Celiac Disease In Kids - why taking out gluten might not be enough

Celiac Disease is an autoimmune condition in which the protein called Gliadin (which is a type of gluten) triggers the immune system to attack the cells of the body.

If you or your child has been given this diagnosis you've probably been told you need to follow a strict gluten free diet for the rest of your life.

I want to talk here about what a strict gluten free diet actually means and why it might not be enough if what you want is resilient health.

What's Involved In A Gluten Free Diet?

In conventional terms a Gluten Free Diet means you need to avoid the type of gluten called gliadin - it is found in wheat, rye and barley. You also need to avoid the food additives that are derived from those grains like malt extract, "spices" and modified food starch (and a long list of others).

Sometimes you'll be advised to avoid foods that could have cross contaminated with gliadin through processing or storage like oats or bulk items.

In someone with Celiac Disease, eating those foods will trigger the immune system to misfire and damage the body it is supposed to protect (hens the term auto-immunity). 

Is A Gluten Free Diet Enough?

The average Celiac patient goes on to develop, on average, 6-7 more autoimmune conditions over their lifetime, regardless of whether they're on a gluten free diet. They are also more prone to heart disease, psychiatric diagnoses, suicide and cancer.

So it seems there's more to the Celiac story than adopting a gluten free diet.

New research on the effects of gluten show that taking out gluten doesn’t, on its own, reduce inflammation, calm the immune system or regenerate the damage that gluten has caused.

One study in 2012 showed that tissue normalization, even after a strict conventional gluten free diet, only occurs in 8-20% of celiac adults. So if inflammation is still there, the health risks are still there.

Can A Gluten Free Diet Cause More Problems Than It Solves?

A strict gluten free diet is critical for Celiacs. But most get little guidance on how to properly do that and end up doing it poorly.

Researchers looking at this have found the typical gluten free diet to be deficient in amino acids, iron, folate, B vitamins, fibre, omega 3 fatty acids, zinc and selenium.

Also, the digestive tracts of Celiacs have been shown to be lacking in important bacteria. Researchers are unclear as to whether the differences in the gut ecosystem are a cause or an effect of the disease (or both). 

Remember one of my cardinal rules... whenever you take something out of the diet, you need to pay careful consideration to what you are adding in.

Failing to remember that might be why the health of many Celiacs continues to deteriorate even with a Gluten Free Diet.

What Else Can Be Done?

Avoiding wheat, rye, barley and additives derived from them is important. But there can be three more steps for the Celiac who wants resilient health:

1. Complete elimination of all grains (not just those that contain gliadin).

Immune dis-regulation can be triggered by proteins other than gliadin. Maybe another type of gluten, maybe corn or rice (corn has been shown in studies to be capable of causing the same intestinal damage in some celiacs as gliadin).

Adopting a modified Paleo diet is often a helpful way to ease inflammation and calm the immune system. You can read about why and how to do this kind of diet safely with kids here

2. Active support and regeneration of the digestive and immune systems in an effort to ward off the development of more autoimmune diseases and other health conditions. You can read about initial dietary steps to take for better digestion here.

3. Many foods labelled gluten free have been shown to actually contain small amounts of gluten. Using digestive supplements containing specific enzymes and bacteria shown to break down gluten protein can help make sure any gluten that is accidentally consumed is neutralized in the small intestine before it can cause damage. This is really only an option if your child can swallow capsules. My recommendation is one called WheatRescue made by Microbiome Labs.

Celiac Disease has been associated with digestive and neurologic conditions and we know now that digestive symptoms do not need to be present for celiac disease to be a consideration. 

If you do get a diagnosis of celiac disease it’s important to go on a healthy, nutrient dense gluten free diet but also to take those extra steps to support the immune system, address the microbiome and address the health of the intestinal lining.

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Selected References

Thompson G, et al. Gluten Content of Selected Labeled Gluten-Free Foods Sold in the US. Pract Gastro. 2013; 122: 10-16.

Sharma, et al. Gluten detection in foods available in the United States – A market survey. Food Chemistry. 2015; 169:120–126

Lerner, et al. Detection of Gluten in Gluten-Free Labeled Restaurant Food: Analysis of Crowd-Sourced Data. Am J Gastroenterol. 2019;00:1–6

Lanzini, et al. Complete recovery of intestinal mucosa occurs very rarely in adult coeliac patients despite adherence to gluten-free diet Aliment Pharmacol Ther. 2009; 29:1299–1308.

Rubio-Tapia, et al. Mucosal Recovery and Mortality in Adults with Celiac Disease after Treatment with a Gluten-Free Diet. Am J Gastroenterol. 2010; 105(6): 1412– 1420.

Mitea C. Efficient degradation of gluten by a prolyl endoprotease in a gastrointestinal model: implications for coeliac disease. Gut. 2008;57:25–32.

Vici G, Belli L, Biondi M, Polzonetti V. Gluten free diet and nutrient deficiencies: A review. Clin Nutr. 2016;35(6):1236-1241. doi:10.1016/j.clnu.2016.05.002

Krishnareddy S. The Microbiome in Celiac Disease. Gastroenterol Clin North Am. 2019;48(1):115-126. doi:10.1016/j.gtc.2018.09.008

Kayar Y, Dertli R. Association of autoimmune diseases with celiac disease and its risk factors. Pak J Med Sci. 2019;35(6):1548-1553. doi:10.12669/pjms.35.6.821

Khan MR, Nellikkal SS, Barazi A, Larson JJ, Murray JA, Absah I. The Risk of Autoimmune Disorders in Treated Celiac Disease Patients in Olmsted County, Minnesota. J Pediatr Gastroenterol Nutr. 2019;69(4):438-442. doi:10.1097/MPG.0000000000002418

Sel ÇG, Aksoy E, Aksoy A, Yüksel D, Özbay F. Neurological manifestations of atypical celiac disease in childhood. Acta Neurol Belg. 2017;117(3):719-727. doi:10.1007/s13760-017-0781-z