Monday Moxie: National Celiac Disease Awareness Day

by Alice Shaffer

In recent years, many adults and children have been diagnosed with Celiac Disease or Gluten Allergies & Intolerance.  The question remains though what is Celiac Disease? What is this Gluten allergy all about? You often hear those who have it talk about not eating wheat products and so forth.  I have often thought –give up wheat products?  What would I be eating then? How are you diagnosed? Why are so many being diagnosed now?

I discovered that September 13, 2010 is National Celiac Disease Awareness Day.  It is celebrated on this day because of Dr. Samuel Gee. He was the man responsible for first discovering a link between celiac disease and diet.  “If the patient can be cured at all, it must be by means of diet.” Dr. Gee was born in London on September 13, 1839. He was a pediatrician and physician.

Celiac Disease is an autoimmune disease that is triggered when someone ingests gluten which is a protein that is often found in wheat, rye and barley.  The small intestine contains villi.  The villi are tiny almost finger-like strings that capture nutrients as they enter into the intestines and are absorbed by the body.  Those with gluten intolerance and celiac disease’s villi don’t absorb the nutrients properly. It causes the small intestine to become inflamed which makes the millions of villi shrink and become flat. Celiac Disease affects 1 in 133 Americans!  That probably means you come in contact with at least one person during you day that has Celiac Disease.

The symptoms are wide ranging. This attributes to the difficulty in diagnosing someone with Celiac Disease.  Some of the common symptoms are diarrhea, weight loss, lack of nutrition absorption, fatigue, gas, bloating and abdominal cramping.  It is one of the most common hereditary diseases.

I spoke with Toni who has an 11.5 year old daughter who was diagnosed at age 4 with Celiac Disease. I asked her how they were diagnosed, some links or books that she could suggest.  What I discovered from the emailing with her is that I still don’t know that much about Celiac Disease.  I had no idea about the growth factor in children being a symptom. I thought this was important for professional nannies and other parents to know in case you may experience a similar situation.

As for diagnosis, my daughter was officially diagnosed when she was 4 but it was a long road getting her diagnosed. When she was around 2 her growth slowed down. The doctors weren’t concerned but I was since she was always in the 90th percentile and then she dropped to the 25th. The practice had 4 doctors and the last doctor we saw flipped when she saw how much she had fallen on the chart and suggested an Endocrinologist. We went and they took blood. Her growth hormones were “painfully low” and they ordered an MRI to rule out a pituitary tumor. No tumor was found so they did more blood to check her liver function. That was perfect. They wanted me to give her growth hormone shots but I refused without a good reason. Yes, her numbers were still low but I wasn’t about to shoot my baby up with hormones without a reason. She did have a growth spurt which bought me some time but after a year and a half of going back and forth, they were insisting on the shots and I was still refusing. The doctor asked if they can take more blood to rule out Celiac Disease. He said it was a wheat allergy and sometimes it makes kids stop growing. I didn’t have a problem with more blood tests (although my daughter did…lol). Sure enough the number came back through the roof. They did an endoscopy to confirm it and her villi were indeed atrophied so we started her on the diet right away. She is now 11 1/2 and doing great. She is just below average on the charts now and has been that way since going on the diet.

My advice to newly diagnosed people, read up on as much as you can. There is gluten hidden in so many things that you don’t realize. Even having a jar of peanut butter can be dangerous if you use the same knife to spread it on regular bread. A crumb could set off a reaction. Thankfully, my daughter isn’t that sensitive and that I attribute to her being breast fed until she was 2. The doctors don’t think that had anything to do with it but I think they’re wrong

Please let others know also that Celiac has many different symptoms. Not everyone will have the same symptoms. My daughter never had the typical symptoms at all. Seven years later and she still doesn’t even get the same reaction if she does ingest gluten. It’s a crazy disease but it’s easy to live with once you get the hang of it.

Alice: So she has various reactions if she eats gluten then? Is a gluten allergy and celiac the same?

Yes, she does. Sometimes she vomits. Other times she will get ether diarrhea or constipated. When she was little, she would get hyper. Sometimes, she doesn’t get a reaction at all! I once gave her her brother’s sandwich in her lunchbox. She ate half of it before she realized it couldn’t be her bread…it was too good! Lol. She didn’t get a reaction to that. Like I said, it is a crazy disease.

Technically, it is not an allergy since it is an autoimmune disease. The body sees the gluten as an invader and attacks the intestines and damages the villi. Saying it is an allergy is just easier than explaining that. Nobody with Celiac will ever have an allergic reaction like people with other food allergies will.

I hope that you learned some more about Celiac Disease then you did before today’s email exchange with Toni.  For more information on Celiac Disease please check out

Celiac.com Toni has found that this site been consistent with giving correct information and news.

Celiac Sprue Association

Celiac Disease for Dummies

The Complete Idiot’s Guide to Gluten Free Eating

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