Update on Celiac Visit

[wendyc]

Just wanted to fill you in on our visit to Children's. Abby will be having a biopsy in 4-6 weeks. We don't have an exact date as the endo needs to fax over insulin orders pre/post op before they will even schedule her. The blood work was offering too much in the way of a "grey" area. Basically, they said her numbers were low, but high enough to make them want to go in and take a look. The doc said they have seen T1's with low numbers who were asymptomatic who both had and did not have Celiac. They said that the endoscopy was the gold standard for getting the complete picture.

So, we don't have a post-op follow up until Nov. 22. This is when we will find out the diagnosis. It's a long time to wait, but they said since she is not in any discomfort and not getting sick, they have to prioritize the children. Trust me, there were kids in the GI unit who were MUCH worse than her. It broke my heart and made me realize that if this is what comes down the pike for us, we aren't that bad off.
Until then, we'll be having one big Glueten party:) Really, they told us not to modify diet in anyway what-so-ever.

I'll keep everyone posted. Thanks for all the comforting words and support:cwds:

Oh, and p.s. Getting to Boston was a joke today! Aaargh!

[Ben'sMommy]

Gosh Wendy.

I hope it is negative. I really admire your positivity. It must be hard to stay upbeat but I guess you've got no choice, right?

I'll be thinking of Abby and crossing fingers and toes for her!!! :D
xxx

[thebestnest5]

Wow, you have a wonderful, positive attitude. :D
I do hope she doesn't have celiac; and I will keep you in our prayers.

God Bless,
<><
Sheree

[EmmasMom]

EEEEk!!! I hate to hear that they're doing the endoscopy! I know it's the safest thing to do but it's not easy. When Emma had it done she had to be on a CLEAR liquid diet for 24 hours, (she was still on a bottle, and would not take clears easily) followed by 12 hours of NPO. She had to be admitted the day before because we couldn't keep her blood sugar up or her ketones clear.:( Lets just say it wasn't a great 36 hours for any of us!!

As long as she'll drink plenty of clear fluids, enough to keep her blood sugar up, she should be fine. Will they start an IV when she arrives to insure that they can give her glucose as needed? Surely they will. We disconnected Emma's pump during the actual procedure so they wouldn't have to worry about her going low, but they left the dextrose IV running,:eek: so she was nearly 400 when she came out! Better high than low, I guess.

I'm sure being a little older will help her get through it. I think if I could've explained to Emma, "you must drink this or you'll have to get an IV", it would've been very different.

I hope it all goes well!!! Try not to stress too much about the results, (easier said than done, I know). Enjoy that gluten!!!!:D By the way, our GI gave us the preliminary results in a few hours, so maybe you wont have to wait too long.

[selketine]

Wendy,

Thanks for the update. I'm sorry she has to do the endoscopy but probably better in the long run to get a clear diagnosis and find it early if she has it.

Celiac is one stupid weird allergy just like peanuts. I hope you can stay our of the SWA club - diabetes is MORE than enough!

[Tamara Gamble]

Wendy, I hope that all goes well for you and your little one. I don't even know what to say except for that you will be in our thoughts and prayers. Great attitude! Keep up the good work.

P.S. Think they'll be done with the Big Dig? Ever?

God Bless! Tami

[Momof4gr8kids]

Wow, I hope the GI comes back neg! I admire your positive additude! Keep it up, and make sure you get some cake, or cookies in to help with the smiles :D

Jamie

[momof2]

Keep smiling - you have a great positive attitude. Well done.

Fingers and toes crossed it's negative.

Thinking of you and your family

:) :cwds:

[hold48398]

Love you attitude! Best wishes for a clear "negative"!!!

[wendyc]

Well, for some strange reason, we were able to get in for Abby's endoscopy much soon than anticipated:eek:

We'll be going in on Oct. 11.

Stay tuned for an update then...

[selketine]

Yikes! Well....probably just as well to go on and get it over with rather than having to wait and wonder.

Keep us updated.

[mommy2noah]

Wendy,

We are in the same boat as you. Noah's endoscopy is Nov 5 and I really don't know what to expect. Please let us know how it goes.

They told us if Noah is positive the whole family will have to be tested. In some sick way I hope that if he is either my husband or I will test positive as well so that he doesn't need to feel alone/unique. Is that a sick thought or what?

I will keep my fingers crossed for your daughter and hope that in the next month you and I will not have to exchange gluten free recipes! However, if we do, my endo tells us that he is affiliated with one of the best celiac nutritionists in the country.

Stacy
son Noah, dxd 2/05, 41/2
son Max, 71/2
daughter, Hannah 2

[wendyc]

Stacy,
Thanks for the thoughts, right back at you.
No, you are not sick for thinking that you or your husband test positive. I know what you mean. I've decided that even though I tested negative for Celiac a few years ago, I will go gluten free for Abby. My husband said he will in the home and as much as possible (he travels frequently), but he will not give up beer:) He said when she turns 21, he will revisit it:)

[Pammers]

Good luck, Wendy. I am crossing my fingers for you.