Gluten Free Mom

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!!!!