Go Gluten Free Yet?

[Greatscot]

My 13 year old daughter tested positive for Celiac disease through a blood panel. We just got the results two days ago. It was a bit of a surprise. She has no gastro problems so at first the doctor didn't want to get the test done. She has been low in iron for years and suffers from fatigue. We wondered if she had a mild form of narcolepsy. The family doctor had previously referred her to a paediatric neurologist to see if she needs a sleep assessment. That hasn't happened yet. I insisted on the Celiac blood panel after an acquaintance who's a hematologist asked if she'd been screened because of the iron deficiency. So it seems she was right.

So the message from the family doctor was that he's referring her to a specialist but in the meantime we should put her on a gluten-free diet. I've been reading up about all this on this forum. It's very useful. But now I'm wondering if I should keep her on gluten till we see the specialist. I don't know how long it will take till we see the specialist and how long after that till they do a biopsy. I so much want to see her have more energy so I don't want to wait months and months to get started. Do we really need to do the biopsy? I know the specialist will advise us on that but want to hear from other people what their advice is too. Thanks!

[Wolicki]

If you are going to pursue further testing (endoscopy) then you must keep her on a full gluten diet. Blood tests are rarely false positive. I am celiac and my son tested positive on blood tests. We chose not to do the biopsy, and to go gluten free. He agrees it is the best decision he has ever made, even at 9 years old.

It's up to you. You can put her on the diet, or keep her on gluten and do the endo. If you need a "firm" diagnosis, then do the endo. But keep in mind that there are over 35 ft of intestine, and it could still be negative.

Good luck in whichever route you choose.

[curlyq]

Definitely have her keep eating gluten if you want her to have the biopsy. We chose to not have my 6 year old daughter have the biopsy after a positive blood test. With her strong symptoms and our family history of celiac, we felt good about putting her straight on the diet. I have not regretted that decision. Her symptoms went away immediately and she has been healthy ever since. However, I do not have an "official" diagnosis from a specialist. I have not had any reason to need it (she has been gluten-free for one year) and hope to never need it. I think you have to do what you feel good about. Many people are happy to get the biopsy, but a lot of people (like me) have felt good about the blood test results.

[Greatscot]

Thanks for your advice. We did start her on a gluten free diet on Saturday. The more I read about Celiac the more it sounds likely that's what she has and it seems that a positive blood test is a pretty good indicator.

We had our first time eating out last night at friends' and she couldn't eat the dessert. Well she couldn't eat pretty much anything but it was only the dessert she minded about We just took food with us. It was too short notice to let our hosts know. This will all take a bit of figuring out...