Celiac Testing Myth #3 - Gluten-Free 4 Life = No Reason to Test

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 are tax deductions available in the USA and Canada for the added cost of gluten-free food.

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 Diet

Celiacs Do It Gluten Free

Celiacs Do It Gluten Free

Many 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:

This post is a part of Freaky Fridays on Real Food Freaks!

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5 comments to Celiac Testing Myth #3 – Gluten-Free 4 Life = No Reason to Test

  • That’s really interesting about the tax breaks with a formal Celiac diagnosis. I’ll have to send this link to my cousin, because that might be something that would help her family. Love and hugs from the ocean shores of California, Heather ;) :) :)

    • Joy

      You really have to spend a lot before the tax breaks kick in, and record keeping is a pain. But if there are other medical expenses in the year, too, it can pay off. Just keep all those receipts!

  • Mary

    Hi Joy:
    Check out the GAPS Protocol of Dr. Natasha Campbell-McBride. We cure celiac disease with it over a 2 year period, all the time in the British Isles. The patient’s gut is healed and sealed with the Intro Diet and the proceeds into Full GAPS Diet. Of course, they can never go back to the Standard American Diet again, but can tolerate a moderate amount of grain and gluten in their diet.
    In the US, GAPS is mostly being used to detox and heal autistic kids, but the diet was originally developed to heal celiac disease. You should look into it.
    Cheers, Mary
    ps GAPS is an acronym for Gut and Psychology Disease and Gut and Physiology Disease.

    • Joy

      Hi Mary,
      We too are big fans of Dr. Natasha Campell-McBride’s GAPS Protocol. In fact, our family has been following it for a whole year now! We have even summarized much of how to do the GAPS Intro Diet, how to get one’s kitchen ready for all that whole-food cooking and fermenting, and put together resources for people who are interested in learning more about GAPS.

      We agree it can go very far in healing the damage done by many problems, especially celiac. However, I do not believe it is ever ok for someone with celiac disease to resume consuming gluten. I have observed that while the healing that takes place may reduce people’s noticeable symptoms of gluten exposure for a time, most people end up sick again in the long term if they reintroduce it.

      Since in celiac the autoimmune system is triggered by gluten, and sometimes the damage being done is not something people can feel, it is very risky indeed to reintroduce it. In order to be sure further damage was not continuing to be done, people would need to routinely get blood work and regular endoscopies and biopsies to confirm that the body was no longer reacting.

      Many celiacs go through “honeymoon periods” in their teen years or after many years gluten free, during which they have no noticeable symptoms. This resulted in doctors thinking that celiac could be “outgrown,” and that it was fine for people who had a celiac diagnosis to eat gluten if symptoms didn’t show themselves. Untreated celiac disease is correlated with higher risks for some cancers as well as the development of other autoimmune diseases. That is not a risk I’d like to take!

      The GAPS diet has been great for our family, and we may eventually try quinoa, buckwheat, rice, and potatoes someday. But we won’t be going back to gluten. The risks of continued damage are just too great.

  • Kristin

    I’d like to know how GAPS can turn off an autoimmune response? Are all the autoimmune diseases that were present now gone? Celiac is a master autoimmune disease and creates the others. Being gluten free may stop autoimmunity against the intestines but I have not found that to be the case with the thyroid, my anti thyroid antibodies are still continuing. Celiacs also cannot have quinoa. A Celiac immune system sees quinoa protein as if it were wheat protein, if you are a Celiac do not eat quinoa.

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