Gluten-free is a big part of my pediatric nutrition practice. It has also been my life since 1998, when we pulled gluten out of my son’s diet. He was 22 months old. Within two days, he had the first formed stool of his life. No more gold slimy lumpy stuff to burn his skin. Bloating, gone. Allergic shiners, gone. Anxiety, crying, sleep – all began to improve dramatically.
This was a big eye opener for me, after a very difficult start for my son. I’d been a nutrition professional for a decade, and had two degrees in nutrition; I was a registered dietitian who had worked in research, grant writing, and patient care. But I never knew gluten could wreak so much havoc without a celiac diagnosis. None of our pediatricians suggested this path – they thought it was pure folly.
What they didn’t realize is that you can have gluten sensitivity – an immune response to gluten – without having celiac disease. Celiac disease is an end-stage symptom of gluten sensitivity. It can leave an intestinal wall atrophied and unable to function; it may trigger chronic diarrhea, unintended weight loss, meager growth, anemia, or skin changes (dermatitis herpetiformis). Gluten sensitivity can precede a full blown celiac diagnosis by many years. Meanwhile, if you’re eating gluten, it can wreak all sorts of havoc on the brain and epithelial tissues (GI tract, mouth, tongue, lungs), and can increase your risk for certain cancers and neurological conditions. Celiac disease is just one of many symptoms of gluten sensitivity, albeit an extreme one.
So, does your child or teen need a gluten free diet? Or is it just a fad? You can ask your pediatrician, but he may not be much more informed than mine were. Many docs still regard gluten sensitivity as benign, unless it creates the full meltdown known as celiac disease. Luckily, you can just go find out if this is operating for your child. Several resources are available now to look for gluten sensitivity. If your pediatrician isn’t helpful with tests below, you can work with DirectLabs.com to sort it out.
Gluten Testing 411:
Wheat Allergy Test: A pediatrician, family practice doc, allergist, or GI MD is the usual in-network resources to order this blood test for your child. This can also be checked with a skin prick test, to see if a hive or wheal develops. It checks for a classic allergy reaction, which will usually create symptoms like hives, vomiting, headaches, stomach pain or constipation/diarrhea of unknown origin, eczema. Wheat allergy can be negative while gluten sensitivity is positive; the two don’t always happen together, so both should be ruled out. The test checks levels of immunoglobulin E (IgE) to wheat.
Gluten Sensitivity Test: If you need to reach beyond your pediatrician, allergist, or GI doc for this blood test, check with labs like Cyrex, Alletess, Great Plains Lab, or Genova Diagnostics and ask for help. This test will look at levels of immunoglobulin G (IgG) to gluten, the protein in wheat. It can also check IgG to gliadin, which is part of gluten. This test checks sensitivity, not an allergy. Common symptoms with sensitivity to a food protein include irritable stools, reflux, bloating, headache, mood changes or anxiety, fatigue, allergic shiners at eyes, mild eczema that comes and goes, and sensory irritability.
Gluten Sensitivity Test, again: EnteroLab and Genova Diagnostics use a stool or saliva sample to check for other potential gluten-reactive immunoglobulins called IgA and IgM. No blood draw needed, but false negatives may be more common with this test, especially for people with chronic illness or low nutrition.
Genetic Testing: This checks your odds for being gluten sensitive or acquiring celiac disease, but doesn’t measure reactions to gluten.
Tissue transglutaminase (TTG), Reticulin, and Endomysial antibody tests: These are used to check for villous atrophy, aka gut wall damage; if positive, celiac disease is highly suspect. These do not gauge reactions to gluten itself.
Elimination Diet – This means total avoidance of gluten for a while, to gauge improvement. Persons with celiac disease usually improve quickly when they first withdraw gluten, within a week or two or even faster. Persons with gluten intolerance may not notice dramatic shifts until a few weeks later. And, if there are other food proteins that bother your immune system, you may not notice any improvement on a gluten free diet at all. This could mean you’re not reactive to gluten, or, it could mean you react to gluten and some other foods you didn’t withdraw. Not sure? Do some blood work to sort it out. Especially for kids, elimination diets are cumbersome and time consuming. If your child is struggling, it’s expedient to do the lab testing. Talk to someone knowledgeable about gluten sensitivity who can review lab findings in the context of signs and symptoms, for a final decision on what to do.
Fad? Nope. It’s discovery that many people may not tolerate gluten. Facts are growing that many conditions may have an inflammatory component that includes gluten sensitivity. Such as…
ADD or ADHD, autism, non-verbal learning disability, Asperger’s syndrome
Type 1 diabetes
Anxiety, depression, mood swings
Reflux, picky weak appetite, slow growth or gain
Sensory challenges, verbal or motor dyspraxia
Anemia, iron depletion, frequent infections
Chronic irritable stools, constipation, loose stools
Chronic headaches or migraines
In those scenarios, I regard gluten guilty until proven innocent. The fiction part? It’s definitely fiction that symptoms hobbling your child’s learning, growth, or behavior don’t matter. They do matter, and you can easily find out if gluten is part of the story. If it’s working against your child, a gluten free diet will be worth it. It’s so much easier than it was in 1998!