Gluten Free Diet: Fad, Fact, or Fiction?

Gluten Free Diet: Fad, Fact, or Fiction?

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 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!

The Rochester Autism-Diet Study: What Went Wrong

Growth data wasn’t part of the study

You may have seen the press often refer to a study from the University of Rochester that claims to debunk whether special diets help children with autism. This is one of those studies that gets legs and is off and running. Well, it got under my skin. Not only was this study on nutrition interventions for autism diagnoses poorly designed (in spite of the researchers calling it “the most controlled to date”) – turns out, I was born in the hospital where it was done! The challenge was on.

The study’s flaws are many. In fact, I couldn’t help but notice that it appeared designed to bury or defeat a beneficial effect from using a special diet measure for an autism diagnosis. The take-away from this work was essentially that “special diets don’t help children with autism” – when it should be “diets may help some kids with autism, but we can’t know which ones, unless they are screened for nutrition and GI problems.”

Don’t lose heart, and don’t believe this fail of a study. Here’s what went wrong:

It was too small – and its authors acknowledge that.  Only 14 children were in the test group.  By contrast, Dr. Andrew Wakefield got roundly criticized for noticing an effect in only 12 children, in his original Lancet piece on autism and gastrointestinal features. We can’t have it both ways: If it’s invalid to see an effect because you saw it in only 12 children, then it’s also invalid to say you saw no effect in only 14 children. The fact is, both findings deserve more study.

Children with gastrointestinal symptoms were excluded – meaning that the very children who might benefit from a nutrition intervention were purposely left out! Why? Again, lead author Susan Hyman MD acknowledges this flaw: “The study didn’t include children with significant gastrointestinal disease. It’s possible those children and other specific groups might see a benefit.” In fact, one child who was found to have celiac disease was excluded as well – an obvious candidate for improvement on a GF diet. Another was excluded for iron deficiency. Thank goodness these kids were initial candidates. How else would their parents have learned that their children had serious problems known to impair learning, growth, development, and immune function, treatable only with a nutrition intervention? It’s incredible that this study actually left out kids with the most to gain from a gluten / casein free diet!

Was soy allowed? Nobody knows – No mention is made of what protein sources replaced gluten and casein. If soy was allowed, this is a sure fail. It will confound progress, because soy protein forms the same opiate-like peptides in those who have maldigestion, can be constipating or cause bloating, and is often inflammatory. Using it as a daily protein replacement (soy milk, soy yogurt, tofu, edamame or other soy foods) will erase benefits of removing gluten and casein.

It was too short – Study duration was only four weeks – too short to notice a significant effect from removing gluten or casein. This is because it can take three to six months for antibodies to foods to drop, and several weeks for diet-sourced opiate peptides from foods to drop also. The authors cut the trial too short – but get this: The authors did notice a positive effect, but it did not reach statistical significance. With a more appropriate length trial, a statistically significant effect may well have been seen. Typically, in my clinical practice, benefits are just starting to emerge at about week three or four of a GF CF trial; I recommend a three to four month trial before drawing conclusions.

Nutrition assessment was partial and weak – A weak pre-trial nutrition assessment was done. It screened for iron status, vitamin D level, and IgE food allergy to wheat or dairy. It left out screening for IgG food reactions, bowel infections, other gut health concerns, other mineral or vitamin status,  or growth impairments. There was no post-trial nutrition assessment, and there’s no mention of standards like body mass index or growth parameters. This means we have no idea what these kids’ nutrition diagnoses actually were at the start. We also never learn if their nutrition status improved during the trial, or if the GF CF diet was even indicated for them. Many nutrition problems are documented in children with autism, including low body mass index, growth failure, low ferritin, other vitamin and mineral deficiencies, low essential fatty acids and omega 3 fatty acids, bowel infections, and so on. The authors had an opportunity to get a good work up on these kids pre and post trial, but passed on it.

Was the food truly “blinded”? – Though the authors made an effort to “blind” the food, it’s a stretch to think that food can indeed be blinded – especially for children with autism. These tend to be kids with extremely picky appetites and a fierce radar for ingredients and textures they either want, or hate. But we’re left in the dark on how successful that was for families in the study.

The study errs in its very premise – that we can test a single diet as a treatment for autism, which isn’t exactly possible. Kids with autism vary for their nutrition and GI concerns, and may need different treatment protocols for these.

It’s a fail. The study authors picked children with autism who were least likely to respond, tested them too briefly, and permitted confounders like soy, other nutrition deficits, or GI problems. This design is akin to randomly choosing a group of kids with autism with widely varying and unassessed differences in behavior or functional ability, giving all of them Ability for two weeks, and then, when results are lackluster, declaring all psychiatric medications to be of no value to children with autism.

Special diets treat nutrition problems. Autism is often accompanied by these. Call it what it is and do the job right. You can screen children with autism for nutrition problems beyond the sparse, low sensitivity tests these authors used. Work from there to help your child learn, grow, thrive, eat, sleep, and behave better. Help them to potential. Start with my E-Book Five Essential Lab Tests For Kids With Autism – this can define the workable pieces most likely to help your child, and help with how to get these tests done as cheaply as possible. Here’s to your kids’ health, wellness, and happiness!