Hello Maxyne

View Original

Celiac Disease: A Gluten-Free Journey

I’ve always had problems with food. I was a “picky eater” and would have lots of rules and stipulations around mealtime; only eating off of certain plates, rituals I would go through to eat certain foods, being rigid about small changes.

Who knew bread would be the enemy?

My maternal grandfather, or “Pop Pop” got me a Popeye the Sailor Man meal set that included a matching plate, place mat, fork, spoon, butter knife, cup, etc. He passed away when I was about 2 years old, but I remember still using the set, and ONLY this set, well after it. The only time I didn’t eat off of this plate was when I ate off of my special “pancake plate” that was divided into three portions like a Peace Sign; one for the pancakes that my mum would make silver-dollar-sized to fit, one for the syrup, and one for fruit.

I can VIVIDLY remember the meltdown I had when my dad accidentally put the set through the dishwasher, and my mum coming home and freaking out, opening the washer mid-cycle to a melted mess. I stopped eating, until my mum started making me pancakes for every meal. Eventually the set was replaced with a Lion King set, that came complete with removable “stickers” for the place mat. All was right..

Another meltdown of sorts happened in Kindergarten, when the school cancelled French Toast Sticks Day and replaced it with some other meal. I stopped eating again. In fact, I sat catatonic in my chair and didn’t do anything, and the school had to call my mum to come get me and she had to try and replicate the sticks at home.

Once, my uncles were offended that I would rip the crusts off of my pizza and tried to make me eat them. Another meltdown.

As a teenager and modelling, I had a variety of food hang-ups. I would do a lot of “juice cleanses” that were basically just excuses not to eat anything before a show. I would also dabble in being Vegetarian, Vegan, Macrobiotic, following the Blood Type Diet, etc etc. I couldn’t find anything that stuck with me or made me feel as good as just juicing for a week.

Looking back, it’s obvious that I felt so amazing because I wasn’t eating Gluten.

Maxyne in Wales, 2012

From 2010-2011, I was trying to have a baby with my partner. I conceived very quickly, but then would soon suffer a miscarriage. I tried three times, and it stumped all of the doctors because they couldn’t find the cause.

In 2012, I went on a road trip through the UK. The first thing we did was buy fresh baked bread at a bakery outside of London, and some handmade butter to go along with it. Between meals, this was our snack. At the same time, a curious itchy rash developed on my hands, that I attributed to over-washing my hands and not enough lotion. By this time, we were going to pubs and I was ordering fish n’ chips and beer, which I had NEVER really drank before this.  After a couple of days, lotion wasn’t helping, and the itching had spread everywhere. I felt like I was being eaten alive by ants and burning, and a rash only appeared where I scratched.

Maxyne’s Gluten / Celiac Rash, 2012

By the time I came home, I was freaking out that it was bedbugs, scabies, or some crazy parasite. I couldn’t sleep and had to drop out of school. I was on steroids, sleeping pills, antibiotics, and using a steroid cream. No doctors could figure it out. It was also all over my face, and one dermatologist said it was “acne” - another said eczema, another psoriasis. I had to tape oven mitts to my hands and couldn’t go outside in the sun at all because of the high dosage of steroids I was taking.

Finally, I turned to the internet and searched for “all over body itching no rash” in Google. It came back with Celiac Disease. Come on - I’ve been eating bread my whole life, I’m not sick to my stomach, I’m not short, I’m not underweight. But then looking down the list of symptoms; B12 deficiency, anemia, miscarriages, bags under the eyes, chronic pain, brain fog, this non-rash being Dermatitis Herpetiformis (aka DH, Duhring's Disease, or the “Celiac Rash”), I realized this was the answer. This is why I ripped the crusts off of my pizza, why I always took ½ off of my hot dog buns, why I disliked sandwiches, why every time we’d go to Olive Garden I’d get horribly sick (I mean there’s probably other reasons). My primary care doctor was skeptical, calling Gluten-Free a “fad,” but ordered the tests anyways.

All the food I gave away to my friends after getting diagnosed with Celiac Disease, 2012

She called me the next morning at 6am from her personal cell phone, and I woke up to “DON’T EAT BREAKFAST!!!” I was diagnosed with Celiac Disease. After two weeks of eating Gluten-Free, the rash went away. No steroids, no creams, no pills. Now it only comes back if I accidentally ingest Gluten. I had found my answer.