Conquering Celiac Disease: What to Do When Your Child is Diagnosed with Gluten-Sensitive Enteropathy
What is Celiac Disease?
Celiac disease (also called Celiac Sprue and Gluten-Sensitive Enteropathy) is an autoimmune condition that is triggered by contact with gluten, a protein found in some grains like wheat, rye, and barley. Autoimmune conditions are immune reactions where the body starts to attack its own tissues. In the case of celiac disease, the antibodies that are produced cause damage to the small intestine.
The exact cause of celiac disease is not known, but like many things it seems to be a combination of genetics and environmental factors. There are two genes, HLA-DQA1 and HLA-DQB1, that increase the risk of developing the disease. Because of this genetic component, celiac may occur in multiple members of an affected family.
Symptoms of Celiac
Symptoms of celiac are extremely varied. Even though the damage happens in the digestive tract, symptoms may be felt in many areas of the body.
Common symptoms of celiac include:
- Diarrhea and bloating
- Weight loss, short stature, and failure to thrive
- Anemia and nutritional deficiencies
- Skin rashes
- Mouth sores
- Numbness and tingling in the feet or hands
- Cognitive impairment and learning difficulties
Because the symptoms are so diverse and generalized, doctors may overlook a diagnosis of celiac disease. If your child is having severe digestive issues or has been diagnosed with failure to thrive, you should talk to their doctor about running tests for celiac disease.
Is There a Difference Between Celiac Disease and Gluten Sensitivity?
Yes! Gluten sensitivity is NOT the same thing as celiac disease. Many people find that they don’t feel as well when they eat gluten and they may consider themselves gluten sensitive, but this doesn’t necessarily mean that they have celiac disease.
Food sensitivities can occur when the immune system creates antibodies to certain foods, but unlike celiac disease, gluten sensitivity is not an autoimmune reaction and it doesn’t typically cause significant damage to the intestines. If your child has uncomfortable symptoms after eating gluten but their celiac tests have been negative, they may have non-celiac gluten sensitivity.
There are blood tests for food sensitivities that check for elevated antibody reactions to numerous foods including gluten. These blood tests can be helpful to evaluate for food sensitivities, but you should also trust your gut. An elimination diet is still considered the gold standard to evaluate for food sensitivities. An elimination diet is simple: if your child has symptoms after eating a food and the symptoms go away when they aren’t eating that food any more, they probably have a food sensitivity.
For more information about Gluten intolerance vs celiac disease please read Should Your Child Avoid Gluten?
Treatment for Celiac Disease
The only true treatment for celiac disease is to follow a life-long 100% gluten-free diet. People with celiac disease also need to make sure to avoid gluten in their vitamins and supplements and their personal care products like soaps and shampoo. Even things like paste and playdough often have gluten in them.
For people with celiac there are also a variety of supportive treatments that can help with gut healing, including probiotics, digestive enzymes, and herbs. Many naturopathic doctors are experts in supporting digestive health and can help your child through the healing process. They can also help to calm down damage if your child accidentally gets “glutened.”
How You Can Support Your Child with Celiac
Reading nutrition labels and ingredient lists can be incredibly confusing, so take the time to become informed about hidden sources of gluten. Key words to look for include wheat, spelt, rye, barley, kamut, semolina, durum, and malt. It is important to know that products may be labeled as “gluten-free” even when they contain trace amounts of gluten. The Food and Drug Administration (FDA) allows manufacturers to use the term gluten-free if their product contains less than 20 parts per million (ppm) of gluten. Unfortunately, this may still be enough gluten to cause damage in someone with celiac. If in doubt, call the company or choose another product with less confusing ingredients.
Avoid Cross Contamination
If your entire family will not be going gluten-free, it’s important to avoid cross contamination for your child with celiac. Cross contamination occurs when small amounts of gluten make their way into gluten-free foods. This is a concern for people with celiac, because even very small amounts of gluten can cause significant damage to their digestive systems.
You will need to have separate food containers and food preparation equipment to use for your child and make sure to adequately clean and remove any sources of gluten from things your child’s food may come in contact with. It is also a good idea to store gluten-free food items in separate, dedicated areas of the refrigerator and pantry to avoid cross contamination.
Inform Your Child’s School and other Caregivers
School lunches, play dates, sleepovers, and parties can all seem terrifying when your child is first diagnosed with celiac, but they don’t have to be a nightmare. A little bit of planning and communication can make it all much easier.
Start by planning a meeting with your child’s school to talk about how they will ensure your child has a gluten-free environment while there. If your child attends a public school you might also consider setting up a 504 plan. A 504 plan is a legal protection that comes from the Rehabilitation Act of 1973. This act prevents discrimination against public school students in grades K through 12 because of disabilities. Having a 504 plan in place guarantees that a school will make specific accommodations for a child with a disability or medical condition, not just in a particular classroom, but throughout their school career
To safely navigate parties and other outings, talk to the adult in charge well in advance of the event to let them know that your child has celiac. You may need to educate them that celiac is not a fad-diet, but a serious autoimmune disease. If the event will involve a meal or snacks, you might offer to bring something that is gluten-free so that you know that your child will have something that they can safely eat.
Consider Joining a Gluten-Free Support Group
It can be amazing to talk with other families that are going through a similar challenge. The Gluten Intolerance Group is a wonderful resource for sharing tips, restaurant and recipe recommendations, and camaraderie. They have branches in many cities throughout North and South America.
Gluten-Free Meal Ideas and Goodies
Never fear, there are lots of delicious gluten-free and grain-free foods that your whole family will love! Here are just a few of my favorites:
- Gluten-free, Dairy-free Snack Ideas
- Against All Grain
- Gluten Intolerance Group Gluten-Free Recipes
- Nom Nom Paleo
- Paleo Banana Blueberry Muffins
- Paleo Persimmon Cookies
- Gluten-free, dairy-free, soy-free Paleo Almond Pecan cookies
- Gluten-free Christmas Cookies
- Gluten-free backpacking meals
- Any recipe at GlutenFreeGirl.com
- Don’t forget about GFFmag.com!
Further Reading and Resources about Celiac Disease
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jewel46October 6, 2018 at 10:37 pm
My daughter has been diagnosed with Gluten Sensitive Enteropathy. The symptoms are severe and debilitating. She is bedridden with migraine and muscular cramps for three days after minute exposure (cross-contamination or inhalation that results in ingestion of particulates). It has been difficult finding support outside of Celiac organizations. This is as severe as Celiac. She may not be exposed to any gluten, yet she is not allergic. Where can I find more support for our family?
Erika KrumbeckOctober 7, 2018 at 9:11 am
I highly recommend finding a good pediatric ND to work with. (Check out http://www.pedanp.org to find a pediatric ND near you.)
When a patient has *non*-celiac gluten sensitivity I have found most patients have significant dysbiosis (abnormal intestinal flora), small intestinal bacterial overgrowth (SIBO), or another reason that is causing major food sensitivities. If she were my patient I would probably do a stool test and/or SIBO test and treat that first. She needs to heal her intestinal lining to be able to tolerate gluten cross-contamination better.
I hope this makes sense!