Gluten Free Mom

A Few Words from a Gluten Free Teen

I have a guest writer this week - the Gluten Free Teen.  Even though I try to make life as"normal" and as happy for her as I can, I know that her diet still bothers her at times.  Like most normal teens she just wants to be like everyone else, so having a special diet is something she'd rather forget about. 

No matter how hard I try to provide her with gluten free options, as she gets older and more independent, there are more and more instances that I just don't know about.  Mom bringing special brownies into class just doesn't work in middle school.   

At the same time, she really does not like to talk about her diet.  So when she offered to write my blog post for this week, I was more than excited to accept her offer.  It gave me a chance to see that things are still tough at times.  It gave me a look into her life.  Maybe one of our kids will read it and find some solace in the connection as well.

Hi this is the gluten free teen or Alex. There are a few things I wanted to tell you about being a gluten free teen.

Sometimes, well actually most of the time, things can be pretty tough food wise. I have encountered many incidents outside of our home, where I was left with no food and feeling left out. But I have also experienced people who have taken the time to make sure that I can participate and have something to eat. I have had heartbreaking experiences, and touching experiences.

One of the many tough times that I have experienced was in math. I know this sounds weird and might not sound like a big deal but it really does hurt. My math teacher’s wife loves trying out new recipes and then giving them to her husband’s students to test. I was taking a math test and he asked the class if anyone was allergic to nuts or chocolate. We all said no. The next thing I saw was a bag of delicious looking cookies being passed out to the whole class. Of course I didn’t eat them. I’m a good girl and don’t want to get sick. So I told him I couldn’t eat them and he didn’t even care. I was fighting back tears and it was really hard but I survived and ate some yummy ice cream when I got home. But still, it hurts.

Another experience that pierced my heart was in sixth grade when everyone had coffee cake. I love cake, and I love coffee, so you can imagine hard it would be to not be able to eat coffee cake. Well it looked delicious and I was incredibly sad because all I had to eat was 2 teeny tiny stale and disgusting, gluten free cookies. While my whole class was pigging out on coffee cake I was eating gross food. It was a small incident but still incredibly painful.

Now that I’ve managed to depress you thoroughly I will talk about some of the touching experiences. At school we read the book Alice in Wonderland. Of course, after reading this we just had to have a Mad Hatter Tea Party. I was deeply bummed because I figured that once again, I would be left out. But surprisingly enough my English Teacher bought me a gluten free chocolate dome and some delicious gluten free cookies. They were amazing and she even had the correct kind of drink for me! I was so touched and greatly thanked her.

My Journalism class had a party once the yearbook was finished. I was going to bring in some popcorn for me to eat, but of course I forgot. I figured that I would have to put on my happy face and act happy while everyone was eating yummy brownies and cookies, but that is the opposite of what happened. Two of my friends brought in chips that they made sure were gluten free for me. I was so grateful and ended up having a genuine smile on my face! It was truly great.

As you can see, being a gluten free teen has some major rough spots. But it can also make you feel incredibly loved and thankful for the people that truly care about you. Even though you might feel very alone and sad about being gluten free, there are good things that come out of it. It might be amazingly hard to think of them (it was for me) but there is a reason for it. People love you and those who truly care about you will show it.

Raising A Gluten Free Teen

I do not have a recipe, product review or new research to share today. Instead today I have only a life event and a story to share.

The Gluten Free Kid is officially a Gluten Free Teen –yes, this weekend she crossed that inevitable line from being a kid to being a teen.

A beautiful, oh so healthy, sometimes snippy, but amazingly happy these days, teen who can almost stand toe-to-toe with me and look me in the eyes.

Who wears the same size shoe as me and is starting to borrow my clothes.

Who loves her cell phone and completely ignores me when she is around her friends.

A wonderful healthy normal teen.

Of course, it is a milestone that all kids cross, but to have a healthy normal teen is in itself a gift when you have a kid who has been so sick.

A kid who used to get so dehydrated from vomiting all of the time that she had to get IV's to rehydrate;

Who seemed so unnaturally unhappy that you were debating taking her to a psychologist,

Who was addicted to Pepto Bismal,

A kid who is lucky to be one of the few diagnosed with celiac disease. I said lucky because only 5% percent of people who have celiac disease are currently diagnosed. I can’t even imagine what the Gluten Free Teen would be like by now if she was not diagnosed.

So how is it to live with a Gluten Free Teen?

It has only been a day, so we will have to figure that one out together.

But I have noticed that, like most teens, she just wants to fit in and, to a certain extent, be like everyone else.

For her that has meant that she wants absolutely nothing to do with celiac disease. If you have checked her website lately, you will notice she has not updated it in a long time. They are starting a Celiac Teen group in our area and she absolutely does not want to have anything to do with it. She still loves to cook and eat, but prefers not to think about the fact that it is gluten free.

And that is fine – if we have reached the point in our lives where we can live gluten free without even having to think much about it, then we are pretty well off. If she can live day to day without having to constantly think about what she puts in her mouth, then that is great.

Lastly, this brings me to an email I received this week. I get a lot of emails, but this one brought me back home this week. Back to where we started:

A little over a week ago, my 5 year old daughter, was diagnosed with Celiac.  Of course, a million things ran through my head, but at first I didn’t think it was too big of a deal until I looked for something for her to eat.  I have been in panic mode since.  I feel confused, angered and just plain helpless.  I have been reading anything I can get my hands on to understand what our lives will be, how you live with Celiac, and how just to become normal again.  I have found a lot of great information online but I have to say that yours has been the most appreciated.  Being from a mother’s perspective, it has calmed me down a bit to realize things will improve.  For me, it’s like a step program for beginners to take to a life of a new normal.  So I just wanted to write to say Thank you, Thank you, Thank you!

That is it isn’t it – the point we have reached, the "life of a new normal." A new normal where we can eat and be gluten free without having to dwell on it every breathing moment.

Oh, we have been through plenty of the confused, angered and helpless days. I remember initially I thought about food constantly – every morning started with "my goodness what will eat today?" Trips to the grocery required huge manuals and lists and seemed to take an eternity.

Every school event, party or dinner invitation had a new meaning, a new level of work that was required, and a new adjustment.

Yes, it was crazy tough at times, but we made it through and we are okay with our new normal. Even better than we were before because no one is sick now.

Speaking of our "new normal", I have to share one last thing. It is the Gluten Free Teen’s birthday cake. Before going gluten free, birthdays at our house were celebrated with a cute, very sugary, decorated cake from our local grocery store. Thus, the gluten free birthday cake was another big adjustment in our new lifestyle. We all like our new tradition of making and decorating our own cakes. I would not call the cakes we create beautiful, but they were fun to make.

But this year, when I was presented with the opportunity of buying a gluten free and dairy free decorated cake, I had to take it. Here is the cake!  

It is funny how much this cake meant to my kids. They were thrilled to have a cake which was "like the cakes we had pre-gluten free." A cake that was, to their minds, just like everyone else’s. A cake that just looked "normal." Well, actually better than normal because it was gluten free!

This cake was made by Stephanie at CakeFixation.com. This was Stephanie’s first gluten free cake and she did a fantastic job. My other kids have already put in their request for their birthday cakes.

I’ve been having the most wonderful time. I feel as though I’ve emerged from a dark tunnel and found myself in the middle of a carnival. I don’t particularly care for carnivals, but after the tunnel, it’s delicious.

From The Guernsey Literary and Potato Peel Pie Society.

When company does not respect the rules of your Gluten Free Kitchen.

I am sitting here in my gluten free kitchen silently having a heart attack.  The issue is company that repeatedly ignores the rules of my gluten free kitchen.

While we are 95% gluten free, we do have some regular bagels and bread.  These are in our butler's pantry and mostly reserved for my none-gluten free kids to take to school in their lunch boxes.

Our kitchen has been gluten free for several years and our extended family has visited numerous times and been reminded of the rules repeatedly.  I offer an abundance of gluten free eating options.  In the past I have actually removed all wheat items from the kitchen, but I thought by now they surely understood the rules.   Our rules are the same as yours - separate utensils, all "contaminated" jams and cream cheeses are on the top shelf of the refrigerator and clearly labeled, wash hands after you touch the glutenous items etc.

This morning for breakfast I offered a wide assortment of gluten free items, Canadian bacon, fresh cantaloupe, chocolate chip muffins.  I am sitting here eating my buckwheat waffle as our company decides to make bagels. 

 Don't misunderstand, I am very happy that my company helps themselves to food.  I can only do so much serving and cleaning up. 

The decision to even eat the bagels was the first bump in the road - we eat this way everyday, so why can't they adjust for the few weeks each year they spend with us?

But it gets even worse.  As I am sitting here, I notice first that they grab the gluten free butter and smear it on the toast, then the gluten free jam.  I try to politely remind them of the contamination issues and re-label all the tubs they used to now say "Not gluten free."  Then my company proceeds to dip a spoon into the cantaloupe, touch it on the whole wheat bread plate and then dip it back in the cantaloupe (this happens several times).  Then before washing their hands they touch the glass cabinet, finger for some napkins while touching the salt and pepper shakers, run their hands over the handle on the refrigerator door . . ..

Maybe I am over-reacting.  Maybe it is just the stress of having extended family in the house for a little bit too long.  But come on, how hard is this to get!! 

So once again I turn to you my gluten free friends, because I know you will understand!  I honestly don't know what else to do other than hiding the glutenous items after everyone goes to bed tonight. 

How do you handle company and thank you for letting me vent in this somewhat non-conspicuous way!

Dining Out Gluten Free

Eating out or at friend’s houses is probably one of the more challenging parts of the gluten free diet.

You want to eat out – it is fun to gather with friends and family and have someone else prepare a meal that you can just enjoy.

If you are lucky, you will also have friends or parents of your child’s friends, who are going to want to cook something you can eat at their house.

But you worry about the ingredients, cross-contamination . . . is it worth the risk to eat the food that may in all honesty not be that satisfying?

Do not let the gluten free diet stop you from engaging in these activities.

But do not go into them lightly.

This is the time when you need to put on your advocacy fighting gloves and stand up for yourself and/or your kid. Easy for me to say, but I have to admit it was intimidating in the beginning.

Pre-diagnosis we loved eating out – nearly every Friday you’d find us at one of our favorite local restaurants letting someone else cook the meal and serve us.

The pleasure of eating out was something that I initially mourned over when going gluten free.

We did not eat out for the first six months on the diet – I just wasn’t prepared enough to handle that yet.

The first time we did go out, it was a disaster! We went to Red Robin during the busy lunch hour at a very busy mall. We were not sure what we were doing and our waiter was even worse. When the food finally did arrive – the burger was on a bun. We sent it back . Our daughter who was too self-conscious about the diet at that time in tears by now. Of course, while we were waiting for the new burger the other kids (who were starving by this time) gobbled all of their lunch and they were more than ready to go by the time the Gluten Free Kids burger arrived – then she did not like the burger. Just a hunk of hamburger meat was not too appealing to her. So we went home and cooked lunch.

It was months before we went out again – this time we were armed with information, called before we went to confirm they could prepare a GF meal, picked a gluten friendly restaurant and went before the dinner rush. We went to Outback Steakhouse and had a great time – they were so nice they even gave us complimentary Thunder Down Under desserts.

No – we do not eat out as much as we used to. But we have had many great gluten free dining out experiences since then and have had friends also successfully prepare us meals.

We had two great lunches at the Hard rock Café on Maui – the manager was so accommodating he even prepared some special potatoe skins for the GFK. They showered us with attention and detail. By the end of the meal, not only were we ful and happy, but they gave all of my kids special HardRock Café hats.

Remember how special it was to eat out when we were kids? Instead of an every week activity, eating out has become a special event to our family. Now we plan for it, get dressed up and make an event out of dinner out.

We have also had a few bumps along the way and learned some lessons. We were in Washington DC on vacation and had called the restaurant to see if they could accommodate our diet. The hostess assured us everything would be fine. Not exactly – when we ordered, the waiter assured us he had accommodated this diet many times before, only to come back and ask if butter had gluten in it because he could not get an answer out of the kitchen because no one spoke English.

We were also glutenized at a local restaurant that serves gluten free pasta when they cooked our pasta in the same water they cook wheat pasta in.

Where to Eat Gluten Free

When we are with the kids, we generally stick with restaurants that we know have a gluten free menu or at least gluten free options. This list is ever expanding and there are numerous Internet resources to track these types of restaurants down. Try some of the following:

Gluten Free Mom Travel/Dining Out Page Our own reviews of some of our favorite restaurants in Seattle, New York City.

Gluten-Free Restaurant Awareness Program (GFRAP) State by state listing of restaurants that welcome gluten free diners.

GlutenFreeTravelSite  State by state restaurant reviews.

The Essential Gluten-Free Restaurant Guide, 3rd Edition Including over 4,700 restaurants nation wide.

Most High-End Restaurants: Most high end restaurants are also great at accommodating the gluten free diet. Just follow the steps below and you should be able to order a safe and tasty meal.

How to Dine Out Gluten Free:

• Unless you have eaten at the restaurant before, call ahead and make sure they can accommodate your diet and find out exactly what they can make for you. Do not rely on the hostess – ask to speak directly to the Chef. If he is not available, then the kitchen manager. Insist on knowing what they can prepare safely – don’t stop at a "rest assured we can cook for you."
• · When you are seated, ask for the Chef or the kitchen manager. Don’t rely on the waiter. It is not the waiter who is making your food. It is the kitchen staff that will be preparing your food.
• · Be as polite and congenial as possible. You will be surprised how well they react to a customer who is happy and actually appreciates good service.
• · Hand them a copy of the following letter which sets forth explicit steps to be followed in preparing your food. Don’t be intimidated, this is your good health you are protecting. Most Chefs are actually very happy to help you out.
• · When in doubt, go without. If you are not getting a good feeling and are unsure about something, just leave.
• · If the Chef goes out of his way to make you a safe and good meal, send your compliments. Thank them profusely for the service and help. You will be doing the next gluten free customer a favor by leaving a good impression.

Gluten Free Dining Card

Copy the following and print it on card stock. Ours is printed on a 4 x 6 note card with the first half on the front of the card and the number directions on the back. Then laminate it, fold in half and carry it in your purse. Use this card whenever you eat out. Don’t assume that because a restaurant has gluten free food, they will necessarily follow all of the precautions listed below.

The following directions also come in handy for friends and family who want to cook for you. Send them with your gluten free kid on sleepovers, to summer camp, to other parents in the class who may be preparing snacks.

I have an illness called Celiac Disease and have to follow a strict Gluten Free Diet. I will become very ill if I eat even a crumb of gluten, so please read the following carefully.

Gluten is found in many food items, but most commonly in flours and grains of wheat (durum, semolina, kamut, spelt), rye, barley and some oats.

Foods that may contain gluten include soy sauce, blue cheese, breading, imitation bacon, marinades, processed meats, soup bases, thickeners, broth, croutons, gravies, imitation seafood, pastas, stuffings, salad preservatives etc.

Foods that are safe include unseasoned and marinated meats, fruit, veggies, eggs, cheese, milk, rice, corn, soy, potato, bean, sorghum, quinoa, millet, buckwheat, arrowroot, amaranth, teff and nut flours,

In addition to being aware of the above ingredients, please take care to make sure my food is not contaminated by other food containing gluten by doing the following:

1. Prepare my food in a clean area on a clean surface.

2. Wash your hands and wear clean gloves while preparing my food.

3. Use only clean utensils including strainers, tongs, knifes, spoons.

4. Use only clean water and oil in clean dishes when preparing my food – do not use water that has cooked wheat pasta and do not use oil that has had wheat food fried in it such as breaded chicken fingers.

5. Do not cut my food on a cutting board that has had bread on it.

6. Do not wash my fruit or drain my pasta in a strainer that has been used to drain pasta.

7. If grilling food, thoroughly clean the grill with a metal brush before placing my food on the grill. Marinades often contain gluten.

8. If you accidentally add croutons to my salad, please do not just remove them from the salad. I can still get sick from the contamination of the salad by the croutons. Please prepare me a new salad.

9. Only use new clean tubs of condiments such as butter, mayo, mustard and ice cream. Previously used tubs may have been contaminated by a utensil that had gluten on it – such as a butter knife or ice cream scooper that was used for a flavor containing a gluten ingredient.

10. Do not season my food unless we have discussed the seasonings – use only salt and pepper and no garnish on my plate unless it is fresh and has no sauce.

Most importantly, when in doubt go without!! If you are unsure about something, please do not serve it to me without asking.

Hope these suggestions will help you avoid some of the mistakes we have made. My biggest concern here is protecting the Gluten Free Kid so please send me any comments and suggestions. I am curious to know how you have handled dining out.

Celiac Disease and Depression

It may be ironic that this post is following our previous post on our first known incidence of being glutenized, but it is really, merely a coincidence.  I ran across this article and I have always wondered about this. 

One of the Gluten Free Kid's predominant celiac disease symptoms was depression.  I remember wondering how a small child could always be so unhappy.  I was actually on the verge of taking her to psychologist when all of the vomiting started (the GFK's symptom that finally lead to a diagnosis). 

The depression happily left after we started the gluten free diet.

My husband and I both remember the day the GFK actually skipped across the family room.  Now she has a wonderfully happy, funny personality!  What a joy to have a diagnosis and be healed!

The following article is from About.com; a great resource for information on celiac disease.

From Nancy Lapid

Depression (and other mood and behavioral disorders) can sometimes be related to celiac disease.. In many studies, children and adults with celiac disease had higher rates of depression than subjects without celiac disease. Sometimes these studies were done in patients with untreated celiac disease (that is, they were still eating gluten). In other cases, even when the research involved celiac patients on gluten-free diets, they still had higher rates of depression compared to non-celiacs.

Does a Gluten-Free Diet Help Relieve Depression in Celiac Patients?

If the patient's depression is related to malabsorption of nutrients, then being gluten-free can help, because the intestines heal and nutrient absorption improves.

Some researchers believe that malabsorption can interfere with the body's handling of neurotransmitters that regulate mood. In particular, malabsorption-related deficiencies of tryptophan appear to contribute to depression in celiac patients. Tryptophan is necessary for the body’s production of serotonin, which is the central neurotransmitter involved in regulation of mood and anxiety.

In untreated celiac patients - and even in some celiac patients on gluten-free diets- deficiencies of vitamin B6 can also have a role in depression. In one Scandinavian study, for example, patients with celiac disease and depression reported no improvement in their depression after a year on the gluten-free diet. After 6 months of vitamin B6 therapy, however, their depressive symptoms were dramatically improved.

Other side effects of malabsorption can cause symptoms that can be mistaken for depression. For example, a deficiency in folic acid due to malabsorption can cause fatigue, apathy and forgetfulness. Iron deficiency, with or without anemia, can produce feelings of tiredness and easy fatigue.

In one study of 12-to-16-year-olds with celiac disease in Finland, kids who were depressed before going on a gluten-free diet had certain hormonal biochemical derangements associated with depression. After 3 months on a gluten-free diet, these same adolescents had improved hormone biochemistries and a significant decrease in psychiatric symptoms.

A gluten-free diet is not always the fix for depression, however - for reasons that are sometimes understood and sometimes not. At least two Italian studies have attributed higher rates of depression in gluten-free celiac patients to difficulties in adjusting to the disease and the diet. Celiac patients in these studies were more anxious and felt their quality of life had gotten worse.

In several other large published studies, including one from Sweden involving more than 13,000 patients with celiac disease, the authors found higher rates of depression among gluten-free celiacs but were not able to identify specific reasons.

What Should You Do If You Are Depressed?

• If you have celiac disease, ask your doctor whether you need to be tested to make sure you're not accidentally ingesting gluten, which might be causing your depression. Also ask your doctor whether you should be evaluated for vitamin deficiencies.
• In the meantime, ask your doctor, or someone else you trust who has experience in mental health - for example, a nurse, social worker, or religious counselor - for advice about getting treatment. Don't try to struggle on without help.
• Visit the website of the National Institute of Mental Health for help in locating affordable mental health services in your neighborhood.
• Visit About.com's excellent website on depression.

We Have Been Glutenized

A warning about Maggiano's Little Italy Restaurant in Bellevue, WA

Yes, it is true. We were glutenized. 

During what was a celebration of our happy, healthy gluten free life, we were once again reminded that this diet can be a challenge; that we must always be vigilant; that we must be advocates for our right for healthy and safe food. 

The Gluten Free Kid had her yearly checkup with our wonderful gastrointerologist, Dr. Christie at Children's Hospital in Seattle. 

There was a lot of anxiety going into this appointment.  Doctor appointments are challenging with the Gluten Free Kid. Unfortunately, she has bad memories of some challenging blood draws, so she harbors bad feelings towards doctors and hospitals. We were also unsure if there would be a follow-up blood test.  Nerves were on edge.   

What a relief when the appointment ended up being a blessing -- she is healthy, growing.  Her bone density is great.  We were proud to report that she has not had a gluten attack in almost a year (kettle corn at the County fair was the last thing that made her sick).  No blood draws.  Dr. Christie even managed to charm the Gluten Free Kid out of some of her anxiety towards doctors.

It went so great in fact, that we decided to celebrate with a Mom and Daughter lunch at Maggiano's in Bellevue, WA.

We really don't eat out that often and I am vigilant when we do. 

I normally never rely on the waiter, but ask for the chef or the kitchen manager.  I am the one that request new condiments of mustard and mayo be opened at Outback Steakhouse, that salad's be mixed in a clean bowl and clean gloves be worn . . .

But we thought we were safe a Maggiano's.  They have gluten free pasta on the menu.  We have eaten there a few times in the past and they seemed to understand the diet.  So we ordered with confidence from our waiter.

Gluten Free pasta with alfredo sauce and a cesear salad.  No bread.

I watched as the waiter wrote it on his pad.

I reiterated that it was gluten free again to make sure he got it. 

We sent back the bread they brought out "no gluten please."

When the food arrived, my daughter dived into the steaming bowl of gluten free pasta.

"Wait what is that?"

"That noodle - that one that looks like a fettuccinni noodle (the GF past at Maggiano's is spiral)." 

"It is lighter that the GF corn pasta."

The manager comes over and offers to prepare a new bowl.

The Chef comes out and apologizes - "Yes it was wheat pasta."

"How did that happen."

The Chef  replied "In the preparation."

"The preparation?  What do you mean?"

"When we cooked it?"

"What?"

"We cooked the gluten free pasta in the water that we had previously cooked wheat pasta in."

"What."

"I didn't realize it was an allergy.  Some people just like the taste of the gluten free pasta."

Need I say more!!!!!!!

The Gluten Free Kid in tears, we promptly left the restaurant and spent the afternoon waiting to see what symptoms would strip away the glee of our "celebration."

First came the head ache, then "brain fog" and lastly the upset stomach.  We headed off the worst of the symptoms with Advil and Pepto Bismal (the wonder drug for upset stomachs).

Will we ever eat at Maggiano's again - No.  Fool me once, shame on you.  Fool me twice, shame on me.    

Will I let this drop - No.  I did not want to make a scene in front of the Gluten Free Kid (she was already upset enough).  But they will be hearing from me today.  I am very happy for the few restaurants that serve gluten free pasta, but what good is it if they cook it in contaminated water?

Will we stop eating out?  No . . . but this makes you feel uncertain about just how safe dining out is.

Does the vigilance required of this diet ever end?  Definitely not.   

But I am even more determined to be an advocate for celiac disease - I may even open my own restaurant!!!! 

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!