what kinds of questions should

[Kaylee's Mommy]

I be asking the GI dr on monday.. or what type of info should he be asking us (I want to make sure that he knows what he's doing RE: celiac:cwds: )

I'm really nervous about this appointment for some reason.. I keep thinking that he's going to brush me off, like its no big deal.. I have NO idea who this dr. is.. whether he's like that or not.. he came recommended by the endo, so I hope he's good:) I just don't want to leave there with no answers and no 'plan'.. what should the next steps be?

thanks!

[aklap]

Hi Kim,

The best thing you can do is to arm yourself with knowledge [particularly when it comes Celiac Disease and Gluten Sensitivity].

You might want to look thru these medical journals. These are some pretty good ones for starters:

Detecting Celiac Disease in Your Patients - HAROLD T. PRUESSNER, M.D.,
University of Texas Medical School at Houston - http://www.aafp.org/afp/980301ap/pruessn.html

CD - More common than you think (2002) - http://www.aafp.org/afp/20021215/2259.pdf

Detecting Celiac Disease in Adult Patients (PDF) -(2005) http://jaapa.com/issues/j20051001/pdfs/celiac1005.pdf

Also spend some time looking at Clan Thompson's Ask the Doctor page (http://www.clanthompson.com/exp_doctor.php?status=list_qs&coded_category=Tests%20and%20Their%20Results&coded_category_id=4). Lots of great info here!

One question you might consider asking this gastro is how many Celiac patients he has. If he/she says they rarely see CD, then you have to wonder if they're even looking. If they're not looking, they may not know what to look for when looking for CD. If they discount the connection or the high percentage of T1D that have CD [the numbers range from 6% - 12% depending on the study] you might consider a different gastro.

Certainly considering a scope to get some intestine samples would be a serious consideration. Make sure they take enough samples (http://www.clanthompson.com/exp_doctor.php?status=show_qa&coded_question_id=52&coded_category=Tests%20and%20Their%20Results&coded_category_id=4), often times too few are taken [that's another question to ask - How many samples are taken. I suspect the answer you'll get is between 4 and 6 :(].

I've run out of time for now...

[WestinsMom]

Definitely make sure he is experienced at diagnosing with endoscopies as a bad endoscopy is a waste of everyone's time.

Before that though, I would ask that she be retested. I know she had been sick and I don't think the numbers were accurate. I would be cautious if he/she wanted to do an endoscopy with that low of numbers. He/she should want them higher to warrant an endoscopy as they shouldn't want to do one unless they feel pretty confident they are going to get a positive.

[aklap]

Before that though, I would ask that she be retested. I know she had been sick and I don't think the numbers were accurate. I would be cautious if he/she wanted to do an endoscopy with that low of numbers. He/she should want them higher to warrant an endoscopy as they shouldn't want to do one unless they feel pretty confident they are going to get a positive.
I've not seen any info that suggests being sick will skew the results of Celiac testing. Not consuming gluten is one way to skew the results, however.

If you want to retest, not a bad idea. However, as I've shone in the previous post, the tTG and EMA tests will show false negatives with lesser amounts of damage. With a "weak positive" or high normal, it's possible she may have small amounts of damage. The only way to know exactly what kind of damage exists [if any] is to have the scope done.

If she's in the early stages of it when villi damage is only partial - why wait until there's total villous atrophy (http://www.clanthompson.com/exp_doctor.php?coded_category=CD+and+Other+Issues&coded_category_id=0&coded_question_id=215&status=show_qa). It's best to catch this as early as possible. Unfortunately, gluten damages far more than just the intestines. It can affect all systems of the body.

Should we wait to diagnose alcoholism only when there's liver damage?

The other thing to keep in the back of your mind is that auto-immune diseases such as T1D can skew the test results [show a false positive].

Only you can decided what risks you and your child takes. These risks must be weighed against the benefits that the procedure offers.

[WestinsMom]

Well, I personally, was very nervous about putting my son under with diabetes. Dealing with insulin and no breakfast wigged me out. I just don't think an exploratory endoscopy is something I would sign my child up for, just my opinion.

When I mentioned being sick I was only referring to the fact that Kim had mentioned that due to her illness she hadn't been eating much gluten.

[aklap]

Well, I personally, was very nervous about putting my son under with diabetes. Dealing with insulin and no breakfast wigged me out. I just don't think an exploratory endoscopy is something I would sign my child up for, just my opinion.

Oh, no question about being worried about it! I wasn't trying to minimize the fear or the risk. Those are the risk factors that all have to be thought thru and weighed properly. The only way to make an informed decision is to have...information ;).

How to handle the insulin, etc in prep for the test certainly would be an excellent question ask!! How did you handle it?

When I mentioned being sick I was only referring to the fact that Kim had mentioned that due to her illness she hadn't been eating much gluten.
Yeah, I was referencing that from her 1st post too. I realized I didn't answer her question in my other post. Sorry for the unclarity there.

[WestinsMom]

We did a LOT of basal testing leading up to the endoscopy. Before that we didn't basal test ever. If everything was working we just left it alone. I got it pretty good to were he didn't have to eat. But then nerves and what not can never make it perfect. Our gastro said he could have a juice up until 4 am and we were the first appointment so we had to be there at 6 or 6:30, I can't remember. So at 4 am I gave him juice. We ran him a little high, closer to 200. He did fine but they let us go pretty quick and he started to drop fast after we left the hospital. Thank goodness he felt like eating what would be his last pop tart. We have a 2 1/2 hour drive home.

[aklap]

Michelle - thanks for the info. I'm sure others will want to know how you dealt with it too.

Kim - How did the appt. go?

[Kaylee's Mommy]

Well, the appointment didn't go as I had hoped.. He thinks she has an 80% chance of having celiac. We redid the blood tests, plus a few others yesterday. They are sending them out to a special lab in CA, we should have the results by friday (he said about 5 business days).. The GI dr doesn't expect them to be any different than the last ones (not negative anyway.. they could be higher)... Someone is suppose to call me to schedule the biopsy.. I think I'll call them tomorrow.. I want to get it over and done with..Kaylee goes to CHAD (Children's Hospital at Dartmouth) and I guess they have their own little operating rooms upstairs (they aren't in a 'hospital') she'll be the first one of the day, her endo will have complete control over what to do with her insulin/pump, the GI's wife will be the one doing the biopsy (she's the Director of CHAD).. he said it'll take about 10 minutes.. He really feels that she does have celiac, but wants to confirm it since its a life long diagnosis, he said 'GF is expensive, you don't want to do it if you don't have to'... so, I am expecting the worse, but really hoping those first labs were in the like 1% that are just wrong.. The appointment went much better than I expected (other than him not telling me its nothing, and to go home.. was really hoping that I was an 'over paranoid' mother and that her tests were fine.. of course, hoped that with the D diagnosis too!)...

I will update as soon as I hear something.. Oh, and Kaylee's basals are pretty steady at night.. she 'flat' lines all night (the ONLY time I want to hear that my little girl 'flat' lines!) so hopefully those basals are still OK in a few weeks :)

[aklap]

He really feels that she does have celiac, but wants to confirm it since its a life long diagnosis, he said 'GF is expensive, you don't want to do it if you don't have to'...
Thanks for the update!

While it's good to want to know for sure, I don't agree with the blanket comment that "GF is expensive".

While it can be expensive - it doesn't have to be. There's lots of food that can be purchased in mainstream grocery stores that is GF, you just need to know a few tricks on how to find it. The stuff that is expensive [the specialty foods: baked goods, pastas], can also be minimized. The baked goods - you're best off to purchase some GF flours [yes, it's not cheap] and make it yourself. It not only tastes better, it's cheaper AND you know exactly what's in it :D The pastas - yeah well - there's not much you can do there ;) Pasta is probably not something she should be consuming much of any way ;)

The only specialty foods I buy are pasta, some cereal, some snacks, GF flours for baking, pizza mixes, cake/brownie mixes. My wife loves to bake and bakes almost all of my cookies, breads/buns, bars from scratch.

There's been plenty of discussions on this topic (http://forums.glutenfree.com/topic6695.html) in the forums at glutenfree.com. There's lots of good tips there for doing GF on a budget.

Now...getting back to that "knowing for sure" subject. One big advantage for a child to get an official dx is the school system [assuming you're not home schooling]. Dealing with schools systems can be a pain - some of them can get rather stubborn about making some allowances for your child. This is where a 504 plan (http://www.fns.usda.gov/cnd/Guidance/special_dietary_needs.pdf) can help. Whether or not you trust the school system to provide your child at completely GF meal is another matter all together. Now, she may already have a 504 plan in effect for her D - in that case - the 504 plan benefit is moot.

[Kaylee's Mommy]

Kaylee isn't in school yet, but will be starting in the fall, she will definitely have a 504 plan for D.. already started working on that process, we are meeting in June, so hopefully we'll have answers to the celiac question by the time the meeting comes around so we can include that too..

I figured if she does have celiac I'd end up making her lunch for the next 12 years.. not sure how the school would do gluten free lunch.. but I suppose they have to do it..

[momtojess]

I figured if she does have celiac I'd end up making her lunch for the next 12 years.. not sure how the school would do gluten free lunch.. but I suppose they have to do it..

We started packing Jessi lunch, but I have talked to the Cafeteria manager as well as the main lady over the food for the district. They were awesome. I have made some cupcakes and they are keeping them in the freezer for b-day parties. She said the teacher just has to give her a day or so notice and she will set one out, or microwave it if needed. We went through bags of chips and ice cream they have to see which Jess can buy if she wants. They also said if she wants to buy a lunch, to give them a weeks notice, and they will order GF stuff ( the goverment reimburses them). Honestly I dont trust them to not cross contaminate so I doubt we do it.

[Kaylee's Mommy]

that would be my fear, cross contamination.. also, at the girls school they dn't even make the hot lunch there, it comes from the other elem. school because this school only has 65 kids in it, and 15 of them are K kids, they don't have lunch.. so next year, it'll just be snacks that I send in.. the year after.. not sure what we'll do.. no one has called me about making the biopsy appointment, so I'm calling now..