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Simple Steps Can Help Teens Manage Celiac Disease Treatment


Teenagers can follow simple steps to manage their celiac disease. Image: CC--d3inotes

Celiac.com 06/21/2016 - Transitioning from childhood to adulthood is hard, but doing it with celiac disease can be harder. Beginning in adolescence, people with celiac disease should assume full responsibility for their care. So how can a parent best help teens transition to full control over their celiac disease and gluten-free diet?

According to the Prague Consensus Report, a few simple measures can help children to successfully manage caring for their conditions as they transition into teenagers and young adults. One of the study's authors is Dr. Steffen Husby of Hans Christian Andersen Children's Hospital, Odense University Hospital in Denmark.

  1. Get a Formal Diagnosis
    "We think it most important to stress that celiac disease is a definite disorder," Husby told Reuters Health. "We should make a regular diagnosis of celiac disease before putting kids on a gluten free diet."
  2. Consult a Doctor About Transition
    "We recommend close communication with the doctor when transitioning to adult care," said Dr. Husby. Ideally, teens with celiac disease should visit a clinic with pediatric and adult services that handles such transitions, the study authors write.
  3. Talk About the Transition
    Talk with a doctor about dietary adherence and consequences of non-adherence during transition. Consider asking your child's pediatrician to include a "transition document," which includes written information on the patient's diagnosis, follow-up, body composition data, other health conditions and dietary compliance.
  4. Know the Importance of Biopsy
    The authors also conclude that most teens and young adults do not need routine small intestine biopsies to reconfirm a childhood diagnosis of celiac disease, unless pediatric diagnostic criteria, like a blood test for gluten antibodies, were never fulfilled, according to the recommendations published online April 18 in the journal Gut.

In most adolescents and young adults, routine small intestinal biopsy is not needed to reconfirm a childhood diagnosis of celiac disease, based on criteria set by the European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) or North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN).

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However, biopsy may be advisable in patients who did not have biopsy at diagnosis, or when other pediatric diagnostic criteria are incomplete, if additional endomysium antibody test have not been performed to confirm 10-fold positivity of tissue transglutaminase antibodies, or in cases of asymptomatic children who may have been followed a no biopsy strategy to that point.

Young people tend not to register risk for future health consequences, whether the risk is lung cancer as a result of smoking or osteoporosis as a result of eating gluten, says Dr. Patience White, co-director of Got Transition, the Center for Health Care Transition Improvement at the National Alliance to Advance Adolescent Health in Washington, D.C. "All youth…need a better transition," she added.

These simple steps can help teens to manage their own celiac disease as they progress into adulthood.

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1 Response:

 
Mary
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said this on
22 Jun 2016 10:00:04 AM PDT
It is great to see articles like this to help teenagers cope.




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@cyclinglady thanks for checking in Restricted diet didn't do much. Still had some VA last time they checked. Heath still otherwise fine, so RCD remains unlikely. My sxs kick in lockstep with life stress, so that kind of points to some general IBS stuff on top of celiac disease. Very doubtful I'm getting any gluten in, but fingers crossed my system is just a little hyper-vigilant, as I ponder on this thread.

I have always noticed that the table wine in Europe is pretty damn good! I am a wine lover and so is my husband but he does like his Green's beer.

The reason they set the limit at 20ppms is that through scientific study, they have proven that the vast majority of people with Celiac Disease do not have an autoimmune reaction to amounts below that......it is a safe limit for most. Also, just because that limit is set at 20ppms, does not mean that gluten-free products contain that amount of gluten. Testing for lower levels becomes more expensive with each increment down closer to 0-5ppms, which translates into higher priced products. Unless you eat a lot of processed gluten-free food, which can have a cumulative affect for some, most people do well with the 20ppm limit.

I'm in the Houston area so I'm assuming there are plenty of specialists around, though finding one that accepts my insurance might be hard. This might sound dumb, but do I search for a celiac specialist?? I'm so new to this and want to feel confident in what is/isn't wrong with my daughter. I'm with you on trusting the specialist to know the current research.

Hi VB Thats sounds like a good plan. Would it help to know that a frustrating experience in seeking diagnosis isn't unusual With your IGG result I'm sure a part of you is still wondering if they are right to exclude celiac. I know just how you feel as I too had a negative biopsy, but by then a gluten challenge had already established how severely it affected me. So I was convinced I would be found to be celiac and in a funny way disappointed not to get the 'official' stamp of approval. Testing isnt perfect, you've already learned of the incomplete celiac tests offered by some organisations and the biopsy itself can only see so much. If you react positively to the gluten free diet it may mean you're celiac but not yet showing damage in a place they've checked, or it may be that you're non celiac gluten sensitive, which is a label that for a different but perhaps related condition which has only recently been recognised and for which research is still very much underway. We may not be able to say which but the good news is all of your symptoms: were also mine and they all resolved with the gluten free diet. So don't despair, you may still have found your answer, it just may be a bit wordier than celiac! Keep a journal when you're on the diet, it may help you track down your own answers. Best of luck!