Undetected Celiac Disease was Silently Killing our Child

Our son Cesar Michael is 14 years old. He was diagnosed with Celiac Disease on September 20th, 2010 after an intestine biopsy confirmed it. Undetected Celiac Disease was silently killing our child.

He was always very healthy until one day, while we were in church during mass, he had an epileptic seizure. We immediately took him to the hospital for testing and analysis. Unfortunately, after several months of testing, doctors did not find anything wrong. However, he had at least one epileptic seizure a year for the next 2 years.

His pediatrician, Dr. Mo Tantawi, was very concerned about the situation. He suggested making an appointment with a Pediatric Neurologist. We made an appointment with Dr. Romana Kulikova, MD. who was determined to find out the causes of his epilepsies. After many brain testing performed, she said that everything was normal.

Celiac disease can present several symptoms, perhaps we will never know if epileptic seizures are one of them.

According to the National Digestive Diseases Information Clearinghouse (NDDIC), they state that someone with celiac disease may have no symptoms but a person can still develop complications over time. Some of the complications may be malnutrition. Malnutrition can lead to other major complications such as osteoporosis, liver diseases, intestine cancer, miscarriages, and anemia.

We also noticed that he just to sweat a lot especially at night. We, sometimes, just to send a small towel with him to school.

Towards the end of July, 2010, when was 10 years old. Our son Cesar Michael started presenting other symptoms. Anything he ate did not agree with him. He had lost his appetite. He had difficulty going to the bathroom. Again, along with his gastroenterologist physician, several blood tests were performed. Our son started losing weight tremendously. In a matter of a month he had lost about 60 lbs. Our son looked really skinny and pale. We really thought that we were going to lose him.

His pediatric gastroenterologist, Dr. Erena Treskova, immediately performed a biopsy of the small intestines. To our surprise, she found out that he had celiac disease. She stated that the villi, a fingerlike projection of the lining of the small intestine, were damaged.

A person with damaged villi is unable to absorb the nutrients in the food. If celiac is untreated then the small intestine can present inflammation which can cause the villi to shrink and flatten.

According to the University Of Maryland School Of Medicine, after a celiac patient goes on a gluten-free diet, the villi will be reformed. They also state that the intestine is an organ which renews itself every 3 days.

After Cesar Michael was diagnosed with celiac disease, and going to a gluten-free diet, he is doing much better. We have joined a celiac support group and read gluten-free diet books written by people that are dealing with celiac disease. It has been a big change in our lives.

In summary, if celiac disease is left untreated,  undetected celiac disease can silently be a killer.

4 thoughts on “Undetected Celiac Disease was Silently Killing our Child

  1. I’m impressed, I have to admit. Rarely do I come across a blog that’s both educative
    and amusing, and without a doubt, you have hit the nail on the head.
    The issue is something not enough folks are speaking intelligently about.
    I am very happy I came across this during my search
    for something concerning this.

  2. I am very upset with doctors. i do not know why doctors do not test for CD in the very beginning of any health problem, as it has so many symptoms and often none. being that one in every one hundred and twenty people are likely to have it, all people, i believe need to be tested for CD.
    i spent 20 plus years trying to figure out what was wrong with me. i had mild symptoms all my life; teacher, doctors, friends, all said I was lazy.
    i was not diagnosed till 55 when i was nearly dead. shame on doctors for not testing early. a year and a half later, I am still very ill with other autoimmune diseases.
    my x has CD, i have CD, but my son does not. his doctor told him he saw no need to test the grandchildren unless they show symptoms. POPPYCOCK! Doctors need more training but that will not happen until big pharm develops a pill, THEN the drug reps can help teach the doctors about CD. shame our our USA medical.

    • Thank you for your post. Years ago I brought my 2 year old daughter to a GI, who practiced at a major NYC hospital with a prominent celiac disease center. He told me she was just a “constipated kid”. It was so frustrating. Her pediatricians at the time brushed it off. She continued to feel unwell, then started getting urinary tract infections. No one, including the GI seemed to know that constipation is also a symptom of celiac. They didn’t even bother to check to see if she carried the genes. It took 6 years to get a diagnosis. I had changed pediatricians again. Her doctor actually listened to me. He immediately suspected celiac. He ran bloodwork which showed she was anemic and had high antibodies. We followed up with a new GI and had an endoscopy. So annoying, she is very small for her age. Lost all of those years of growth.

      • I am so sorry to hear about your case. I know how you feel. My wife and I felt the same way for my son. It just felt that we left him down all those years while the sickness went undetected.
        Thanks for sharing your story with everyone and I wish your daughter and your family the best.

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