Celiac Disease: An Interview with Rita Jackson

Tell me a little about yourself and how you were diagnosed with Celiac Disease.
My name is Rita Jackson and I have had Celiac Disease for 10 years now and have been on a gluten free diet for 9.5 years. Having Celiac Disease, has been a true BLESSING for me because it has saved my life. How, my body is not subjected to eating the additives and chemicals that are being added to our foods, which forces me to eat and be healthier. But most of all God has allowed me to educate others about the importance of what types of foods they are eating.

I was 36 when I began experiencing some itching on the palms of my hands. I didn’t pay that much attention to it, because after a while it went away. By the end of the week the itching began to spread to my legs, but the odd thing about it the itching would arise at the end of the day when I undressed. The itching was to intense, I was visiting the emergency room at least 3 times a week connected to a Benadryl IV. As time went along, my health took a turn for the worst, because my muscles and joints were being attacked, I was experiencing fatigue, and I lost 17 pounds in about a week and a half, which caused me to be somewhat immobile. His went on for months. I was diagnosed with Lupus, which turned out to be misdiagnoses. So, it was back to the “drawing board” for me. While all this was going on I was eating only eggs, drinking water and some milk because I had a strange felling it was something I was eating. I made an appointment to see another doctor who ran some allergic reaction tests using my blood. When the results came back it stated I was allergic to grass and wheat. I was astonished to know I was allergic to wheat, because I had been eating wheat all my life. When I questioned the doctor about me having an allergic reaction to wheat, his response was, “Some people do and it’s not a big deal.” I was not satisfied with that answer, so I began searching the internet for answers, and posed the question to my sister in-law who is a nutritionist, who discussed going on a gluten free diet, and told me about Celiac Disease. Well, this went on for 3 years, with no real diagnoses, until 2003 when I moved to Durham North Caroling and a doctor in Chapel Hill performed an intestinal biopsy that determined I had Celica Disease. (Although, I had helped the healing of my intestinal lining, I still posed signs of this disease.)


What are some of the challenges that you have had to face with dealing with Celiac Disease?
When I was first diagnosed with Celiac Disease the biggest challenged I faced was eating out at restaurants and at parties. I was so afraid to eat anything because of suffering intense itching and abdominal pain, due to gluten and other food additive cross contamination. I was afraid to question the waiter or waitress about items of the menu because I felt as though I was imposing upon them. (That ended soon) The second challenge for me was attending parties of all kinds. People would serve food that I knew I couldn’t eat and which was a drag, so I would end up drinking water, because I could not drink any the sodas or alcoholic beverages served. (I solved this problem by eating before I went to the parties or bringing my own food.) The third challenge is having more joint pain now than before which at times can cause slight physical limitations. Another is I have to read every food label before purchasing the item even if it is listed gluten free, because some companies change their ingredients from time to time. Finally the biggest challenge for me was finding gluten free foods, the cost, and purchasing gluten free foods that tasted good with out wasting my money. I can’t even express how much money I spent over the years on gluten free products that tasted awful, but if I had to estimate I would say over a $1000.00 or more.


Walk us through a typical day before you were diagnosed with Celiac Disease?
Before, I was diagnosed with Celiac, I was eating healthy, every active. I was able to eat anything I wanted, especially my favorite (BREAD). I guess you can say my life was “normal” to me because I had very little limitations in what I could eat and physically do. I was able to go out to any restaurant with friends or family to eat, and did not have to think about what I was going to eat.

Did you find it a difficult transition from a wheat-based diet to one free from wheat?
When I was first diagnosed I found it very difficult to transition from wheat and gluten based diet. One of challenge I faced was finding the right type of pasta with the right type of consistency I could make Lasagna and macaroni and cheese with. But the biggest challenge was finding the right bread. I went many 8 years without eating bread because I could not find bread that tasted good. I just find two types of breads last year that are perfect to my liking.

How is it different now that you know what to do or how to eat?
I’m not literally starving myself anymore, because I have a wide variety of foods to choose from, ingredients to cook with and cookbooks to show me how to make delicious nutritious meals and deserts. Also, I know which products to purchase now with out wasting my money.

What is the typical grocery bill like for someone that has Celiac Disease?
The typical grocery bill for me in the beginning was about $100.00 and went down to $80.00 to $74.00 and continues to go down. I have learned where to shop and call grocery stores, health food stores and check Glutenfreemall.com to see if any of their gluten free items are on sale. One other thing that really helps is Glutenfreemall.com offers points from products purchased that can be used towards purchasing other foods. This cuts the cost a little.

How did you learn how to maneuver around altering your lifestyle since having Celiac Disease?
Maneuvering has come a lot easier now for me than it use to be. Restaurants are offering more gluten free meals now which make it easer to go out with friends and family as long as it’s a restaurant that serves gluten free food. Going to parties is also easier now, because I just brought two or three items to the party that I could eat. I still have to be careful to avoid cross contamination at restaurants and at home.

I know when I went into the local grocery store to shop for Gluten-free products, the only thing that I was able to find was two margarines and some brownie and muffin mix. How difficult is it to shop and does it gets better with time and experience? In the begging it was difficult to find gluten free products, I was finding a few items just like you did and that I didn’t know how they tasted. But within the last 2 and half years it has gotten easier because more grocery stores are sailing gluten free items and some grocery stores have their own gluten free products now at reasonable prices.

Do you eat out a lot? How do you plan for trips or vacations?
I eat out every once in a while. I have to admit that sometimes when I do go out to eat, I am still scared that I might encounter some cross contamination. I only go out once every three months and sometimes it’s not that much. As far as vacations and trips, I carry my own salad dressing with me for salads and I take a lot of my GF non cook foods with me and snacks, I look up restaurants before hand that serve gluten free foods, and I have cards in different languages that explains I am on a gluten free diet and if they have anything I could eat.

What about your social life has it changed since being diagnosed with Celiac Disease?
My social life has changed a little, I don’t get asked out to dinner by girlfriends as much as I use too, unless I choose the restaurant. One of the most difficult problems is if I do go out to eat with friends and a “new” person comes with us and doesn’t know about my condition and ask me why I can’t eat a certain food, and I explain to them why, the others act as though they are irritated with me because they don’t want to hear about it anymore.


What would be some advice or encouraging words that you would like those that are reading this interview to know about Celiac Disease and how to deal with it?
I would like for everyone to know that having Celiac Disease is not a “curse’ but a Wonderful Blessing that saved my life, because I love to eat and I could be worse off if I had not been diagnosed. The best way to deal with celiac disease is to get more than one or two support systems. Find a doctor that knows about the disease and don’t accept more than one or two diagnosis that doesn’t connect with your symptoms. Search the web for celiac groups, chat lines ask companies if they could mail free samples of foods to taste and, attend gluten free food fairs.

What grain alternatives do you like cooking with?
I like cooking with Tapioca flower and rice flower.

I know we have talked a bunch before this interview about Celiac Disease, and you are the primary reason why I have taken an interest with learning more about this disease and trying to write and educate others out there about this disease. How did you get so knowledgeable about Celiac Disease? Did someone help you with gaining so much incite with Celiac Disease?
I had to do all the research myself, and I have not stopped because more information about Celiac Disease and celiac products is continuously brought forth every day. I spent about 3-5 hours online looking up information about celiac disease and companies that sold gluten free products, and now I spend about 3 hours or 2 looking up information and downloading new information and taking this information and creating it into a small pocket size booklet that I can carry around with me.

Where could someone go if they wanted more information about support groups or information to learn more about Celiac Disease?
If someone wanted to know more about this disease they should go to GlutenFreemall.com has books and your can subscribe to their newspaper for up to date news regarding Celiac, http://www.glutenfreeclub.com, celiac.com, glutenfree.com and glutenfreeraleigh.com. They can also attend workshops in their areas that teach about Celiac Disease.

Off the top of your head could you give those that are reading some quick tips or recipes or strategies that you have found that are successful that you use with preparing your food?
One food product that I missed the most besides bread was cake. I purchased an Xpress machine I saw on TV. Some of you may have seen it. This machine has allowed me to make individual cakes shaped like tacos with no oil or butter. I use Pamela’s gluten free cake mix and take out the oil and just use one egg and water. The Xpress machine uses air to make the cake rise. This cuts out a lot of calories and makes the cake fluffy.
There are so many foods items I can make with these individual cakes, such as Suzy Q’s I slice each cake through the middle and top with whip cream and replace the top portion. I also do the same and make it into a Chocolate Strawberry Short cake, just add whip cream and strawberries. My mother and I also came up with a healthy Crunchy Vegetable Shrimp Salad. You need sweet purple onions, celery, cucumbers, carrots, and shrimp and gluten free Italian salad dressing. Allow the vegetables to marinade in the dressing over night, do the same for the shrimp in another container. Next drain the dressing off the shrimp and vegetables and mix them together. Serve over a bed of lettuce. I have SECRET gluten free chocolate chip recipe but it will remain a secret.

On cooking, what is your favorite gluten free recipe - is there something you regularly eat at home, or a reproduction of a gluten-full dish you are particularly proud of?
My favorite gluten free recipe is the Crunchy Vegetable shrimp Salad. I am proud of my chocolate chip cookies right now, but I just devised a gluten free stuffing for Thanksgiving. I use two gluten free products to create this stuffing.)

I know that we have talked in length about the “trial and error” that you painstakingly had to go through in regards to finding foods and brands that you liked over those that either tasted nasty or just wasn’t that good to use for prepping your food. Are there any brands that you highly recommend over others?
Cause Your Special cake mix and pancake mix, Dr. Schar Classic Gluten-Free Rolls (Hamburger Buns) The Grainless Baker Gluten-Free Hoagie/Submarine Buns, Pamela’s Gluten free cake mix, and brownie mix. WaldenFarms.com salad dressings, Gluten-Free Pasta Tagliatelle, and Glutano’s pretzels. UTZ chips (the salt content is too much for me.) Perdue chicken in the individual packages is gluten free.

Is there any food that you particularly miss?
Yes my mothers Thanksgiving stuffing, and macaroni and cheese.

Would you go back to a wheat-based diet if you could?
No, I enjoy the foods that I eat now, because they are healthier and eating this way helps me to pay more attention to my diet.

What is your favorite piece of cooking equipment?
Last year I purchased a coking set from Salad Master that helps retain the nutrients in my foods. I also like my rotisserie.

Do you have a favorite cookbook (apart from your own, of course!) or do you tend to cook by eye?
I tend to cook a lot by eye. I love to experiment in the kitchen when I have the time.

What is always in your fridge?
What is your single most-used ingredient? As far as gluten free products that are in my fridge, Smart balance butter, gluten free corn meal, rice flour tapioca flour, Hormel gluten free lunch meats, lettuce, and other vegetables, and gluten free yogurts.

What do you serve at Thanksgiving (or other major festival, such as Christmas, which would be the big food festival here)?
For the holidays, I serve Butter Ball gluten free turkey, collard greens and cabbage mixed together, gluten free corn bread and stuffing, gluten free mac and cheese, gluten free potato salad, and for desert gluten free chocolate cake, and sweet potato pie. For other occasions, I use me rotisserie to cook chicken, and then I add BBQ sauce on it and let it cook for 10 minutes in the oven. Any food product I add to my food must be gluten free.

Do you ever have a culinary disaster?
I use to have a lot of culinary disaster, but now I have very few. Most of the time, the disaster occurs when I am trying to create a new dessert.

How do you research a recipe book?
Do you start with a theme, or does a theme become apparent as you find interesting recipes? I usually search for a theme.

Do you - or your family - get bored of testing the same dish over and over?
Yes, this has occurred many times, which is why it is important to devise many recipes to keep me from skipping to many meals, and to keep my husband from eating too many processed foods.


What trends do you see for the future of the gluten free world?
I see that there are going to be more gluten free products sold in grocery stores and gluten free restaurants, and gluten free foods sold at lower prices. I was hoping for a home test to detect celiac disease, which is going to be on the market this year.

Do you think it is getting easier?
Yes have celiac disease is getting easier in certain aspects, such as learning how, and where to eat. The physical aspect can be challenging at times when coming across contaminated food.