Celiac, Gluten and Down syndrome
This post is a share from Down Syndrome Daily
People with Down syndrome are more likely to have Celiac Disease (CD) requiring a gluten-free diet. Below is a compilation of articles on this topic. Please note that testing for celiac disease in itself is not always reliable, more information can be found on this in this link.
Studies in the 1990s indicated that children with DS are at a higher risk to develop CD than the general population. The reasons for that aren't entirely clear, but since children with DS are at a greater risk from auto-immune diseases, that CD represents another one of these type of diseases.
Children with DS who develop CD may actually have few symptoms at all, leading to what is called "silent" CD.
Since CD can show few to none symptoms in children with DS, why worry about it? Because if left untreated, CD can cause decreased growth in height in children. Untreated CD can also cause a type of cancer in the intestine called lymphoma. This cancer is a rare but serious outcome that appears in the later adult years.
Treatment is both simple and difficult: a gluten-free diet. All wheat, barley and rye products are off limits. Currently, it is recommended that oats be also eliminated from the diet at the beginning. They can be replaced in the diet as soon as the patient is doing better. In many cases, the symptoms of CD may lessen in as early as 2 weeks. The older the child, the longer it takes to come under control. CD is a lifelong disease; symptoms may from time to time subside to the point of the CD appearing to be gone, but the person must continue on the diet to avoid illness. The person may need vitamin supplementation to complete the diet.
Children with Down Syndrome should be screened for celiac disease because there is a 10% incidence of the autoimmune disorder in this population. Screening for and treating celiac disease can improve the quality of life for children with Down Syndrome.
Screening for a disease is appropriate if the disease has serious consequences, if before onset of the disease there is a detectable latent phase, and there exists a treatment that is more effective at an earlier stage. In patients with symptomatic celiac disease, a gluten-free diet for as little as 5 years can reduce or prevent gut lymphoma. Thus, with respect to gut lymphoma, celiac disease can be considered a premalignant condition. Furthermore, in a substantial proportion of cancer patients, the underlying celiac disease is not recognized until around the time of cancer diagnosis. Therefore, it would seem intuitive that identification and treatment of celiac disease at an earlier, asymptomatic stage would be even more effective.
The authors site growth failure as one of the common findings at diagnosis of celiac disease in children with Down syndrome. Impairment of linear growth becomes evident late in the course of a disease. One would expect that screening and, therefore, earlier treatment would prevent growth failure.
Coeliac disease occurs more commonly in people with Down syndrome with various studies reporting prevalence rates of 1-19% depending on age of sample and country of origin. Presentation is similar to that in the general population i.e. recurrent abdominal pain, reflux and vomiting,variable bowl habit (constipation or diarrhoea),flatulence,faltering growth and irritability.
Clinical diagnosis may be difficult or delayed as these symptoms are common in Down syndrome and may be overlooked ( diagnostic overshadowing) therefore it is important to have a low threshold of clinical suspicion and a heightened awareness of symptoms.
From Bella Online:
Relatives of people with celiac disease, sometimes called celiac sprue, have a higher possibility of gluten intolerance but may not be aware they are affected.
Joan Medlen, RD, author of The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles, is a leading resource for families of children with celiac disease. Know that you are not alone in dealing with the challenges celiac disease and gluten free living introduces into your child's life - there are well informed professionals and parents who are reaching out to others, remembering the adjustments they made in the early months after diagnosis.
It is natural for families of children with the dual diagnosis of Down syndrome and celiac disease to feel anxious or occasionally overwhelmed in the weeks following diagnosis. Your child may find changes in routines and diet difficult, but it's common for them to feel much better within weeks of starting gluten free living.
Frustration with extended family, staff at school, daycare or recreation programs can make it difficult to work out the changes that are needed for the health and well being of the child with CD. Sharing articles and medical information, and eventually writing up a one page information sheet for substitute teachers and parents of your child's friends, will help educate and inform the whole community.
There is a higher risk of this condition in individuals with Down syndrome; up to 16% of individuals with Down syndrome are believed to have Celiac disease. Because of this high percentage, all infants with Down syndrome between the ages of 2 and 3 should be screened for Celiac disease with the simple blood test. In addition, doctors should consider screening tests for adults with Down syndrome, especially when there is weight loss, poor nutrition or persistent changes in bowel habits. Left untreated, Celiac disease can result in malnutrition, decreased growth, and, in rare cases, intestinal cancer (lymphoma). The treatment is dietary and involves eliminating all barley, rye, and wheat from a person’s diet.
From Woman Gone Wise:
In my initial research of the gluten-free diet and special needs kids, I learned kids who crave these gluten-laden foods have most likely become addicted to them. There is an opiate effect that occurs and many parents have reported their own children went through withdrawal like symptoms when initially eliminating gluten. Many children with autism had a surge in their behavior. The withdrawal effects are similar to addicts withdrawing from a narcotic.
New textures, flours made of rice and beans, crumbly breads; are all things families typically learn to adjust to with this new diet. But then the behavior came. Wild behavior. AJ began tossing items across the room. He couldn’t keep his clothes on. He ran across the hall as quickly as he could, throwing his body into the door, then ran through the family room throwing his body into the back door. He ran back and forth and back and forth slamming himself into the doors and walls. His pain tolerance was even higher than usual.
I almost became frantic, until I remembered the possible withdrawal symptoms. I reread every word and it was describing our boy. Not every child with autism reacts with heightened symptoms, I believe it is a small percentage, and of course our family hits the jackpot again. I kept him home from school the first week until his body adjusted and calmed down.
also from Woman Gone Wise: How will your child learn to make healthy new choices?
Make an accessible food cupboard or basket for your child. Put their name on the cupboard and celebrate the cupboard as his or her own.
Label packages. Highlight the words “Gluten Free” on the food packages with a highlighter or tape your own colorful label on the gluten-free product.
Label choices. Make a picture board of healthy and fun gluten-free choices: fruit, crackers, yogurt, etc. Tape the picture board on the outside or inside of the cupboard as your child is learning new dietary choices.
Label the refrigerator. Dedicate a bin or shelf in the refrigerator which remains exclusively accessible for your child. Clearly and colorfully label the shelf or bin.
Look for labels in the grocery store. Go shopping together and read the gluten-free labels on food products. When your child takes an item from the shelf ask, “Is this food gluten-free?” Use your finger to point out the words “gluten-free”. Then celebrate, “Yea! This looks yummy! These crackers are good for you. Let’s put it in the cart”. The repetition of reading labels together will help your child get in the habit of looking for the familiar “gluten-free” words until one day he or she will be able to do it on their own.