Celiac Disease in Adolescence

There was such a great response to the last article that Lori prepared for my website, that we decided to do a follow up on Dealing with Celiac Disease during Adolescence.

This article strikes very close at home for me as I am trying to juggle the hormones of a pre-teen and the requirements and, sometimes disappointments, of the GF diet. 

Lori list some tips below for helping your tween or teen successfully navigate the Gluten Free Diet.  While I am not a nutritionist nor a psychologist, I'd like to add one:

Never Let them See You Complain:  You can and should have all of the empathy in the world for what your child is going through, but do not complain to your kid about all the extra work that the diet requires for you.  Complain to your friends, husband, to me about the extra work required for birthday parties, travel or summer camp, but never your kid.  The last thing that we want is for a Gluten Free kid to feel guilty for the work that is caused by a GF diet.  This may seem obvious, and I hope it is, but important enough to be reminded about. 

Sorry, I have no advise on surviving the tween and teen years with girls.  I am currently reading

Queen Bees and Wannabes: Helping Your Daughter Survive Cliques, Gossip, Boyfriends, and Other Realities of Adolescence

But this is an entirely different mine field. 

Celiac Disease in Adolescence

By Lori S. Brizee MS, RD, LD, CSP

Central Oregon Nutrition Consultants

Home office: 541.388.0694 Cell Phone: 541.788.2625

Adolescence is a trying time at best! Our kids are pulling away from us as they transition from childhood to adulthood, but they still need guidance,support and boundaries. Add any chronic medical condition to the mix, including Celiac Disease, and getting through adolescence can be like walking through a minefield.  In my last article, I talked about meeting nutritional needs on a gluten free diet—all the concerns in that article apply to our adolescent kids.

This article is aimed at how we keep kids with CD healthy through their adolescent years. A person with CD who follows the GF diet will be as well nourished as anyone without CD. Non-adherence to the diet may lead to obvious symptoms such as diarrhea, abdominal pain and malabsorption of nutrients. Additional complications are less acute, but very serious— increased risk for anemia, osteoporosis, cancer, other auto-immune diseases, and infertility; these occur whether or not a person has gastrointestinal symptoms with untreated CD. (1,2).

Several studies have shown that diagnosis of CD early in childhood and the presence of gastro-intestinal symptoms with untreated CD result in better adherence to the GF diet in adolescence. (3,4,5). Those who are diagnosed by blood tests alone are far less apt to stay on the diet than those diagnosed with small bowel biopsy.  Not following the GF diet results in nutritional abnormalities, whether or not a person with CD has gastro-intestinal symptoms. A study comparing adolescents and young adults with untreated CD to normal, age matched controls, showed that even those with silent CD (no reported GI symptoms), had much higher risk for nutrient deficiencies in folic acid, iron and protein than did the controls. Once on the GFdiet, even those who had reported no GI symptoms at diagnosis, reported that improved bowel function and several reported being less tired and that ‘dizziness’ had gone away. The authors concluded that early diagnosis and treatment of CD and treatment with GF diet is important to improve quality of life and avoid nutritional abnormalities; regardless of gastro-intestinal symptoms. (2)

Adolescents have many pressures that make following a gluten free diet, or any other medical regimen, especially difficult: (6,7,8)

Social:  adolescents want to be free to socialize and be like their peers. A chronic disease can be like a ball and chain that makes socializing difficult (e.g. when friends go out for pizza the teen with CD would really like to join in!)

Psychologic: Having any chronic illness increases risk of depression. If your teenager is depressed, it is difficult for her to see the value of staying on a diet that is so restrictive, and makes life seem so difficult.

Physical: Immediate physical effects of CD that can have effects on self image include: embarrassing GI symptoms whenever the GF diet is not followed; anemia resulting in low energy and in turn poor school and athletic performance,  and poor growth resulting short stature, if CD was not diagnosed early enough; I know of one young adult who was not diagnosed until 6 years of age; this resulted in long term growth stunting; her adult height is well below 5 feet, which is a hindrance to many adult activities (driving a car, working at many physical jobs, as well as being mistaken for a child in many social situations). Her younger sister was diagnosed with CD during infancy, so never had the malnutrition associated with untreated CD; her height is well within normal limits for a teen age girl. (9)

What things contribute to a teenager with celiac disease being motivated and willing to take care of him or herself? (The items below apply to all types of chronic conditions): (8,10)

Knowledge of condition and treatment: It is essential that an adolescent has a good understanding of celiac disease, why it is important to follow the GF diet and how to follow the diet.  However, knowledge alone is not enough to promote adherence.

Belief that the treatment will be effective: If the adolescent does not believe that following the diet will make a difference in his health, he is not going to follow it!

Belief that effective treatment will enable personal goals: The adolescent has to believe that adhering to her GF diet will make a difference in her life (e.g., enable her to be successful and achieve her goals, what ever they are!).

Hope in the future:  If an adolescent can see himself in the place he wants to be as an adult, he is more likely to do everything he can to get to that place.  That includes taking care of his health and following his GF diet.

Self Esteem: An adolescent who thinks highly of himself and respects himself is more likely to take care of himself.

Acceptance of condition: If an adolescent can find ‘meaning and reason’ in his condition, he is more likely to follow his care recommendations (e.g., the adolescent with celiac disease who is involved in a CD peer support group, or who is involved in educating others about CD and the GF diet).

Family support:  Any teen, especially one with a chronic medical condition needs a positive family climate where communication is open and honest, and parents are supportive and encouraging but also set limits. (This does not mean that will not be conflict and arguments!) Spending time with our kids can be great fun at times, and very stressful at other times. Finding ways to regularly communicate with our adolescents is key—I found that doing some type of work or play with my kids resulted in some great conversations. Grocery shopping, cooking, cleaning the kitchen, walking the dog, cleaning the basement, building something, painting a room, going out for a meal, skiing, shooting baskets, walking or running or watching a controversial movie together can all be great conversation starters.

Peer support: Having good friends who accept your teen as she is and who are understanding about her diet is very important. The adolescent who feels like she ‘fits in’ in spite of the limitations of her disease is more apt to have positive self esteem and to take care of herself.

Positive interaction with medical providers:  Your adolescent needs to have a trusting relationship with her physician/medical practitioners. She needs to be listened to and respected if she is to respect any medical advice and recommendations given to her.

None of us are super parents! Our kids are not always going to be the model individuals we envision. During adolescence, all kids take risks and some of those risks are not very healthy, including denial of a chronic illness like CD. If your adolescent is having a difficult time, socially or medically, doing poorly in school, or is engaging in high risk behaviors (e.g., smoking, drugs, alcohol) seek counseling for your child and your self earlier rather than later. Get recommendations for a counselor who works with adolescents from your physician or school. This will not solve all your issues, but it can open lines of communication within your family and help your whole family to better cope with life and CD in the long run.

References:

1)      Hopman, et al; Nutritional management of the gluten-free diet in young people with celiac disease in the Netherlands. J Ped Gastroenerology and Nutrition; vol 43(1):102-108, July 2006

2)      ) Haapalahti et al Nutritional status in young adults with screen-detected celiac disease. J Ped Gastroenterology and Nutrition; vol 40(5):566-570; May 2005

3)      Pietzak et al; Follow-up of patients with celiac disease: achieving compliance with treatment. Gastroenterology; vol 128(4 suppl 1):S135-41, April 2005

4)      ) Fabiani et al; Compliance with gluten free diet in adolescents with screening-detected celiac disease: a 5 year follow-up study. J Pediatrics; vol 136(6):841-843, June 2000

5)      Barera et al; Body composition in children with celiac disease and effects of gluten-free diet: a prospective case-control study.  American J of Clinical Nutrition; vol 72(1):71-75, July 2000

6)      Kyngas Helvia A. et al Compliance in adolescents with chronic diseases: a review. J Adol Health; vol 26:379-388, 2000

7)      Staples and Bravender; Drug compliance in adolescents:  assessing and managing modifiable risk factors. Pediatrics Drugs Vol 4 (8):503-513; 2002

8)      Olsson et al; Adolescent chronic illness: a qualitative study of psychosocial adjustment; Ann Acad Med Singapore; vol 32:43-50, 2003

9)      Hopman, EGC, et al Nutritional management of the Gluten-free diet in young people with celiac disease in the Netherlands. J Ped Gastroenerology and Nutrition; vol 43(1):102-108

10)  Rosina, et al; Treatment adherence of youth and young adults with and without a chronic illness. Nursing and Health Sciences; vol 5:139-147, 2003

Lori Brizee of Central Oregon Nutrition Consultants is a registered/licensed dietitian and a certified specialist in pediatric nutrition. She has many years of experience working with teenagers who have chronic diseases, which require special diets. If you or your child/adolescent has a chronic condition, and you would like nutrition consultation in person or by phone or e-mail, call or e-mail Lori (home office 541.388.0694; cell 541.788.2625 e-mail lbrizee@bendbroadband.com)