What is Celiac Disease?

Celiac disease (also called Celiac Sprue, non-tropical sprue, endemic sprue, gluten enteropathy or gluten-sensitive enteropathy, and gluten intolerance) is considered an autoimmune disorder of the small intestine. It affects all age groups, and is thought to be highly under diagnosed as symptoms may not be obvious (this is referred to as asymptomatic – just in case you were wondering!) Symptoms come about as the result of eating wheat, or other gluten grains (like barley, rye, and some even include oats) that contain gliadin, a gluten protein.

What Celiac Disease Does

The immune system reacts to the protein gliadin and produces a cross-reaction in the intestinal tissue, which produces an inflammatory reaction. The big problem with this is that it leads to the flattening of the lining in the small intestine (villous atrophy – for those who need to know) and that is a bad because it destroys the intestinal villi which are what the body uses to absorb the nutrients in the food we eat.

Symptoms

Symptoms of Celiac Disease, when present, include chronic diarrhea, failure to thrive (in children), and fatigue, but these may be absent and symptoms in all other organ systems have been recorded. Basically, a lot of gastro-intestinal problems, kids complaining of a tummy ache all the time, eating enough to make an elephant obese but not gaining weight, or just not eating much at all. Losing weight, tired and often seemingly unrelated symptoms present, but may be related to lack of nutrient absorption.

Diagnosis

The diarrhea, weight loss, fatigue symptoms are not definitive for diagnosis of celiac disease, as a person may have celiac and not experience any of these symptoms, or they could be caused by something else as well. There are several blood tests available that will show if a person has celiac disease.

There are a few caveats to these tests:

• One – there is a 39% false-positive rating, and consequently there are physicians who put no stock at all in blood testing for celiac.
• Two – the tests will only indicate celiac, and not gluten intolerance, sensitivity, or other reactions to gluten. And
• Three – they will NOT work at all if you have already started a gluten-free diet. It is then recommended that anyone who is in an “at risk” group (don’t you just love that term!) diarrhea – or who tests positive be undergo endoscopy. At any rate, endoscopy is the only way to know for sure.

Treatment

The only treatment for Celiac Disease is to completely remove gluten from the diet. Strict adherence to the diet (gluten free) allows the intestines to heal, and symptoms stop in most cases. Just a “little slip” can bring symptoms right back and start the healing process over again. A gluten free diet is a lot harder than most people realize, as not only do you have to be careful of food that actually contains gluten, but you have to watch for additives that contain gluten (but may not say so on the label), but you also have to be careful of cross-contamination both at the manufacturing facility and at the preparation or processing facility. You would not believe how many things contain gluten – until you start reading labels that is! You will get into the habit of reading ALL labels, every time. Why? Because just when you find something gluten free that you really like, they change the recipe, or the process. Trust me on this one. You need to be constantly vigilant and ALWAYS check.

Example – Rice Chex was gluten free, and then with the “whole grain” sales pitch, suddenly it wasn’t. Whole grain, for cereal manufacturers, means they spray the cereal with barley malt before packaging. Fortunately, the food allergic community rebelled and they took it out – so now Rice Chex is once again gluten free.

Other Considerations

You need to check your medications for gluten, as well as soap, shampoo, skin creams, makeup – the works. And if you have a child who is gluten intolerant, or celiac you need to be careful of everything they handle as well – kids put their hands in their mouths! So the noodle mosaic they make at school can make them sick – so can play-doh and cereal art – all the fun day care, pre-school and early elementary learning art supplies.

Gluten Free may not be as gluten free as you think. Your best bet, if you are not sure or the source does not seem reliable, is to call the manufacturer yourself and ask them exactly what they mean by “gluten free”. Is it 100% free of any gluten protein, or is there an acceptable part per million (PPM) standard? Is the product made on equipment that is reserved only for gluten free, or are other products made on the same equipment? (You are checking possibility of cross contamination) The simple rule is always, “When in doubt – check it out”.

Snack time can be a problem as well, so be sure to always pack a snack “alternative” for your celiac (or other food allergies) child. You will also get a blue face explaining (you can tell them till you are blue-in-the-face for heaven’s sake!!) that just a little WILL hurt, and about cross contamination, and food sharing, etc.

I will tell you that people who have not experienced being or living with someone with food allergies (or any other disability for that matter) just does not understand. You can tell right away the ones who “get it”. Patience is recommended here, as well as continual education through repetition. Just keep trying!

Refractory disease

A very small number of celiac disease patients have something called refractory disease, which means they do not improve on a gluten-free diet. Perhaps because the disease has been present for so long that the intestines are no longer able to heal on diet alone, or because the patient is not adhering to the diet, or because the patient is consuming foods that are cross contaminated with gluten – it is hard to know for sure sometimes. If all other causes have been eliminated doctors can prescribe steroids or even immunosuppressants (such as azathioprine) as an option.

What you can do

If your child is diagnosed with celiac disease, or gluten intolerance, or a recommendation to be put on a gluten free (sometimes combined with casein and soy free) diet, your first step is to learn as much as you can about finding, purchasing, and preparing gluten free food. Learn to read labels on everything and find out what are indicators of hidden gluten in products (like the “whole grain” barley malt spray). Educate yourself and others who work with your child. Knowledge is your friend! And then start teaching your child to advocate for themselves about what they can and cannot eat. You will be surprised how resilient they really are.

Good Online Celiac Resource – Celiac.com

Online Celiac Support Group

Books on Celiac Disease

Great books on going Gluten Free

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