Some folks say “I don’t need to get tested, because I’m willing to be gluten-free for life!” In fact, that’s the decision we made for our son last year. Unfortunately, it’s also a decision we regret.
It’s true that the treatment for celiac disease is a gluten-free diet, so if you can really stick to the diet, that decision may be fine for you. But there is more to it than that. If you can get a formal diagnosis of celiac disease, there are several benefits, especially for children.
Benefits of a Diagnosis
If you start off with a formal diagnosis and test results, follow up testing will be easier to interpret. Celiacs usually get retested to ensure their diet is really gluten-free enough. Celiacs also have a higher risk of other autoimmune diseases so screening is advised.
With a formal diagnosis, you can get a 504 plan to force the schools to accommodate the child. This is very important for kids who are in school. For example, classrooms for young children with celiac need special precautions around crafts and mealtime. For example, all children in the classroom need to wash hands with soap and water rather than sanitizer, gluten-containing craft supplies should be excluded, and the child should be able to eat in a gluten-free area.
Many colleges require freshmen to live in the dorm and use a mealplan in the cafeteria with no access to the ability to store or cook food for themselves. To get the requirements waived or to be accommodated under the American Disabilities Act, one needs a formal diagnosis and a 504 plan – even then it can be a challenge.
Having celiac disease can disqualify you from entry into military service. If you are already serving, you may be able to stay, but it will affect which positions you can hold. In many positions they are unable to accommodate a gluten-free diet.
With a formal diagnosis, employers will be held to the standards of the Americans with Disabilities Act, as handled by the Equal Employment Opportunity Commission.
There is one big potential downfall to getting a diagnosis. If you don’t have already have private insurance, or access to employer or state health insurance, celiac disease may end up listed as a “preexisting condition,” resulting in higher rates or an inability to get health insurance at all.
Sticking With the DietMany people who cut out gluten just to feel better do not take full celiac precautions. Instead, they stop at the level of care that feels ok, rather than total elimination of gluten.
In the case of celiac disease, that is a dangerous way to go! Celiac disease that is not completely treated opens you up for a host of other serious health problems down the line. To be 100% gluten-free without cross-contamination is a precaution most people who experience symptoms at low levels of contamination are willing to stick to for life.
The problem is that most people can eat a little bit of gluten without noticing symptoms. If you don’t have a diagnosis, and you don’t notice symptoms, and you are not getting follow-up testing, how likely are you to stay vigilant?
I have seen so many people who did not get tested but were very clear on needing to be gluten-free go back to gluten after a couple years, or cheat on occasion with the idea that it’s “just” a sensitivity. Thing is, they don’t necessarily know that! Many people eventually end up sick again, and need to restart the healing process.
If you are already gluten-free it may not be worth the pain of reintroducing gluten to get tested. But there are good reasons to get tested if you can!
Gluten-Free 4 Life = No Reason to Test? Myth: Plausible
Update: Check out the other myths we’ve exposed so far:
- Celiac Testing Myth #1 – No Symptoms = No Celiac
- Celiac Testing Myth #2 – Go Gluten-Free First
- Celiac Testing Myth #4 – Doctor Knows Best
- Celiac Testing Myth #5 – DNA = Proof
- Wheat Allergy and Non-celiac Gluten Intolerance
- Celiac Testing Myth #6 – Negative Results = No Problems
This post is a part of Freaky Fridays on Real Food Freaks!