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“We tried that, and gluten free didn’t work. Nothing really changed.”

Parents often bring that mantra into their first visit with me, as we explore nutrition pieces that might improve life for their kids. My next task is to find out exactly what they tried – because there are a lot of ways to fail at this, and it isn’t your fault. It can be complicated. Here’s my Top Five Checklist of “fails” to avoid.

Long and Strong – This one goes without saying, and most parents who come in know this already. Long means three to six months, not three to six weeks. It can take months for circulating antibodies to gluten or gliadin (a fragment of gluten molecules, equally if not more triggering) to drop off the immune system’s radar. As long as those are circulating, they can cause trouble. So, patience! And strong means zero tolerance gluten: No oats or oatmeal (anywhere, including in those “wheat free” cookies and granola bars), no special occasion exceptions (school parties, holidays, birthdays), no processed condiments or foods with wheat derivatives. Any processed food is suspect without label scrutiny first – everything from ice cream to soy sauce to supplements and medications can have gluten in them. Check everything! Start here for info on gluten in medicines or supplements your child may use daily.

Cross Reactivity – One reason why even the strictest gluten free diet can fail – even for someone with celiac disease – is that there may be cross reactivity with other food proteins. That is, the gluten molecules (or fragments of them) look a lot like other food protein molecules to the immune system – et voila! The body is hoodwinked into thinking you just ate gluten when you didn’t, and reacts anyway. This phenomenon is already demonstrated and documented in the scientific literature. The solution in that case? Ask your provider to run a cross sensitivity panel such as Cyrex Labs Array 4 to find out if this is part of the problem. Identify what other foods you might need to eliminate, and go from there.

Other Reactions – Continuing to eat foods that your child reacts to, even without the cross reactions described above, is another common fail. In this case, the immune system may not be confusing other proteins for gluten. It may simply just react to other proteins in and of themselves, and gluten. For example, it’s common for families to try elimination diets in which one food is removed at a time. That food is put back in rotation, and then another food is removed. The problem here is if a child reacts to both foods, neither elimination is going to show much of anything. The solution is to run IgE (allergy) and IgG (sensitivity) food antibody tests for several foods, and prioritize what foods to eliminate based on these findings. I specialize in helping families interpret these lab tests, and in building a healthy strong food intake when there are more than two or three foods to eliminate. You may end up finding that your child’s biggest problem is casein (dairy) or egg protein, not gluten. And while I don’t think gluten grown in the US is a great idea for anyone to eat, if your child feels better when avoiding dairy instead, fine – the idea is to do what helps your kid feel better.

What if kids show strong reactions to many foods? In that case, judicious rotations can work, with prioritized and strict elimination for gluten and perhaps two or three other top offenders; knowing cross reactions can help refine the plan too. Meanwhile, there are many ways to replenish your child with other equally nutritious or even more nutritious foods – ask for help if it’s overwhelming.

Biome Neglect – If there is constipation, diarrhea, bloating, gas, reflux, or picky eating in the mix, going gluten free is often helpful. When it isn’t,  your child may need some biome TLC. That is, Tender Loving Care for the gut! Clear out fungal or yeast overload in the gut, along with “commensal” bacteria or microbes that are taking more than they give. We all carry a few pounds of bacteria in our intestines, and we need it. When it’s balanced in our favor, those bacteria and microbes help us digest food, fend off invaders, give us back some vitamins to absorb for ourselves, and they actually communicate with our own immune systems and genes. When it’s skewed against us, a corrupted gut biome can cause painful chronic problems with picky weak appetite, irrepressible cravings for sweets, weak digestion, and sluggish bowels or diarrhea – not to mention mood disorders. Gluten free may fail if this piece is left behind. Get a functional stool culture, and tune up with the right probiotics or other tools to balance this part out. Then try gluten free with a toned up bowel biome environment.

Too Much Restriction – Especially for those picky eaters who love eating lots of starchy processed stuff based on wheat (pizza, bread, bagels, crackers, pasta, pretzels, cookies, noodles, mac and cheese), pulling the gluten can leave you wondering what they’ll eat. It’s a double edged sword that there are loads of good tasting gluten free versions of all those foods: Your child will have plenty to eat, but it won’t be so good for them. Neither is all that stuff when it has gluten in it. Either way, this style of eating usually leaves kids lacking protein, minerals, phytonutrients, antioxidants, vitamins, and healthy fats and oils – all of which are just plain essential. Your kid might grow, a lot, or may even become overweight eating this way. But sleep, behavior, learning, mood, immune strength, and bowel habits may suffer; depression, bloating, constipation, inattention, or anxiety may persist too. Gluten or no, this way of eating isn’t healthy, and your child may not experience much benefit from withdrawing gluten if other foods and nutrients are still missing. The next step is putting back what is missing, while keeping the gluten out. This may mean that your child needs to add protein, fats/oils, or some healthy grain-free carbohydrates from vegetables or fruits, or that some supplements are needed to gain full benefit. Even a deficit of just a hundred calories, day in and day out, can derail a gluten free trial – kids are growing, and need enough to eat every day to keep pistons firing for learning, sleeping well, and playing.

Still have questions? Start here with info on testing for gluten sensitivity versus celiac disease. Hope to hear from you soon!