[NancyM]

[rant on]
I hate that phrase. It seems like in the case of Celiac disease it is bronze or iron standard appropriate for the bronze or iron age of humanity.
[/rant]

What does "gold standard" make you think of? Other than pinching off the heads of incredibly dense doctors?

[Curious]

flour nancy...it makes me think of gold medal flour.

[jccgf]

The "gold standard" is the "old standard" ...

I share your frustration Nancy!

[mistofviolets]

I never really thought of it like that. Although...now that you mention it, it makes it sound like a race or competition

I'm upset about Stanford clinic...I keep overhearing or reading stuff about them and how they told so and so that they don't have celiac and can't get in. They literally decided on a set criteria, blood work genes and biopsy; and if you don't meet it they don't want to study you to learn more about celiac/gluten sensitivity. I mean, really!!! Thats not a research clinic...its a clique.

Sorry...I'm going off topic...or maybe not...they need the gold standard to earn their gold?

[aklap]

Originally Posted by mistofviolets

I'm upset about Stanford clinic...I keep overhearing or reading stuff about them and how they told so and so that they don't have celiac and can't get in. They literally decided on a set criteria, blood work genes and biopsy; and if you don't meet it they don't want to study you to learn more about celiac/gluten sensitivity.

Unfortunately that is our current standard and definition of CD. The standard and definition need to change, but 1st the thinking of those that make those rules need to change. Slowly I think that is happening.

How long did it take for others to catch up to Galileo on his theory about the real center of the universe? Hopefully it won't take that long!!

[loisba]

You know, you get much the same kind of mind set of "set minds" in other diseases as well. I'm thinking especially of my own disease, myasthenia gravis. Since I don't have the antibodies, and don't really have classical MG, I'm basically cut off from treatment by a neurologist, even though I was originally diagnosed by an expert in MG. It's like they've been taught a certain thing in Med school, and nothing in the real world is going to change that idea.
Well, that's my rant added to the rest! Now, I'm going to go back to learning how to bake GF! That I can control, hopefully!
Hugs,

[waywardsister]

What I find irritating too is that CD is the "gold standard" for gluten sensitivity. As in "So are you celiac, or just gluten sensitive?" I mean, doesn't it make more sense that celiac disease is just ONE possible end result of gluten sensitivity??

[NancyM]

The problem is there is little to no acknowledgement by most doctors that there is non-celiac gluten intolerance. If they'd just open their eyes to that one little facet then everything would fall into place.

[mistofviolets]

Originally Posted by waywardsister

What I find irritating too is that CD is the "gold standard" for gluten sensitivity. As in "So are you celiac, or just gluten sensitive?" I mean, doesn't it make more sense that celiac disease is just ONE possible end result of gluten sensitivity??

I think there's also the problem of not understanding degrees of reactions. I had an appt earlier this week and was asked if I was allergic to any medications, so I explained about my corn allergy (Medications would need to be compounded most likely due to my allergy to the binders used, which are generally derived from corn) and the nurse asked about my reactions. I explained that they vary from pain and bloating up to rashes and severe hot flashes, tightness in my chest.

"Well, its good that its nothing serious."

I felt like it was being dismissed!!! I've come so far with the corn free and gluten free, I have bad days and can remember when feeling like that was a good day (and wonder how I ever functioned...) But how else to describe the symptoms? In medical terms...its gas, bloating, motility issues. Inflammation, shortness of breath, etc. Meds make it worse because they contain what I'm allergic to. But I don't drop down dead and require heroic measures to be rescusitated...so its not a big deal.

I keep telling people there's more to it than just whether you live or die...quality of life counts!

[loisba]

Right on, mistofviolets! I'm apparently "just" gluten sensitive, but when I think back to what life was like on gluten, all of the gas, bloating, diarrhea, cramps, fatigue, you couldn't pay me enough to eat the stuff!
Hugs,