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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; in fact, they opposed it. But this was a huge help to my son, who is still gluten free at age 20 today.

What our doctors didn’t realize is that you can have gluten sensitivity – an immune response to gluten – without 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. It can wreak havoc on the brain and epithelial tissues (GI tract, mouth, tongue, lungs), and can increase your risk for certain cancers and neurological conditions. Gluten sensitivity is also implicated in many autoimmune conditions besides celiac disease, from diabetes and Hashimoto’s thyroiditis to muscular dystrophy.

Celiac disease, which is an autoimmune reaction to your own gut, is just one of many symptoms of gluten sensitivity, albeit an end-stage one. What is rapidly emerging in medical practice and academic press is that eating gluten can trigger autoimmune reactions in tissues besides the gut, such as your thyroid gland or your brain.

This isn’t a fad, or fiction. It’s fact. But the grey area is individual variation.

Whether or not someone will benefit from a gluten free diet takes thoughtful assessment with a knowledgeable practitioner. Ultimately, only actually trying a gluten free diet will answer this question for you – but, see below – it has to be uber strict, and long enough for the body to drop circulating levels of antibodies to gluten. Only then will those antibodies no longer be able to attack any of your own tissue in an autoimmune, cross-reactive fashion – and this can take four to six months at least. “I tried it for a month and it didn’t work” doesn’t mean much, unless you do actually have celiac disease. In that case, most people feel better pretty quickly, as soon as a three or four days going gluten free.

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, and don’t even check for it; others only advise avoiding gluten once it creates the full meltdown of celiac disease, confirmed with biopsy.

Luckily, you can find out exactly what is up 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, or contact me for an appointment. I provide screening for gluten sensitivity, celiac serology, or gluten allergy if other resources in your insurance network can’t or don’t. And, I guide families on how to transition off gluten, what to eat, how to cook and bake gluten free, and more.

Gluten Reactions: Lab Test Basics

Wheat Allergy Test: This test checks for immunoglobulin E (IgE) reaction to wheat. 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,  constipation/diarrhea, eczema. Wheat allergy can be negative while gluten sensitivity is positive; the two don’t always happen together, so both should be ruled out.

Gluten Sensitivity Test: This test checks for a sensitivity or delayed reaction to wheat or gluten, mediated by immunoglobulin G. It can also check IgG to gliadin, which is part of gluten. 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. 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, difficulty with schoolwork or attention, and sensory irritability.

Gluten Sensitivity Test, Again: EnteroLab and  Genova Diagnostics use a stool or saliva sample to check for other 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 weak overall nutrition status.

Genetic Testing: This checks your genetic odds for being gluten sensitive or acquiring celiac disease, but doesn’t measure reactions to gluten. This is often done as part of a celiac diagnostic process, because it’s unlikely you will develop celiac disease without the gene haplotype that helps make it happen. Click here to learn about HLA-DQA1 gene and here for HLA-DQB1 gene.

Tissue transglutaminase (TTG), Reticulin, and Endomysial Antibody Tests: These tests look for antibodies to your own gut tissue and enzymes. If positive, celiac disease is highly suspect. A gut biopsy may follow, to see if your gut wall is actually already damaged by the chronic autoimmune inflammation caused by these antibody reactions. In this case you are literally attacking yourself. These do not gauge reactions to gluten itself. The gluten sensitivity tests mentioned above can be positive, while these autoimmune reactions are negative, a scenario I’ve seen hundreds of times in my pediatric nutrition practice. Ding! You don’t have celiac disease (yet). You do have gluten sensitivity, and may benefit from a gluten free diet.

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. We are in the midst of a scientific discovery process that many people may not tolerate gluten. And we haven’t even touched on the controversy around how the wheat we grow and eat today has changed dramatically in the last sixty years, possibly contributing to the problem, as has the heavy use of pesticides on it like glyphosate. Many conditions may have an inflammatory component that includes gluten sensitivity.  Such as…

ADD or ADHD, autism, non-verbal learning disability, Asperger’s syndrome

Down’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!