A friend of mind, Ginger Klein, has agreed to share her experience of suffering from Celiac disease. Her diagnosis is not uncommon, but she shares her gluten free diet tricks she has learned over the years, as well as what do when eating out, how to cope with holidays and making favorite recipes at home. Her personal story and success will inspire anyone with gluten problems and help the rest of us understand more about those this debilitating disease.
Second Time Around is Worse
I was experiencing mild expression of Celiac Disease while in graduate school, had bouts of lactose intolerance, and seemed to catch a lot of colds and flues.
For the next 6 years, I had frequent, unexplainable bouts of diarrhea (I even got tested for parasites once, with negative results). I slowly lost weight during that time, but then went through a month and a half during which I got severe diarrhea about every 3-4 days. I kept trying different ways to treat it, fasting and then doing the BRAT diet (and of course once I got to toast, I got diarrhea again) and getting various kinds of medicine to treat intestinal illnesses (Imodium was the worst, because it trapped the gluten in my intestines and made me get WORSE).
My skin got dry, my complexion was pallid, my hair started falling out and my nails were extremely brittle. I dropped weight very rapidly, and then started to lose coordination. I tripped walking down the street one day, and couldn’t even catch myself to break my fall — I landed on my knees hard, splitting them both open. They didn’t form proper scabs, and for weeks the weak scab that did form would wash off in the shower and they would bleed like they were freshly wounded. It took about 2 months for them to finally heal.
About a week before I started eating gluten free, I talked to my Mom was said I was diagnosed with Celiac disease as an infant, but at the time our family doctor said that it was “a childhood disease and I would grow out of it,” so when I started school my mother put me back on a regular diet.
I gave it some thought, and about a week later (after a day of fresh bread and pasta), woke up in the middle of the night vomiting and having diarrhea at the same time. I realized I should try a gluten free diet. The next day, I announced I was going to stop eating bread or pasta, and see if that helped. Then I started looking on the internet and got a clearer idea of other dietary changes I would need to make to fully test the childhood Celiac diagnosis theory. I learned that there were others like me who had been diagnosed in childhood, had a period of several years when they ate normally, and then got very sick — the disease went into remission but came back with a vengeance in their late twenties or early thirties. I also learned that now there are blood tests and other procedures that can diagnose the disease, but these weren’t available to me.
Trio of Triggers
I went 3 days, then a week, then two full weeks without getting diarrhea. I began to feel ever so slightly better, but was incredibly weak and continued losing weight. My supervisors recommended a vacation (and there were other things going on, too; a break-up — usually some particularly stressful incident, be it emotional or physical, will somehow trigger active Celiac Disease — and the combination of physical illness and emotional distress sent me into clinical depression), so I vacationed for a month to rest, ate lots of rice, and meet with a psychologist I knew.
One of my greatest delights was discovering after a few weeks that I could eat dairy again without any problems. In fact, for the next year I could get away with eating large bowls of ice cream every day and have no tummy aches and not gain any weight. I picked the highest fat content I could find for milk and yogurt, and spread the butter thickly on the pancakes I made from the rice flour I found at the store. I created mini rice-cake pizzas, and came up with a few other special recipes using locally available foods.
After going gluten free for two years, I was delighted to find a growing awareness about Celiac Disease and an explosion of new, gluten free products, not only in health food stores but also in ordinary grocery stores, and even at Wal-Mart.
Now, over six years after changing my diet, my intestinal lining has recovered and I’ve regained weight; in fact, now I have to make healthier choices and work to incorporate less fattening options and more fiber into my diet. Also, infertility is associated with *untreated* Celiac Disease; but that complication has also healed with my new baby! 🙂
Go For the Bacon Double Cheeseburger! (But skip the fries)[am4show guest_error=’noaccess’ ]
My own diet consists of eating a lot of corn tortillas 🙂 and I go to Mexican restaurants, because there are corn options. Chipotle burrito bowls are my favorite. Taco bell tacos (hard shell) are one of the few reliable fast food items I can eat on the road. I NEVER trust French fries, and go for the bacon double cheeseburger without a bun when I can’t get anything else (and have to eat fast food).
When eating out at a sit-down restaurant, I check for an online menu before I go (lots of chains have them now), and remind myself to tell my waitress, “I need everything gluten free,” to see if there is a specific gluten free menu available. In some places, this brings a visit from the cook to my table, who goes over my options and can verify if, for example, they have a dedicated fryer for fries (one that doesn’t have battered things fried in it), or a separate grill for grilled foods, and to remember to withhold croutons and check the labels on the salad dressings.
Measure for Measure, Gluten Free Comes Out Equal
For at-home baking: Bette Hagman has lots of ideas in her cook books (The Gluten Free Gourmet line), but I’ll confess I haven’t used as many of them as I thought I would, because I hate having to buy a hundred different kinds of flour. I keep my flour and starch supplies pretty basic, and add ground flax seed for fiber. The best tip I’ve ever heard is to find out what the proper weight is for flours, and when substituting, not go on dry measurements, but on equal weights.
For holidays, I always take food (bread, crackers, cookies, etc) with me when going to someone else’s house. Pamela’s Mini Ginger Snapz are the best thing for Christmas. For Easter, I’ve developed a bread machine recipe that satisfies the nostalgia for a doughy treat.
When people want to cook for me, I steer them towards some simple classics, like oven-roasted chicken (with a warning to not add soy sauce if they are using a recipe), mashed potatoes from scratch (use milk and butter instead of chicken broth), and veggies. I recommend staying away from any kind of sauce or packaged mix, and just using whole, plain ingredients (spices are fine, but not spice mixture packets, as they could contain wheat flour or starch).
Betty Crocker has done a wonderful thing in making four gluten free baking mixes available in the regular baking aisle in many grocery stores: yellow cake, devil’s food cake, brownies, and chocolate chip cookies. While 3-4 times more expensive than their normal counterparts, they are still considerably cheaper than those offered by specialty companies, and they’re easy to find, and with directions that look normal. Also, they TASTE GREAT. One of the problems with gluten free baked goods is that they tend to have a gritty texture. Somehow, the Betty Crocker mixes don’t have this. So I steer people towards these when they want to make baked goods that I can eat.
It’s Not Worth It
The biggest thing that helps me handle Celiac disease is that I got so sick before I tried going gluten free. I was seriously worried I was going to die, because nothing I ate stayed in, and my body was wasting away and breaking down in front of my eyes. The return to health from changing my diet has been such a delight and relief, that I only rarely struggle with temptations to eat things that aren’t allowed. The second biggest thing is that we have an amazingly good gluten free bakery in town, and I know that even if I can’t eat the cookies, pies, cinnamon rolls, or pizza in the office or at an event, I just have to wait until I get home. It’s just not worth getting sick.
I’ve seen people struggle with bitterness and self-pity, and by the grace of God I haven’t. I’ve had people try to offer me pity, and it’s something I can’t accept — I continue to be too grateful to be alive and healthy as I follow a somewhat restricted diet. I would offer the advice to focus on the good health, the restored strength and lack of intestinal pain, and to pause and let yourself get teary-eyed in the supermarket aisle when you discover a new packaged food that is safe to eat (like the Betty Crocker mixes), or a restaurant that has come out with a gluten free menu (like the Olive Garden!), and to give thanks for what you CAN eat.
The hardest thing is helping people understand that I can’t cheat. If I eat the wrong thing, it will destroy the lining of my intestine, causing the symptoms I have mentioned above, but also leading to mal-absorption and a host of complications from diabetes to osteoporosis to colon cancer. NOT WORTH IT. And unlike other food allergies, I can’t just take a pill for it; there has not yet been a medication put on the market that will block the autoimmune response to the gluten protein.
I’m always glad to help in ways that will enable others to live with being gluten free! So, I hope this assortment of things I’ve done helps!