Imagine. Imagine that you could not eating ANYTHING with wheat in it, or on it, without getting sick. ZERO regular bread, pastries, cookies or bagels. No regular pasta. Or crackers. Or cupcakes. Or breakfast cereal. Nothing breaded, even fish. Nothing made with hidden gluten, like soy sauce.
You sit down at a restaurant with friends or family and peruse the 16-page menu. You identify a couple of salads that look safe, provided the chef remembers to leave off the croutons, as you’ll request. But you must’ve eaten chicken-ceasar-salad-hold-the-croutons about 16 times in the last month, and you just can’t take it anymore!
So you ask the waitress if she can please request a cheeseburger-no-bun. She bubbles over about how gluten-free-ready the place is. Yeah, whatever. Heard that before.
After you order, the manager comes over with a solicitous smile and gushes about how this establishment is “more than happy” to accommodate “special diets.” Fine. But people are staring, so you fix your eyes on your napkin and nod politely.
When the food finally comes, the kids get their plates of Mac-N-Cheese, a lot of burgers show up in enormous bread rolls — and TaDa! You are presented with a cheeseburger melted mouth-wateringly between two slices of toasted sourdough bread. See? No bun! Just for you!
AAARRRRGGHHH!
You explain again that you are allergic to wheat, and that bread=bun. You get a huge apology and a half-hour wait while they make you a fresh burger. By the time it arrives, everyone else at the table is long finished eating and you are sweating like an NFL pro due to that bolus you took when you thought the food was ready.
Everyone is apologetic. So apologetic. Then chocolate cake is ordered.
– – –
This is life without gluten, for a grown-up with type 1 diabetes. Two parts inconvenience, two parts frustration, and one part what-the-hell-can-I-eat-here? Yes, I know the math doesn’t add up. That’s because it feels over the top, most of the time.
The month of May has been declared National Celiac Awareness Month, which is great. I have just one admonishment: I know that eating gluten-free is trendy right now, but please don’t take the celiac thing lightly! I wouldn’t wish it on anyone, so don’t impose gluten-free restrictions on yourself unless you’re sure.
In case you are having cramps, bloating and/or other GI problems after eating, or experiencing hives like me, and wondering if you are actually gluten-intolerant: Here’s a rundown of the lab tests used to determine celiac. The most decisive of them is a biopsy test — highly unpleasant, but still the only way to get a definitive diagnosis.
Symptoms of true celiac are gastrointestinal complaints, anemia, fatigue, headaches, and joint pain. How sad to think that just a few decades ago, kids who had it were considered just plain “sickly” and withered away. Today we know the treatment is “so simple” — no wheat! For this I am grateful, despite the moaning and groaning above.
What’s the key difference between celiac disease and wheat allergy? According to the American Celiac Disease Alliance, celiac disease is an autoimmune condition, in which the body’s immune system attacks intestinal tissue in response to eating gluten. Because of this, people with celiac disease are at risk for malabsorption of food, causing nutritional deficiencies that can lead to conditions like iron deficiency anemia, osteopenia, and osteoporosis. People with wheat allergy (or just “gluten-intolerance”) usually do not have severe intestinal damage, and therefore are not at risk for these conditions.
A few more GF tidbits from my end:
- Celiac disease is a cause with a community, just like diabetes. Try looking for local events like this Catwalk for Celiac taking place tomorrow in New Jersey.
- This Gluten-Free Travel Site has a pretty comprehensive list of resources, including the three leading national advocacy organizations for celiac disease.
- A new online community for celiac was recently launched by our company, Alliance Health Networks: Check out CeliacConnect.com.
- One really good book on the topic is Celiac Disease: A Hidden Epidemic, by Peter Green and Rory Jones.
- And there’s always the “For Dummies” series of books, which are usually a great start on any unfamiliar subject.
I do my shopping here: Glutenfreemall.net.
My general scorecard on taste:
GF crackers – pretty good
GF bread – do not buy the pre-made kind. Icky. Buy the mixes and bake it yourself instead. Cut it thick, or there’s no way it can withstand the toaster. It is crumbly, I tell you!
GF pasta – tends to be mealy or soggy. Best is Quinoa.
GF granola – really good!
There you have it. Life without gluten.
Any GF friends have something to add?
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My sympathy/empathy goes out to you and those who have celiac and also to those who have a wheat allergy which can cause anaphylaxis. My daughter is very allergic to two foods that can cause anaphylaxis, which is life threatening so we haven’t been to a restaurant now in 2 years (because egg and peanut residues are everywhere and little kids can’t keep their fingers from their mouths). It sucks and I can’t imagine going home and still being so restricted from food choices! Celiac and deadly food allergies…It’s one of those things that doesn’t sound so bad until you have to live with it.
We don’t have gluten intolerance in our family, but I frequently prepare gluten free baked goods and snacks because they tend to be much lower carbs than their white/wheat flour counterparts. A great website is http://elanaspantry.com for anyone looking for some gluten free recipe ideas.
Thanks for raising awareness about this issue, and for emphasizing that gluten-free isn’t a ‘trend,’ it’s an autoimmune disorder, too!
In the blogosphere, there’s the impeccably curated, heartfelt, and beautifully photographed Gluten Free Girl and the Chef: http://glutenfreegirl.com/
It’s a wonderful place to start for anyone looking to free themselves through food and love.
The Gluten Free Ratio Rally posts (first Wednesday of each moth) are also a great resource for more gluten-free blogs.
Thanks for the GF links. While I don’t need GF myself, its prevalence in the T1 community (which is the majority of the diabetes advocate/activist community in this area) has spurred my interest in learning to prepare “safe” foods for our occasional potluck activities.
I imagine that celiac is less fun than being vegetarian and unable to eat bell peppers. I’ve taken to joking that my food issues are complicated enough to warrant their own Iron Chef special.
@Moriticia – Ooh, I can’t tolerate Bell Peppers either. Seriously, we could write a novel on “what we can’t eat.”
We’re in a tough spot. Our 19 YO daughter has been diagnosed with celiac, fro ma routine antibody screening now being given to all the T1s at her Endo (confirmed with biopsy), but she has absolutely no symptoms, and never has. The doctors won’t tell us anything about exactly what the ‘increased’ risks are for intestinal cancers if she eats gluten. She’s in college and traveling overseas this summer, but we’re in a quandary about what she should do while she’s gone.
It would be easier for her to decide if she did actually have symptoms.
Brent, If by overseas you mean Europe, your daughter should be fine. European countries are way better at dealing with celiac disease than we are here in the US. Gluten free food is well marked and easy to find. It’s often available in drug stores. Do a Google search on “gluten free in Europe” and you’ll find a lot of resources.
Before I got online and found other diabetics, I had no idea there was a correlation between D and celiac, nor did I know anything about celiac. I’m thankful that I don’t have it, although I assume having T1 puts me at risk (??) so I pretty much just cross my fingers that it never appears since I know it can develop whenever. Reading about others’ experiences with it has been an education though.
Totally disagree with the store bought breads! Both RUDI’S and UDI’S are fantastic — and since they’re pres-sliced, the carbs are consistent which is helpful for insulin dosing.
Quinoa = YUM!
Great post
I agree with Wendy that Udi’s make great products! As for pasta the 2 that I have found to be excellent are Bionatrae and Tinkyada.
I have found corn pasta to be fabulous! Not sure what the name of the one I use is, but it comes in a green bag and they actually sell it at the normal grocery store.
Also, another great post about diabetes and celiac: http://sixuntilme.com/blog2/2011/05/guest_post_alissa_carberry.html#comments
@Mary C,
Thanks for your reply, and we’ve looked into those resources. I guess what I meant about our quandary is that we don’t know how hard to push for her to be compliant with a Gluten Free diet when she doesn’t have any symptoms, and the doctors are non-committal about whether it will cause any more damage in the long term to be non-compliant. It’s so different with T1, there’s always a negative result from being non-compliant there.
Thanks again,
Brent
My 14 year old son has celiac along with type 1 diabetes. He has had it for over 7 years nows and I think he has has gotten use to the restaurant routine. Finding the food he likes has been getting better since more and more stores are starting to stock gluten free food. We also have a local gluten free bakery.
I would recommend a search for a local gluten free bakery.
Brian
Thank you for this post. The more who are aware of how it is to live with celiac and type 1, hopefully the more understand how frustrating it truly is. Not to say we can’t lead a normal life and actually eat a lot healthier than our counterparts without celiac, the huge change in lifestyle while living in a society that doesn’t understand makes it most difficult. For instance – we know not to serve peanuts on a plane, but still they serve crackers without anything for a type 1. And with restrictions on liquids and the like, what to do with a low? In the end you have to pack smart and make sure you have things with you because you never know if you’ll be low without gluten-free options around you.
I was diagnosed with celiac almost 9 years ago in my college years. I found it extremely unfair my friends could order a late night pizza during a study session and I had nothing. These were the days when NO ONE had heard about the disease and going out was a death trap – forget asking if they know what gluten is, and don’t even imagine they might have a clean grill to cook your food on. Thus there are 2 sides to the recent trend in gluten awareness – there are more products available (which are significantly more delicious than the first iterations and restaurants do have options now or at least know what gluten is, but on the same side people don’t take it seriously as you say. I can’t tell you how many times someone might say – but how severe is it? It’s pretty darn severe! Seriously getting asked that question makes me want to scream – -but if people just think maybe they have celiac, then they are contributing to the idea that this is not a huge dietary issue.
Finally, I might mention how hard it is to have 2 diseases with a heavy focus on food. The counting carbs (and archaic notion that type 1s have to follow a “diabetic diet” and can’t have sugar…) paired with needing to treat lows, being chastised for highs because of what you eat, then trying to find gluten free options can cause quite an imposition. It’s frustrating to me (even though I know they are saying so in kindness) when others focus on my food – oh can you eat that? or there must be something here that is gluten free? or they don’t recognize it at all and bring cakes to office parties and no option for you but to sit around and everyone say “oh, that really sucks.” I both want them to be aware but not make a big deal of it just as I don’t want everyone checking if I’ve taken my insulin while still having them realize that I need a break when I have a low.
Gluten free isn’t the worst thing ever, Type 1 isn’t either. Together they are very difficult.