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Gluten-Free Diet Compliance

As children grow, they become more independent.  This is our goal as parents, to teach our children the things they need to know about life to live independently,  happily & successfully.  If it was only that easy, right?

Every parent has their challenges with their child(ren).  Some of those challenges are more stressful than others.  Having a child that requires a special diet requires a lot of planning & control on the part of the parent(s).  As the child grows older & matures, some of this planning & control begins to transfer over to the child/teen.  Every family is different and may begin this phase at a different stage.  Some kids aren’t ready to take on the added responsibilities, while others run with it.

Then comes compliance.  Following said diet.  It is one thing to accidentally ingest gluten, it is another to purposefully ingest it.  Kids are not the only ones who may not comply with the gluten-free diet; I have read of many adults not complying as well.  I don’t understand, but then again, gluten makes me really sick.  However, knowing what I do know about Celiac Disease and the effects of gluten on my body, I don’t ever see myself eating gluten intentionally.

While the reaction may not be immediate, there are long-term effects that must be considered.  For those with Celiac Disease that either hasn’t been diagnosed or choose to ignore the diagnosis, they continue to damage their body. The villi (finger-like projections in the small intestine that absorb nutrients) are damaged when the body mounts a defense against the gluten (which it can’t digest in people with Celiac Disease). If those villi are damaged or non-existent, they can’t properly absorb nutrients. The person can become malnourished, vitamin deficient, etc. Additionally, untreated, this can lead to a host of complications down the road, which can include cancer.

Teens often only see today, what is right in front of them.  They don’t see down the road.  I know that is how I was as a teenager/young adult.  I try to remember that as I parent my kids, while helping to guide them try to understand that the choices they make today can and will impact their future.

Sometimes, despite all the guidance, they make bad choices.  Jon made one of those the other day by eating a Pop Tart.  When he first told me about it, he prefaced it by telling me that I was going to be mad.  I told him that while I might be mad, I still wanted to hear what he had to say.  It took a while to register what he said.  At first I was mad, but that quickly changed to disappointment & concern.  I asked him why he ate it and he said that a friend had dared him to eat it.  I know that they are just teen boys and this is what they do, but that doesn’t change the fact that if this were to become a habit – eating gluten regularly – it could have some serious repercussions down the road.  Interestingly enough, he did not seem to have any ill effects, which didn’t help my case about why he had made a bad choice.  I guess I should be thankful that they weren’t experimenting with drugs or alcohol, that it was just a Pop Tart.

After I was able to collect my thoughts about all of this, I chatted a bit with Jon.  He has told me that he doesn’t believe he has Celiac and wants to be retested.  He went on to say that once he turns 18 he is not going to follow the diet and he will eat whatever he wants.  He is due for a GI follow-up, so maybe she can help him understand the importance of adhering to the diet.

While his compliance concerns me, I can only do so much.  I can educate him the best that I can and continue to support him until he turns 18.  I have to come to accept that there is a point where I will have to let go of the reins.

22 comments to Gluten-Free Diet Compliance

  • Wendy Norlin

    My 10 yo son accidentally ate 1/2 a slice of regular pizza. It broke my heart to hear him say "Maybe I won't have a reaction and will be able to eat gluten again". Unfortunately, like your son, he did not get sick. I wanted him so he would see the effects. I feel like since he didn't get sick he may be tempted, like your son. My husband and I are voluntarily GF, we feel better off it. I try to show my son that even though I CAN eat gluten, I chose not too, and he should make the same choice. Trying to teach there is internal reactions even though we don't see them.

  • I see this in my teen diabetic patients as well…a sort of "invincibility". It's very hard to get them to take the diabetic diet seriously.

  • maloneokie

    The bright side I see to this is he did feel close enough to you (and you have open lines of communication) the he did tell you. How much worse had it been if he did it and never told you.
    You handled this so well!

  • I wonder if his distance from the pain he had before being diagnosed — and the fact that he was so young it probably feels like a lifetime ago — is adding to his doubts. In other words, maybe it's not just teenage defiance. Maybe it's lack of evidence.

    So you should let him visit Dunkin Donuts and then ask him how he feels ;)

    • Esther – I think that 'lack of evidence' has a lot to do with it. I can't say that I wouldn't feel the same if I were him. You know, as well as I, that I was not the most compliant teen, though it didn't have anything to do with gluten.

      Love the DD idea! HA! With my luck he would 'feel' just fine.

      Hope you are well! Loved your "Swimming Out to the Bouys" post. :)

      Love you!


  • pdw

    It's hard. It took 2 years for my DS to voluntarily comply with avoiding dairy (which he has a serious reaction to) which was harder for him than gluten. I really worry about what is going to happen as he gets older (now 13) and decides he can eat whatever the heck he likes. Hubby still has a hard time, falling back on gluten when he is really stressed. I can't see why anyone would eat anything that makes them sick (and yes, I have celiac and multiple allergies and intolerances.)

    • Wow……I always said that dairy would be much harder for me than gluten. I would give up meat before dairy, even though I am lactose intolerant. LOL!

      Does your hubby have celiac, too?

  • Jordan's Mom

    Thankfully, my just-turned-18-year-old son was diagnosed when he was 13 1/2 and he still remembers how awful he felt when he ate gluten. (He had been sick for two years prior. We figure it was brought on by a surgery he had around that time and/or the death of his grandmother.) He had always taken his lunch to school, so that was not a huge change. He has had a few accidental gluten episodes and he (and I) always know. He gets the bad stomachache and serious brain fog. He is a musician who performs at quite a high level and has won a couple of national competitions so is quite concerned to always be at his best. I was concerned about girlfriend issues (so in addition to the teenage sex-thing, I'm also worried about gluten.) He's had a steady girlfriend now for about 7 months and she chews a lot of gum. (I read that trick somewhere, maybe a GF blogger and suggested it to him long before he ever had a girlfriend.) He's going to college this fall, so that is my new concern. But he is a fine young man and I am going to trust that he continues his pattern of making good gluten decisions (along with all his other good decisions!)

    • Sounds like you raised a wonderful young man! That is awesome! It is so hard to know what is the right thing to do. I would have thought that Jon would get it since he used to get really sick when he was accidentally 'glutened', but clearly that is not the case.

  • rumfunandsun

    Oh this is tough! Did he react? I have a teenage nephew who is diabetic and he decided to experiment with alcohol!!! That is really scary stuff! His parents talked to him but his doctor did too, explaining that it isn't just about him being underage and the normal issues but he could go into a diabetic coma from it! I just pray these kids realize what the costs could be! But I also remember how stupid I was when I was that age!

    • No, unfortunately, he didn't. He used to get severe diarrhea when eating any gluten.

      Yikes about your nephew! OMG! I know how I was a teen, so I try to remember that I was difficult. I would like to think that a health condition would have changed some of that, but then again, I suffered from anorexia and ended up at a dangerously low weight, so I can't say that it would have. If only they knew now what they will in 20 years, right?


  • Lindsey J

    This situation is one of my biggest fears.

    My son is only 3 but was diagnosed with celiac

    at 15 months. He does get sick when he gets

    gluten so he knows how bad he feels. I worry

    so much about how he will handle it as he gets

    older. You seem to have handled it way better

    than I imagine I will. I am a huge control freak

    though! :)

  • themadbohemian

    This is a really good post. I don't have children, but I do have a niece on a pretty restrictive diet that struggles to understand why she can't eat the same way other kids do. She feels out of place and like a "freak" from time to time, but is really trying to be compliant.


  • Heidi

    Please remind him and ask him to research on his own…that because he has not been consuming gluten his body has healed and thus would not initially be AS reactive, but that over time it likely would become so. Create an empowered zone so he can make informed decisions. If he feels compelled to dabble in the G world, ask that he always take something like Gluten Ease and ensure he is taking all his vitamins, etc. AS that HE monitor how he feels over time AND that he understand the physical process and why he may not be initially reactive after going so long without consuming gluten.

  • Gene Simmons

    In my early investigation on the internet concerning Celiac I read that the antigens created by reaction of the body to glutet in celiacs damage the heart, the brain, and the thyroid. Early I thought I was eating GF until I found out about all the subtle gluten is foods like mayonaise, mustard, fillers in pills, etc, etc. Well, my thyroid stopped workng. I have to admit to hot taking any cholesgtrol meds, but I am now satisfied and convinced that the heart stint I had recentlky for a 98% clogged artery on my heart partially came from inflamation caused by antigens created by the reaction to the subtle additives (like "natural flavors" added in chicken, etc) I had gotten. How do you explain this to children who like me do not get "sick" after an accidental dose of gluten…It is difficult. Take them to the Dr. and show them a clogged artery and a heart and explain what it does and we only have one. and pray. Gene Simmons

  • Rebekah Hodge

    I found out last year that I have celiac disease I was only 17. it has been a hard adjustment and everyday I get people who ask questions and sometimes its very hard to explain. it was a long process to find out what I had it took from February till June to find out I had celiac disease. but since I have started my diet I feel so much better but I’ve lost a lot of weight but on top of it I also have ibs so it makes it a lot harder.

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