BlessedMommy

I definitely want to go with an actual toaster. I saw some reviews on Amazon stating that the toaster bags caught on fire easily. 

How reliable are dna swabs versus the bloodwork?

You might call them and ask.  I think in some places you can.  Not up to date on these laws any longer.  When I had mine done, I made sure they sent a copy of the results to me and to the doctor.  If you need a doc to order them, and you don't want to ask this doc, your OB/GYN could order it, too - if you have an agreeable one.  I just told my doc I wanted to do one & knew I might have to pay for it.  She wrote an order.

Now that's interesting! I actually didn't have an OB (I had homebirths with a midwife) but my midwife works with a lab, maybe she could order it for me if they didn't want to order it direct.

I don't want my daughter to have celiac disease, but I do want the correct diagnosis, if I'm going to be worrying about every crumb in her diet and setting her up gluten free for life. 

This is true for me as well, except for in my case it's virtually impossible to set her up totally gluten-free without a celiac DX, because of her and others' lack of compliance. 

Can you order lab work from Quest without your doctor's referral? (for self pay patients, not for insurance covered stuff)

Ruth, 

Why didn't your doctor order the genetic test for you in the first place? just curious because I think he should have, IMHO

 

There are blood tests that your doctor can order. I paid out of pocket for the saliva test, but later, my GI doc insisted we go with the blood work genetic test. My insurance covered that test so i am not sure what it cost, but I know the co-pay was $80. He thought it was more accurate, It rendered the same result.. 

 After my hospitalization, he just said, "Stay away from gluten, but small amounts probably won't bother you."  (as if, a person who has just had a TIA and been unable to speak correctly really wants to see what threshold of gluten could cause that again  )I'm not sure how much he really knows about things, although when I first brought in my photos of my skin rash, he said that wheat commonly causes that symptom. 

I'm guessing that his knowledge on celiac and NCGI is a bit below where it could be, although I really like him for other reasons.

I really wish that I had more of a DX and I think that genetic testing isn't a bad idea.

My decision at this point is that we're going to order genetic testing. If my daughter doesn't have the genes for celiac, we're not going to bother with the whole discussion with the doctor. If the leading celiac researchers say that it's not possible to have or develop celiac without the D2 or D8 genes, then I'm going to consider that a "rule out" tool. 

If she does have one or both of the genes, then we'll pursue further testing. If she ends up having celiac, we'll probably pursue testing for my younger child as well. 

Which gene testing is inexpensive but still reliable?

I'm probably going to have a conversation with my doctor about reintroducing gluten or doing gene tests. *sighs* Really not looking forward to this one....my doctor is a real minimalist, which is good in some senses, but I strongly doubt that he will want to order celiac testing, especially with kids who are basically healthy, other than eczema. (my daughter also has vitiligo and had some tooth issues on her front teeth)

I think that I will possibly mention to him the fact that when people have gluten issues, celiac needs to be *at least* ruled out.

squirmingitch, just curious how did you get a DX months after going gluten free? Was yours just a fluke or do lots of folks get DH DX'ed without eating gluten?

I'm guessing that after over 4 years of being gluten-free, I would have slim to no chance of getting a DX, but I'm curious anyway.

We ended up going to BD's Mongolian Grill on our trip. Yum! 

This wedding was a small low key wedding and the food was coordinated by the groom's sister. I ended up just munching on the snacks that I brought along and no one really looked at me twice, because:

1) my snacks were similar to the appetizers at the wedding

2) I had to run in and out a lot with my toddler.

Do you wash the bags after use? Or are they disposable?

I would like to buy a small toaster for use on road trips, since rather obviously, I can't use any toasters at any place that I stay. Does anybody have a recommendation for a good quality, but very small toaster?

Are all punches and juice gluten free? I went to a wedding today and I actually ended up eating or drinking nothing at the reception (other than water from their water pitcher) just to be safe, but I considered pouring a glass of punch.

Is it safe to drink juice/punch without reading ingredient lists?

So, IrishHeart, did you go the blood test and endoscopy route or did you pair your symptoms with your double D2 genes and then try the gluten-free diet? (Just wondering, based on your sig?)

Looks like according to University of Chicago, celiac can't develop without the D2 or D8 genes. So it does sound like they could be used as a rule out tool.

I agree that gene tests are not diagnostic, but it sounds like they might be a "rule out" tool?

They are not gluten free in the sense of being 100% free from contamination or sneaking things on the side and also they eat things that should be gluten-free but  that haven't been verified as gluten-free. So they are probably closer to "gluten light."

But even being 95% gluten free isn't going to work for blood testing, since you have to eat gluten consistently in order to avoid false negatives. I'm just frustrated and wish that I would have never even attempted to take them off gluten. It's so easy to be strict about what I put in my own mouth, but kids really need a real DX.

I don't have an actual DX, but I treat my condition like celiac. (see sig below for history)

It also occurred to me...there is a very celiac knowledgeable doctor not very far away from this. This doctor will sometimes diagnose celiac without the normal tests, in certain situations of extreme symptoms, etc. (probably genetic testing too, I'm guessing)

I wonder if I should go to this doctor and see if I can get a celiac diagnosis from her and then present to my doctor that hey, celiac is genetic, I need my kids tested. Or I could get gene tested as well to see if I'm carrying the gene.

This is so complicated! Knowing what I know now, I would NEVER have taken my kids off gluten without proper testing, but my primary care doctor advised dietary trials when they were having skin issues. I unfortunately asked for allergy testing, not celiac testing, because I didn't know any better. Eeek!

but our doctor really doesn't know a lot in this area and I really don't think that he will be very helpful. After I had my gluten induced TIA, he told me to stay away from gluten, but that "a little bit probably won't bother you." 

I would like to work towards pursuing a DX for my 7 year old daughter because there's not a chance in the world that she will stick to a gluten free diet without a formal DX. She will pretty much go find gluten and eat it and really doesn't care about the rash that develops as a result. I bought gluten free granola bars for us and regular granola bars for my husband and youngest daughter as a treat. I figured that it was pre-packaged, so if they kept it and ate it outside or took it on a trip it shouldn't contaminate my gluten-free house.

So after eating 3 of the gluten free bars, she went outside and snuck into the van and found her dad's bars and ate one as well. Her face is already rashy and raw from the last couple of cheats that she's done. She consistently gets the same symptom from being glutened and I know that it's not placebo effect, because there were some times when I didn't expect it and then it flared up and I realized that she had either snuck some behind my back or gotten some accidently at a restaurant. (i.e. when Taco Bell subbed out a wheat tostada for the corn)

Is it possible to go to some sort of specialist without a referral from your primary care doctor? Or should we find a lab that can order us a celiac panel first without having to try to convince our doctor first?

If we do a gluten challenge, how can I make it safe for her? In my gluten challenge, I overdid it and wound up with severe headaches, but then again I went cold turkey to eating the same type of meals as my husband. Is it fairly safe to feed a kid say, 1 PBJ sandwich on whole wheat bread per day when gluten challenging?

I like Seventh Generation products. Their baby lotion and their baby shampoo/body wash are both gluten free and say so on the label.

I totally understand your excitement! The VitaMix was one of the best kitchen investments that we've made. Since we make most of our food from scratch, having quality tools is very helpful.

BlessedMommy

 

Asking  questions  & listening always  pays  off,,,  glad  you have  peace of mind... it  is  always nice  to feel  safe......I felt  such a  relief  when  I  made a gluten-free    home....

Yes, it is a relief. It's so much easier to cook when I'm not worrying about CC the whole time. Easier on my hands too! (I used to be constantly washing my hands when making my husband's work sandwiches!)

It's so nice to have a supportive community to provide feedback! I've learned so much since coming here.

Not sure why a Celiac would go to a place called Macaroni Grill. You can call ahead of time and talk to a manager or chef. Let them kniw you react to CC and see if they can tighten up for you. 

I think that some places with names like that can have safe food, it just depends. I've heard good reviews of Old Spaghetti Factory and Olive Garden.

And yes, we're going to Akron, OH, so there are definitely other options. They have an Outback Steakhouse there and up further north, closer to Cleveland, there's a California Pizza Kitchen.