Friday, January 10, 2014

the path to recovery: 10 things about celiac I wish I knew before

I've had a surprising number of people tell me recently that they think they might have some level of gluten intolerance, and they have asked for advice on starting this journey to healing. I figured it was high time I posted some of the pointers and pitfalls I have learned while going through my own Celiac journey.

1. Get tested. There are a few different tests doctors can do to diagnose Celiac/gluten intolerance. One is a blood test, which is known to be somewhat inaccurate. Many people with gluten issues will get a negative on the blood test, but it's a start and it's easy to do.

The more complex way of getting tested is an endoscopy. Many doctors will suggest this, and many will say it's an unnecessary surgery if you don't know what's wrong. The problem is this: to get accurate results on an endoscopy, you have to eat gluten consistently for several weeks. If you go through an elimination diet, cut gluten, feel better, and decide to do an endoscopy to back up your results, you will have to start eating gluten again for six weeks and go through all the pain and suffering of reintroducing it into your now-healing body. My suggestion is to research the symptoms to see how many you have, and talk to your doctor to make the best decision for you. Everyone is different and, unfortunately, there is no one perfect way to go about it.

2. Cut out the gluten. Once you find out that you have Celiac or gluten intolerance, the key to remember is that NO gluten is ok.


Not even a speck, (probably) for the rest of your life.

I will harp on this over and over again, because mainstream media and most of your friends will not understand this. They will tell you over and over again that because Celiac is not an allergy, a little bit won't hurt you. Of course, seeing celebrities tweet about their gluten intolerances while posting pictures of themselves eating cheeseburgers and pizza the next day doesn't help our plight.

What they don't understand is that Celiac an Auto-Immune disease that actually causes your body to attack ITSELF any time you ingest gluten. The amount of gluten that you can fit on the nail of your pinky finger can cause severe reactions and mucosal damage to your intestines.

Cutting out gluten can seem easy to an outsider: stop eating bread and crackers and you're good, right? Well, it's not quite as easy as that. Because everyone is different, you may find you react to even the slightest touch of gluten. A "gluten free" label on a box doesn't automatically mean a product is processed in a dedicated gluten-free factory. Cross contamination is a very serious threat to those of us who cannot tolerate gluten in any way, shape, or form. I have found the internet to be a necessary tool while grocery shopping. (I will admit our first few months of grocery trips were filled with anxiety and internet searches in the middle of each aisle.) Most websites will have a "gluten" entry in the FAQ section, telling you whether their factory has dedicated lines or factories for their products.

Cross contamination is to be expected in factories and restaurants, but it can also happen in your own home. I suggest replacing your pots and pans, your toaster, cooking utensils, Tupperware/storage containers, and any non-stick or plastic cooking appliances. Disinfect your microwave and fridge. It's easier for a Celiac to have a dedicated gluten free kitchen, though that is not always feasible for everyone. If you must have gluten in the house, store it in a separate area and disinfect all counters and appliances between cooking with gluten and preparing your food. Label your gluten free utensils and store them in a separate area. This was something I learned the hard way, and hope that you won't have to.

Photo courtesy of Gluten Dude
The most important thing to remember is that cheating will set back your healing. It might be easier to stop at a fast food joint than to think ahead and pack snacks, but your body will regret it in the end.

3. Beware of hidden gluten. Gluten is everywhere. I once was sick for almost a month because the eggs we bought were sprayed with an anti-cracking spray containing gluten. Do your research, because there are naturally gluten free products that could, in fact, contain gluten. Oats, for example, do not have a gluten protein, but are often processed in factories (or planted in fields) also containing wheat. Certified gluten free oats are a must for anyone with Celiac. Some fruits are sprayed with gluten-containing chemicals for preservative purposes.

Gluten can also be found in several non-food places. Glue, makeup, detergent, shampoo, lotion, and hairspray can have gluten in them. If you find that you are still getting sick despite cutting out gluten from your diet, you may want to check into your other products. Pet food is another place to watch - you feed your pet something with gluten, your pet licks itself (or things around your house), you touch it and then touch your face or mouth or food, and voila, sick central.

4. Find a blog or book or support group. They are all over the place. Finding a community (or author  or blogger or friend) who has Celiac can be a huge part of the healing process. Not only can others help you to troubleshoot issues, help you find recipes and brands that are safe, but they can help you to realize that





Some of my favorite bloggers are Gluten Dude and Celiac and the Beast. They both use humor and sarcasm to relate their Celiac stories and advice. They are my kind of people. If that's not your style, all you need to do is google "celiac bloggers" and hundreds of them will come up. Just make sure that whoever you follow has done the research and knows the facts. The last thing you want to do is to base any of your lifestyle changes on someone who doesn't know what they are talking about.

5.  Keep a food diary. You have probably done this in your journey to figure out what the heck was wrong with you, but I would recommend keeping it for a while. The reason for this is that down the road, you may find that you have developed other food allergies and intolerance. Around the time of my diagnosis, I found out I was lactose intolerant. About six months later, I had to do another elimination round to find out that I can't eat anything with corn or corn derivatives.

6. Don't rely too heavily on any one food while you heal. I wish I had known this when I was a baby Celiac. I had my mourning period and then started to find new recipes. We had corn tortillas available here, and it became Mexican night. A few nights a week. Tostadas, and tacos, and burritos galore. Until a few months later when I started feeling awful again. Relying too much on one food (in this case, corn) while your gut is healing can lead to an intolerance down the line.Vary what you eat and go easy on the grains while you heal.

7. Learn your symptoms. If you are eating gluten continually now, you probably have some long-term discomfort. Once you make a commitment to go 100% gluten free, though, your symptoms will change. Your body is healing, and will react severely upon ingesting even a small amount of gluten because it's now a foreign substance. Knowing your own personal symptoms will help you to narrow down whether you ate something with gluten (and writing in your food diary will help you pinpoint what it was) or whether you're just feeling under the weather.

Unfortunately, everyone's Celiac is different. While there are some symptoms that most Celiacs have in common (like gastrointestinal issues like flatulence, diarrhea, reflux, bloating, and being severely over or underweight due to malabsorption), there are many that are a bit more rare, including neurological issues (like anxiety, memory loss, irritability, and migraines).

For instance, I nearly always have a panic attack, brain fog, intense sleepiness lasting for days and then insomnia lasting for weeks, and stomach pain when I have eaten something with gluten in it, in addition to several of the classic symptoms.

Infographic courtesy of Gluten Dude 
8. Know that some of the symptoms you feel now will go away, and others may not. Depending on what your symptoms are, how long you've gone undiagnosed, and your body type, you may feel better immediately or you may have long-term symptoms that will continue. These symptoms could be residual effects from the Celiac, or other disorders that are common in those with Celiac, like IBS, Hashimoto's, arthritis, or even Lupus.

In my case, the asthma and migraines cleared up almost immediately, and typically only bother me when I've been contaminated. Other symptoms, like the lack of energy, constant heartburn, and aching joints are issues that started with Celiac and haven't gone away for good.

There are things you will have to learn to live with, and there are a lot of nice natural remedies to help ease them a little bit. Peppermint oil, activated charcoal, and papaya supplements can help ease the pain after a "glutening." Also keep in mind that several of your long-term symptoms are caused by the malabsorption of your food and vitamin loss. I recommend talking to your doctor and checking to see if you have any vitamin deficiencies.

9. Eating out can be difficult...but not impossible. Apps like Find Me Gluten Free are a lifesaver to me when we travel in the U.S. I always go through the app and read reviews and then call the restaurant, speaking to a manager. Since I have several food intolerances, I explain ahead of time the accommodations I will need. Sometimes the manager will tell me it's not possible, and that's okay. I'd much rather learn that in a phone conversation than an hour after I've eaten. If the manager sounds confident and is able to explain the restaurant's policy on cross-contamination, we will make a reservation for a day and time that manager will be there at the restaurant.

When we arrive, I ask the host or hostess to talk to that manager. I introduce myself and they will usually seat us, introduce us to the servers, and go through their policies again to ensure the server is aware of how serious the condition is. Many restaurants are used to people coming in and asking for gluten free items, but very few of them are asking from the standpoint of avoiding illness, so it's important to make the distinction.

It does become tiring to do this EVERY TIME you go out and eat, but it's worth it to stay healthy. Eventually, the people around you will realize that you wouldn't go to all this length for a fad diet and they may even start to advocate for you. Several times this summer, friends and family members were the ones to ask the servers about their gluten free menus or kitchen policies so that I didn't have to.

10. On the note of friends... You will probably have friends, relative, co-workers, acquaintances, or even strangers give you their opinions on your "gluten issues." Some will be loyal and do everything they can to learn about Celiac and how to help you, and some will be fiercely opposed to anything being wrong with you.

You may have a mourning period as you realize that your whole life will revolve around your diagnosis for a while, until it becomes second nature.

As you realize that social engagements will never be the same, and traveling becomes stressful instead of relaxing and adventurous. 

As you come to terms with some of the symptoms that may never go away all because of a silly protein in some too-common grains. 

As you start to find some stability and revel in your new-found baking prowess, only to realize that your newest batch of muffins or bread loaves are crumbly and tasteless.

It gets tiring having to argue with people that Celiac is a disease and not a fad, but don't let it get you down. You will find out quickly who your true friends and supporters are - and they will help you get you through this. Surround yourself with people who are positive and encouraging, because you will probably have enough emotional roller coasters all on your own as you go through this lifestyle change. (This is also a good reason to get involved with a support group or community or even blog - the Celiac community is a very outspoken and supportive one.)

And then you'll get to that point where you realize you haven't been contaminated in months, instead of days. You'll impress your friends with your "icky gluten free food" that was so delicious, they didn't realize it was gluten free until you told them. You'll stop craving gluten-y food all the time, because you'll finally feel like yourself again. You won't feel the need to check every single product over and over again to double check that there isn't any gluten in the ingredients (though it's good to check occasionally since companies change their practices all the time.) You will come to terms with your disease and realize that it's only a small part of you, that you've overcome it and taken back your life.

You will know that not only can you survive this, but you can thrive.

I know this was a long post, but in all honesty, it sums up what I've learned over the past year and a half. It's what I wish I had found when I was first diagnosed, and I hope that it's able to help even one person as they start the road to healing. If you have any questions, please feel free to leave a comment or hit me up on facebook!

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