Wednesday, July 29, 2009

Gluten Free Family Meals

So, does your husband eat gluten-free with the rest of your family?

I am asked this question so very often.  Much of what we eat as a family is naturally gluten free; salads, fruit, stir-fry, potatoes, rice & bean dishes, and soups; however, there is the pasta issue.  No matter what pasta I have cooked, it doesn't quite have the same texture as the wheat noodle.  Thus, spaghetti style dishes result in two pans of boiling water, two pasta ladles, two strainers, two serving bowls, and tons of leftovers.  I've learned to cook two different shaped noodles to keep straight which noodle is which.   I am so thankful that my husband, Rick, jumped right on board and has been so supportive of the gluten-free diet and lifestyle changes that come with having a child that is celiac.  

Early on we knew something was not quite right.  Our happy child, a cheerful toddler of two, traveled with us on a family vacation through Europe to visit family and friends.  We worshiped in grand cathedrals and small parishes throughout Germany.  Lit candles in Notre Dame, Paris.  We spent hours circling castles, museums, and churches inside and out.   Many of my friends with toddlers could barely get through a homily in our home parish, and here Nate sat through masses and tours.  Nate was all for the experience.  I think Nate found this all one grand scavenger hunt and just enjoyed searching for the German stone-carved lions; everywhere we went we found the grand beast guarding gates and doorways.  

Two weeks after returning, Nate became increasingly sick.  Grey-green complexion, constant diarrhea, and an immediate change in temperament and personality.  No happy child, rather, one that was irritable and angry with the world.  Family and friends pointed to our parenting or congratulated us that our child had skipped the "two's" and arrived at the "terrible three's".  

Several months later, a series of events led us to the diagnosis of gluten intolerance.  At that time, we also removed all dairy from his diet, hoping that after healing from the gluten free diet, he might reintroduce dairy to his diet with success.  Within days, Nate's gut was beginning to heal.  His bowel issues resolved, his skin returned to a healthier pink, and his constant irritability lessened.  

Years later, I was asked if I had prayed for Nate to be healed of Celiac Disease.  I don't think it ever crossed my mind.  Pray for Nate to be healed from gluten intolerance? Allergies have always been a part of my life, from a toddler-aged anaphylactic reaction to aspirin, to a 48-hour stomach-convulsing response to seafood as a youth.  I just assumed this was an idiosyncrasy of our family gene pool.

I do remember praying for patience and direction.  Before the diagnosis I needed lots of patience to get through the days that were filled with a crying and frustrated child.  After the diagnosis, my prayer energy was directed towards praying for myself and making it through each experimental meal, each gluten free scavenger (grocery) shopping trip, and each pain-induced toddler tantrum.  

I realize that I still don't pray for a miraculous healing for Nate.  Everyone has their cross to bear; this is Nate's, this is mine, this is our family's.  Instead, I have prayed for support, patience, and understanding. For some reason, my prayers have not been focused on eliminating the disorder.   In one way, my prayers have been answered, through the easy acceptance of our new lifestyle, through close friendships that have developed with supportive celiac friends, and with compassion for helping Nate travel through childhood with a positive attitude.  

Monday, July 27, 2009

Does it Get Easier?

Does it get any easier?  

Waiting for our children after Religious Education, a mother of a three year old toddler who was recently diagnosed with Celiac, shared her frustrations.  Caleb was cranky on alternating days.  His disposition was cheery until 18 months, and then the “terrible two’s” hit.  The irrationality seemed to happen shortly after meals.  

Now Caleb was mellowing, but mom’s days were filled with reading labels, convincing Grandma that barley malt on the bottom of the cereal ingredients will cause irritation, and cooking double the meals.  

When does it get easier?  For each family it will be a different time frame.  And then, as I counseled with her, it is going to come and go.  Just when cooking the meals becomes a routine, you have your favorite recipes, you know where to search for your favorite gluten free foods . . . the grocery store drops a line of gluten free products, or your child decides to boycott all bread!  

The past two years have been our best years following the diet.  Nate has had the ability to ask questions about his food, so he has taken on the responsibility for speaking up, or at least pulling aside someone to check on ingredients.  He knows how to get his pix ready and who to give it to before mass.  Nate has also started becoming aware of being hungry and asking for food.  Between the ages of three and eight, Nate just did not sense he was hungry until he was starved.  These past few years have been very liberating for all of us.  

Right now, Nate is on the verge of becoming a teenager; he is counting the days until his thirteenth birthday.  I am sure, if asked, he even knows the exact number of days until that “twelve” turns and becomes “--teen.”  With this past year, his diet has changed, partly because his circle of socialization has broadened, and his friends are now “expanding” his view of “food.”  Also, whether he likes the food, or not, he is more aware of what others are eating and whether his food looks like his friends.  

Now, we have had several conversations about what are “real” friends, and who supports each other in a positive manner.  Our close knit friends seem to come from our church family, our extended family, and those from our “schools” albeit classes, homeschool groups, or club involvement.  Even with all of this knowledge, Nate is still aware of impressions made with new acquaintances.  He is sensitive to being the only kid bringing a sack lunch, having to turn down eating a handful of Oreo cookies as fast as he can,  or bringing his own pizza to an event.  

When will it get easier?  I believe that it continually becomes easier; soon, for Caleb, he will have more developed communication and be able to request his favorite foods or explain when he is feeling irritated inside.   For Nate, he may reach a point that he wishes to take the chance to taste all the party foods and then relearn how it causes his body to react.  Like everything else in the teen years, it will probably be an interesting roller coaster before it all evens out.

For myself, all too soon, I will be baking only one type of cookies, wishing for the days that I was mixing gluten-free flours and washing the mixing bowl between batches.  

Sunday, July 26, 2009

First Eucharist Article from National Catholic Reporter (April 2009)

I have started collecting stories of other children and families that are living the Catholic Celiac life.  This one came from a variety of different sources on the web, but I believe it originated from the National Catholic Reporter.  The family has also recorded it on their own personal blog.  

Beautifully written and well researched.  Enjoy!

When Wheat Won’t Work

More Finding Ways Around Celiac Disease



April 26-May 2, 2009 Issue | Posted 4/17/09 at 6:04 AM

HOWELL, Mich. — First Communion season is upon us, and Maureen Wittmann still recalls the first Communion of her son, Gregory, three years ago. Gregory suffers from celiac disease.

Gregory, then 7, was the only child there who didn’t receive a consecrated host from the priest. Instead, he drank from the chalice.

Celiac disease causes intolerance to gluten, an essential part of wheat.

Gregory’s family had known since he was 2 that he was a celiac sufferer, and when first Communion time approached, they explained the situation to their priest.

“He was great about it and didn’t think it was a big deal,” said the home-schooling mother of seven children. “‘We’ll just give him the Precious Blood,’ he told us.”

On first Communion day, the priest made it a teaching moment for the entire parish, as he explained how Christ is fully present in the Precious Blood as well as in the host.

It’s been a little more challenging for Greg at the family’s new parish since they moved last year. “The second or third week we were there, I saw part of the presider’s host floating in the Precious Blood,” explained Wittmann.

Those with celiac disease not only have to abstain from ingesting wheat, but also must avoid coming into contact with wheat. Drinking from a chalice in which the celebrant’s host is commingled or from the same chalice others drink from after they receive a traditional wheat host presents a problem.

“Greg can’t eat pepperoni from the top of a pizza because it’s contaminated,” said Wittmann. “Any amount of gluten can damage his intestines; I don’t want to set him up for lymphoma or any other diseases.”

Some may think Wittmann may be overreacting, but the University of Maryland Center for Celiac Research has found that celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver and spleen) and gynecological disorders.

Untreated celiac disease has also been linked to an increased risk of certain types of cancer, especially intestinal lymphoma.

Low-Gluten Host

The Church teaches that when a priest consecrates the Eucharist, the bread and wine become, in substance, the body and blood of Christ — but the characteristics of bread and wine remain and act upon the body as they would if they were not consecrated.

The Compendium of the Catechism of the Catholic Church teaches: “Transubstantiation means the change of the whole substance of bread into the substance of the body of Christ and of the whole substance of wine into the substance of his blood. This change is brought about in the Eucharistic Prayer through the efficacy of the word of Christ and by the action of the Holy Spirit. However, the outward characteristics of bread and wine, that is the ‘Eucharistic species,’ remain unaltered.”

Gluten is a type of protein found in some grass-related grains that give bread elasticity.

According to a study by the University of Maryland School of Medicine in Baltimore, almost one out of every 133 Americans suffers from celiac disease. That means that there may be one celiac, or more, in every Catholic parish with more than 100 members in the United States.

That celiac may even be the priest of the parish or the bishop of the diocese, like the coadjutor archbishop of Cincinnati, Dennis Schnurr.

Viable options exist for those who suffer to participate in the Eucharist, but much confusion and some ignorance still remains. What alternatives are there? And how can the Church and her priests better serve parishioners with the disease?

Wittmann has had to watch carefully which side the celebrant’s chalice goes to, then direct Greg to a different chalice. But that changed when the family discovered a low-gluten host developed by the Benedictine Sisters of Perpetual Adoration in Clyde, Mo.

“I buy the new hosts from the sisters, put one in a pyx and take it up to the altar before Mass for father,” Wittmann said.

Because the celebrant handles the traditional wheat host, he cannot touch Greg’s host. So he drops the host from the pyx into Greg’s hands.

But the process doesn’t run as smoothly when the Wittmanns visit a new church and don’t get a chance to make accommodations with the priest ahead of time. Then Greg has to take his chances with a chalice — unless the Precious Blood runs out.

“One thing we trained him to do was a spiritual communion at times, like a few Sundays ago at a different church, when there was no Precious Blood left once we got up there,” said Wittmann. “He just asks Jesus to come into his heart.”

The Benedictines’ low-gluten host — 10 years in the making — is the only one approved by the U.S. Conference of Catholic Bishops because it is made of 100% wheat starch with enough gluten to effect bread.

When tested by an independent agency, the host had only .01% — or 100 parts per million — gluten. Reportedly, most celiacs would have to eat 270 such hosts in one day to become ill.

“We advise people to check with their doctors before trying our host, but we have had no report to us that after consuming our breads anyone became sick,” said Benedictine Sister Sophia Becker, assistant manager of the altar bread department. “Still, some people choose not to use it.”

The hosts last four to six months when refrigerated or frozen. In 2004, their first year of sales, only 2,800 bags of 20 hosts were purchased. Now, the sisters have 3,700 patrons and sold 9,000 bags in 2008.

Barbara Coughlin, 56, a medical consultant for the state of Connecticut, said she thanks God for the Benedictine Sisters every time she receives their low-gluten host at Mass. “Once you are deprived of something, you have so much more appreciation for it,” she said. “I never take it for granted.”

Diagnosed nine years ago, the Kensington, Conn., resident said that the worst part of her diagnosis was not receiving the body of Christ. “Celiac disease is very socially isolating; it makes you feel like a spiritual leper,” she explained.

Coughlin said that when the sisters came out with the low-gluten host, it made all the difference in the world for her. “Once I felt fully in communion with the Church, it was easier for me to accept my celiac disease,” she said. “I truly, truly believe this is a work of the Holy Spirit.”

Celiac Bishop Defends Wheat

Coadjutor Archbishop Dennis Schnurr of Cincinnati was diagnosed with celiac disease eight years ago, but was symptomatic for 30 years. The 60-year-old bishop uses a low-gluten host in his private chapel for daily Mass and ingests a small portion of a wheat host — about a 1/4-inch square — on most public occasions. Any more would cause a negative physical reaction.

Despite the fact that wheat makes him sick, Archbishop Schnurr still defends its presence in the host. “The Church must be faithful to the matter and form of the sacraments as given to her by Christ. If the matter or form is changed, we no longer have the sacrament,” he explained in an e-mail to the Register.

The validity of the matter — bread and wine — to be consecrated as the Eucharist is defined in Canon 925 of the 1983 Code of Canon Law; the host for Mass must be made only of wheat.

According to Redemptionis Sacramentum, issued in March of 2004, the sacrament is invalidated if any substitutes to bread and wine are used. Paragraph 48 of the document states:

“The bread used in the celebration of the most holy Eucharistic sacrifice must be unleavened, purely of wheat, and recently made so that there is no danger of decomposition. It follows therefore that bread made from another substance, even if it is grain, or if it is mixed with another substance different from wheat to such an extent that it would not commonly be considered wheat bread, does not constitute valid matter for confecting the sacrifice and the Eucharistic sacrament.”

Archbishop Schnurr offers some words of consolation. “In cases where a person cannot ingest the smallest amount of wheat or alcohol, I have reminded them of the great consolation that St. Thérèse of Lisieux experienced in spiritual communion,” he wrote. “In the terminal stages of her illness, she was unable to ingest any nutrition, including the holy Eucharist. Still, she expressed consolation, in that she knew that her desire alone was enough to bring Jesus to her.”

Annamarie Adkins writes

from St. Pa

Wednesday, July 22, 2009

Macaroni and Cheese

Macaroni and Cheese.  I was crying over macaroni and cheese.  It was late, my husband and I were putting closure to the day when I burst into tears.  I wanted to go back to the time when I could cook anything for our three year old son, Nate.  

Macaroni and cheese, cheese pizza, and grilled cheese sandwiches were his favorites.  After a rapid decline in his health, our pediatrician recommended an immediate removal of all casein and gluten from Nate's diet.  Immediately.  It seemed like everything that Nate ate was wheat and cheese.  Later I learned that the body will crave the very thing that causes the pain.  There is this cycle of pain, self-creating endorphins, relief, craving, pain, soothing and repeat.  Nate had  been medicating himself with the very foods that were creating the irritation.

Life became very frantic for a period of time.  I would search the grocery store shelves and everything seemed to be filled with modified food starch, barley malt, natural flavorings, or just plain old WHEAT.  Grocery shopping became a very emotionally draining adventure, especially with a preschooler who was confused about the sudden ban on his favorite foods.  Tears would come to both of us and we would leave the store with vegetables and fruit, a can of tuna, and a bag of rice.  

A few days after the tearful "Macaroni and Cheese" night, I also realized that Nate would be banned from receiving the host at mass.  At this time, in 1999, there was no approval for low-gluten wafers in America, and so in a depressed state from the inability to find a simple box of pasta and yellow flavored cheese powder, I was circling further into sadness as I realized that receiving the Body of Christ was also going to be denied.  In this mind set, I did not have the sense to ask questions.  I did not know where to ask.  Even the internet was not an option, as it was just beginning to burst forth with search engines and research files.  

This was a very spiritually empty time in my life.  I did not turn to God.  I was not angry.  I had nothing to rejoice.  I was just very empty and tired.  Nothing tasted good.  When receiving Eucharist for myself, it was a very solemn moment reminding me of what seemed a very bleak spiritual future for Nate.  

To me, the world was ever becoming smaller and darker. 

Tuesday, July 21, 2009

Vacation Bible School -- God is with us! Fear not!

God is with us!  Fear not!

Today was the opening day for Vacation Bible School here in our parish.  It’s been seven years since I helped in VBS, my last time being the second and last year our son Nate participated.  Emily, our daughter, has not experienced this whole VBS venture and has looked forward to the week since the first announcement from the pulpit.  

Fear Not!  I am not afraid of the experience like I had the first year Nate attended.  That year, I was checking in on the snack program, making sure that Nate had alternatives; educating the kitchen staff about the barley malt in Kellogg’s rice crispies; checking that no wheat flour play dough was in his craft area; and then sticking close by, as he was still having bladder control issues about 20 minutes after eating and usually needed to visit the restroom frequently for the next hour.  (Later we learned that it was corn intolerance that created the frequency of bathroom trips.)

Still, I wanted Nate to experience VBS as I had loved it 20 years earlier; a fun summer week of songs, puppet shows, bible stories, and popsicle stick crafts.  For Nate, he loved the whole week.  He met a friend that has become best buddies for nine years.  He still points out his VBS teacher at church.  And he remembers getting to eat gummy worms instead of gold fish after a bible story; everyone else ate the fish caught by the disciple fishermen, and Nate ate the worms used to catch the fish.  (Didn’t they use a net?  Never mind, Nate believed it, and felt part of the whole experience.)

Our second year, I was a veteran VBS mom.  Nate no longer had bladder control issues.  Nate’s best friend’s mother was a snack mom and made sure to create identical snack plates out of gluten free items.  Little did I realize as I crewed my own team of VBS children, that Nate’s team held a verbal bully of unknown restraints.  This boy, J.R.,  was a tyrant at the parochial school and arrived in the latest baggy shorts, oversized VBS t-shirt, and Converse skater shoes.  J.R. would have been an increased terror if his body was as big as his ego, but as it was, he was the smallest in his class, and probably the brunt of much pestering through the year.  

J.R. found Nate’s weak point, Nate’s concern that his food was similar to everyone else’s.  I may have created this sensitivity in Nate.  I had read all the books on special diets, learned all the tricks to make sure that food was not an issue, and had created an oversensitivity to differences.  Then again, according to all of the resources, whether it is allergies, diabetes, or celiac, kids know when they are different and its not by their choice.  

On the first day, J.R. pointed out that Nate’s cookies were not the same chocolate chip cookies.  They were the same size.  The same number.  Store bought.  But, being Pamela’s Chocolate Chunk, the chips were square not round.  J.R. announced to everyone that they must taste gross to have square chips.  Nate’s friends could care less, cookies taste good no matter what.  At home, we talked over ways to redirect the friendship, and headed back for a second day with high hopes it would all blow over.

Day two, everywhere Nate traveled with his group, the insecure J.R. made sure to whisper or proclaim to the group, that Nate’s pretzels for snack were weird, only weird kids would eat weird food.  I can only wonder and empathize with J.R.’s mother, over the cruel things that must be presented to J.R., so much anger and revenge stored up and blasting out of this young child.  

Day three.  Nate did not even make it to snack.  I was called from music to meet him on the playground.  Coming out of the school, I could hear the taunting voice of J.R. chanting something about “Weird kids, eat weird food.”  Nate wanted to just go home.  He was tired of the whole ordeal.  

My options, switching Nate to another group, which would reinforce the bully.  Secondly, spending some time providing an educational opportunity for the whole group.  Third, gaining support from the VBS leadership committee for redirecting the situation.  Looking at Nate, he was emotionally tired.  His crew leaders said he had stood up and used good verbal comments to make friends or try to share why his food was different, but during this third morning, he had pulled in and was beginning to withdraw from all of the activities.  

“What do you want Nate?”  

“Can I just walk home?”  

“Too far.”

“Can I go to Auntie’s house?”

Thank goodness for cellphones.  I whipped mine out, called my sister-in-law, and she willingly offered to meet us outside of the church.   Auntie lived six houses from the church, and before she could leave her front porch, Nate had run to the corner and then looking both ways before stepping into the street, he waved to me, and skipped off to the safety of Auntie’s house.  

Nate’s VBS experience did not need to be torturous.  At the same time, I decided that some redirection, a little education, and some care needed to be spent with J.R.  Here was a child that was screaming for some attention and found his means of venting by picking on what he perceived as a weaker link.  

Without much commotion, the director made a team leader switch, and I became the leader of J.R.’s team.  Without Nate present, J.R. quickly began sizing up who would be  the next weak link and started pecking to find the soft vulnerable spots in his team.  Over the next two days, J.R. and I spent many conversations, redirection moments, and lots of talking about “How’s school?”.  J.R. has many food issues related to dairy and eggs, and has lived through his own torture of weird food, weird kid chants for his first two years of school.  

I wish I could say that our two days changed J.R.’s self image or that he returned to school stronger and kinder.   For Nate, his VBS experience was plenty for several years and he desired to avoid activities that crossed paths with this child.  

As adults it seems like there are plenty of opportunities to pray for those enemies far away.   As children, it’s the classmate or local neighborhood bullies, and they seem as big as giants; these are the ones that we parents need to model praying for.  It’s a hard lesson.  It’s the first moment of experiencing “walking in the shadow of darkness.”  It’s really scary, but it is in this moment that we can teach what it means that we are not alone, for “thy rod and they staff they comfort me.”

So, entering VBS seven years later, I have a whole new attitude, and Nate, now having experienced many different  “valleys of darkness” now has the skills (and the thicker skin) to deal with explaining about his “weird food.”  Actually, he is quite proud of his special food, it often opens doors for him that provide larger portions or special treats from the snack moms.  

Sunday, July 19, 2009

Lost and Found. The Precious Freezer Treasure.

"Mom!  Where's my pyx?"  

"In the freezer?  Next to your wafers?"

"Can't find it!  There it is!  It's under the frozen lemons!"

For five years this is the Sunday ritual.  Sometimes under the bag of low-gluten wafers sent from the Benedictine sisters, sometimes next to the chunk of ginger that rotates through the freezer compartments.  No matter how many times we swear that we will reload the pyx with a wafer, put the loaded pyx in the top rack of the freezer door, we always scramble Sunday morning to get the wafer into the pyx, into the pocket, out the door, and into the hands of the altar servers before mass.

Ever since our son Nate's First Eucharist, five years after we discovered he was celiac, we have held this ritual of supplying the low-gluten wafer for mass.  At one time these wafers were kept at the church, with the hopes that the elderly parishioner with celiac would enjoy the option of receiving the host.  After a year, she admitted that she had gone too long only receiving the Blood of Christ and was not missing receiving the Body.  Then, the priest came through and decided the freezer was an energy waster and asked us to supply our wafers from home.  We were the only family needing a low-gluten wafer.  

There was a stage about the age of nine that lasted nearly a year.  Nate was angry when we forgot the wafer, when he lost his pyx in a coat pocket for a couple weeks, or when we visited a church that was awkward with permitting this special arrangement.  I wish that I had a copy of the original pronouncement of the American Catholic acceptance of the low-gluten wafers.  At that time it was Cardinal Ratzinger, now Pope Benedict, that declared the approval of using these specially made wafers in mass.  

Much has happened through the years since we baptized Nate, discovered his being celiac, his First Eucharist, and most recently his confirmation.  My first support was an old, now non-existent, website for Celiac Catholic Kids.  I opted to reorder the title of this blog, as being Catholic is far more significant of an identity than being celiac or a child; being celiac will never change for Nate, but growing up from childhood will.

Please join in and share resources, stories of struggles, and moments of joy.