Non-Gold Standard Dx Or No Dx--Which Is Better?

[BlessedMommy]

I talked with my mom on the phone and I again asked her to please consider celiac testing. Crossing my fingers and hoping that she does eventually--for her sake as well as for mine.

[1desperateladysaved]

Yeah, part of the reason I did my gene test was for my family, both my parents and my children.  Now they know something about their genetics whether they do anything now or not.

 

Dee

[BlessedMommy]

Did your test cover the alpha and beta parts of it? Do you mind if I ask you what your results were?

[1desperateladysaved]

I had 2 sets of DQ2 and two sets of DQ8.  Does alpha and beta refer to father and mother, because I don't understand the question.  My genes came from both sides of the family!  The lab I used used a swab method and is based in Sweetwater Texas.  I had a very good experience,  They did some interpretation of my test results.  I showed mine to my MD along with my symptoms and reaction to gluten free diet.  She said that I have celiac and should never eat gluten again.  Another doctor seemed to doubt my diagnosis until she questioned me and found that nutrient levels had been low, but rose to good in time.  That is one of the reasons that I like testing nutrient levels.

 

Dee

[StephanieL]

Here's the thing:  1) you know you feel better now 2) you have no way of reliably getting tested (even if you DID test + for the genetics does not 100% mean you have Celiac) 3) you aren't a kid where you need a dx for accommodations.  

 

You have been given the same advice on several threads over several weeks and I've not seen anyone saying anything any different about what you can do at this point. I know you want to know for your kids and I totally understand that.  Are they insured?  If affording it is an issue and depending on where you are, they should be able to get insurance through the state you live in and then you can get them tested if they need it.

 

As for you needing a dx to take when you are away for a weekend....I don't get it?  If you can't eat something, you say no. Bring your own food as you do now.  Getting a letter from your Dr. isn't something I've heard of any adults do unless it was for work (like the military.  

[BlessedMommy]

Very true. I guess that I'm sort of "thinking out loud" through these issues. 

 

My kids do have state insurance, so on the next visit I will be talking to their doctor about the specific issues that I'm concerned about, in regards to their diet.

 

I suspect that I'll need to print out some information and take it with me, to show him.