There are many autoimmune diseases that are present in the world and sometimes when the names are read it makes you sit and wonder what they are and what causes them. Internationally, May is celebrated as Celiac Awareness Month and there are many questions about this disease.
NatVid Life&Style Magazine had a chat with Celiac Awareness advocate Ms. Shanee Black who has decided to share her efforts to raise awareness and discovery of the autoimmune disorder with us. Our conversation went a little something like…
L&S: What is your understanding of Celiac disease?
SB: Celiac disease is an autoimmune disorder triggered by a protein called gluten. Gluten can be found in wheat, barley and rye. Some of the side effects for someone with this disorder who has been exposed to gluten can be; loose bowel movements, fatigue or tiredness, brain fog, growth deficiency in height/ become stout. Persons with Celiac Disease pretty much needs to avoid gluten at all costs, and they can go on to live a healthy life.
L&S: How were you introduced to Celiac Disease and awareness?
S.B: I learned about it [Celiac Disease] through my son’s (Rein,) diagnosis. I believe it took nearly six months for him to be properly diagnosed. During the summer of 2019, he became extremely ill; his stomach became bloated, under his eyes started to darken and he was losing his hair. We did several tests here in the BVI and none came back with an adequate diagnosis. The doctors suggested changing his diet, but we were never provided with a nutrition plan.
At first, we thought it was his milk consumption. So, we took the decision to remove milk from his diet and decided to go wheat based. This worsened his condition and he pretty much collapsed at the end of the year. He became very weak, he could hardly eat, he was walking around staring at everyone seemingly helpless.
The doctors were unable to figure out what was wrong, but they mentioned Celiac as a possibility, and I quickly began my research. The decision was made that he should be transferred to Miami. While in Miami, he underwent some serious procedures to ascertain a prominent diagnosis. When it was discovered, he had Celiac, a nutritionist was provided and from then on it has been a never-ending journey in understanding the disease.
Throughout all of this, I learned that although a product might be marked gluten-free, it could still be made in a facility that produces wheat and can equally be as harmful.
L&S: Is Celiac hereditary?
S.B: Yes, it is. I’ve also seen research that suggests it can be an after effect of vaccination in babies.
L&S: How does your family and friends assist, understanding that this is a new predicament for you all to explore and learn from?
S.B: They have been very helpful especially his grandparents, his fathers’ mom has an entire shelf for him with his own pots and cutlery, foods and snacks and by my mom he has his own pantry area. So, he is very comfortable, and they always ask questions before giving him anything that is out of the ordinary.
L&S: Have you had to change anything about your life and your daily efforts to make things easier for him to cope with the changes to his diet, is his diet the only thing you had to change?
S.B: I would say yes, pretty much but like last year we got it right because we had to take a lot of stuff out of his diet, he can’t eat corn, eggs and peanuts. That sort of life change was very difficult for me because that is the sort of things that I would bring home regularly. I try my best to stick to his diet, but it is a challenge.
L&S: What is it like for him at school, how well do the teachers handle this lifestyle change that your son has?
S.B: They are very good at handling things, they are very strict, and they manage the toys he receives during parties and the snacks in his party bag as there are some candies that he cannot eat.
L&S: What is it like for travel?
S.B: That is the headache right there. But I normally find a hotel with a kitchenette which is not usually easy. We often aim for an Air B&B or recently, apartment hotels. The day of travel, I normally cook and ensure the food stays fresh. The goal is to pack at least two meals, and I feed him around 11 a.m. and 2-3 p.m.
We had an experience where our flight got delayed for a while and we arrived in Miami at midnight. I ran out of food, and he was a bit irritable, but he toughed it out and I was happy he was bearing with the struggle. He used to be a picky eater, usually craving only pasta, but as we explore, he is beginning to have sandwiches and more.
L&S: What do you think are the psychological effects of this change to his diet?
S.B: Right now, he finds it troubling when I am eating something, and he would like to try it or have some but can’t. He doesn’t understand the whole gluten thing, so I can understand his frustration and believe that in the future that it can also be a headache. So, I am hoping that more places in the BVI can start to cater to gluten free dieters. It can be as simple as a bakery, some where we can just sit down to dine. Not many places provide sugar free beverages or cater to persons with Celiac autoimmune disorder.
I have been following a support group that is known globally in places like Florida and Europe who cater to gluten free dieters even cruise liners. Recently I have discovered that Disney World has several restaurants that cater specifically to persons with dietary restrictions, so there is hope on the horizon.
L&S: What were your disappointments of your discovery of the disorder in your son? What were your onset thoughts when you got the news of what he was experiencing?
S.B: I was just so happy that it was something that you could just avoid and he would be okay, I am not sure if you heard about baby Locas who was diagnosed with Cancer. Rein was diagnosed around the same time, and I began thinking, does my son have cancer? When Locas’ mom started sharing his experiences and symptoms, I began to realize that my son had similar symptoms and his body was starting to shut down. I became so afraid. I was just happy that it wasn’t something extreme.
I also like to be positive. If you were to do some deep research, Doctor Sebi had a special dietary plan to live a long healthy life and it doesn’t include wheat. He would say stuff like wheat isn’t good for the gut. He also suggests that we shouldn’t eat meat. My son doesn’t eat meat, he would also suggest that sugar is crack for the brain. I was just so happy that it was easy as us having to avoid all the unhealthy products. Everything happens for a reason. I just turned the negative into a positive. It was like seeing a swan transform when his hair started growing back and he began to put back on the weight and his skin started glowing.
L&S: What advice would you give to another parent whose child is faced with this condition?
S.B: I would start with the shopping advice, suggest investing in a cookbook, join support groups, stay positive and creative. It’s a rare disease, but take time to speak about your experiences so that we can all learn from them. It gets easier with time and practice.
L&S: Is there a foundation here that recognizes this autoimmune disorder?
S.B: No. The first time I advocated for it is when I would say that people started becoming aware.
L&S: Can you see one being formed after the awareness that you have created?
S.B: I wanted to do it, but I have been caught up, and to be honest the negativity of so many of the people here, is a turn off. I was offended on a personal matter. There was this one girl that advocated with me hard and then blasted one of my businesses. I realized that I had to take care for my mental health and his as well. I took a step back, but I will continue to work more silently in my efforts to raise awareness.
In a small community such as ours, we must be our brother’s, and our sister’s keepers. All families are intermingled and we are now more or less carrying the same traits in our DNA. Coming together to raise a healthy community is key!
