important to know what you’re dealing with.
I spoke with a friend this week who is in this should I stop eating gluten or should I get tested first predicament at the moment. I asked him. ‘If you were tested and the results came back that you had celiac disease would you take it seriously? His answer: Definitely! I’d change my whole diet
I then asked him. ‘How about if you stopped eating gluten and you felt a lot better but you never got an official diagnosis. Would you take it seriously then?’ His answer: I would but I’d probably allow myself to relax about it every now and then.
This is exactly what worries me in the case of some people who don’t get the chance at an official celiac diagnosis. An official diagnosis along with the threat of serious long term consequences may make us take the disease more seriously. I know it has for me. How would you have answered these questions? If you would have answered them similarly to my friend, you would most likely benefit from an official diagnosis and unfortunately you can’t get that unless you continue to eat gluten.
What are the alternatives to an official diagnosis by biopsy?
You cannot get an official celiac diagnosis without a endoscopy and biopsy. You can get a gene test but this will not tell you if you have celiac disease, only if it’s possible that you have it. Many people have the celiac gene but never go on to develop celiac disease so it’s not always the best indication.
The other alternative is to live as a celiac. Never eat gluten again, not even a crumb and be vigilant about cross contamination.
What are your thoughts on this topic? Where you officially diagnosed or self diagnosed? Share your thoughts and experiences in the comments below..