BlessedMommy

What do you do for tortillas? Anybody found a gluten-free flour tortilla recipe that works? What about non-gmo masa harina?

IrishHeart, do a lot of pasta places that offer "gluten free" pasta, boil it in the same water?

I would not go to any place where the primary food offering is wheat filled pasta.

 

Look at Find me Gluten Free for ideas. I post there frequently.

It's my understanding that Olive Garden pasta isn't cooked on site, that it's basically prepackaged and heated up in the microwave. Are there CC problems with Olive Garden that I'm unaware of?

After getting glutened at Taco Bell, I won't eat there. CC is a major issue for Taco Bell. If I'm faced with the choice of Taco Bell or skipped meal, I opt to skip the meal. 

I avoid most fast food places but I've had good luck with Wendy's and Qdoba's. At Wendy's I say "allergy" and ask them to change gloves and I do the same at Qdoba's.

If you've only been off gluten for just 13 days, I'm not sure that you would need to eat it for a full 3 months in order to get DX'ed. It seems like the antibodies wouldn't go back to normal that quickly, especially since you still got a little gluten during that 13 days.

But hopefully someone more knowledgeable than me will chime in.

I will say, right now, I am not formally DX'ed and I'll be the first person to say, if you possibly can get a DX, do it now! It makes life easier for you, in terms of people taking you seriously and also gives you information on how to proceed with your kids, if you have any.

Oh and I understand the frustration of doctors writing off your condition as eczema. My primary gluten symptom was a severe skin rash and my dermatologist just DX'ed it as eczema and sent me home with a prescription for steroid cream. It took me experimenting on my own to figure out that it was food triggered.

If you can tolerate Benedryl, that can be helpful. One time when I got a flaming itchy face I took Benedryl for it. The Benedryl knocked the itching and burning out. I also got the rare side effects from the Benedryl, though, which was no fun.

According to the University of Chicago, though, lack of having the HLA D2 or D8 genes does rule out celiac. My main purpose of looking into it in the first place was to assess my daughter's risk for celiac and determine whether to put her through a gluten challenge, but I also would like a little more info on my own genetics.

I feel very frustrated that due to circumstances and the doctors that I saw/consulted with, that I was denied the chance to get a DX in the first place and I'm looking for any pieces to help put together the puzzle, especially for my kids.

I can't do the celiac blood panel, unfortunately. It would undoubtedly come up negative (regardless of whether I am or not) since I've been gluten free for over 4 years. 

I have the benefit of being in a tri-state area (MI/IN/OH), so it's possible that even if one state has no option to order blood tests yourself, that one of the other states might. It's looking like Indiana might have a lab that is geared towards self pay patients.

I don't have insurance.

Are the cheek swabs just as reliable as the blood testing?

I prefer not to have to talk a doctor into ordering the tests for me. 

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?