First I want to start by saying that I find it absurd my computer keeps telling me I’m spelling Celiac wrong. Why? Because I have Celiac Disease. I was diagnosed with it shortly after being diagnosed as Bipolar. Yup, it was a wonderful year. lol
I’ll start with the basics for anyone who is new to this.
CELIAC DISEASE: An autoimmune disease caused by the abnormal functioning of the immune system that produces antibodies against your own tissue.
CAUSE: The cause is gluten. GLUTEN: a mixture of 2 proteins (wheat, rye) that helps food maintain it’s shape, acts as a binder, gives dough it’s elasticity, and the fermentation process of some alcohol.
WHERE IS IT FOUND?: Gluten can be found in unexpected places like cosmetics, medications, some stamps and envelopes, bread, alcohol, cereal, processed meats, and many more products.
It only takes 1/64 of a teaspoon of gluten to cause intestinal damage to a person with Celiac Disease.
How I Learned About Celiac
Some of you may know that I have a twin sister. She had followed the love of her life to California so he could pursue his music career. Things were going well for him but she was having trouble fitting in with the wives and girlfriends. She was homesick and depressed. She also knew that our mom wasn’t doing well.
For a long time she was having severe heartburn, circles under her eyes, urinary tract infections, fatigue, anxiety, and trouble concentrating.
Before she left for California she had seen a doctor about her heartburn and found out she had significant scarring on her esophagus. She chose to ignore it.
A few years went by and they came back home. When she was pregnant with her first child my mother was at her worst. A week after giving birth my mother passed away. Her physical symptoms became too much to ignore any longer.
MOST COMMON SYMPTOMS
- Mouth Sores
- Eroding Tooth Enamel
- Back Pain
- Joint pain/stiffness/swelling
- Burning in the joints
- Low vitamin B12 and D
- Brittle nails
- Burning scalp
- Pale skin
- Hair loss
- Weight changes
- Chronic fatigue
- Sinus pressure
- Stomach pain
- Brain fog
- Short temper
- Pancreatic disease
- Gallbladder disease
- Liver disease
- Ataxia- loss of balance, clumsiness due to damage of the nervous system
- Peripheral Neuropathy- numbness and weakness in the legs, face, arms, feet, and hands
- Acid reflux
- Early menopause
- Swollen Bladder
- Leg cramps
- Muscle spasms
- Bladder Infections
- Blurred vision
- Irregular heartbeat
- High blood pressure
- Low blood sugar
- Night sweats
- Memory loss
- Night terrors
- Suicidal thoughts
So what does all this mean? At first I was like everyone else. I thought that if she ate bread or pasta she would just have problems with her stomach for a few days and that would be it. I was so wrong.
It isn’t until you walk in someone else’s shoes that you truly understand what they go through. It wasn’t until I was on my 6th medication that I told my doctor that my sister had Celiac Disease and asked if it was possible I had it and if so could it be the reason medications were not working.
He looked at me with eyes wide. He told me to get a blood test and biopsy as soon as possible. Unfortunately almost all medications use gluten as a binder. Companies will say that they do not but if it is a generic brand they are not strictly monitored by the FDA.
I came back positive with the blood test and the biopsy. I do not have Celiac like my sister. Mine is more of the Cognitive issues, extremely low white blood cell count, almost no vitamin D, Gallbladder Disease, Chronic Kidney Disease, Early menopause, Osteoporosis, Asthma, Blurred vision, Vertigo, Ataxia, Peripheral Neuropathy, Headaches, Sinus pressure, Hair loss, pale skin, circles under my eyes, brittle nails, back pain, Anemia, some weird IgA Deficiency that no one could really explain but might have to do with the Kidney Failure, and Vitamin D resistant Rickets. I love the last one.
My Bipolar medications probably do not work the way they normally would. I do not absorb anything like a “normal” person. If they have Gluten in them than I’m definitely going to have problems. I also have 1 kidney doing the work of 2. The pharmacy is sick of me asking about my medications because they change distributors constantly. At this point they tell me what I want to hear.
When I see a celebrity making jokes about this it makes me a little angry. A celebrity chef saying “Eat some pasta already!” doesn’t help to inform the public. She didn’t mind making a profit off of some gluten free recipes after though.
When I see a celebrity going “gluten free” because they think it’s healthier, they will lose weight, or are just jumping on the new “trend” I get a little pissed. I wouldn’t make a choice to live this way. Having to read every label from shampoo to crackers is exhausting. I hardly ever go to restaurants and when I do I usually have to get a side salad. They almost always bring it with croutons even though I tell them I have an allergy. When they bring it back I know they just picked the croutons off. I don’t want to make a big deal out of it so I eat it. I know it’s bad but it’s also embarrassing.
I’ve said it a million times, think before you say something about a subject you may not be completely educated on.
I just read my symptoms and I sound like a real catch. lol
If we keep educating ourselves, listen instead of waiting for our turn to speak, and advocate for those who can’t advocate for themselves, maybe we still have a chance.