The emotional side of Celiac Disease

Ten months ago my life was turned upside down. After years of stomach problems, 8 months of severe weight loss, bouts of vomiting and diarrhea and the inability to properly nurse my daughter, I was diagnosed with Celiac Disease. Celiac Disease is an autoimmune disorder whereby the body views gluten as poison. As a result, when gluten (i.e. wheat, barley, rye, etc) is ingested the small intestine shuts down and prevents the body from absorbing the nutrients it requires from the food to survive. In severe cases like mine, when you are unaware that you have celiac disease and continue to eat gluten, your body begins to go into starvation mode.


The only cure for Celiac disease is to remain on a gluten free diet. This means you need to avoid ingesting gluten, anything that comes in contact with gluten, and the knowledge to know how to read labels to be able to find where sources of gluten may be hiding.

Here are two amazing charts I found on The Gluten Free Chef.

This first chart shows foods that are commonly associated with gluten.

Wheat Barley Rye
Bread and bread rolls Rye bread, pumpernickel Yorkshire pudding
Pretzels Cakes Stuffings and dressings
Muffins Pastry or pie crust Pancakes
Biscuits or cookies Pasta – macaroni, spaghetti, etc. Crispbreads
Bulgar wheat Durham Crumble toppings
Couscous Pizza dough Semolina
Scones Batter Breakfast cereals
All Bran Sponge puddings Breadcrumbed ham
Bagels Cheesecakes Muesli
Crumpets Shortbread Dumplings
Spelt Triticale Batter

This second chart shows foods that are not commonly thought to contain gluten. When I first began reading labels, I was shocked to discover this list.

Sausages Luncheon meat Blue cheese
Gravy powder and browning Matzo flour/meal Shredded suet
Seitan (doesn’t contain gluten, it IS gluten!) Hydrolyzed Vegetable Protein (HVP) Baked beans
Farina Meat and fish pastes Paté
Self basting turkeys Sauces Communion wafers
Soups Mustards Instant coffee
Brown rice syrup Cheap brands of chocolate Potato crisps/chips
Soy sauce Drinking chocolate Licorice
Chutneys and pickles Salad dressings Curry powder
White pepper Malt vinegar Play Dough
Supplements Some toothpastes Some lipsticks
Some pharmaceutical products Hard candy Imitation crab meat
OXO cubes Beefburgers Oatmeal*

*There are gluten free oats available, HOWEVER some people with celiac disease cannot tolerate GLUTEN FREE oats. It is one of those iffy items.

For 10 months now, I can officially say I have been GLUTEN FREE. There has been the odd time that I have slipped up (i.e. eating the icing of a gluten cupcake!) and there are many, many times that I have eaten something I didn’t know that contained gluten. For example, my husband whipped up a delicious meatloaf for dinner. He carefully made sure that he used gluten free flour, avoided breadcrumbs and made it safe for me to eat. I ate it for dinner and 10 minutes later my stomach started cramping, I began to bloat and feel awful.  The feeling of pain and discomfort lasted for several hours.  When the pain subsided and I was able to thing again, I reviewed my day and try to determine what caused my reaction. Sometimes, my reactions to gluten can be immediate and other times it can occur hours later. My meals that day consisted of foods that I ate on a normal day; the only unique food was the meatloaf.  After thorough investigation, I discovered that my husband used Worchester sauce (which we had used many, many times in the past PRE DIAGONSIS!), which contains malt vinegar! GRRR! It just goes to show you that it’s not easy to eat gluten free.

I find that I have been able to adapt to the physical requirements of celiac disease but I struggle with the emotional side. Imagine going to a restaurant for your anniversary and not being able to order anything on the menu but a salad and knowing that you are probably going to have a reaction due to some sort of cross contamination anyways. Imagine going to a birthday party and not being able to indulge in the delicious ice cream cake being served around you. Or imagine going to a family event and having to ask about each dish on the table to ensure that it’s safe to eat. It can be embarrassing, heartbreaking and challenging. Celiac disease is a ‘silent’ disease. When you are exposed to gluten (whether through contamination or ingesting the actual source), your reaction is not immediate nor does it show on the outside. Your face doesn’t swell, you don’t get hives or you don’t have trouble breathing like it does with peanut allergies, instead you have severe cramps, can’t hold down your meal and begin to starve your body of the nutrients it requires.  I’ve had people say, “Well its not like your going to die if you eat it!” This is the part that I’m having trouble dealing with. I can give up the cookies and bread, I can buy my own toaster and use my own utensils when cooking, but its hard dealing with the emotional stigmatism that just because I won’t die immediately or because you can’t see my reactions, doesn’t mean that it doesn’t affect my life in a large way.

I hope by my posts about my life and the affects that celiac disease has on my life educate people to what it is all about and how it physically and emotional affects a person. For many years, while growing up my mom had a lot of  ‘allergies’, one of them being a gluten sensitivity. Until, I was thrust in the same situation, I never really understood the impact on her life.  I feel horrible at all she missed out and how little anyone cared.  Although, we are blessed with many more gluten free options available today, this silent disease needs to be heard!

Celiac Disease is not the only “silent” disease out there who’s symptoms are not as dramatic as other diseases. Do you suffer from a ‘silent’ disease?

Comments (17)

  • Wow! Thanks for sharing this, Jenn! My niece is Celiac. She was diagnosed when she was very young. My SIL noticed she was affected by food she was eating at as young as 2 years of age, but couldn’t test until she was older.

    She is one of the healthiest girls I know since she doesn’t eat any processed food! She is Celiac, has nut allergies, soy allergies, some fruit allergies, dairy allergies…But she is healthy, happy, and knows how to make good food choices that offer her all the nutrition she needs. It has made us all very aware of the food we consume because we have to be so careful with her. She is now going to be 18 and on her way to college!

    Reply
  • Oops! That was me, Christine –I forgot to sign out. 🙂

    Reply
  • I was diagnosed with Celiac in December 2012 on top of being a type 1 diabetic since the age of 4, I still am not completely gluten free as there is a lot to learn about products, this was and will be very helpful to me 🙂 Thanks for sharing

    Reply
  • Celiac Disease is tough emotionally. There are times where I get bummed out when something I am craving is not available GF and that’s okay. We are allowed to mourn the fact that we cannot consume something. On the other side, this only encourages me to create a GF alternative for my self! I must say that in the 11 years since being diagnosed that my cooking/baking skills have been tremendously upgraded!

    Please don’t let the people who are blissfully ignorant to the seriousness of Celiac Disease get you down or make you feel like you must eat something that you should not. I think that this is something that we all deal with. Some more than others unfortunately. Anytime I’m confronted with someone who thinks that just one bite is okay, I take the opportunity to educate them on the long term effects of just one crumb and how a small bite would end my life earlier then I would like.

    There is a wonderful network of support online for Celiac’s. If you are ever down, need tips on how to deal with the ill informed or just want to chat recipes and ideas, take advantage. 🙂

    Reply
  • I’ve always had issues with my digestive system and I had no idea what Celiac Disease was until I was suspected of having it. This was about 15 years ago and I was told the only way to properly test for it is to go completely gluten-free then consuming a gluten-containing food and observe the effects. Needless to say, I wasn’t successful in going gluten-free at the time. It was too overwhelming for a 16 year old! Luckily my issues have reduced in time and I don’t need to be on a gluten-free diet but I am very sympathetic to those that have Celiac. Thank you for sharing your story with us! 🙂

    Janine
    Reply
  • Sandra, I’d love to contact you and find out about that network! I need it! Thx

    Reply
  • I’ve started following your blog.
    You can find me on Blogger at http://gluten-free-doll.blogspot.ca/

    I’m also on Twitter @GlutenFreeDoll

    Let’s keep in touch 🙂

    Sandra

    Reply
  • Severe coeliac disease leads to the characteristic symptoms of pale, loose and greasy stool (steatorrhoea) and weight loss or failure to gain weight (in young children). People with milder coeliac disease may have symptoms that are much more subtle and occur in other organs than the bowel itself. It is also possible to have coeliac disease without any symptoms whatsoever..’;-

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