November 25, 2008

Olivia had her endo appointment last week. I was dreading her A1c. Her numbers haven't really been out of control (except for the post-bedtime high that seems to arrive every night when her Humalog wears off), but I feel like diabetes management has not been top-of-mind recently. Her A1c had gone up, but only slightly from 6.9 to 7.1. I know that we have been the cause of that and I know that we can get it back down.

I was also dreading the appointment because they were going to take blood this time. We have talked about doing it for the last couple appointments, but it got pushed back each time. They would take three vials for the celiac screen, cholesterol, etc. The last couple of weeks have had O at the doctor a lot for general unpleasantness and I didn't want to put her through this, but I did want it out of the way. She cried a lot but held very still and got it done. We were glad it was over and I almost didn't give it another thought once we got out the door.

But the nurse practitioner called yesterday. Four out of five of the antibodies for celiac were positive. Four out of five. Positive. Celiac disease. And the numbers are so out of whack, so high, that there is almost no question, even though Olivia has been exhibiting no symptoms.

Part of me is just mad as hell. Just pissed. It all just seems so ridiculous. Like a cruel joke.

Another part of me is just trying to get on with it. Accept it and start thinking about how to get Olivia to eat more vegetables.

We still have to see a GI doctor in a couple of weeks and I have a lot of research to do. Apparently we are not supposed to change her diet until she has a biopsy, but since the treatment is the same regardless of whether or not the bowel has been damaged and we hope we have caught this early, I intend to question the need for the procedure.

It feels like I have all these pieces scattered all over - O's diabetes, this celiac panel, immune system issues that have come up for Marc and me - I don't know how to put everything together and keep us all healthy. And in the back of my mind, there is this: what about Sawyer?

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Blogger Major Bedhead said...

Oh Paige. I'm sorry. That just sucks so much. Hopefully the GI doctor will be helpful and maybe, just maybe, it's a false positive. Hang in there....

11:36 PM  
Anonymous Anonymous said...

We JUST went through this and Stella turned out NOT to have Celiac. Like O -- Stella's initial blood screen showed her off-the-charts for celiac. But when we met with the GI -- she said only type 1's ever get false positives on this test. Only way to know for sure is with an endoscopy.

Like you, we struggled with the endoscopy -- "why can't we just do the diet and skip the SURGERY?" We did become convinced that the diet is so severe, it would be nice to know for sure before committing to it.

The endoscopy went wonderfully well from a medical point of view, was traumatic from a parent/kid point of view. All in all we were in at 6 a.m., endoscopy at 8, done at 8:15, home by noon (after Stella ate).

It was so wonderful getting the news that Stella does not have celiac, each piece of bread seems like a gift. But we were mentally all ready to go gluten free -- and I think it would have proved a huge burden, but not insurmountable. You already have EXCELLENT A1c's, so you would be wonderful at this too.

Two other things come to mind: our endo was particularly sure Stella had celiac b/c of poor A1cs (not your problem at all) and b/c Stella was also losing weight.

And, all in all I don't think the endoscopy was as bad as the f'ing blood draws -- they used a gas to put Stella to sleep before using any veins. She woke up with the line in her hand, and that's what she hated the most!! But it came out within an hour.

I hope I offered some comfort -- please feel free to ask me any questions. And, I hope hope hope that O will also turn out to NOT have celiac.

The one big question I still have, and waiting for an answer from the GI/endo: is it wise to still limit gluten in Stella/O -- b/c overtime they might become sensitive/intollerant?

-- Stellasmom

9:57 AM  
Blogger Penny said...

Every year or so Riley has a celiac panel done also. I always hold me breath when I get the results.

I'm so sorry, Paige. It's not fair, just not fair.

10:02 AM  
Blogger AmyT said...

OK, this SUCKS in a huge way, I know. But I'm also living with Type 1 and gluten intolerance and I have discovered lots of yummy foods/ mixes / recipes that work.

Please have a look here:

All the best to you & Olivia,

2:14 PM  
Blogger Amy said...

My sister has Celiac and her 20 month old son was diagnosed too. I went with her to Emory's Children's Hospital in Atlanta to be with her for the biopsy. For an event that is so stressful that hospital was Wonderful. The GI specialist spent a long time talking to her before and after and the staff was fabulous. I don't remember her son crying once. All my best as you all figure things out.

2:32 PM  
Anonymous katiek said...

We will keep you all in our prayers. You guys need a break from all the madness. God cares about each little thing, thanks for sharing the details.

9:05 AM  
Blogger k2 said...

Paige -
It sucks, BUT if Olicia does indeed have Celiac - YOU will figure it out!
Amy T is right, there are options (and they are yummy) and you will find them.
dBlogville has you and Olivia's back

8:15 AM  
Blogger Paige said...

thanks everyone!

Amy T - the link didn't work. could you try again? thanks!

10:35 PM  

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