Gluten Free Mom

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!

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.   

Celiac Disease and Nutrition

This is a little bit different of a post than normal, but Lori wrote the following article for my website and I thought it might be helpful for some of you-all as well. 

I know that as soon as I initially figured out what to eat, the next question for me was how to have a healthy gluten free diet. 

CELIAC DISEASE AND NUTRITION

By Lori S. Brizee MS, RD, LD, CSP

Central Oregon Nutrition Consultants

This article is about eating healthfully while following the gluten free diet. Working with a registered dietitian, who has experience with CD and use of web sites such as this one can make following the diet and being well nourished much easier.

When first diagnosed with CD a person is often anemic, under weight and deficient in many vitamins and minerals due to long term malabsorption of nutrients. For a person who has had long-standing, undiagnosed CD, thinning or weak bones is a major and debilitating problem. In the worst case scenario, adults will have osteoporosis and a child will have rickets as well as poor growth in height. Problems with bones and anemia effect people with ‘silent’ CD (CD without diarrhea) as well. Following the gluten free diet while meeting nutrient needs can reverse most if not all of these problems. (1, 2, 3, 4) 

An issue for children can be the association of eating with the pain, bloating and diarrhea that they experience before starting the diet.  This can cause a dislike or fear of eating, resulting in poor or very ‘picky’ eating; it may take several months of being on the diet and feeling good before a child is willing to eat enough to meet his needs and to accept new foods.  Working with an RD and/or therapist who is skilled in ‘feeding problems’ can help parents to promote healthy eating and prevent future eating disorders.  Children required to follow special diets are at higher than normal risk for developing eating disorders (e.g. anorexia and/or bulemia) as they enter adolescence (5).

Re-nourishing After Diagnosis of CD:

• Calcium and Vitamin D:

Needs for calcium and vitamin D are high if bone problems have developed before diagnosis of CD.  It is very important that everyone with CD meet at least the Dietary Reference Intake (DRI) for Calcium, and two to three times the DRI for Vitamin D.  (See table 1 for recommended intake.)

Several, recent research studies have shown that current DRI’s for vitamin D are much too low; it is quite reasonable to increase vitamin D intake  to a higher, but safe level to ensure healthy bone development and prevention of many other chronic diseases.  However, excess vitamin D is toxic; staying within the DRI’s safe and tolerable upper limit for the vitamin is essential.

Table 1: Current United States vitamin D recommendations

(Often, Hellwig and Meyers (editors); Dietary Reference Intakes: The Essential Guide to Nutrient Requirements. National Academies Press, Washington DC, 2006 pp220-231)

Age	Adequate Intake (AI)	Reasonable intake (this author’s recommendation based on ref 7 and,8)	Tolerable upper limit
0-12 months	200 IU (breast fed infants need a supplement)	200-400 IU	1000 IU
1 year through 3 years	200 IU mcg`	400-600 IU	2000IU
4 years through 8 years	200 IU	400-800	2000 IU
9 years through 13 years	200 IU	600-1000	2000 IU
14 years through 50 years and pregnant/lactating women	200 IU	800-1000	2000 IU
51-70 years	400 IU/10mcg	800-1000	2000IU
>70 years	600 IU/15mcg	800-1000	2000IU

• Iron/Anemia:

Iron intake may need to be increased, as iron deficiency anemia is common in people with untreated CD.  Anemia is present even in people who have ‘silent CD’.  In addition to iron deficiency, the inflammation present with CD may be a cause of anemia. To eliminate this anemia, one needs to strictly follow the gluten free diet. (4)

• Other vitamins and minerals

Other vitamins and minerals are all likely to be deficient if diarrhea has persisted for a long time. It is suggested that a newly diagnosed CD patient take a gluten free multi-vitamin and mineral supplement until he has been symptom free for several months.  After that, it is quite possible to meet needs with food.

Nourishing a Person With CD Over the Long Term:

Once on the gluten free diet for several weeks, people who had diarrhea prior to diagnosis usually gain weight well, and children “catch up” in growth in both weight and height.  Some people actually become overweight—for the first time in many years they can eat without having pain, AND they are absorbing the nutrients that they eat.  Others, especially those with ‘silent’ CD (no gut symptoms or diarrhea) may have a hard time keeping there weight up, due to removing such a huge body of foods from their diets.  Just like the rest of the world, a person with CD needs to avoid over OR under-eating.  Children can do a good job of self regulating if offered foods in 5 to 6 regular meals and snacks each day. Coaxing children to eat or restricting them because we think they are over-eating can lead to many parent-child battles over food, and even eating disorders. 

The gluten free diet must be strictly followed; eating wheat (even with no symptoms) can cause lesions to begin forming in the small intestine and significantly increase the risks of osteoporosis and anemia. (6) This can be a big problem in adolescents who want to fit in with their friends—if they can eat a little wheat here and there without pain or diarrhea, it will be difficult to convince them to stop.  They have a hard time believing that problems associated with CD will truly impact them. (5)

What does a Healthy Diet Look Like?

• Fruits and Vegetables:

Including at least 5 servings of vegetables and 3 servings of fruit per day is important for everyone to meet needs for vitamins, fiber, and antioxidants. People who eat lots of fruits and vegetables have lower levels of heart disease, macular degeneration, and many cancers. Fortunately, fresh, frozen, canned and dried, plain fruits and vegetables contain NO gluten, so everyone with CD can eat loads of them. Eating additional starchy vegetables (potatoes, yams, sweet potatoes, winter squashes, parsnips, carrots, peas) helps make up for the removal of many wheat, rye or barley based foods.

• Whole Grains:

Whole corn, brown rice and quinoa are whole grains that can take the place of gluten containing grains and are a great source of vitamins, minerals and fiber.  Including these on a regular basis is a part of a healthy diet.  Using brown rice pastas is another way to add whole grains. Look for gluten free products that include at least some whole grains (e.g. brown rice).  Gluten free breads, baking mixes and cereals are great, but aim to get about half your grains from whole grains. Adding ground nuts, flax seed or sesame seed to baking mixes can increase the fiber and nutrient content if the main flour is refined.  (See table 2 for fiber recommendations)

• Dairy products: 

Milk, yogurt, and cheeses are some of the highest calcium foods around, and milk and some yogurts are fortified with vitamin D.  If a person cannot tolerate milk or dairy products, calcium and vitamin D can be obtained in fortified GF soy, rice or almond milks or fortified orange juice.  If not eating/drinking 3 to 4 servings of one or more of these every day, a calcium and vitamin D supplement will be necessary.

There are many GF calcium and vitamin D supplements found in pharmacies, talk to your pharmacist to find the best supplement for you.

Another way to obtain vitamin D is with sun exposure to your skin. You need 5 to 30 minutes of exposure to the arms and face, without sunscreen, twice a week, when the sun is high. The darker your skin is the more sunlight exposure you need.  Once you have had this amount of sun exposure, it is important to apply sunscreen to protect against skin cancer. If you live in the north (above 35 degrees latitude) the sun is too low to provide direct exposure between November and February. One can actually get vitamin D in the winter months by exposing the whole body, in a swimsuit to UVB rays via a tanning bed once per month; you need only ¾ the amount of time that it takes to actually tan. (7,8)

• Protein foods:

We get protein, many B vitamins, iron and zinc from meats, poultry, fish, and eggs. Unprocessed meats can be convenient for persons with CD, because they do not contain gluten (read the labels of any processed meat you purchase as gluten containing flours/starches may be included in fillers).  We can meet our protein needs with small amounts of meat and dairy products, or with vegetable proteins such as beans, split peas, lentils, nuts, peanuts.  Vegetable proteins are also a great source of fiber, but need to be mixed with grains to provide a “complete protein”; this can be difficult, but not impossible when on a gluten free diet. 

Conclusion:  Basically, a person with CD has the same nutrient needs as the rest of the human race, but meeting those needs while eliminating gluten can be a challenge.  This web site gives you all the information you need on following a gluten free diet; this article is a reminder that we all need to eat a variety of foods to be as healthy as possible.

References:

1) Sharrett m and Case S; Celiac Disease – More common than you were taught! Pediatric Nutrition—A Building Block for Life (a publication of the American Dietetic Association Pediatric Nutrition Practice Group) volume 27(2):1-4, 2004.

2) Usai P, et al; Effect of a gluten free diet and co-morbidity of irritable bowel type symptoms on health related quality of life in adult celiac patients. Digestive and Liver Disease. 39(9):824-828, 2007, Sept. 

3) Alaedini A, and Green PHR; Narrative Review: Celiac Disease: understanding a complex autoimmune disorder. Annals of Internal Medicine, 142:289-298, 2005

4) Harper JW et al: Anemia in celiac disease is multi factorial in etiology. American J of Hematology 82(11):996-1000, 2007, Nov

5) Kyngas HA, et al; Compliance in Adolescents with Chronic Diseases: A Review. Journal of Adolescent Health, 26:379-388, 2000

6) Matysiak-Budnik T, et al Longterm follow-up of 61 coeliac patients diagnosed in childhood: evolution toward latency is possible on a normal diet. Gut, 56(10):1379-1386, 2007, Oct

7) Holick MF; Medical progress: Vitamin D deficiency.  New England Journal of Medicine, 357(3):266-281, 2007, July 19

8) Bickle DD; What is new in vitamin DL 2006-2007. Current Opinion in Rheumatology 19(4):383-388, 2007, July

Find this article on my website at Gluten Free Mom.com.

The Silver Lining of Celiac Disease

As the new year begins and another one slips away, I do not have a recipe to share (I have been cooking my brains out for two weeks and just need a break),

I'd rather share some JOY . . ..

Looking back, every year since our initial diagnosis with celiac disease has been a better year -

adjusting more easily,

feeling better,

moving forward with life instead of battling undiagnosed symptoms.

Looking forward, knowing that there will be challenges but that every year will be better . . ..

Yes, celiac disease is and can be very hard, but today lets focus on the good of celiac disease,

on one of the

The Silver Linings … in Celiac Disease

My daughter and I share a mutual love of cooking that has been one of the greatest blessings… yes blessings… of celiac disease.  

On a quiet afternoon or evening when we have a few hours between soccer games and guitar lessons,  you can often find my daughter and me in the kitchen, the TV turned on to the Food Network,  hammering out the ingredients for our latest and greatest gluten free, casein free food concoction.  No matter what our mood when we start, at the end of it we both fall blissfully (yet somewhat exhausted from all the finger licking) onto the stools at the kitchen counter to sample our latest endeavor.   

Of course the end result is almost always a reward in and of itself.  Like the Better than the Original Gluten Free Casein Free Samoas.  But we have had a few flops as well, such as the tomato soup that tasted more like thick and hearty pasta sauce.  In fact, we ended up using it as pasta sauce.

Even more than the food, it’s the time we spend together doing something we both love that is the greatest reward.  This is when my daughter shares her feelings about her friends, her dream of visiting Venice, her struggles with how hard it is to eat gluten free when her friends are eating birthday cake, or even worse, Krispy Kreme donuts.  But this is also when she learns how long to sauté onions or whip up a gluten free treat that will please any picky eaters.  Skills that will last a lifetime.  Skills she will need for a lifetime. And this is the silver lining in celiac disease. 

We all know the common thread of the story of diagnosing celiac disease.   My oldest daughter, Alex, entered the world on Leap Day 1996, an almost ten pound thriving baby with a full head of beautiful hair.  Then the signs began to appear – the colicky baby, the projectile vomiting in the ER one Thanksgiving, the pot belly stomach.  By third grade she was addicted to Pepto Bismal and often suffered from flu-like symptoms.  The doctor’s answer each time - "it’s just the flu."  Then finally that unforgettable visit to the doctor’s office where you are determined not to leave until you have an answer. 

The answer of course was celiac disease.  The relief in knowing that it was treatable by diet, but oh what a diet!  The day we found out that Alex had celiac disease, my husband and I darted straight to Whole Foods.  We spent five hours strolling the aisles, spent hundreds of dollars and rushed home to prepare a smorgasbord of gluten free childhood delights we were sure our family would love - namely cheese pizza, macaroni and cheese, and cookies.  Sadly, the meal ended with all of us in tears.  I mean we were literally all crying – we could not imagine eating this food for the rest of our lives.

And yet, only a week after the entire family went gluten free, I began feeling better than I’d ever felt in my life!! What was going on?  Of course, I soon realized that not only did my daughter have celiac disease, but I did as well. Not to mention a dairy allergy.

Then my child changed into someone we had not known before.  One of the first changes I noticed was the color of Alex's skin.  She had always been so pale.  Yet in the middle of the rainy season in Seattle, my daughter had a tan!  Where had this come from?  Then the shock at realizing it was because she was healing.  Not long after came the spontaneous dancing, the little skip across the family room for no apparent reason.  Finally bigger changes, five inches of growth in a year! 

Two years later, the changes required to live gluten free (and I mean LIVE) have all been made.   Our life seems normal again, at least our version of normal.  While celiac disease causes a lasting life adjustment, living gluten free will not prevent you from living the life you choose, unless you let it.  My family has chosen not to live to eat, but we eat so that we can LIVE.  You can eat out, you can travel, you can visit friends and family for meals, you can do anything you want, because there’s always a way.

There have been many, many silver linings in dealing with celiac disease.  What a blessing that the running, laughing, exploring, fun-loving, beautiful soul of my child, for so long hidden beneath the illness, has emerged and thrived.  The growing closeness of our entire family as we regularly gather around the table for family meals.  What a blessing that I feel better than I have my entire life. The healthier lifestyle that we all live (we have not had fast food in almost three years).  And, one of the greatest blessings of all, the bond that my daughter and I have sealed in the kitchen. 

My daughter says she wants to grow up and study cooking in Paris and be a chef.  She is only eleven so there are many years for her life dreams to change.  But one thing is certain – I know she will never forget the hours we spend in the kitchen, flour flying, creating our latest and greatest gluten free meals.

Published in the Arico Newsletter, Winter 2008.  Arico Foods.com.  Sign up to receive this newsletter at Arico Foods Newsletter