Friday, September 30, 2005

Just got some bad news

Callum had the celiac disease blood screening last week, we just got the results and it says that it's positive - he has celiacs.

I haven't been worried about this test at all, it was just another box to check off on the ds health guidelines. He has NO symptoms what so ever. He's in the 50th percentile for weight & 25th percentile for height on the regular growth chart (30lbs & 35"), 95th percentile for height on the DS chart and 90th percentile for weight. No diareah, constipation or vomiting. We also have no history in the family.

Unfourtunatley the doctor had just left a message and the office was closed by the time we got it, so I wont get to talk the results over with her until tomorrow.

For those who've know something about celiacs: is the blood test the definitive answer or are their false positives? The doctor said the test came back on the low end, I think she said borderline. Is the biopsy of the intestines the only way to tell for sure?

I know it can be managed with diet but it just hit me completley out of the blue, it didn't even occur to me that this would be an issue for him.


Kim Ayres said...

I hadn't heard of celiacs until I followed your link. Tough break - hope it's a false result, or a mild case

BStrong said...

Well that stinks. I probably wouldn't spend a lot of time worrying about it until you have time to sit down and talk with the doctor and even then I probably wouldn't worry about it. Sounds like if Callum stays away from gluten he'll be ok, just a pain for you. It could also be a false positive.

I don't want to sound insensitive, it's just that our special kids are susceptible to all sorts of things and like you said, it's just one more thing on the list. You mentioned that Callum really didn’t have any of the signs for Celiacs and the nurse mentioned that it was border line. Hopefully that’s a good sign.

We took Amanda to see the Gastroenterologist a couple of weeks ago and they suspected Celiacs, we did some blood work and it came back negative. My wife is taking Amanda in today to get a barium enema to check for Hirschspungs. The mystery of not knowing is sometimes as difficult as knowing. We just want to know what’s wrong with her so that we can treat it if it’s treatable.

The excitement continues.

Have an uneventful weekend.


Naomi said...

Kim - do they not screen for celiac's in kids with DS in the UK? It affects predominantly people of Northern European descent and is more common in people with DS.

B - you're right, it's controlable by diet. It's not like he has something that is going to cut his life short. The number of foods that include gluten is huge though so eating out would become a major pain in the bum. Not knowing is definitley worse and I hope they find out what's wrong with peanut soon.

Kim Ayres said...

Meg probably was. I know that children with DS have a higher than average chance of bowel disorders. Before we moved I knew another family with their wee boy who was the same age as Meg, who had to have surgery to help correct a disorder. I remember discussing with his father about the fact that we felt lucky that we'd not had to deal with anything like that. In reply he felt that he could cope with that but was really glad he'd not had to face any heart problems with his son, like we had with Meg (she had open heart surgery at 5 months old to plug a couple of holes).

Truth is though, I'm terrible with the names of the various things,so I probably have come across it before, but because it's not something Meg has to deal with, it will have shot out of my mind.

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