WHY GET TESTED FOR CELIAC DISEASE WHEN YOU CAN JUST GO GLUTEN-FREE??
ALWAYS GET TESTED FOR CELIAC DISEASE when you are on a gluten-containing diet before you decide to try to go gluten-free!
Reasons to know if you have celiac disease (CD) or non-celiac gluten
sensitivity (NCGS) before you go gluten-free are below. NCGS DOES effect
the immune system, thought it is not the auto-immune aspect of our
immune system. Once you go gluten-free and feel fabulous, it can be
disastrous (symptoms are often worse as your immune system becomes
hypervigilant to gluten) trying to reintroduce gluten back into your
diet for the sake of testing. So get tested before going gluten-free.
I do not agree with the hundreds, maybe thousands of practitioners,
nutritionists, health coaches, personal trainers, well-meaning
co-workers or relatives who tell their patients/clients/friends, "just
try going gluten-free" or "try this grain-free/Paleo diet" without being
tested for celiac disease. These are some of the reasons why off the
top of my head:
1) With a diagnosis of celiac disease you are
indeed offered protection under the ADA, and can take all the expense of
creating a gluten-free household off on your taxes (cooking
pans/cutting boards/tupperware out and Pyrex containers/wood
utensils/all plastic utensils + spatulas,etc) because it is a medically
necessary condition, as well as the DIFFERENCE between the costs of
regular gluten item and the GF item. Ask your accountant. If they don't
know what you are talking about, find someone who does. There are many,
many well-written detailed blog posts about this, so I won't elaborate
2) with a diagnosis of CD, you can then have your
gastroenterologist follow up with repeat blood work in 6 months and 12
months as well as a repeat endoscopy in 12 months to determine the level
of healing/remaining damage AND it's covered by insurance. Prior to
your endoscopy, interview your gastroenterologist to be sure that they
will take 4-6 biopsies which is the standard of care. Most GI's only
take 2 b/c they are busy. They need to take 2 from the duodenal bulb and
4 from the duodenum itself. If they want a 50% increased chance of
diagnosing celiac disease, then they do a "jejeunal push" which means
they push the endoscope into the next section of the intestine, the
jejeunum and take a biopsy from there. Research shows a 50% increase in
detection CD. (REMEMBER: lab work and endoscopy are not perfect, just
3) with CD you have a lab test that defines what is
going on. With a diagnosis of CD, ALL your 1st and 2nd degree relatives
should be tested and this would be covered by insurance b/c there is a
family history. CD is genetic. A genetic test rules in or out the
possibility of celiac disease. 30-40% of us have the celiac gene and
only about 1% of the population has celiac disease. So having the gene
tells you it's possible. Not having the gene tells you it's highly
unlikely. You can also get gene subtyping done which tells you if you do
have the gene how likely it is that you have celiac disease. Enterolab.com does this test. In Canada a lab runs the GeneSure from glutenpro.com.
Celiac disease is an inherited permanent condition, and it the genes
can express themselves at ANY age - 4 yrs old, 14 yrs old, 40 yrs old or
80 yrs old. If there is a relative with CD then any 1st or 2nd degree
relative eating wheat/gluten who has new symptoms should be retested for
4) whether CD or NCGS, you need to be 100% GF b/c
research shows with "cheating" or gluten-contamination, there is an
increased risk of intestinal cancer with repeated post-diagnosis
exposure to gluten. And just because you have NCGS, you can have as
severe if not more severe reactions to gluten than someone with CD. It
works both ways. There is silent CD where the person eats gluten and
doesn't feel a thing - nothing. They have chronic iron deficiency anemia
or osteoporosis or elevated liver enzymes - and you don't "feel" those.
They might have headaches, or fatigue or joint pain. A person with NCGS
might have severe stomach or abdominal pain or diarrhea or extreme gas
or heartburn, or all of the above. NCGS does NOT mean less severe
5) there are associated cancers for you and your
PCP/Gastro to watch out for including thyroid cancer, stomach cancer,
intestinal and colon cancer. Knowing that you actually do have CD means
your insurance will pay for more regular scans such as an early
colonoscopy before 40 years old, more regular ultrasounds, etc.
there is an increased risk for associated auto-immune disease with a CD
diagnosis: Hashimotos thyroid, Lupus, rheumatoid arthritis, adult
autoimmune diabetes, autoimmune hepatitis, etc. and your PCP should
screen you for these.
7) any person with CD should get a DEXA
scan to ascertain bone density ASAP, even children to rule out
osteoporosis - and it's covered by insurance b/c of the CD diagnosis.
I've seen a 16 year old soccer player break her hip - she had just been
diagnosed with celiac disease and they didn't do a bone scan.
8) your PCP or Gastro will run a full panel of vitamin and mineral lab
tests to ascertain if you have a vit/min deficiency and it's covered by
insurance. If you have mild, moderate or severe intestinal damage, you
might have severe vitamin and mineral deficiency that needs to be
9) your holistic physician can help you heal and
seal your gut and help you avoid foods that cross-react with gluten.
Some foods MAY cross-react, meaning that the body mistakes them for
gluten and reacts to them just like gluten, even though they are
otherwise nutritious non-gluten containing foods. Important to seek help
of someone who specializes in celiac disease. I've heard too many
complaints of a PCP or GI saying, "You have CD, go gluten-free" and
that's the end of it. Well, that's just the start!
OKAY - these
are just off the top of my head. If ANYONE thinks that it's okay to
tell a person to "just go gluten-free" without being tested for celiac
disease first, they are insane, or just plain uneducated about the great
risks they are taking with the lives of those to whom they have given
that poor advice.
Do WHATEVER tests you can to rule in or rule out celiac disease FIRST before going gluten-free.