Celiac Disease Diagnosis II
Posted in: General
The second stage of celiac disease diagnosis is a biopsy, where a small camera is put down the child’s throat into the small intenstines and a small sample taken from the wall of the intestine to see if there is evidence of damage caused by a reaction to gluten. With children they do this under anaesthetic. Until this is done, the child has to stay on a gluten-containing diet so the doctor’s get an accurate result from this.
I think the month between getting Jamie’s blood test results and going for the biopsy was one of the worst of my life. We had a consultation with a very helpful paediatrician soon after the blood tests and he explained the process to Jamie who immediately went into meltdown over the thought of an operation and was very distressed.
In addition to this, I was having to feed him food which was, in effect, poisoning him! Because we had to stick to a gluten diet he was having bread, pasta, and other food which was giving him a tummyache a few hours later. He was lethargic, irritable, had yet more time off school and was constantly worrying about the operation which lay ahead of him. On the days when I didn’t give him gluten he was better, but when he had to have it again he was worse. It was incredibly difficult and at times we did wonder if we needed an official celiac disease diagnosis - we knew what the problem was. However the doctor persuaded us that if we did not get the official celiac disease diagnosis now, then Jamie could well challenge it in years to come and make himself unnecessarily ill, causing more damage to his guts.
It should have been a two month wait, but understanding of the distress it was causing, the hospital brought the biopsy forward. Jamie went in as a day patient: he cried over everyone who spoke to him and didn’t believe that it could possibly be okay (after all, they had told him the blood test wouldn’t hurt and it did!)
Having interviewed both the surgeon and the anaesthetist to ensure that they had performed this procedure many times before and not lost anyone yet, Jamie was put to the top of the list for that day’s surgery. He was so distressed that they sedated him and predictably was incredibly worried about having the needle put into his hand. I have to say, they were brilliant with him, and the anaesthetist put him under with gas rather than a needle to minimise the stress.
The moment when they wheel your sleeping child through the doors where you’re not allowed to follow is the absolute worst.
So he woke up, asked when they were going to operate, was very happy to hear that they had, then demanded lunch. We had no intention of hanging around for an official celiac disease diagnosis before we started him on a gluten free diet, so he had an omelette.
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