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Monday, November 3, 2014

Our Journey

My youngest son was diagnosed with Celiac in June of 2013, shortly after his 9th birthday. I was both relieved and scared by the call from the Dr.'s office telling me that the test results were in and confirmed her suspicions of Celiac Disease. We had been searching for an answer for 7 years, which is the average length of time that a Celiac goes undiagnosed.
Before the diagnosis, my child had been seriously ill for much of his life, and I don't need to tell any of the parents reading this how heart wrenching and frustrating it is to know that there is something wrong with your baby and feeling that you can't make it better. But, I suppose I should start at the beginning...
 The first time my son had a reaction was shortly after he began eating table foods with the rest of the family. It was pizza night, and after he had a tiny slice of pizza, he broke out in hives. I called the Dr. and was told to give him Benadryl, as he was probably allergic to the tomato sauce. so we kept him away from all things with tomato, until one day,he got some tomato and had no reaction. I thought that his allergy had gone away.

All through his toddler and pre-school years, I would have him at the Dr.'s office or ER for severe diarrhea and vomiting, where they would tell me that it was just a "tummy bug, give him this or that", but he would get worse, because of course, many of the meds contained gluten. At one point, when he was about 4, he had diarrhea so bad for 3 weeks straight, that his little bottom was raw and bleeding and he looked malnourished. My child was wasting away, sunken eyes, bloated belly, swollen joints and so pale. I was in to the Dr.'s office at least once a week in the course of that month, begging them to test him for something, ANYTHING...they checked for C Dif and it was negative, so they sent us home and we rode it out. At one point, I was terrified that it was cancer, or some other horrible, life threatening disease. I asked about Chron's, at one point after researching all of my son's symptoms, but was brushed off. I started thinking that they had all labeled me as a hypochondriac mom.

 My son missed so many school days each year that I would get letters stating that social services could be called, but I was always getting calls to come get him from school because he couldn't control his bowels much of the time. Strep throat at least 3 times a year, very small for his age, tooth discoloration, joint pain,anxiety/depression,migraines,excema and STILL our Dr. wasn't doing any testing. I finally made the decision to take him to someone that had never seen him before, and after she heard her our story, she said that she felt sure it was either Diabetes, Chrohn's or Celiac.

A simple blood test confirmed Celiac.

My son's new Dr. sent me all the information she thought I needed and even gave me info on support groups. I was overwhelmed, but determined to get my son to feeling well, and gave it my all...there were so many changes to be made, but we did it and within 3 weeks, I saw a huge difference in my son, In just a little over a year, he has grown a lot and rarely complains of aches or pains. I am happy to say that he has only been glutened once ( at a school party) on my watch :)
If you are newly diagnosed, I will tell you honestly that it is mind boggling at first, but it is doable and I hope that I can offer you something useful here.

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