Category Archives: Important Celiac issues

Is Gluten-Free Healthier If I Don’t Have Celiac?

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I’m asked this question regularly. I don’t seem to run into too many people who go gluten-free just for kicks, but they often know someone who’s trying it out. My answer is something along the lines of “sorta…..depending on how you go about doing it.” There are two basic ways to go gluten-free.

1- Eat everything you usually eat, but in the gluten-free version. Gluten-free cupcakes, pancakes, muffins, baked goods, and even most processed goods aren’t much “healthier.” In fact, you’re usually worse off. Gluten is the protein that binds bready things together. To make up for it, especially in processed goods, there’s a LOT more fat. Butter, oil, sour cream, etc.

For example, take these Udi’s Snicker Doodle cookies. Scroll down to the nutrition facts. Serving size: 2 cookies (and they’re by no means big). Fat content: 8 grams. Yep. The way to being constipated and overweight is before you.

Now — don’t get me wrong. Udi’s is something of a pioneer when it comes to pre-packaged food. I understand that people have lives and kids and lots of commitments, and not a lot of time to cook. They’ve painstakingly made some good gluten-free breads and hamburger buns and donuts and tortillas and granola, and the list goes on. They help people — especially newly-diagnosed Celiacs and gluten intolerant folks — feel like they’re normal. That in and of itself is worth the cost.

2- Eat the things that are naturally gluten-free. Vegetables. Fruits. Meat. Cheese. Grains. Fish. If going gluten-free (or “going gluten-free” if you’re not Celiac) means you essentially eliminate as many processed, pre-packaged food products as possible in favor of the above, well, that tends to be pretty good general nutrition advice and is likely to benefit you quite a lot.

That being said, some people who start being gluten-free because it’s “cool” end up feeling somewhat transformed. Like the way Celiacs feel when they finally are diagnosed and go gluten-free. Gluten intolerance is a real thing. However, just eliminating gluten for the “fun” of it isn’t inherently healthier, and it’s a lot harder to get enough fiber. It’s also a LOT more expensive — especially if you go with route #1. Would I be gluten-free if I wasn’t diagnosed with Celiac? I can explain in two words: H*** no.

Identity Crisis, or “Real” Food vs. “Weird” Food

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This last year has been crazy. I couldn’t have predicted this. At all.

February 2012: “My position was eliminated” after 3.5 years of hard work. We went up to Washington State for three weeks to see if being at sea level in a cloudy climate helps my husband’s migraines. Found out that it helps his head about 40%. It’s the largest difference we’ve found so far. We also put our house up on the market.

March 2012: Moved back to Utah to live with family. I thought this would last a few months, but we’re still here.

April 2012: I got a part-time job teaching English online to students (mostly children) in Spanish-speaking countries. I LOVE IT.

November 2012: My husband’s “position was eliminated.” We also got an offer on our house! We’re in the short sale process, so it’s taking a long time. It’s still going on. We’re hoping to close by the end of February 2013. My husband is looking hard for work, but nothing has worked out yet.

As I’m sure you can imagine, having my life turned upside down means that I really have to re-evaluate who I am and what my values are. It’s been a long and arduous process, and it’s not over yet! This blog has undergone some changes, too! It initially started out as a way for my extended family to understand my Celiac and food allergies, became an attempt to have a gluten-free wedding planning business, then to product reviews, then to….jam.

As I’ve been figuring myself out and what I want to do with this blog, I’ve realized that I no longer let my life revolve around gluten. I am still 100% gluten-free. As I was trying to build a business, though, I just became overwhelmed by the hard-core gluten-free and allergy folks.

3 1/2 years after diagnosis, I really don’t spend a lot of brain power on gluten-free. Seriously. After the hours it took to go grocery shopping the first couple of times, I never thought eating gluten-free would be intuitive, and yet — here I am. It’s so intuitive that I occasionally FORGET to tell servers at restaurants that I have to eat gluten-free. Crazy, right?

Then I thought about what I could do with this blog that those hard-core folks out there can’t provide. They are recipe-creating masters! They have every bit of advice that a newly-diagnosed Celiac or gluten intolerant person could ever dream of needing. They’re activists, always fighting the good fight against gluten and allergy ignorance. They’re writers. I felt like there wasn’t anything I could contribute. I don’t have kids that need dinner 5 minutes ago. I’m not even working full-time. I don’t eat organic, well, pretty much anything.

Then I realized: I can promote real food. For me, real food is peace. It’s love. It’s life. It’s intertwined with life. It’s part of a balance. It doesn’t define me, just like I’m not defined by any single aspect of my life. It’s a big part of my identity, sure, but it’s not everything.

So — real food. Tonight, I made an almond bundt cake.

Almond bundt cake

Almond bundt cake

It consists of almond flour, brown rice flour, baking soda, salt, olive oil, water, agave nectar and (pure) maple syrup. That’s it. That’s all. Just this week, I’ve made turkey piccata, twice-baked sweet potatoes, pad thai, a “south american” pork dish involving quinoa, coconut milk, turmeric, ginger, cloves, and a tomato-apricot chutney. (I’m missing a few ingredients because I’m listing them off the top of my head, but they’re all real ingredients, too.) Tonight was turkey chili with rice. Pumpkin cookies. Chocolate chip cookies. Ginger wheels (softer than snaps). A pear spice cake made with teff (and to DIE for. I would have made that tonight instead of the almond bundt cake, but I didn’t have any fresh, ripe pears).

For me, real food is worth it. I don’t spend the extra money on organic stuff (unless that’s the only way it comes, like some of the flours). I just make real food with real ingredients. I haven’t been to cooking school, and I’m definitely not a photographer. I just like to cook, and document what I cook, and work it into my life. Even though I never could have anticipated that we’d be living with my parents at this point in life, I LOVE cooking for all of us.

I am grateful for having been diagnosed with Celiac Disease. Yes. I AM GRATEFUL. Without the diagnosis, I never would have discovered quinoa. Or almond flour. Or coconut kefir. Or teff. Or how much FUN it is to make JAM! Or the best pumpkin cookies on earth that also happen to be gluten-free and vegan. Or that pancakes and waffles are not the only uses for maple syrup! Or agave nectar. Or tamari. YUM.

Are almond, teff, brown rice, sorghum, tapioca, garbanzo, rice, amaranth, etc. etc. etc. “weird” flours compared to just boring old flour? Yes. Are they nutritious? Most of them. :)  Are they healthy? Yes! Are they real? Absolutely. Run a Google search on teff flour. Run a Google search on quinoa. Try making a stir-fry, but instead of serving it with rice, serve it with quinoa. IT’S SO GOOD. Run a Google search on tamari. It has a darker, richer flavor than soy sauce, and I LOVE IT. Even if I could, I would never go back to regular ol’ soy sauce.

Thanks for reading, thanks for sticking with me, and if you need any help, please let me know! I’m only an e-mail away. I’m happy to help with shopping or cookbook recommendations or anything at all. cinderellaspear (at) gmail.com. If you’d like to join me on Facebook or Instagram, send me an e-mail. I’m not-so-inclined to add people I don’t know when anybody can read my blog.

Also, if there’s anything you’d like me to cover on the blog, let me know!

Thanks for reading,

Cristina

Gluten and Mormons (LDS) Part 1: Young Women Camp

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This seems like as good a place to start as any, since LDS Young Women Camp (commonly called Girls’ Camp) is what spurred this series in the first place.

I feel like I should disclose something here: I don’t particularly care for Girls’ Camp. I haven’t liked camping since I was pretty small, and Girls’ Camp is no exception. In that rough first year of diagnosis, the silver lining that kept me going is that I would never have to go to Girls’ Camp again! Now that I have many other allergies on top of gluten, I would just decline going. I can’t imagine trying to deal with all of my food issues while camping. Other people, though, love camping, and love Girls’ Camp, and aren’t about to let a silly thing like Celiac keep them from going. More power to them, I say!

My friend Joy e-mailed me, asking about a girl who will be attending with her this year. For one of the meals, they’re planning to do a stir-fry, and Joy hasn’t had any luck finding a gluten-free teriyaki sauce.

My initial response was letting her know about the existence of San-J gluten-free tamari. I told her that I know of a very simple teriyaki sauce recipe (seriously awesome, by the way), and that she could make some in advance, and take it up to camp. I mentioned this to my mom, who vouched for Seal Sama brand gluten-free Teriyaki Sauce.

As I was thinking about it some more, I remembered that most of the cooking at Girls’ Camp was done in dutch ovens. Dutch ovens aren’t stuck in the dishwasher with soap. They’re cleaned with hot water and oil. After this, my brain just spun out into all the cross-contact dangers with camping.

What is gluten?

Gluten is a protein in wheat, barley and rye. It’s in flour, bread, pancakes, and any other baked good that uses flour. Gluten can be very, very sneaky. Do a Google search for “hidden sources of gluten,” and you will find lots of good information for how to make sure none of the products you take have it. Gluten is even used as a thickener in sauces and dressings, so really be careful there!

How do I know whether she’ll be able to eat what we’re planning?

Talk with the girl and her mom before even solidifying the menu, and run all the meals by them. They will have some helpful tips, and may even have some spare ingredients you can take with you.

I’ve heard about cross-contamination or cross-contact. What is it, and is it a big deal?

Yes. It’s a big deal. Cross-contamination (or -contact, they’re used interchangeably) is when something that touches gluten touches something else that is supposed to be gluten-free.

For example: If you wash a dish that had pie crust in it, and use that same cloth or sponge to wash out the pan for cooking for the gluten-free girl, it will be contaminated, and there will be traces of gluten left in that pan the next time you use it to cook for her, and she could get sick.

Another example: If you drain regular pasta in a colander, and use that same colander to drain the gluten-free pasta, the gluten-free pasta will have traces of gluten from the pasta that just went through it, will be contaminated, and the girl will get sick.

A third example: If you have pots of stuff cooking on the same stove, and one of them is gluten-free and the rest aren’t and you use the same spoon to stir all of them, the gluten-free pot will be contaminated and the girl will get sick.

The last example: If you use a knife and cutting board to slice some bread for everyone, and then use the same cutting board and a different knife to cut some fruit up for the girl, the crumbs left on the cutting board (or the knife, if you use the same knife), will contaminate the fruit with traces of gluten, and the girl will get sick.

What can I do to avoid some of these pitfalls?

For Leaders:

If you can, work with the girl and her family so that everyone feels as comfortable as possible. Clear the menu with them first, and give them a chance to weigh in. They may even have some ingredients you can take with you.

Offer to put the set of pans and utensils and you will need for this girl in the dishwasher, and ONLY use them for her. Have a sponge or washing rag that is ONLY for these dishes. The safest way to handle this may be that the same leader (and only that leader) cooks and does the dishes for this person, for the whole week, so people don’t get confused. (Make sure this person and the girl in question have a good relationship!) If your circumstances allow, have a completely separate cooking area.

If your dutch oven has ever contained gluten, don’t use it for gluten-free anything. It’s too risky.

If your stake or ward has a rule about people not bringing their own snacks, please allow this girl to be an exception. This will significantly reduce your stress and their stress. It’s a win-win situation.

Make sure ALL the adult and youth leaders are aware of the situation, so everyone can keep an eye out.

Other than that, the biggest thing I can think of is “don’t make a big deal out of it.” It’s new to you, and it may be a lot more effort than you’re used to, but it’s not going to be a big deal to her, and she’ll just want to fit in and feel as normal as possible.

For Girls (and their parents):

Talk with the leaders in charge, and the leaders over food. Talk to everyone, so they know what’s going on. You may feel self-conscious (I almost always do), but it’s really not worth getting glutened. Be proactive. People mean well, but that doesn’t mean they know what they’re doing.

If you’re not comfortable with going, don’t go! Who wants to spend a week in the wilderness glutened, away from your family and doctors? Not me.

Take snacks, even if it’s “against the rules.” Always (always, always) make sure you have something you know you can safely eat, just in case.

Thank your leaders if they’re willing to attempt working on this with you. They’re going to be nervous about making you sick, so make sure you give them your appreciation for their work.

Be willing to help with your meals and the clean up. They’ll appreciate the help, and then you can keep an eye on things to make sure they stay gluten-free.

Enjoy Girls’ Camp!

If you’ve been to Girls’ Camp gluten-free, I’d love to hear your stories!

Religion, community, food and food issues

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This post has been floating in my brain for a while now. More than a week. I wasn’t sure how to write it.

When I group religion, community and food together, I’m not talking about the Sacrament or Communion or what-have-you, though I could write a post on those.

Here, I’m referring to gathering as a congregation for parties, or dinners or refreshments or what-have-you.

Having food at events seems to have two main (and related) purposes: Encouraging people to come, and helping them get to know each other, which strengthens the sense of community. Food seems to be a common denominator.

This is all well and good, but what about people like me, who have Celiac Disease and food allergies? I just understand, now, that I can’t have anything at a church function. I eat before I go, I bring food with me, or I don’t go at all. If I can’t eat the food, and the activity itself isn’t appealing, why should I (or others in similar situations) attend? What can church leaders do to help?

Church leaders of any denomination can be sensitive to the needs of the people in question. I understand that it’s a pain. I really, really do. If you could get those people to come, though, wouldn’t it be worth it? (Note: Please don’t use food as a guilt trip, and respect those who have these issues if they’re not comfortable.) If possible, involve the people with food issues in the preparation of the food. That way, they can feel safe, and the people in charge will feel less intimidated and less afraid of making someone sick. Call in advance and ask if there are pre-packaged foods that are easy to find.

I don’t talk about it much here, but I’m a member of The Church of Jesus Christ of Latter-day Saints. My parents’ former home teacher (who is now a bishop of a singles ward) brought us some homemade cranberry salsa as a Christmas neighbor gift. He also brought a box of Wheat Thins for the gluten-eaters, and a box of the Blue Diamond Almond Nut-Thins for the Celiac folks so all could enjoy the salsa (after scooping it out on individual plates). It was so amazingly thoughtful, and we gluten-free-ers were touched.

A small act of thoughtfulness like that is sometimes all it takes.

Making Holidays and Events More Enjoyable with Food Issues

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October, November and December are all about events. October is about Halloween parties, November has the big (and sometimes ominous) Thanksgiving, and December is about Christmas, Hanukkah, Kwanzaa, and others. Parties galore!

For the last few years around Christmas, I’ve struggled. With Celiac Disease and other food allergies (especially milk and corn!), most holiday goodies are on my “bad” list. Bowls of candy set around the room? Nope. If they don’t have milk, they have corn syrup. (Candy canes, anyone?) Corn chips and salsa? Nope. Most baked goods (that I’m not bringing myself) have gluten in them. I’m having a tough time coming up with things to list here since I’m so used to not having them.

When I was diagnosed with Celiac Disease, I was self-conscious about letting people cook or bake for me, for two main reasons. 1- It’s very difficult to do gluten-free cooking and baking correctly, without any cross contact and 2- I hate putting people out. Ever since the other food allergies made themselves known, I’ve just assumed that any party I go to won’t be able to accommodate me, so I eat beforehand. It’s habit, now.

The holidays are especially difficult because it seems that all of a sudden, people are very emotionally tied to their food! People usually have at least one dish, without which, it wouldn’t be Christmas or Thanksgiving or what-have-you. It also can’t be just any rendition of the dish, it has to be Grandma’s recipe. (This is true for my family and pumpkin pie at Thanksgiving.) It also seems to suddenly be that if a food is eaten, then the maker of the dish understands that you like it, and that you appreciate their efforts. Not eating someone’s dish is just not okay!

To help everyone understand each other a little better, I’ve come up with a few suggestions. The level to which these work is dependent on how well the host and guest know each other, so please adapt accordingly.

* Guest: Please don’t be offended if your host doesn’t accommodate your food issues. If they haven’t had to deal with any, they might be intimidated at the thought of attempting something and then having you get sick anyway. If they’re going to try, and you’re comfortable with their efforts, consider it a gift.

* Host: If the guest says they’ll eat beforehand, please don’t be offended. They’re looking out for their health, not condemning everything you cook or will have at the event. Take it as a BIG compliment that they’re willing to come, even though they won’t be able to eat anything.

* Guest: Don’t try something you know isn’t safe for you just because you’re feeling pressured to do so. Getting sick isn’t worth it. Just politely decline and mention you have food allergies. In my experience, people are pretty understanding.

* Host: If your guest is more comfortable eating beforehand, don’t force the issue. It’s not code for “please try harder.” It usually means that they don’t want to put you out, and would rather make food a non-issue.

* Guest: Understand that your host and the other guests mean well, even if you’re uncomfortable. Most people care very much, but aren’t used to dealing with food issues, and may not be aware if they’re saying something insensitive. It’s also been my experience that most people are seeking to understand something they’re unfamiliar with. If you’re comfortable, be willing to talk about your food issues. We can increase understanding in others if we are willing to talk about food in a calm and positive way.

In this season of holidays, parties and events, may we all be more considerate and deferential to each other. May we find ways to love each other and to appreciate the people who care for us. May we especially be kinder to ourselves.

Dear Caterers and Restaurants:

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As you may know, more and more people are being diagnosed with Celiac Disease, which requires them to eat gluten-free, and food allergies are also becoming more prevalent. Having Celiac Disease and allergies to beef, chicken, eggs, milk, bananas, carrots and corn myself, this is essentially all I think about.

If you want your customers to flip out (in a good way), I can help you with that.

  • Good: Washing all dishes and pans to be used in the dishwasher, thoroughly.
  • Awesome: Having a set of dishes and pans that never touch gluten — that are just for your gluten-free guests.
  • Good: Having your gluten-free menu and/or food allergy accommodations on your website and easy to find.
  • Awesome: On your site, writing about the specific techniques you use to keep cross-contamination/contact to a minimum.
  • Good: Having the server repeat the special order back to the person who ordered it to make sure they got it right.
  • Awesome: Having the manager or head chef speak to the diner when a gluten-free or food-allergy order comes back. (This will earn you serious points.)
  • Good: Thoroughly cleaning part of your grill before cooking gluten-free.
  • Awesome: Having a section on your grill that gluten never touches.
  • Good: Having a separate, dedicated fryer for all gluten-free foods, keeping the oil separate (not mixing it with other glutenous oil at the end of the night).
  • Awesome: Having a separate fryer in a completely different part of the kitchen.
  • Good: One server changing their gloves for the special meal(s).
  • Awesome: All kitchen employees changing their gloves for the special meal(s).
  • Good: Having a system in place so the servers (at an event) know exactly who to deliver the special meal(s) to with little fuss.
  • Awesome: Having the server assigned to that table introduce themselves to the guest with the special meal and letting them know they’ll be taken care of.
  • Good: Giving your servers at least two trainings a year (but monthly would be ideal) on how to handle gluten-free and allergy-free requests.
  • Awesome: Become Gluten-Free Certified.
  • Most important: Listen very closely, and take your time with your guests so they know that you’ll personally take care of them. Don’t be afraid to ask questions.

NaBloPoMo: Gluten-Free + Twitter = Fun!

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Today’s National Health Blog Posting Month prompt is to talk about the awesomeness of our individual communities.

Let me tell you: I have had SO much fun joining Twitter. I haven’t had an account for long, because I didn’t see a reason for it. Now that I have a business, though, there are SO many great people to connect with!

I love the gluten-free community. It seems that we all want to make each other’s lives better, richer, easier and as “normal” as possible. We all have different talents, but we all chip in. We’re online a LOT. So many people are coming up with recipes like there’s no tomorrow, and they share. People take pictures, tweet tips, offer love and support. When you’re having a bad food day, or it seems like you’re alone and going to be left out forever, we can understand that. It doesn’t matter whether they live by me or not — someone else understands. They’ve been there, too.

We research and post our findings. We blog. We call companies. We stand up for each other. We sign petitions. We help people find each other, because the more, the merrier!

Connecting with the gluten-free community via Twitter has enriched my life so much, and I couldn’t have predicted that.

Thanks, everyone. Much love.

Cristina

NaBloPoMo: Biggest Gluten Lie….Ever.

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The prompt was to tell 3 truths and 1 lie, and see if people can pick out the lie. Instead, I’m going to tell you about THE most egregious lie about gluten that I have ever heard.

My mom is a diabetes educator, and they recently had a big conference. The person in charge of the food, who does not have Celiac or any gluten issues, ordered “gluten-free” eclairs from Kneaders.

***
I’m breaking from the story here to talk about bakeries — especially bakery chains. As a general rule, I don’t trust them. I would never order gluten-free anything from Kneaders, Paradise Bakery or any other place that:

1- Is primarily a bakery,
2- makes most (if not all) of their baked goods from scratch, and
3- doesn’t have at least half of a kitchen that’s dedicated gluten-free.

This may sound really harsh. However, when flour’s in the air, it hangs out for a while before it settles. Thinking about someone making regular bread out of scratch and then making gluten-free anything just makes me squidgy. All that glutenous dust will be settling into whatever you’re making, causing a cross-contamination nightmare. It wouldn’t matter HOW clean your kitchen/oven/dishes/tools/countertops were. Just…no. I feel uncomfortable just walking INTO these places because of how much flour dust must be flying around….crumbs everywhere….sandwiches being made…I just can’t do it.

Back to the story.

***
So, this person goes to Kneaders to pick up the eclairs, and asks, “These are gluten-free, right?” “Yep!” “You’re sure? We have people with Celiac who will get very sick if they eat gluten.” “Well, they’re mostly gluten-free.” “MOSTLY gluten-free?” “Yeah — well, the gluten bakes out.”

THE GLUTEN BAKES OUT?!?!

The diabetes conference person was smart and said, “No, that is not going to work for us,” and left.

When my mom told me this story, I about had a conniption fit. What an egregious lie to tell, putting all those people at risk, just to make a sale. I was LIVID.

I want to give Kneaders the benefit of the doubt, but I just can’t. Gluten-free information and products, especially in Utah, are getting more and more common. It isn’t hard to find information online about making gluten-free baked goods.

Dear world: This is not a fad diet for those of us who have Celiac Disease, gluten intolerance, or other food allergies. This isn’t a joke. You’re going to land people in the hospital if you think “it’s not that big of a deal.” It IS a big deal to people like me.

I am all for businesses “figuring it out” and adjusting their business to the trouble of making more gluten-free products available, but should Kneaders decide to go that path, I will not be supporting them. I’ll stick to the wonderful Eleanor’s Bake Shop where I know I can eat delicious food safely. If you haven’t been there, GO. Support them. Buy their products. Let’s keep them in business and let the ignorant businesses be.

NaBloPoMo: Darth Vader, Office Space and Fatigue

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One of my favorite movies in the world is Office Space, and I also love Star Wars, so I love this picture. It’s a combination of Darth Vader (obviously) and the boss, Bill Lumbergh. (My husband calls him Darth Lumbergh.)

Exhibit #2 – Bill Lumbergh

For those of you who haven’t seen Office Space, it’s making fun of office stereotypes before the TV show The Office came around. You have the main character, Peter, who’s stuck in a dead end job and finally comes to terms with how unhappy he is. You have the random, somewhat crazy co-workers, the egotistical, but utterly useless boss that you just want to punch in the face (see Exhibit #2), and the annoyingly cheery ladies who will not leave you alone if they think your day won’t be happy without them.

Life with essentially any chronic illness is tough. I’ve been very lucky in that I’ve been able to push myself through work, even when I’m not feeling well. Some days are better than others, but some days I just feel like crap, and it’s taking all the energy I have to be at work and just sit at my desk. This fatigue does not mean that I’m coming down with something….it just is. It can be a result of a great many things, and I haven’t even figured it out myself yet. I usually don’t feel like explaining it to people, despite their good intentions and desire to help. I don’t want to be told that I “have a case of the Mondays.” Just give me that look that says you appreciate how much I do for you, and that you know that it’s not always easy, and I’ll be over the moon. People who don’t have this level of fatigue can’t truly appreciate how grueling it can be to sit at a desk for eight hours a day, but that’s okay — I hope you never have to know. It’s very frustrating, though, when I’m doing all I can, and somebody jumps on my case about something small. It makes me want to throw in the towel, because I already suspect that I’m not good enough.

The way I get around this is by choosing to slow down, on a more macro level. Life, generally, continues to speed up. I’m teaching myself to slow down, to get as close to 8 hours of sleep a night as possible, to eat good, whole food meaningfully, and to come to terms with the fact that I can only do so much in a day.

This is horribly old-fashioned, but slowing down is what helps me keep going when I just want to quit. I remember that this feeling will pass, and that maybe I need to get a bit more sleep and few more nutrients in my body, and I’ll be feeling better. It’s a reminder that my body is talking to me, and that I’m starting to speed up and ignore my needs. When I slow down again and treat myself gently, I’m able to get some energy back, and I’m able to be more patient and loving.

Changing the way I think about this hasn’t been easy, but I’m stronger than I was, and I’m getting even stronger. Be kind to yourself, if you have a chronic illness, and be kind to others if you’re lucky enough not to. Maybe we just should all be kinder to each other and a little more willing to give the benefit of the doubt.

Happy Monday!

NaBloPoMo: Celiac Disease, food allergies, gastroparesis & perma-migraine

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Having Celiac Disease, food allergies, gastroparesis and my husband’s perma-migraine has changed my life.
– Medicine is a combination of both Art and Science. Many people in Medicine really want to help people, but we don’t know everything! There are many areas of specialization, and no-one is perfect. My health is my responsibility, so I have to take care of me, even if that means switching doctors (though I’ve been personally very lucky in this respect). Doctors don’t know every single answer, so I can’t expect them to just fix me.
– Everyone’s situation is personal. We all have our own health issues, and we can only do what we can do, regardless of what others want from us. My sensitivity to gluten is different from my co-worker’s down the hall. Some people are less sensitive to gluten, some are more. I can understand how that becomes confusing for friends who are trying to keep it straight, but just because Susie down the street can eat ______, that doesn’t mean that I can by default.
– You can only do what you can do. My husband and I don’t take many trips. It seems that the perma-migraine weakens his immune system quite a bit, because he’s gotten sick after the last two return flights. We don’t drive much, because having to pay attention to the road, and the light coming in does a number on the perma-migraine, even if he’s wearing his dark, wrap-around glasses. For me car trips are a little scary because I never know when my stomach is all of a sudden …. not going to be cooperative, which can be a problem when one is on a long stretch of road with nary a bathroom in sight. Sometimes we have to bow out of events early, or not even go, depending on how we’re feeling. We essentially tell people when we’re invited that we’d love to go….if we’re feeling well. Sometimes we don’t know if we’re going to be able to make it to something until an hour beforehand. This also means that we don’t buy expensive tickets to things. That way it’s less disappointing if/when we end up not feeling well enough to go.
– We are always re-evaluating our priorities. We were just talking about this tonight. Many people aspire to visit Italy or France or wherever. Europe is pretty much awesome about gluten-free stuff, but I have the other food allergies, too! And seeing all those sightsoutside? Yeah, no. Not good for the perma-migraine. Why spend all the money to get ourselves over there, only to have Matt frustrated about not being able to tour, and me frustrated about all the fabulous food that I wouldn’t be able to eat? Granted, if we moved there for some (awesome) reason, I’d figure it out, but travelling and having to deal with that just wouldn’t be worth it for me. Realizing that is a big deal. We have to re-evaluate what’s important to us, and move down that path.
– People are a lot more interested and caring than I gave them credit. We both often feel very self-conscious about our health issues. As I mentioned in my last post, we long to be “normal.” I’m often afraid that people judge us, or think we’re faking, or what-have-you, but I’ve found a lot of people to be genuinely curious and sympathetic. It’s also interesting, slightly weird, and pretty cool to have people think of me when they go to the grocery store and see an increase in gluten-free foods, or when someone goes to a restaurant and finds out they have gluten-free items. I’ve had friends and family recommend my blog to people who all of a sudden are diagnosed with Celiac. (Thank you.) I’ve had two people I care a lot about mention that they changed their lives and health for the better after reading my blog, which was very touching for me. I just want to help people, so when I’m successful, I feel successful.
Taking care of one’s self is very important. We only have one body, so we have to take care of it. I hope we can all find the motivation and courage to take care of ourselves and those around us.