August, the month of start of festivities. Life was flourishing as right as rain. Raksha Bandhan was on its way and we had plans for Nanihouse for all the Masti and fun. Both my kids(Y my elder daughter and D my son) were luxuriating in their school and eagerly looking forward for the festival and the gifts along with best of Mithai’s and yum food. I was promoted to Professor from Assistant Professor in my College. Family life was well settled when suddenly one day I got a call from my son’s school. The teacher said that your son D is suffering with fever, please take him back from school. I pushed off from the college to my earliest and reached the school. We went straight to our pediatrician, she gave us the medicines and we were back to our home sweet home.
It was almost 3 days and there was no improvement in my son’s condition. So we again went to the Doc and she changed the medicines. But even after that there was no betterment, his fever was not going down and he was not eating anything. Both me and my husband took a week off from our work, as the Pediatrician said this may be typhoid and we need to perform Ultrasound for this condition. And every second day my child had to go for an ultra sound. Even after 15 days of fever and 7 ultrasound and unlimited medicines there was no result. My son was getting weak and we all felt so hopeless and defeated. He got extremely ill in the span of almost one month, he had a swollen belly and his face was getting thin but the doctors had no clue. Then we took him to another doctor and he got the blood test done. In that report also everything was in range with hemoglobin a little low. The doctor said the medicines are good but don’t know why the child is not reacting. D was put through test after test and ultimately, misdiagnosed at every turn. We desperately tried to figure out what was making him feel so sick. The fear of the unknown and frustration that came along with each misdiagnosis began to take its toll as his health continued to decline. This is when the seemingly infinite number of doctors’ visits began. It was a dark time for everyone in the family. We practically lived in doctors’ offices – something that no child and parents should ever have to experience. Finally, after visiting many specialists and exhausting every resource that we had, a doctor described the symptoms of something called celiac disease and recommended to get Ttg tested.
Ttg (tissue trans glutamiase) test is a simple blood test done to diagnose Celiac Disease. We had never even heard of Celiac Disease. By that night we had goggled every document known to man on Celiac Disease – an autoimmune disorder in which the ingestion of gluten by way of wheat, barley, rye, and sometimes oats. Condition in which the ingestion of gluten leads to damage in the small intestines. It impacts the body’s ability to absorb nutrients.
It took more than a day to get the result of blood test.. The result was positive and everyone in the family was shaken. But the worst was still to come. The test said that the Ttg is very high and an endoscopy with small bowel biopsy needs to be done as soon as possible to confirm the test result. Standard endoscopy reaches the duodenum where Celiac is most commonly found. Although it was an exhausting and tiresome process, we were fortunate to get a concrete answer as to why he had felt so sick for so many days.
The food restriction took everything away from that moment of time and August was all gone in diagnosis. The Raksha Bandhan was celebrated but at our home with only homemade delicacies in a gluten free Kitchen. Gifts were exchanged but the enthusiasm was much low. It was really hard for us to accept and make him understand that why he is being restricted. Because he was so young to know about his own disease. But life goes on and so did we. and we finally accepted the fact of our son being a Celiac. A challenging life was about to start for my 4 year old D.
Before I end, I want to acknowledge that things could be so much worse. He has a disease that is managed through diet. He does not have any life threatening disease and I am so grateful for that.
That was my A for Accepting August: Parenting tale with my celiac child for the blogchatterA2Z challenge. And would continue my parenting stories to help everyone in need for growing up with the Celiac disease. I would like to know about your or your loved ones Gluten Free version, as its always incredibly beneficial to connect with others who share similar experiences.