My daughter was recently diagnosed with Celiac Disease. I have been a little surprised by how many people don’t know what it is. Since this has been something that consumes my days right now, I thought I would share a bit about it. This is for anyone who didn’t have any clue that it exists, knows someone who has it but is it not that familiar, or who would like a way to share the basics about Celiac Disease with others.
I decided to just google “What is Celiac Disease” and see what comes up. Right at the top is the definition, it’s a little vague, but here it is.
“A disease in which the small intestine is hypersensitive to gluten, leading to difficulty in digesting food.”
I think we could benefit from a bit more information, so here is what I found with just a little more investigation.
From mayoclinic.org “Celiac Disease is an immune reaction to eating gluten, a protein found in wheat, barley, rye….eating gluten triggers an immune response in your small intestine. Over time this reaction produces inflammation that damages the small intestine’s lining and prevents absorption of some nutrients.”
Kind of a big deal.
Here are the symptoms, this is important because there are way more than you may suspect.
“Although the classic signs are diarrhea and weight loss, MOST people with Celiac experience few or no digestive signs or symptoms…20% of people with Celiac have constipation and 10% are obese. Other symptoms include: Anemia, loss of bone density, itchy, blistery skin, damage to dental enamel, headaches and fatigue, nervous system injury, joint pain, reduced functioning of spleen, acid reflux and heartburn.”
If you have just diagnosed yourself with Celiac Disease, me too. If you are thinking that these symptoms can be applied to almost every health ailment known to humankind, I get it. My point is not to overwhelm you, but to impress on us (because I didn’t know all this either) that Celiac Disease is more than just shopping in a different section of the supermarket, it’s a full body, all encompassing issue that needs careful attention.
This next bit was so surprising and fascinating to me that I am still processing it. “As many as 75% of children (let that sink in, 75%) with Celiac Disease are OVERWEIGHT or OBESE. Digestive signs and symptoms are experienced by (ONLY) 20%-30% of children with the condition. Symptoms of infants include: Chronic diarrhea, swollen belly, pain, failure to thrive or weight loss. Older Children: Diarrhea, constipation, short stature, delayed puberty, neurological symptoms; ADHD, learning disability, headaches and lack of muscle coordination.”
Are you thinking what I am thinking??
About 2 years ago my daughter went from pure muscle to pretty soft. Not overweight or obese, but there was a drastic change from the girl who had an 8 pack (no joke) to one who had little love handles and a squishy tummy. I knew something wasn’t quite right, but she was already on a “gluten free” diet. Now I am understanding a bit more. She has lost 5 pounds since going on a real gluten free diet.
This information is from The Celiac Sprue Association website csaceliacs.info I hope you’re not getting bored, because some of the next information is pretty interesting.
“Celiac Disease (CD), also known as Celiac Sprue or gluten-sensitive enteropathy, is a genetically linked autoimmune disorder that can affect both children and adults.”
About 30% of people carry the genes for Celiac and 1% of the population currently have been diagnosed with the disease. I am predicting that will grow, just a hunch. I didn’t have any idea if 30% was a big or small # in the area of chronic disease genes (yeah, I am not a scientist), but our G.I Dr. cleared that up, it’s huge.
“In people with CD eating certain types of protein fractions, collectively called gluten, sets off an immune mediated response at the site of the epithelial cells. This abnormal cellular level activity can AFFECT ALL ORGANS.” (emphasis mine)
So now I feel more justified in getting that tightness in my chest when my child wants a piece of a friends’ candy bar.
This is a big deal.
My plan is to write 2 other posts on Celiac Disease, one “what do we do now?” and one like “what to say to people that have chronic disease”
What chronic illness, disease, pain, condition do you wish people knew more about???