You Have Just Been Diagnosed With Celiac, Where Do You Go From Here?

You have just been diagnosed with Celiac, where do you go from here?

 

You are leaving your doctor’s office, making the drive home and your mind is racing with a thousand questions.  What is gluten?  What exactly is Celiac Disease?  What can I eat?  What does ‘glutenized’ mean?  What is cross-contamination?  What do I buy?  How do I know what to buy?  Where do I go to buy it?  How do I explain to my family?  friends?  How do I cook gluten-free at home?  How am I going to afford to buy gluten-free food?  Can I ever eat out at a restaurant again?   Where do I find the answers?

 

First off, take a deep breath. The changes in your life will be difficult at first, and although those changes will have positive effects on you, they will ultimately have an effect on your family as well.  Remember…you are not alone!  According to statistics, Celiac Disease affects 1 in every 133 persons in the US affecting approximately 3 million Americans, and 5-10% of people suffer from gluten intolerance.

Secondly, reassure yourself that Celiac Disease, although painful and difficult to handle sometimes, IS manageable.  It is important to become educated on the disease, and educate family, friends, and co-workers. You see, people around you on a daily basis need to know how easily foods can become cross-contaminated with gluten which will inevitably affect you.

Let’s take one question at a time.

What is gluten?  Many people think that gluten is wheat.  Not so.  Gluten is a protein found in foods processed from wheat and related grains.  It is responsible for giving breads their elasticity and texture and is composed of two parts: gliadin and glutelin.

What is Celiac Disease?  In the most basic terms, Celiac Disease is an auto-immune disease of the digestive system.  When you ingest gluten, the small intestine is damaged, interfering with the absorption of nutrients from the foods that you eat.  Do not get Celiac confused with Gluten Intolerance or Wheat Allergies.  Celiac is a disease that you will have for your lifetime and will never be outgrown as some allergies are.  See Myths Surrounding Celiac Disease.

What can I eat?  Let’s start with what you cannot eat.  Any bread and pasta, as you currently know them, is definitely off of your list.  That includes pizza!  There are many gluten-free alternatives available today, so don’t fret.  In searching your food items, you will need to familiarize yourself with exactly what has gluten in it.  The main ingredients that include gluten are wheat,  barley, rye, malts, non gluten-free oats, kamut, spelt, and triticale.  The not so obvious is what can get us Celiacs in trouble.  Beware of anything that has ‘natural and/or artificial flavorings’.  If the ingredients are not listed, chances are there are trace elements of gluten in that product.  Check labels for ‘made in a gluten-free facility’.  This.is.very.important! It is not worth taking the risk that it may be okay.   Foods may be processed gluten-free, but cross-contaminated when manufactured in a facility that also manufactures non gluten-free foods.

What does ‘glutenized’ mean?  This is a term that Celiacs use when they have ingested gluten in one way or another.  You would think that someone diagnosed with Celiac would be very careful to avoid gluten in their food.  You have to remember, that Celiac presents with an array of symptoms, some patients having no pain, which then believe that there is nothing seriously wrong.  They eat foods with gluten and with no pain, assume it is okay.  Unfortunately, they cannot see the internal damage they are causing, which will eventually lead to greater issues.  Sometimes, patients are not compliant as with any other disease.  And then, there is someone who is glutenized due to cross-contamination.

What is cross-contamination?  This is where your gluten-free food item has been contaminated with gluten in some way.  Some Celiacs are highly sensitive and become extremely sick from just a crumb of gluten bread being on the counter top when you are preparing your food on the same counter, or using a knife to spread butter on your gluten-free bread that was previously used by a non Celiac to spread butter on their bread.  See How Do You Handle Cross Contamination

What do I buy?  Going shopping for gluten-free foods will be overwhelming at first.  I can assure you though, that over time, this will become second nature for you as any other change in your life.  When you are new to shopping gluten-free, I suggest developing a menu plan before you ever leave your house.  Deciding meals ahead of time allows you to review your food items and make a shopping list.  There will be some items that you won’t be able to purchase prepared gluten-free and you need to resolve yourself to making it at home if you intend to eat it.  Please keep in mind that working with gluten-free flour blends involves purchasing several different flours, i.e. white rice flour, brown rice flour, millet flour, sorghum flour, tapioca flour, just to name a few, and blending them.  The major difference is that 1 tsp of Xanthum or Guar gum needs to be added to each cup of gluten free flour used to allow rising.  You will find that different flour blends work differently in different recipes.  I have found this All Purpose Flour Blend to work best in everyday cooking and baking cakes.  When baking gluten-free cookies, I have found a blend of flours containing Sweet White Rice Flour seems to have the best results, especially when substituting 1:1 in a traditional recipe.  Success when cooking and baking with gluten free flours highly depends on the ratio between the flour and starches.  See Differences among Gluten-Free Flours and Gluten-Free Blends  Buying gluten-free foods will cost significantly more than what you are presently used to.  Buying in bulk on-line is cost-effective, if you are able.  Storing your flours in the freezer in air tight bag will help extend the life of the flours.  Making your own flour blends will save you money in the long run.

What do I buy, how do I know what to buy, and where do I go to buy it?  To begin with, shopping at a health food store will be more costly, but will give you a world of information.  Most health food stores are extremely knowledgeable and can answer most of your questions.  Search for the gluten-free isle and go through everything.  As with anything else, there will be some gluten-free foods that you care for, and some that you don’t.  Everyone’s taste is different.  Once you have found the gluten-free foods that you like, and you feel comfortable with recognizing the labels, you are ready to venture out to other grocery stores.  More and more, grocery stores are incorporating an area specifically gluten and/or allergy free.  Of course, you will be limited by what they have to offer, but it’s great when you just need an item or two. Celiacs do pay more for the food that they buy, but save your receipts.  If you have a definitive diagnosis of Celiac, there is a very good possibility that you can Claim Your Gluten Free Foods on Your Tax Returns.

 

What I say to you is to relax.  Take one day at a time.  Don’t allow yourself to be overwhelmed with all of the information out there.  Find a support group in your area.  Talk to your family and friends.  There are a lot of on-line Gluten-Free groups, join one or two and interact with others who are going through what you are right now, or have been there already.  Take everyone’s advice, but sift through it and personalize it to your situation.  It WILL be alright!

 

 

 

 

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Comments: 8

  1. Portia Burton January 9, 2013 at 8:45 am Reply

    Very informative and thank you for your efforts to spread awareness about this dangerous disease.
    -Portia

    • Mary January 9, 2013 at 9:46 am Reply

      Thank you for visiting Portia. I remember, so clearly, how overwhelmed I was when I was told about my daughter’s diagnosis. It’s hard for someone, when they are at that point in their life, to see past that and know that everything will work out alright :)

  2. jan January 9, 2013 at 1:46 pm Reply

    Ah marvelously packed with information tools for life with this illness, I will pass it around to the best of my ability. Thank you for taking the time and effort to put this together.

    • Mary January 9, 2013 at 10:50 pm Reply

      Thank you Jan. I appreciate your help in getting this out :)

  3. Brian and Felicia White January 11, 2013 at 7:33 pm Reply

    Very informative post Mary! Thanks for bringing awareness to this disease as well as solutions. Sharing!

  4. Anna Romano January 13, 2013 at 5:32 pm Reply

    Thanks you Mary , your posts are such great help and informative xx

  5. Sinea January 16, 2013 at 11:30 pm Reply

    This kind of news has to be earth shattering. Thank you for writing such a helpful, play-by-play post to walk people through it. ♥

  6. Lama Rimawi February 5, 2013 at 12:17 pm Reply

    Thank you for such a wonderful article, Mary. I remember when I had to go dairy and soy free with my little son. It took me months to figure out what to eat and how to do it. It was tough. That’s why I started Tasterie, a company focused on finding food for people with food allergies. I am launching a GoGlutenFree box for people who are just diagnosed with Celiac or nonceliac gluten sensitivity. Would love your thoughts on it.

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