My Celiac Cousin

Image courtesy of Vlado / FreeDigitalPhotos.net
Image courtesy of Vlado / FreeDigitalPhotos.net

Meet Thea!  Thea is my cousin.  She’s very creative with multiple talents, she’s gorgeous, she’s loads of fun . . . and she has Celiac Disease.  Thea is the first of my family members to be tested and diagnosed with Celiac.  The University of Chicago Celiac Disease Center states that the 2nd degree relatives of a Celiac have a 1 in 39 chance of also having the disease (1st degree relatives have a 1 in 20 chance).  Thea is my “1 in 39.”  As you can imagine, I feel very connected to her knowing we are sharing this path.  When I learned about her diagnosis, I reached out and asked if she would be willing to tell her story here on the blog.  She is 21 and was diagnosed at the age I believe I first developed the disease.  I felt her perspective, being diagnosed earlier, would be a great way for readers to learn about Celiac from another angle.

I'm not really much of a blogger, but my cousin Angie asked me if I wouldn’t mind writing a post for her blog about my recent Celiac diagnosis.  Looking back I exhibited several symptoms of Celiac, however I would never have connected them or even known this disease existed.  I have been having irregular menstrual cycles from the time I was 14.  I went with my mother to several different doctors, but most of them were more concerned with treating the symptoms, not finding the cause, which we both found frustrating.

In 2010 I was diagnosed as hypoglycemic, which required me to cut out sugar, white flour, alcohol, caffeine and tobacco.  This helped with my migraines and low energy levels but I continued to have low iron, weak bones, and irregular periods.  I attributed the weak bones to my dislike of dairy.  I never really drank milk as a kid, probably because I grew up in Egypt and the tetra packed milk tasted weird to me.  As a dancer I experienced several bone related injuries including stress fractures in my ankle and hip, after that I started taking calcium supplements.  I also experienced an outbreak of acne in my junior year of college.  I thought, “I am an adult, I never had acne as a kid, what is happening to me?”

Then this past Christmas, my mom shared Angie's Celiac diagnosis and I asked my doctor if I could get tested.  The test was positive and since then I've been on a strict no-gluten diet.  The diet has certainly been an adjustment.  On the whole I feel much healthier, but I still struggle with irregular menstruation and my doctor believes I will suffer from early menopause.  Overall, I feel lucky to have caught it this early. I'm incredibly impressed with how Angie has handled this adjustment and so glad that she got the word out so I could go get tested.

I asked Thea a few questions about her journey so far.  Read on to learn what it is like to navigate Celiac fresh out of college.

1)  How do you feel about this diagnosis at your age?
I feel as if it's something that forcibly matures you, at least a little bit.  I've never been a picky eater and now when I go out with friends I have to ask waiters a million questions and I always feel really bad about it.  I have also become a label reader, which I never was before.  I tried not to obsess over what I ate, because as a dancer I saw too many of my friends doing that and it led to eating disorders.  I always had an attitude that I would eat healthy and exercise often.  I guess my friends and I kind of see label reading as an obsessive mom characteristic (sorry to all the moms who are label readers).  Now when I grocery shop and I'm constantly looking at the ingredients on everything, I feel a little self-conscious.

2)  Did you have an endoscopy to confirm villi atrophy in the small intestine or did you go off of the blood test alone? 
To be honest I hate doctor’s offices and needles and the first time I ever had blood drawn I hyperventilated and passed out!  So I just went with the blood test.
(Endoscopy confirmation is the gold standard in diagnosis, but I asked Thea this question for a reason.  I believe the endoscopy process, whether due to fear, financial costs, scheduling, etc, prevents a lot of people from accepting their probable Celiac status and moving forward with a new, healthy gluten-free life.  I’m proud of her for being aware of how much invasive testing she was willing to undergo and then moving forward on her Celiac journey.) 

3)  What kinds of improvements have you seen in your health since going g-free?

Well my favorite improvement is my skin!  It's so much healthier!  It took about 3-4 months of g-free eating to get clear skin, but well worth it.  I have SO much more energy, which is awesome.  Sometimes I would get intense abdominal cramps and I had no idea why.  I don't ever get that anymore.

4)  What does your diet look like now? 
I used to be a vegetarian, something my little sister and I started three years ago for Lent and then just stuck with, but since going gluten-free that was just too hard.  I eat a lot of fish and chicken and I bake with a variety of gluten-free rice flours.  I eat tons of fresh fruits and veggies.  Recently my boyfriend found gluten-free burger buns and I had a cheeseburger for the first time in forever.  It was amazing!  However, then he went grocery shopping on his own, and bought those pre-made burger patties.  Turns out they used flour to get the ground beef to hold together better and he poisoned me on accident!  Now I don't let him grocery shop without me.

5)  How supportive are friends & family?

My roommates last year meant well, but didn't really understand what gluten was and I realized after about a day and a half, I couldn’t trust what they said (or eat anything they made unless I helped them do it).  One of them went grocery shopping and came back with whole wheat bread and said, "This is gluten free right?"  The most frustrating was that when we started living together we had an open fridge policy, everyone was welcome to everyone's food, but after getting diagnosed I couldn't eat most of what they would buy as it was usually over-processed and contained gluten.  However, they would eat my home-prepared gluten-free stuff over their own food.

My family, on the other hand, has been awesome about it.  Every year for my dad’s birthday we usually go get a slice of every kind of pie at the nearby Perkins and we pass them around taking bites.  We couldn’t do that this year as they wouldn’t be gluten-free, so we made our own pies.  My mom made pie-crusts with different kinds of gluten-free flours and then made all the fruit pies, while I made the cream ones.  It was really great and I got to try out all kinds of different flours!

6)  I am glad sharing my experience lead to you getting an earlier diagnosis.  Has watching my journey helped you (that’s sorta’ my thing!)?
Yes!  Your whole attitude towards it!  Instead of treating it like a burden or chore (which I sometimes see it as), you took it as a challenge.  You experiment a lot with food and don't seem to get discouraged.  I'm so tired of eating rice like mush instead of pasta!!  I tried to make one of my favorite foods (Tabouleh) yesterday substituting quinoa, instead of bulgur wheat and it was okay, but I'm so sick of substitutions!  I like looking at your blog, because it seems like you focus more on what you can eat than trying to recreate what you used to eat.  I need to think more like that.  I keep trying to eat the way I used to, just without gluten, and instead I think I just need to find new favorite things.
(A few things about Thea’s answer here . . . 1)  I’m totally not a Celiac robot, I get discouraged too.  2)  She’s sick of substitutions and wants to find “new favorite things.”  You guys know what that means, right?  I gotta’ get this lady “Paleo-ized!”  LOL!)

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3 thoughts on “My Celiac Cousin

  1. Thanks, Angie, for encouraging Thea to guest blog. I know she feels self conscious and is a person who doesn't like to make waves so it was helpful to me to read how she is handling encounters. Thea I'm realizing that your acne and stomach issues are being experienced by Sophie and at a similar age. I think it's smart for me to have her tested too.

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  2. Do it Dawna, I feel it's much easier to learn young before to many unhealthy habits start. Thea have you been tested for endrometriosis? With my girls it has turned out all have it and I recently found out that I had it. I also did the early menopause and actually didn't even know I had gone through it because I kept having irregular bleeding. It turned out that my uterus was full of tumors and they were bleeding. When I had my hysterectomy the doctor couldn't find my ovaries because they had already shriveled up. Crazy what the diseases do to our bodies.

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  3. Thank you for the interview Thea! I'm sorry to hear you have this disease and you're very courageous talking about it. I found making different dishes instead of only using substitutions when changing food habits to gluten free is quite helpful. There's another thing I wanted to tell you, and that's I was getting into early menopause (I'm quite a bit older than you though) and found out later it was because of my thyroid. Your thyroid has probably been checked, but just in case it hasn't it would be worth it to have it checked (menstruation problems can have a lot of different causes of course, I just needed to mention it in case it has been overlooked). All the best and good luck on your journey!

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