Our appointment yesterday ...

We took Brant to the GI specialist in Vancouver yesterday. The traffic was pretty good but it's a long trip no matter which way you look at it and I always am so exhausted afterwards and the next day. The doctor said that looking at Brant he is certain Brant has celiac based on the symptoms and physical characteristics Brant has as well as the high blood test results (over 200). So he is not ordering a biopsy and told us to continue to keep Brant on the Gluten Free diet and to come back in 2 months for a followup (he wants Brant to get his blood checked at the lab 10 days before the appointment). While we were there he listened to Brant's chest and looked in his ears and discovered he has an ear infection in his left ear so he prescribed some antibiotics. I had no idea since Brant hadn't complained about it.

So that's about it. Brant has celiac and will be on a GF diet for his whole life. I guess we'd better get used to it!

Brant has been Gluten free for a week tomorrow!

We went to the doctor last Tuesday morning and I asked the dr. what we should do since Brant was just SO SICK. The doctor agreed that Brant looked terrible and recommended we start the Gluten Free diet immediately. He said that the blood test is 90% accurate (Brant's levels were through the roof at over 200 or something) and that we will know for sure that he has Celiac Disease if he gets healthy on the GF diet even if the biopsy results show a false negative because there is no gluten in his system.

Switching to the GF diet has been a challenge. Dinners aren't too bad as he can have potatoes/meat/vegetables or GF pasta with sauce (most sauces are GF) and of course rice is ok too. Breakfast though is tough as he always had porridge for breakfast (quaker instant oatmeal) and he doesn't like the rice cereal I bought, even when I sweeten it and add chocolate chips. He also doesn't care for the GF waffles I bought. He does however like the GF yogurt. He also didn't care for the GF bread but it seems to pass the taste test when I toast it and melt some cheddar cheese on it. (we had to buy him his own toaster to prevent cross-contamination). He also enjoys bananas and I'm trying to also get him to eat some other fruits and veggies as well. I also made some GF cupcakes (or as Brant calls them "cuppee cakes") and they were a huge hit with all the kids and even my daycare girl, so I will be making those again for sure!

Despite the challenges, the good news is he seems to be getting healthier. He hasn't thrown up at all since starting the GF diet and his stools are finally forming up a bit again (sorry - too much information!) Hopefully he will continue to get healthier and gain some weight back again soon. I hear that kids usually heal pretty quickly once they are on the GF diet so we are hopeful.

We'll be heading up to Children's on Thursday to see the GI specialist and I'm guessing they will book a biopsy within the next month or so. Hopefully they give us enough notice that I can rearrange my daycare kids again.

Brant has an appointment with the GI!

After lots of calling my doctor's office as well as the GI's office we finally have an appointment for Jan 22 at 2:30pm with the GI specialist at Children's. Unfortunately they do not do the scope/biopsy on the first visit so we will still have to return a second time for that. In the meantime I don't dare take Brant off gluten yet because if I do before the biopsy it could skew the results. So poor guy has to stay sick until our system gets him taken care of properly. I tell you, it has crossed my mind more than once to just drive myself and Brant down to Vancouver and park ourselves in the ER til they do the scope ... but I know me and I won't do that unless it gets really bad. So far we have managed to keep Brant hydrated, so even though he is malnourished (everything comes back up or goes right through him) he will survive. How horrible to think that way though! As a mother it just breaks my heart to see him so sick.

Here's a couple of photos I took of him a few days ago. You can count his ribs and see his bulging belly :( I still managed to get him to smile though :)

Back from the doctor - now we know why Brant has been sick for over a month!

He has celiac disease. Or at least it's very likely that he has celiac. His levels are VERY high. When the doctor showed me the results on the screen I think it said <200 or something to that effect but I'm not sure. He printed me a copy of the results but I don't think the celiac results are on it but I'm not sure, I could be way off. He is also showing low iron (probably because his intestine is not absorbing due to the celiac) and I think he said low B5? Something about the red cells being higher or bigger than expected for someone with low ferritin. The doctor was going to order another test on the blood to check something else to do with that.

ANYWAYS, so our next course of action is a referral to the GI specialist at Children's (UGH - I think I jinxed myself by being so elated that we don't have to go back there til next Nov for his next appt with the Orthopedic Surgeon!) We will hopefully hear back and get in quickly but if we have to wait more than a month we are supposed to take him off gluten until a month before the biopsy. So hopefully they can get him in quick!

So of course I would appreciate ANY info on Celiac. I know that gluten is in bread and pasta and is used as a filler in a lot of things but will labels always list gluten as an ingredient? Or if gluten/wheat is not listed as an ingredient does that mean that it is for sure gluten free? For instance, the pasta sauce I just bought, the salad dressings, the juice? I am SO GLAD I sell Epicure and that 99% of their products are gluten free! They sell spices and dip mixes and mixes to make sauces and dressings and stuff. That will be a huge help!