We got the confimation call

[still..hopeful]

Well, after a week of phone tag with Alyssa's gastro, we finally received the confirmation that she does in fact have celiac. We pretty much knew but it is different when you hear it. The past week has been very stressful. Alyssa's blood sugars have been extremely high-running in the mid 200's and even 450 one time. I feel we have started the battle all over again. Is this normal for blood sugars to run high when you are eating gluten free? The nurse that called told us to get with Alyssa's diabetes nutrionist and make an appt to come back to the gastro in 4 months!! Is this normal? I was expecting to have to take some crash course in celiac like we did with the diabetes... but nothing.
Angie

[WestinsMom]

We had basically the same thing..."Yes, he has celiac. We will have a dietician call you." I had it figured out before I got the call from the dietician.

[aklap]

Sorry to hear that Angie. But, long term, it's best to find this out now, not 2 - 5 - 10 years from now when more damage has been done.

Yes followups with gastro are normal. It can be 3 months, 6 month then again at 1 year. They will run blood tests again to check for dietary compliance. After this initial followup, most times it just annually the docs will want to do blood work just to make sure things are as they should be.

Most times you are dx'ed with CD and if you're lucky, you get a 1 page handout - if you're lucky. Education on this is rarer than getting dx's in this. :rolleyes:

If you get to see a dietitian, ask if they are familiar with the gluten free diet and how many clients they have. If will help determine how you will work with them. Some RD's are very familiar with it, some are not and they'll have to get up to speed.

You might want to checkout Dietitian's GF Resources (http://www.celiacforums.com/viewtopic.php?t=3959). There's a whole Celiac Series covering all aspects of CD. It's written by RD's for RD [and their clients ;)].

Good luck!

[BrendaK]

I would think that as the intestines heal, they are able to absorb more food, and that's why blood sugars are higher. You will probably have to readjust everything :(

Sorry about the diagnosis.

[hrermgr]

Sorry to hear about the diagnosis. Even though you suspect it, it is very different to actually "hear" the words--yes, the test is positive.

It is better to know for sure so that you can take action. We did a lot of research before the diagnosis just to feel better prepared. We felt we learned more from the internet, this site and some handouts we received from the gastro office than the doctor himself! The gastro office never did offer to meet with us again or to meet with a dietician--they only wanted to see T for a 3 month follow up.

We called our endo and set up a meeting with their dietician. She was great! Gave us more resources and information and offered to talk with us at any time. We also will have follow up testing (when at all possible) done through our endo office and not the gastro. For now, we feel that the gastro really can't offer any more--it's up to us to change T's diet and monitor. If she gets sick or has gastro issues, then we'll go back but we feel better with our endo office.

Good luck. It really is not as "bad" as you might think. We're about a month into it and feeling so much better. We even ventured out for lunch a couple of times with T--a little research on the internet, talking with people, and asking lots of questions is the way to go!