By Jeffrey Lee, a parent and not a doctor. Updated .
Celiac, wheat allergy, or sensitivity?
three conditions, and only one of them is autoimmune
Which one you're dealing with changes how careful you have to be, and
whether a crumb matters at all. This planner is built for the strictest
case, celiac disease. If you're casual about celiac, you do real damage.
Autoimmune
Celiac disease
Celiac disease isn't an allergy and it isn't an intolerance. When you eat
gluten, your immune system attacks the lining of your own small
intestine. Over time, that damage causes long-term problems.
The damage happens whether or not you feel anything that day. "A little
bit won't hurt" is wrong for exactly that reason. It's also the
hardest thing to explain to people who mean well.
How strict
Total, for life. Even trace amounts count. A shared fryer is enough on its own, and so is a pot of water that has cooked wheat pasta.
How common
Roughly one in a hundred people.
Allergy
Wheat allergy
This one is a true allergy, running on the same machinery as a
peanut or shellfish allergy. The immune system makes IgE
antibodies against wheat proteins, not against gluten
specifically. A reaction can come on fast and it can be severe,
up to and including anaphylaxis.
With a wheat allergy, "gluten free" is the wrong filter, and it's wrong
in both directions. Barley and rye contain gluten but they aren't
wheat. And "gluten free" on the front of a package tells you nothing
about the other allergens inside.
How strict
Strict about wheat, but what counts is different from celiac. You're reading labels for something else.
Over time
Many kids outgrow it. Celiac disease doesn't work that way.
Sensitivity
Non-celiac gluten sensitivity
People get real symptoms after eating gluten, but without the autoimmune
damage of celiac disease and without the allergic reaction of a wheat
allergy.
Doctors diagnose it by ruling the other two out first. Researchers still
haven't settled on what causes it. For some people, other parts of
wheat seem to be the trigger, not the gluten.
How strict
Usually guided by symptoms, not by damage, so trace exposure tends to matter less. Ask your doctor how strict you need to be.
Testing
No single test confirms it. Celiac disease has to be ruled out properly first.
Choice
Gluten free by preference
There's no medical reason behind this one. If you don't have one of the
conditions above, cutting gluten hasn't been shown to do anything for
you. Gluten-free processed food also tends to carry less fiber and
more sugar and fat than the food it replaces.
You still need to know about it. Some kitchens hear "gluten free" and
think it's a preference they can accommodate, not a medical
requirement. A lot of cross contamination starts right there.
How strict
Whatever you like. This is the group the strict ones get mistaken for.
Is a gluten allergy a real thing?
Not as a diagnosis, no. It's the phrase most people arrive with, and
it usually turns out to mean one of the three conditions above.
You can be allergic to wheat. You can have celiac disease, which is
autoimmune rather than allergic. You can have a sensitivity that's
neither. There's no separate gluten allergy diagnosis, the way there
is for peanuts or shellfish.
The word matters more here than words usually do. Tell a kitchen
you've got a gluten allergy and some of them hear a preference, held
firmly. Tell them it's celiac disease and you've named something they
can look up. Done properly it starts a different procedure
altogether: fresh gloves, a clean board, a pan that hasn't had bread
near it, and often someone senior checking the ticket. The phrase you
use changes the plate that comes back.
When it doesn't look like being sick
Celiac disease in a child often doesn't look like a sick child.
That's the part that catches families out.
It shows up as constipation at least as often as diarrhea, which is
the opposite of what most people expect. Growth that slows down, and
nobody notices for a while because it happens slowly. Dark circles
under the eyes that never quite clear. Low iron that no one can
account for.
Constipation is worth its own line, because it goes further than most
parents know. A child who is badly constipated can start having
daytime accidents, and wetting is not something anyone traces back to
gluten.
None of these prove anything on their own, and every one has a dozen
other explanations. That's the problem. Each one is easy to explain
away by itself, and the picture only shows up when somebody lines
them up.
Plenty of children have no symptoms at all. They get found because
somebody tested them, not because they seemed ill.
How do you find out which one you have?
Three conditions, three different routes, and the order they happen
in matters.
Celiac disease usually starts with a blood test, looking for the
antibodies your immune system makes in response to gluten. If that's
positive, the next step is normally an endoscopy to look at the small
intestine directly. Both of them need you to still be eating gluten.
Wheat allergy is a different test and often a different doctor. An
allergist looks for the antibodies behind an allergic reaction,
usually with a skin prick test or a blood test. Neither one tells you
anything about celiac disease.
Non-celiac gluten sensitivity has no test at all. It's what's left
when the other two come back negative and gluten still makes you feel
ill. That's the reason the order matters: the two that can be
measured get measured first.
Get tested before you cut gluten out
Celiac tests look for your body's reaction to gluten. If you've already
stopped eating it, the tests can come back negative even when you do
have celiac disease. You might then be asked to eat gluten again for
weeks before anyone can retest you, and that's a miserable thing to
hear after the fact. If you think it might be celiac, talk to a doctor
before you change what you eat.
This is background information. It isn't a diagnosis and it isn't medical
advice. Testing, diagnosis, and how strict your own diet needs to be are
all things to work out with your doctor or a dietitian.