Adjusting to the Gluten Free Diet

May is Celiac Disease Awareness Month.

The diagnosis of Celiac Disease often comes as a big relief.  Finally, an answer to the physical and health issues you or your child have been battling with for so long.  Now as the reality sinks in,  you know you will be making a lifestyle adjustment as well as a nutritional one.

You begin to realize a gluten-free diet means more than staying away from wheat.   Gluten is hidden in a myriad of grocery items while carrying an alias name.

Hidden Ingredients

Gluten is in pastas, couscous, and some corn chips.  It is also in typical pantry items:

rice pilaf

cereals

salad dressings

bbq sauces

prepackaged meals

gravies

soy sauce

For a complete list of items with gluten to avoid:  Unsafe Gluten-Free Food List (Unsafe Ingredients).

Sort out your cupboards

Get familiar with the gluten and gluten-free items you presently have in your cupboards.

Read every label and look up every questionable ingredient from  Safe Gluten-Free Food List (Safe Ingredients).

Separate the gluten from the gluten-free items you already have.

Make a list of staples you need to replace with gluten-free staples.

Sort out your feelings

Many individuals and their families report experiencing a range of emotions as they adjust to the gluten-free lifestyle.  Take your time listening to your feelings: your fear, irritability, loss or grief.  Respect your feelings by listening to them and giving yourself time to work through them.

Panic.  You may initially feel panic:  What will I pack for lunch? Will I ever eat out at a restaurant?   What kind of birthday cake will I make?  What do I make for dinner tonight?  Will everyone eat gluten-free?

Grief.  It took me a few months before I realized I was grieving over my love for baking.  I love baking decadent layer cakes and treats from scratch.  I am not a fan of gluten-free flours and its taste and texture in baked goods.  I avoided baking for a number of months and really missed it.  You may grieve the loss of  your traditional family stuffing recipe or other family favorites.

Stress.  There is so much information to figure while the weight of the responsibility falls on you.  Perhaps you expect yourself to figure it all out immediately.

Feeling Overwhelmed.  My kitchen cupboards and garage became an unorganized mess.  Since we decided to keep gluten items in the home, the pantry items doubled in quantity.  I do not have a natural knack for household organization, so it became a lengthy task as I tested and retested ways to organize.

Sort out your questions one by one

Make a list of the questions and hurdles you need to tackle.  Give yourself permission to sort out one hurdle at a time.  Here are a few ways I did this:

Restaurants:   I ordered a restaurant guide from Gluten Free Restaurants, Gluten Free Shopping | Triumph Dining.  This guide lists restaurants throughout the nation and the gluten-free menu items they carry.  One of our favorite restaurants listed only condiments.  Others offered a pleasant surprise with their list of gluten free food choices.   We carried this guide with us while traveling to areas with unfamiliar restaurants.

Thankfully, the internet makes eating out gluten-free much easier.  Look up the restaurant menu online and check the ingredients.  Usually grilled chicken, baked potatoes, scrambled eggs and bacon, cheeseburgers with no buns and salads are basics that restaurants are able to serve gluten-free.  Be careful about marinated chicken and salad dressings (ask for balsamic).  You can avoid disappointment if you check the menu and make a list before sitting down in the restaurant.

I often carry NutThin crackers or corn tortillas to a restaurant so our son can have a crunchy appetizer while the rest of the family nibbles on bread or chips and salsa before a meal.  (By the way, salsa is naturally gluten-free!)  I have found restaurants do not mind if I carry a small container of gluten-free salad dressing or brown rice to add to the meal when they do not have these gluten-free offerings on their menu.

Family Meals.  What about the two brothers who don’t need to give up their favorite cracker or sandwich?  Some families make their entire home gluten-free so the identified person does not feel left out.  After wrestling over this decision, we decided the family dinner will always be completely gluten-free.  Since we are all sitting around the table together we want to share the love!

Breakfasts, lunches and snacks are individualized.  The brothers have their own snack drawer and AJ has his special gluten-free cupboard accessible to him.   Fruit is always available in abundance for all.

Arm yourself with information.  I went to the bookstore and bought several books and cookbooks.  I really overdid it.  One resource book on Celiac Disease, one cookbook and one desserts book are plenty.

Over the years, I prefer to use my regular cookbooks and family recipes, adapting them as little as possible to the gluten-free diet.  You will discover several recipes are already gluten-free or can have simple adaptations without giving a gluten-free “taste”.

Grocery Shopping.  Many grocery stores list their gluten-free items on-line.  Print this list, check the items you need, and bring it along on your next shopping trip.  Some grocery stores also offer a gluten-free tour.  I have walked through grocery stores with store managers as they ask questions to understand what a gluten-free shopper needs.

Talk with the customer service representative in your local grocery store to discuss the items you need for your family.  Most of our local grocers want to meet this growing need for their customers.

Look for further Gluten Free posts from me this month:  Special Considerations for Special Needs Children on the Gluten Free Diet and Fret Free Gluten Free Recipes to get you Started and Cross-Contamination and the Gluten Free Diet

Tell me how your family has made the adjustment to gluten-free living.  What were (are) your greatest hurdles?

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Our nauseating road to diagnosis: Celiac Disease

May is Celiac Disease Awareness month

Phone calls trickled in every few days when he was 11 years old.  “AJ threw up in class today. “ The calls steadily increased and whether I was in an appointment or on a field trip with my other children, I would drop everything and run to pick AJ up in the school office.  The vomiting continued daily.  Anticipating the mess he would leave, we carried a beach towel for him to sit and spit up on. The projectile vomiting indiscriminately landed on the carpet in the van or the backpacks.  Our family room carpet and recliner could no longer hold up to the abuse of constant cleaning and scrubbing, we tossed them away.

Sometimes we gotta laugh

Our family enjoys reminiscing about an incident we shared while vacationing at Disneyland.  We stood on the crowded sidewalk watching Mickey’s parade.  My husband stood behind AJ, while AJ stood above a man watching  the parade from the curb.  Without warning, AJ bent over to throw up over the stranger’s head.  Thanks to my husband’s quick reflexes, he was able to catch the barf in his hand.  I ran to the nearest restaurant for a wad of napkins and quickly cleaned up my husband’s dripping hand.   Everyone was so engrossed in the parade it seemed we were the only ones who noticed.  Snickering over our family drama and the accident interrupted, we scurried away from the crowd.

“It’s all in his head”

We could tell AJ was not “ill”, he didn’t have a fever or lack of appetite.  But he would grab his head or stomach and lay to rest as the episodes increased.  We were visiting our pediatrician frequently.  Due to AJ’s limited speech and ability to communicate with us what he felt in his body, the diagnosis was difficult.  The doctor tested him, and eventually threw his hands up stating, “It’s all in his head”.

Our instincts knew the doctor was incorrect.  As I took notes of AJ’s episodes, I believed it was connected to eating, possibly his consumption of cold and acidic smoothies.   I pushed the doctor for a referral to a Pediatric G.I.   Cynically, the pediatrician agreed.  We waited 6 long months before we could get an appointment miles away from our home.

The G.I. asked a few brief questions:

“What does he eat for lunch?”  A sandwich.

“What snacks does he enjoy”?  Goldfish crackers and Cheezits.

The specialist seemed to know immediately what was wrong.

How Celiac Disease is diagnosed

A simple blood test was ordered and the diagnosis came quickly:  Celiac Disease.   You should know however, that blood tests can come back negatively when it is indeed Celiac Disease.

A definitive diagnosis for Celiac Disease can only come from an endoscopy/biopsy where tissue samples are taken from the small intestine.

What is Celiac Disease

Celiac Disease is a genetic disorder in which the small intestine is damaged by gluten.  Gluten is the protein within wheat, barley, oats, and rye.   Gluten must be completely avoided in the Celiac’s diet.

A secondary result of the gluten intolerance is damage to the villi.  Lactose must be completely avoided the first 6 months after a Celiac Disease diagnosis in order to allow the villi to heal.

Symptoms of Celiac Disease

  • Abdominal cramps, gas and bloating
  • Anemia
  • Diarrhea
  • Easy bruising
  • Epitasis (nose bleeding)
  • Failure to thrive
  • Fatigue or general weakness
  • Flatulence
  • Fluid retention
  • Foul-smelling or grayish stools that are often fatty or oily
  • Gastrointestinal symptoms
  • Gastrointestinal hemorrhage
  • Infertility
  • Iron deficiency anemia
  • lymphocytic gastritis

For a complete list click here: Celiac Disease Symptoms.

Who has Celiac Disease

Children, adults and family members of individuals with Celiac Disease are all susceptible.  If you have any question about yourself or a loved one, don’t hesitate to request testing.

Celiac Disease is often misdiagnosed or overlooked.  The results of untreated Celiac Disease include epilepsy, internal hemorrhaging, pancreatic disease, miscarriages, infertility, central and peripheral nervous system disorders.

Down’s Syndrome and Celiac Disease

One study performed in 2001 showed Celiac Disease in individuals with Down’s Syndrome occurs 25 times more than the general population.  Generally speaking, 10% of the Down’s Syndrome population has Celiac Disease.  I would venture to guess many of these individuals do not know.

In our case, the doctor was not in tune with the symptoms of Celiac Disease nor its prevalence in the Down’s Syndrome population.  While we carry our gluten-free food products to AJ’s special needs classroom or Special Olympic events, we have not encountered another family with Down’s Syndrome and Celiac Disease.  Since many of the general population does not know they have Celiac Disease, I am confident many more of the Down’s Syndrome population have not actively pursued a diagnosis either.

More information regarding Down Syndrome and Celiac Disease:

Down Syndrome: Celiac Disease Prevalent in Children With Down Syndrome.

Cures for Celiac Disease

Besides a strict adherence to gluten-free eating, there are presently no known cures or medications for Celiac Disease.  Celiac Disease awareness is increasing among doctors and patients.

Only 5 years ago, at the time of AJ’s diagnosis, I was ordering gluten-free products online and paying out the ear for them!  Thankfully, due to the increase of accurate diagnosis and the demand for these products, many of our local grocery stores are supplying a variety of gluten-free products.

Adjusting to a Gluten-Free Lifestyle

Adjusting to a gluten-free lifestyle has had its curve balls.  I will share an additional post how we have managed this adjustment not only as a family, but with a special needs child.

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