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

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

Current conventional standard of care treatment is to follow a strict gluten-free diet for the rest of your life.

I want to talk here about what else can be done to support the resilience of a child diagnosed with Celiac Disease.

What's Involved In A Gluten-Free Diet?

In conventional terms a Gluten Free Diet means you need avoid gliadin - a certain type of gluten 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), along with foods that may have been cross-contaminated with gliadin in processing and storage facilities.

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?

Studies in autoimmunity tell us that once a person is diagnosed with an autoimmune disease like Celiac, they are likely to develop, on average, 6-7 more autoimmune conditions over their lifetime. For Celiacs, this is regardless of whether they're on a strict gluten-free diet.

Once an autoimmune condition has developed, the person also becomes more prone to heart disease, psychiatric diagnoses, suicide and cancer.

So if we want true health and resilience there's more to the Celiac story than adopting a gluten-free diet.

New research on the effects of gluten shows that while taking out gluten is crucial, this doesn’t necessarily reduce the 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 despite the gluten-free diet, 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 guidance on how to do it without risking nutritional deficiency is crucial. 

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 these differences are a cause or an effect of the disease (or both). 

One of my cardinal rules that I teach to all my clients is this... whenever you take something out of a child's 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, cross-contamination, and additives derived from gluten is important. But there can be three more steps for the Celiac who wants resilient health:

1. Robust food sensitivity testing 

Once the immune system is misfiring and the gut is destabilizied, the likelihood of other food sensitivities is high. Further immune dysregulation can be triggered by gluten proteins other than gliadin or maybe corn or rice. In fact, corn has been shown in studies to be capable of causing the same intestinal damage in some celiacs as gliadin.

Comprehensive food sensitivity testing can be helpful here as can adopting a modified Paleo diet. This can ease inflammation and calm the immune system, lowering the chance of developing complications and more autoimmune diseases. 

>> Read about Paleo diets for kids here

>> Read about food sensitivity tests for kids here

>> Read about gluten testing for kids here

2. Active support and regeneration of the digestive and immune systems.

Because that 2012 study showed that tissue normalization even after a strict conventional gluten-free diet only occurs in 8-20% of celiac adults, taking steps to improve the digestive ecosystem once you've gotten your Celiac diagnosis is crucial. This may go a long way toward warding off the development of more autoimmune diseases and other health conditions.

>> Read here about initial dietary steps to take for better digestion.

3. Using digestive supplements containing specific enzymes and bacteria shown to break down gluten protein

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. 

The Bottom Line

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 your chlid gets a diagnosis of celiac disease it’s important to go on a healthy, nutrient-dense, gluten-free diet.  But taking these extra steps will support the immune system, the microbiome, the health of the intestinal lining and your child's overall health and resilience

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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