Gluten Free Mom

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)

Getting Over It and Moving On

We made it through!  My beautiful gluten free twelve year old has regained her smile and the bounce is back in her step.

After sleeping for twelve hours one night and forcing myself to go to the gym yesterday, I am also starting to feel human again.

As I mentioned in my last post, this recent illness was pretty hard for the Gluten Free Kid. 

It was pretty hard for Mom too~

I can't tell you how many times I have held back that poor child's hair while she vomited out all of her insides and then some.  Even though this illness was not gluten-related, being back in that situation again was like some bad deja vu.

But we got over it and we are moving on. 

We try to be as positive as possible about living gluten free and I still see many "silver linings" in our new lifestyle . . .

But there are bumps in the road and sometimes it is just hard. 

Everyone has "why me" moments when you just want to find something quick and easy to eat,

and that is okay.

It is okay to get fed up every once in a while and to acknowledge the hardship of living gluten free,

but then you have to get up,

get over it, and

get your bounce back in your step.

You have to find your own "silver linings" of the gluten free life.

Be thankful for the good health you now enjoy.

Be thankful for your new gluten free friends.

Find the opportunities the diet offers you and dwell on those~

Because living gluten free does not mean you cannot live the life you choose!

Be very careful, then, how you live—not as unwise but as wise, making the most of every opportunity,Ephesians 5:15 - 16

Is Amoxicillin Gluten Free?

That is the question of the week.

According to the Gluten Free Drug List, amoxicillin is gluten free as are Tylenol extra strength caplets. 

It has been a hard week here as the Gluten Free Kid has come down with a really, really nasty illness.

Two nights of a fever around 103 degrees, sore throat, vomiting.

I took her to the doctor who after several tests, diagnosed her with a kidney infection and some unknown bacterial infection.  Which lead to the Amoxicillin and an anti-biotic shot.

Of course, neither the doctor or the pharmacists knew if the amoxicillin contained gluten.  Thank you to the gluten free drug list for making that part of our lives easier!!

The hardest part for the GFK, the blood draw.  My Gluten Free Kid has a real issue with blood draws.  She had too many one year P.D. (pre-diagnosis), and some really terrible ones during the diagnosis process.  At one point a nurse was digging around in her arm so much that I had to step in and tell her to just STOP.  So blood draws are her worst enemy.  (And she goes in next week for a check up with her celiac doctor.  They did not do a blood draw last year so I hope they skip it this time as well).

The hardest party for me~the "why me" questions??  This is the sickest she has been post-diagnosis and it has brought back too many memories of how things used to be: the vomiting, the no energy, the being stuck inside when everyone else is out having fun.

And this has brought up the why do I have to have celiac question? 

Why is my life harder? 

"It is just not fair"!

Yes, we are happy for a diagnosis, but yes, sometimes it does seem like it is just not fair.

Even though she does have celiac, I tell her how thankful we are that it can be treated with a diet (oh-what a diet but just with a diet).

She likes to write song lyrics for the guitar, so I told her you have to have an interesting life to have something to write about.  She would rather it not be so interesting. 

Even though I can see God working in her through this, that is a concept that is sometimes hard for a 12 year old to get.

But it still is just hard sometimes -

The Invisible Mom

I have no idea who wrote this or if it is true or not.  I received it from Dee - my gluten free friend in Oklahoma.

Regardless of the source I found it very inspirational.

It applies to all Moms, but especially for us gluten free Mom's who spend hours behind the scenes making sure our gluten free kids have happy healthy lives. 

It is long - but take the time to read it.  It will be good for your soul.

It all began to make sense, the blank stares, the lack of  response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?'

Obviously not. No one can see if I'm on the phone, or  cooking, or  sweeping the floor, or even standing on my head in the  corner,  because no one can see me at all. I'm invisible. The invisible Mom.

Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? Can you open this?

Some days I'm not a pair of hands; I'm not even a human  being. I'm a clock to ask, what time is it?' I'm a satellite guide to answer, what number is the Disney Channel?' I'm a car to order, Right
around 5:30, please.'

I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated sum a cum laude - but now they had disappeared into the peanut butter, never to
be seen again. She's going, she's going, she's gone!

One night, a group of us were having dinner, celebrating the return of a friend from England . Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when Janice turned to me with a beautifully
wrapped package, and said, 'I brought you this.' It was a book on the great cathedrals of Europe . I wasn't exactly sure why she'd given it to me until I read her inscription:
'To Charlotte , with admiration for the greatness of what you are building when no one sees'
In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: No one can say who built the great cathedrals - we have no record of their names. These builders gave their whole lives for a work they would never see finished. They made great sacrifices and expected no credit. The passion of their
building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man,
'Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.' And the workman replied, because God sees.'
I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, Charlotte . I  see the sacrifices you make every day, even when no one around you
does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over.  You are building a great cathedral, but you can't see right now  what it will become.'

At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.
I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on.
The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything
more to say to his friend, to add, 'You're gonna love it there.'

As mothers, we are building great cathedrals. We cannot be seen if  we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.
Great Job, MOM!

Cooking Class with the Gluten Free Girl

The Gluten Free Kid and I spent a funtastic night with the Gluten Free Girl at a baking class at our favorite local market. 

Everything about the Gluten Free Girl, from her approach to living gluten free, to her style of cooking, to the tattooed "yes" on her hand, was inspiring and encouraging. 

We both left feeling that it is better than just okay to be gluten free.

We were inspired to take our cooking to a new level.

The Gluten Free Girl made us feel good about living, good about eating.  She made us want to eat more and better food.  As she said "food (that we eat) is stories, food is connected to our lives." 

She is, after all, the happily ever after in the gluten free fairy tale. 

So what did we bake?

Gluten Free Bread Baking

I have to admit that I have been a wimp about making gluten free bread.  I never baked bread before going GF and the few loaves we made from scratch post-GF were something less than successful.

So I had basically given up bread.  I have probably eaten no more than a loaf of bread in the last year.

The Gluten Free Kid still eats a sandwich in her school lunch but she had been content with Kinnikinnick White Sandwich Bread and the Gluten Free Pantry Favorite Sandwich Bread Mix that we whip up in our Bread maker.

Well my bread fast is now over!! 

What has changed ~ first the Gluten Free Girl gave us a great overview of the qualities of all of the different flours, second seeing how incredibly easy it is to make a GF bread that had texture and interesting flavor to it, and lastly, having a bite of that hot out of the oven bread . . .

We made Gluten-Free Multi-grain Bread that was originally posted by Gluten Free by the Bay.

Of course, we only got a sample during class. 

But the Gluten Free Girl was so inspiring that as soon as the Gluten Free Kid arrived home from school yesterday, she threw on her apron, pulled out all of the flours and made a loaf (already making some of her own adjustments).

So here is the Gluten Free Kid's (adapted) Multi-grain Bread recipe:

• ½ cup brown rice flour
• ½ cup sorghum flour
• ¼ cup amaranth flour
• ¼ cup millet flour
• 2 t active dry yeast
• ¼ cup tapioca starch
• ¼ cup cornstarch
• 3 t xanthan gum
• 2 t sea salt
• 3 t ground flax seed
• 2 eggs
• 2 egg whites
• 1 cup water at room temperature
• 2 T canola oil (or any kind of vegetable oil)
• 2 T honey
• 2 t apple cider vinegar

Preheat oven to 200 degrees

Sift the dry ingredients together in a medium bowl and stir to combine.

Combine the wet ingredients in a large separate bowl by hand or using a hand–mixer on low, just until combined. 

Slowly add the dry ingredient mixture until fully combined.

Pour into a 9 x 5 inch bread pan that has been greased.

Turn the oven off, place the bread dough inside and let rise for 90 minutes.  Do not open the oven door during this time.

Increase heat to 350 degrees and bake until the crust is golden brown and a knife inserted in the center comes out clean, 30 – 40 minutes. 

I could not believe how good it was - add a little Earth Balance and, like I said, my bread fast is over.  As a matter of fact, the entire loaf is gone.

But this is just the beginning.  We spent last night surveying the wonderful world of GF blogs and we are going to try Gluten Free Mommy's Almond Honey Yeast Bread next.

As a side note, I find it ironic that  I am going on this carb feast two weeks before the Weekend Chef and I are leaving for a few kid free sunny days in Cabo.

Some Other Tips on Baking Gluten Free

We learned so much during the class, I could probably write a book on it, but she has already done that.  So buy the book and see for yourself.

But a few more free tips:

Don't over mix your gluten free baking ingredients.  Just a simple stir until everything is just mixed works best.

Once everything is mixed together, let it hang out for a while before you bake it.  If you are making cookies, refrigerate the dough for 60 minutes before you pop the cookies in the oven.  Same thing goes for pie crust.

To make your bread rise, preheat the oven to 200 degrees while you are mixing everything together.  Turn off the oven and put the bread in to let it rise.  Do not open the oven door for 90 minutes, then bake it. 

Finlay, I get a lot of emails asking for my favorite recipe books.  I have a lot of none-GF cooking books that I love, but not that many that are specifically for gluten free baking.  So here are some that the Gluten Free Girl recommended.   I just ordered some myself.