Today is International Celiac Awareness Day

 

In honour of the first ever International Celiac Awareness Day (refer to the page set up by the Association of European Celiac Societies at http://www.aoecs.org/) I’ve decided to write about my experience with the disease so far. Please share your own story in the comment section below.

Almost two years ago I found out I have celiac disease. Since then, everything has changed.

For 47 years and 45 days, minus however long my mother fed me baby formula, I have been eating wheat, rye, barley, millet and other gluten-containing substances. The lining of my small intestine was damaged and many nutrients were not absorbed.

This disease may or might not be behind the stomach pains and leg aches that plagued me as a teenager, the days lost due to migraines (see http://traceyarial.com/blog/migraine-sufferers-should-be-tested-for-celiac-disease/), and a miscarriage between my two children. It definitely caused heavy periods, borderline anemia, four damaged molars and tooth enamel literally pulling away from some of my teeth.

Given that this is a genetic disorder and my dad doesn’t have it, I assume it caused my mothers’ life-long digestive difficulties, her extreme menopause symptoms and perhaps even the non-Hodgkin’s lymphoma that killed her when she was only 67 years old.

Eliminating gluten from my diet is clearly important for these reasons, but I’ve noticed other positive effects too. An uncomfortable bloating feeling I thought was normal has disappeared, as has a constant feeling of having to urinate. My doctor says my iron levels are higher than he’s ever seen them. The hot flashes and headaches linked to menopause are significantly less severe than they were, although that may be timing coincidence.

Given all those ramifications, it’s clear that knowing I have celiac disease is significantly better than continuing to damage my health by eating gluten. Despite this, there are many daily inconveniences.

I’m now 20 pounds too heavy and few of my clothes fit. Despite exercise and attempting to relearn how to eat, I keep getting heavier. Most of the weight is settling on my hips and stomach, a bad sign for someone whose family history includes heart disease and diabetes.

Worse than that is my frequent discomfort around food.

It took a while, but my family consumes fewer wheat products at home now, and that limits arguments. I can freely use the butter dish, the bread board, the knife, the pizza pallets and everything else. Other family members still enjoy bagels and bread, but they store them sealed in the freezer and carefully use a separate knife and cutting board for them. It was evident how far we had come the other day, when my daughter carefully put the dishcloth and towel in the wash after she contaminated it with a gluten-containing product.

We’ve also replaced the toaster for a four-slice one and my husband made a wonderful little steel cap to make sure that no one accidentally uses my side. It also prevents crumbs from wheat products from falling into it.

Everyone is working hard to protect my health.

We all still find the transition frustrating though. Pizza night no longer feels as joyful as it once did. Everyone has switched to gluten-free crust to avoid flour flying around, but not everyone likes it. Although family members are careful, mistakes still happen and I’m not particularly pleasant when I have to don rubber gloves to clean wheat bread crumbs off the counter or carry beer bottles to the basement. Every time I have to do this, I feel unloved.

Family and friends often go out of their way to make gluten-free dinners, but it’s clear they still find it uncomfortable. It’s even worse when hosts or hostesses feel bad either because they forgot or because their efforts didn’t work because they used some food product that is contaminated with wheat and they didn’t think to check the label. As one friend said, “who would imagine that mustard has wheat in it?”

Going out for dinner is difficult too. There aren’t many restaurants that provide gluten-free food.  The ones that do, like Chez Chose (http://traceyarial.com/blog/chezchose/) and Mozza (http://traceyarial.com/blog/enoteca-mozza/), work very hard, but even they can’t guarantee 100% gluten-free conditions.

Conferences and business lunches have been horrifying, not just because I have to take care to avoid wheat, rye and barley but occasionally another participant bristles at my request. After hosts caringly provided gluten-free options at one such event, another workplace participant harped at me about how unrealistic I am. She also rhymed off all sorts of things I should do, including treating myself slowly with gluten so that I wouldn’t get symptoms. Why do strangers feel the need to advise people on matters they know little about?

I’m afraid that the journey I’ve gone through may have made me equally annoying. I see gluten in everything and possible signs of gluten intolerance everywhere. I’m always asking people if they’ve been tested and I’ve been berating my children and my spouse about getting tested, although their doctor doesn’t think it’s necessary. Just ask me the tiniest question and I go into details about the disease that are just not polite.

Social discomfort aside, I’m also finding it difficult to figure out how to eat to avoid cravings, satisfy hunger and avoid over-eating. I get full faster, but it takes longer to actually feel it. It feels like I’m living in someone else’s body.

My doctor says my thyroid works well now that gluten has been eliminated but I’ll ask him to test it again when I next see him. He also told me to add folic acid to my diet, which I’ve done.

Avoiding dairy and taking iodine drops, like William Davis mentions in http://www.wheatbellyblog.com/2011/10/i-eliminated-wheat-and-i-didnt-lose-weight/ hasn’t helped yet, but it might, I suppose.

Perhaps even more protein needs to be added to my diet, as my nutritionist suggested?

I’ve also decided to try some of the tips that John Libonati provides in his article http://glutenfreeworks.com/blog/2010/01/21/weight-gain-in-celiac-disease-how-to-lose-weight-on-the-gluten-free-diet/#.UZTvNbWG1JQ.

He says to:

  • choose foods that contain glutamine – eggs, fish, meats, cabbage, beets, beans, spinach and parsley to satisfy gluten cravings;
  • take probiotics; and
  • try drinking a glass of water with 1 tbsp flaxseed meal before going to bed.

So these are my next steps. I’ll let you know how it goes.

 

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Tracey Arial

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Tracey Arial

Tracey Arial helps Canadians grow with notable nonfiction and urban agriculture.

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  • Lisa MacColl says:

    My Father in Law and Brother in Law are both severe celiac. My husband has finally admitted he is too, but he’s not as vigilant as he should be. I’m anaphylactic to garlic. I know from food allergies.

    Try Quinoa. Prepare it with a little honey in the water. It’s great with fruit at breakfast, makes a nice summer lunch and it has protein.

    We like the Tinkadya noodles the best. Kingsmill makes a really good mix for pancakes and Udi is the best bread, although my husband doesn’t mind the one at Costco.

    Tapioca or arrowroot starch work best for thickening if you are corn intolerant. Not every celiac is but Dave’s family are.

    I make cheesecake by grinding up GF rice Krispies. When you add butter, sugar it bakes the same as Graham crackers (and doesn’t go soggy)

    The Gluten Free Gourmet series of cookbooks have great tasting recipes that are worth the effort. You should be able to find them in the public library.

    El Peto delivers anywhere in Canada, but skip their bread. Chew cardboard instead.

    And email if you want other hints. Allergysense.com was a good resource as well.

    And HUGS. Food allergies are no fun.

    • Tracey Arial says:

      Thanks for all the tips, Lisa. Love the idea of rice krispie Graham cracker crust. It sounds awesome. Tapioca, brown rice flour and buckwheat are now staples in our house along with tapioca flour. I’m just finding it difficult to read my body given that it isn’t acting the way it used to act. I’m hoping that once I’m fully healed things will settle down and I’ll be able to figure out how to eat properly and re-establish a healthy weight. Thanks for the encouragement. The Celiac Association of Canada is having their national conference in Toronto the weekend after Magnet. I’m attending the food market on Friday night, so I’ll be able to try some of those products I suspect. Let me know if you need me to get anything for you. Hugs back, T.

  • Marijke says:

    Interesting post Tracey. Celiac disease is not well understood. There was a time when my dr thought I might have CD. I also believe that those with CD are not helped by the fad-diet people who choose to avoid gluten because celebs like Gwenyth Paltrow say that they will lose weight. I’m not talking about people who are gluten intolerant, as this is also a legitimate issue, but people who pick up on the diet as they did the low carb, and others. The problem is that in this case, since it’s a choice, other people see the fad-ists slip and consume gluten when they want, so the observers get it in their head that anyone who is gluten-free could eat gluten if they wanted to.

    Another problem is that some people who don’t have CD say they do and again, people may see them eat gluten, causing them to question anyone who says they have CD. Honestly, it’s not unlike people who have severe food allergies. Many are asked “how do you know you’re really allergic to it? Why don’t you do gradual exposure?” and so on.

    I just wrote a piece on this, due out next month in the US Costco Connection. If you want the name of the dietitian I spoke with, well-known in the field, I’ll give you her name and contact info.

    I didn’t realize that you have CD and I do understand how difficult it is. I will not be one of those nay-sayers at MagNet and I will keep my eyes and ears open for more gluten-safe places in Montreal.

    • Tracey Arial says:

      Can’t wait to see your article next month, Marijke and I definitely would appreciate the support and info. I think it’s hilarious that we may actually be able to catch up at Magnet, too:) Isn’t that always the way?

  • Kathe Lieber says:

    Good for you, Tracey, on listening to your body and sticking to your guns. There will always be idiots out there who feel free to tell others what to do and what not to do, alas. I agree with Marijke that the waters are being muddied (gee, I’m using lots of clichés in this posting) by people who are jumping on the bandwagon even though it’s really not a problem for them. I have a friend who has eliminated gluten, dairy and sugar from her diet voluntarily – she’s thin and has no problems with them. All it’s accomplished is to irritate the hell out of friends who want to have dinner with her….

    Anyway, I digress, as usual. Just wanted to send my moral support. This is a transition period for you, and the important thing is that you’ll feel much better without gluten in your life. There are so many GF products out there, as Lisa points out, that it’s much easier than it used to be to avoid gluten. Good luck!

    • Tracey Arial says:

      Thanks for the moral support, Kathe. It is irritating to go out to dinner with celiac disease, although it seems to be getting easier as more people get on the bandwagon. Why is it always two steps forward, one back?

  • Funny you should mention the gluten-free bandwagon, Kathe, I wrote about it in my post last Monday, not realizing that yesterday was International Celiac Awareness Day…http://janelangille.com/is-the-gluten-free-diet-just-a-fad/

    There is a lot of misinformation out there, as you say, muddying the waters, but people who have celiac disease or bone-fide gluten sensitivity have their work cut out for them to manage avoiding foods containing gluten while getting enough nutrients elsewhere. I will give some of Lisa’s recommendations a try too.

    Another food suggestion to help with cravings: TruRoots sprouted rice and quinoa blend (Costco) – it’s gluten-free and yummy!

    Jane

    • Tracey Arial says:

      Great article Jane. It really is tough to avoid gluten, although I’m not at all upset about the latest health trend because it means that more gluten-free foods are available in restaurants. I love that TruRoots product too. My favourite food so far are popovers made with rice and buckwheat flour plus algar gum. Yum.

  • Doreen Pendgracs says:

    Hi Tracey. I didn’t know you have celiac’s disease. It’s amazing how common it is becoming. I feel for you. Having no allergies or sensitivities, I can’t imagine what it’s like to have to deal with the efforts you must now go thru. Looking forward to seeing you soon!

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