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FAMILY, KIDS, AND A GLUTEN FREE LIFESTYLE!

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The emotional struggle 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

& nbsp;

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?

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Comments

  1. Wow… I had never heard of this disease… bless your heart and I am thankful you finally found out what was going on

  3. I have 2 friends who have been diagnosised with Celiac. They both have been living GF lives for a good 10 years. My youngest brother has been eating GF for about a year now b/c of gluten insensitivity. **I** just recently found out I have a gluten insensitivity myself because I started doing a Paleo challenge called Whole30. The stomach issues & other pains I had dealt with my whole life are gone & I feel like a brand new person.

    I cannot even believe all of the things that contain gluten, but it seems like there are more options out there now then there were when my friends started their GF journey.

  5. I have ulcerative colitis, and makes me gluten intolerant. I finally found some enzymes that allow me to eat foods with gluten and not get sick. I was gluten free for 2 years and it was really hard. Items you thought would be safe had gluten in them.. just crazy! I am so glad you found out you have celiac disease and can hopefully get back to feeling better. PRaying for ya!

  6. I have a few friends that have Celiac Disease. They said that up til they were diagnosed, they just assumed the stomach aches were normal…now that they are gluten free, it’s a like new life.

    There are so many gluten free options now, I hope you continue to do well!

  7. Good luck on your journey. I know many people with this and it sucks. It is great to have a list like this though!

  8. Thanks for these lists…one of the youth in our Youth Group can’t eat gluten and I’m always wondering if what I’m serving is safe.

  9. Wow, good luck! Glad you were able to find out what was going on. I don’t know anyone with this but have heard it is a struggle until you get it under control!

  10. I had a close friend years ago who suffered from Celiac Disease, it was heartbreaking to see him in such constant agony. I’m happy to hear that you seem to be able to control it well, that is A LOT to have to remember on a daily basis, I was really shocked by some foods included on the second chart! Hope everything continues to go as well as possible for you!

  11. I am so sorry that you are going through this, but it sounds like you have really found what works for you. My husband has struggled with food sensitivities for a long time and it’s been a problem at potlucks, family meals, etc.

  12. I am so sorry that you are going through this, but it sounds like you have really found what works for you. My husband has struggled with food sensitivities for a long time and it’s been a problem at potlucks, family meals, etc.

  13. I feel for you. My husband has been diagnosed with Celiac disease, although we are not definitively sure that this is exactly what it is. But he has gone through diagnoses of Leaky Gut, Candidiasis and just Gluten/Wheat sensitivity. It is good to hear that you are controlling it. There are so many alternatives now out in the market, it makes things so much easier.

  14. This happened to a friend of mine from high school. She had no idea why she kept getting sick and throwing up. She lost 40 lbs. They thought she had cancer! I really feel for you! I hope that you will be able to find more and more alternatives to eat.

  15. I had a friend that was diagnosed with this. It was something very hard to accustom to but, she feels so much better and has lost a lot of weight in a healthy way.

  16. Very informative! I will read it again and again when I will get leisure time.
    free weights

  17. We’ve recently begun cutting out gluten for our family since our youngest daughter is showing a sensitivity – this list will help me with finding things that are safe to eat!

  18. I do have a silent illness, actually. Well, a couple. I have Crohn’s Disease and I have a severe back injury. Neither of those things can be seen and people tend to forget my limitations.

    I am glad you found answers and are managing okay now. It’s a journey.

  19. Oh love I had no clue you were a recent celiac. I did know you were gluten free but not so recent. We were gluten free for almost 2 years and then my daughter started to get sick all over again go figure she was not Celiac to begin with she had Crohn’s disease. 🙁 So sorry about your cross contamination.

  21. I’ve often wondered if I had Celiac Disease. I’m thinking not based on your post. I’m so sorry you have to deal with this. What a constant pain to deal with. =( I hope your friends and family try to understand the disease more so that you can eat comfortably with them and don’t have to live with constant pain and embarrassment!

  25. I learned so much about this thanks to your blog post. Thanks for sharing! Very informative.

  27. I agree! The only control we have is when we eat whole, natural foods (i.e. fruits and veggies!). Although restaurants are offering gluten free alternatives, unfortunately most are not educated to the fact that cross contamination is as bad as ingesting the gluten itself! That being said, at least they are making a positive step forward! 🙂

  28. please do! A lot of this info I have learned by trial and error! I wanted to share this post so that others could understand better! Thank you for sharing!

  29. Gluten is used as a thickening agent in most products. I agree! When I first went gluten free I couldn’t believe some of the foods I would have reactions to. Thanks to the Canadian Celiac Association and many of the resources they offer. I have learned a lot! I hope this post helps!

  32. A few friends of mine have gone gluten-free for one reason or another. It’s so hard to make sure things we don’t have 100% control over meet our dietary needs. But I have seen many restaurants start to become aware of the dietary needs of their patrons and offer great alternatives.

  33. Thank you for such helpful info. I have a few family members who have celiac disease and I’m passing this info on to them.

  34. That is crazy, why does gluten need to be in half of those things?! I have two friends who have just gone gluten free and I hope you don’t mind if I share this with them, I know they’ll appreciate it!

  35. I am glad that you were able to figure out what was ailing you. I think that ends up being half the battle. There is still so much education to spread around. I worry everytime I see businesses advertising “gluten free” if they truly understand and are taking proper precautions to keep all utensils separate and really watch the ingredients. Many people I know are going gluten free for weight loss and since they don’t have reactions, they don’t take it seriously… nor do the restaurants who serve them without complaint.

    We are a family with a ‘silent’ condition. My kids do not have celiac disease or allergies but an inborn error of metabolism. It doesn’t manifest itself outward but kills brain cells and can cause irrevocable brain damage and death. It is so hard to explain to people who just assume, “Oh, are they gluten intolerant?” “Is it an allerg?”. My kids can’t eat meat, grains, dairy, beans or anything with high protein. It is a crazy life but again, knowing how to cope is the biggest step.

  36. Aww, love, I totally understand this. I have been a diagnosed Celiac for almost 10 years. I was so sick in high school,it such a relief to heal. My mom is gluten intolerant and has allergies. My brother has colitis. My best recommendation is to read labels. All the time. It is a pain in the butt but you never know when a company has reformulated something. Also, the new labelling laws make it so much easier. As well, there are a bunch of nice products available these days. It does get easier! Plus you get to try out new gluten free foods like quinoa 🙂
    I have a website about this http://www.ashleighgfg.blogspot.ca

  37. I agree. Celiac was once ocnsidered a chlodhiod disease. Studies have shown that most often, chidren who were diagnosed with Celiac, grow up to be adults with unexplained symptoms. All Celiac’s know that this is one of the most difficult dignoses to make. Many doctors still treat the individual symptoms, without treating the underlying cause, which is the very food we consume to stay alive. I have found that, in retrospect, i have had symptoms all my life. Having been misdiagnosed, it took my Uncle, then my Grandfather almost dying, and being dignosed with Celiac sprue to bring the disease to my attention. Seems my family was full of undiagnosed Celiacs, and we have all benefitted from a gluten free diet.

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