Boy times have changed. But, not Circe. She is still the ONLY person who calls me Sunshine. I wanted to post my favorite picture of us, but it is floating in limbo since the move. It is such a cute picture taken at the Red Rose Formal. We are hugging, both look hot. It's an Alpha Phi thing. We love to hug... and we are all beautiful. And smart. And uber successful.
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Circe has been very open about the diagnoses of her daughter Savannah with Celiac Disease, so I asked her to answer a few questions for me about her life raising a child who was allergic to gluten. Can you tell us how you were introduced to Celiac Disease and what it is?
When Savannah was about 2 years and 2 months old, she started with symptoms similar to a stomach virus, gassy, diarrhea and periodic vomiting. I remember on a trip we took in late May that we were at a Wendy’s, she ate a hamburger and threw it up within 10 minutes. When we got home, I took her to the doctor’s office and they told me it was probably a stomach bug and just wait it out. The “stomach virus” never went away; I took her to the doctor’s office at least once every two weeks with the same symptoms, saying she still isn’t getting better. I believe that because she never got dehydrated it never raised any immediate flags. Over the course of this time, she got worse and worse. She lost over 5 lbs and dropped to 20 lbs and got a huge distended belly that thumped like a watermelon (think of those starving children in Africa you see on TV, she was starving). She became lethargic and didn't play, laugh or anything. By mid-July, before another doctor’s appointment we were at Books-a-Million, where I’d take her to play in the kids section because it was way too hot outside. I decided to grab a medical book and look up her symptoms and it was the first thing I saw and it fit perfectly. At the doctor’s office, the doctor rattled off a list of diseases, Celiac probably one of them, but I was too dazed to pay attention, to see if anyone in my family had any of them. Before I could ask about Celiac he was referring me to a gastroenterologist and he thought it was Celiac. At that point he had only seen one other child with a diagnosed case of Celiac in the entire practice (2 offices and 7 doctors).
Of everything they tested Savannah for, I hope with everything that it was Celiac because the treatment is only a diet change, no medication, no real risks for other diseases, and if taken care of, no long-term damage to her body.
What is the most challenging aspect of this disease given that it affects your child?
That she is a very picky eater. I think that some of this stems from when she got Celiac. I also believe that she knew what the problem was before any of us (doctor’s included). Savannah ate toast EVERY morning for breakfast, before we got the diagnosis confirmation; she stopped wanting toast, just like that. I think she equated the toast with when she felt the worst, just after eating all that gluten. It must have been like a bomb going off in her belly. Reading about other people who have Celiac describe the pain and suffering some of them had with their stomach and gut, I am just amazed at Savannah’s resilience. She never cried, complained, or whined all during the time she had to have been in excruciating pain. Just imagine how bad you feel when you get diarrhea for one day or a bad bout of gas, she was in that state for three months, 24 hours a day! With all the advances in food, I don’t have the worries parents did 10, even 5 years ago about birthday or wedding cakes. I guess the biggest challenge is making sure she can take care of herself when I am not around to check her food. I can’t be with her 24/7 and she is getting more independent and wanting to have sleepovers and stuff. She has gotten to the point at school that if someone hands her something to eat, she either asks them if it has wheat in it, or says that she can’t have it because it has wheat in it. Now we are moving into the fine tuning phase, explaining more details about gluten (not just wheat) and what kinds of foods can have gluten in them.
You had mentioned to me that you believe all people would benefit from a gluten free diet, why is that?
In my research about this disease, which is an auto-immune response that she will never grow out of, I have learned about gluten (found in wheat, barley and rye) and how it affects the human body. Gluten is a natural inflammatory of the human body, anyone who eats gluten, with Celiac or not, will experience inflammation of the joints and muscles. Most people never notice it, but it is there. That is why people with arthritis may experience benefits from a gluten-free diet.
I also think of wheat like I do milk. People are lactose intolerant because the human body is not made to be able to drink the milk of another animal. We are the only species to do that. Some people have built up a tolerance and/or our genes have begun to change to help us digest the milk, but as a species, we are not supposed to drink cow’s milk. Wheat is the same, it have been genetically modified over the centuries so much, that we can now, for the most part digest it, but it is not natural to the human diet.
What benefits and challenges do you face with your food lifestyle?
I have really taken the “working Mom’s” approach to gluten-free living. I don’t have the time to make everything from scratch and frankly with all the advances with labeling laws and the fact that a wheat-free diet has become the newest trend, I don’t have to. When she was first diagnosed, I envisioned mixing my own kinds of alternative flours and baking everything from scratch. I even bought a stand mixer. I use it for her bread, but I make it from a mix. There was a big learning curve with Celiac. Gluten is in all kinds of products, you wouldn’t imagine, just like sugar. Soy sauce, most are make from wheat, not soy, which is also the basis for many marinades. Some boxed raisins are dusted with flour to keep them from clumping, but not so many anymore, most use corn starch now. Almost all cereals, corn, rice or whatever are made with malt flavoring which is made from barley containing gluten. Most soups use flour as a thickener. We need to stay away form barbeque flavoring and even some artificial colors or flavors. Oats do not have gluten in them, but are often stored in the same silos as wheat, and therefore cannot be considered safe. We have to remember no double dipping in peanut butter, butter, jelly or other condiments; a new knife for every use. Spreading peanut butter on regular bread, then dipping the knife in to get more contaminates the jar and it has to be marked “Not GF”.
What is your favorite meal?
Her favorites are Annie’s GF Mac ‘n Cheese and Amy’s GF Pizza that she embellishes with onions, zucchini, turkey pepperoni and extra cheese.
Do you find that your family is more open to foods given the dietary restrictions?
No, Savannah is still a really picky eater and my husband still insists on “wanting his gluten!” I have heard that quinoa is a great alternative, but we haven’t tried it. We just look for the best tasting alternatives to the foods we regularly eat (i.e. gluten-free pastas, pie crusts, crackers, soy sauce, soups).
❖❖Personal note: Quinoa is super yummy and full of protein. You can use it in place of rice or even pasta. I love mine with Trader Joe's Tamara sauce & Chicken. ❖❖
If and when you “fall off the wagon”, how does it impact your body?
I think that because she started this diet so early and didn’t have to try and do it at 12 or 20, it is much easier for her to stick to the diet. We are just starting to experience some growing pains with Savannah. And if she goes to public school, I think it may be a little more challenging. But we have made sure that she is very knowledgeable about what she can and can’t eat. She has, kind of luckily, had a few instances of eating wheat and she pukes immediately (within 5-10 minutes) so she vividly remembers what will happen if she eats wheat.
Can you share with us a “day in the life” of your kitchen?
Savannah still enjoys toast for breakfast, one piece with butter and one with peanut butter and some yogurt (with extra fiber, because people with Celiac often don’t get enough fiber). Her bread must be pre-made, pre-sliced and stored in two-slice seal-a-meal bags in the freezer. We make bread about once a week, or if we have time will make 2 or 3 loaves at once, so all her sandwiches are always with toasted bread.
For school we just pack lunches with other options, fruits and the one or two vegetables she might eat, slices of baloney or cheese and crackers, yogurt, gluten-free pretzels. Luckily, she will never get to eat in the school cafeteria.
Because she is such a picky eater we are trying to avoid separate meals, so most everything we make for dinner is gluten-free with some sides or additions with gluten. I will use gluten-free marinades, but may have regular bread available at a meal. When we make pasta, I will just make her some gluten-free pasta separately. But if we make pizza at home, we really like a particular gluten-free pizza mix and will all eat it.
In your opinion, how much more work is it eating gluten free?
It’s really not that difficult. There is an added level of difficulty because Savannah can’t have any amount of gluten, or she will get sick. I was gluten-free for almost a year and it was relatively easy. It was a choice for me, so I wasn’t as strict. I would just order a hamburger without a bun and French fries, regardless of what else was cooked in the restaurants oil. For Savannah’s I have to make sure that only French fries are cooked in the oil, not chicken fingers or other breaded items. Contaminated oil makes the fries not gluten-free anymore because of cross-contamination.
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Thank Circe for sharing you story with us. As soon as I find that picture, I'm posting it!
Love,
Sunshine