Let’s Start at the Beginning, Shall We?

It all began when I was born. However, it didn’t rear its ugly head until I was about a year old. Then – when it did make its appearance – no one knew what to call it. Or how to treat it.

As far back as I can remember, I lived a very uncomfortable life health-wise. In those early years it really wasn’t anyone’s fault. Physicians weren’t familiar with celiac disease, let alone how to test for it. When I was a baby I was hospitalized for 11 days for anemia and dehydration. It took four blood transfusions and being fed intravenously to get me healthy enough to return home. The intravenous was done through my ankles. Have you ever heard of such a thing? I haven’t but I do have the scars to prove it.

I was always a short, skinny kid with a bloated stomach. I looked like someone from a third world country. Several years ago I came across a black and white photo of me when I was eight-years-old. I looked like all the other kids in the neighborhood. But zoom in on my stomach and you would think I have a basketball tucked in underneath my shirt. No, that’s not a basketball. It’s just me in my normal bloated state. I showed the picture to my mother and asked, “Does this look normal to you?” She responded with, “Well back in those days who knew?” Oh mom.

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I had a good appetite and ate a lot but never put on any weight and I felt miserable all the time. The breakfast foods my mom gave us kids each morning such as hot and cold cereal, pancakes, toast, muffins, bagels all contained gluten. I also had an intolerance to lactose, which is a common side effect of untreated celiac disease. In those days, like most kids, I drank milk morning, noon and night. Jeez! Talk about adding salt to a wound.

Some of the common symptoms of celiac disease are bloating, constipation, diarrhea, gas, joint pain, inability to gain weight, constant fatigue and frequent headaches or migraines.

According to an article titled Diagnosing Celiac Disease on the Celiac Disease Foundation website, if you have celiac disease, there is a 1 in 10 chance that your children, siblings and parents have it too. Therefore, it’s important that they get screened for it.  People experiencing symptoms should be screened as well. There are several blood tests available that screen for celiac disease antibodies, but the most common one is the tTG-IgA test. This article also stresses the fact that you MUST NOT be on a gluten-free diet when doing the blood test. They suggest that you consume gluten for one to three months and then undergo an endoscopic biopsy without doing the blood test.

Celiac disease is a genetic autoimmune disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. Knowing everything my family knows about this now, we believe my dad and his mother both had celiac disease. Neither one of them had ever been tested but both dealt with stomach issues, depression, and irritability,   I’ve had both of my kids tested. It was confirmed that my daughter has celiac disease. The endoscopy performed on my son wasn’t quite as clear cut. The test was inconclusive. As a result he has continued to eat gluten and will be tested again in the future.

To learn more visit the National Foundation for Celiac Awareness website.

2 thoughts on “Let’s Start at the Beginning, Shall We?

  1. After reading your blog, and saying time and time again “OMG That’s me!!!” I had to leave a comment……thank you for putting it all into words, with concise writing….the journey has been “interesting” to say the LEAST……I have had no bout with cancer, but I am diagnosed gluten intolerant , daughter is diagnosed celiac, brother was, father suffered, but was never diagnosed, etc…..I was(am?) anemic….got down to 7 and had shots, a life long ice chewer, bloated, gassy,joint pain etc…had been given, for YEARS, pill after pill, prescription after prescription, for gastrointestinal issues, then my youngest daughter told me: “Mom, I know what you have…..I have just been diagnosed with celiac!!!”( she was crying, but we have adjusted well in the past 10 years since the diagnosis……We eat gluten free and we are so fine….but accidents happen…had an issue with soy sauce recently–did not know it was in a dish I was served, and I had explosive issues and lots of pain etc….now I definitely ask!!!!). I am positive that my son is intolerant as well but he won’t get tested because he says ( at 43) “but I don’t want that!” hmmmm….we have other autoimmune diseases in our family that have shown up!! His son has Type 1 diabetes(diagnosed at age 13)….we have lactose intolerance in the family( eldest daughter), and the youngest of our children is the one diagnosed with celiac. My poor dad suffered “indigestion ” for years!!!! My poor brother suffered with gastro issues and dermatitis herpetiformis!!!! I could go on and on…..but happily am feeling wonderful on the “diet” of GF only….Thanks for sharing your blog and putting into words what many of us have gone thru….. p.s. BTW, the pictures of me at age 5 are of a skinny kid with a bloated tummy JUST LIKE YOURS!!!! was funny to see such….thanks, Sincerely, Carol

    1. Carol, I’m so happy you shared your experiences with me. It is one of my goals on this blog to connect with other people who have dealt with some of the same things I have for so many years. Isn’t it sad that our parents’ generation didn’t know anything about celiac disease? My father lived on antacids, was very moody and depressed for all of his life. Hopefully, now that you’re eating gluten free and you’ve had iron shots your hemoglobin is back up to a good number. I have never seen another child with a bloated stomach like mine. THANKS ESPECIALLY FOR SHARING THAT TIDBIT. I told my family members that and they couldn’t figure out why I was so excited. But I know YOU get it. Good luck on your gluten-free journey!

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