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Auntie-Manda

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Auntie-Manda Apprentice
Auntie-Manda
Posted

Hi, all. I've been gluten-free for 8 weeks now, and I'm 1000% positive that gluten is a problem for me. In those 8 weeks, I've been glutened a few times, and every single time, it's the same: exactly 1.5 hours later, I get a horrible migraine (which I had nonstop before giving up gluten); my belly gets all bloated and grumbly, and I feel like I've been punched in the stomach. 

 

I have a doctor appointment on Tuesday (as a migraine follow-up/ concern about med side effects). When I initailly told her that a gluten-free diet made my migraines go away, she said, "huh". So I have a feeling she doesn't really buy it. But... as much as I shudder to consider doing a gluten challenge, how important is it to do testing for celiac? I know that gluten is a problem, so I won't eat it regardless, but if I do have celiac, why do I need to know that? If a gluten-free diet is the only treatment, I'm doing that already, yes?

 

I'm sorry. I don't mean to sound dense... but I'm having a hard time deciding if this is important. What changed for you once you got a diagnosos (besides going gluten-free?)

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kareng Grand Master
kareng
Posted

Here is a recent thread on that very question:

https://www.celiac.com/forums/topic/101271-how-important-is-an-official-diagnosis/

kareng Grand Master
kareng
Posted

Just saw this on Facebook

Open Original Shared Link

Auntie-Manda Apprentice
Auntie-Manda
Posted
  • Author

OK, that is helpful. Thank you. I'm actually really annoyed that my doctor didn't have me do the testing. I saw her 5 days after starting a gluten-free diet, and told her it was helping already. She should have had me do the testing right away. Now I'm going to have to go through hell if I get tested. i seriously feel like death for 2-3 days after a teeny tiny bit of gluten.

IrishHeart Veteran
IrishHeart
Posted

Just saw this on Facebook

Open Original Shared Link

 

 

That is a great, comprehensive answer this doctor provides. I'm bookmarking that one, so I do no have to type all that over and over each time someone asks why should I get tested Thanks, K!.  :D

tarnalberry Community Regular
tarnalberry
Posted

What I don't like about the article, and others like it, is that there is an implication that you shouldn't go gluten free - ever - without a formal diagnosis (be it celiac or non-celiac gluten intolerance).  But that assumes that you can get appropriately tested and that you have a doctor that even believes in non-celiac gluten intolerance.

 

I *DO* believe in getting tested, but I do NOT believe in hurting your health if you cannot get a firm diagnosis from a medical professional.  For many of the reasons stated in the article posted above, getting tested can be very important.  Having formality to your diagnosis sets up a certain legal framework that other people are required to adhere to.  But it also sets up a framework for things like difficulty with life insurance and more expensive insurance if you're paying yourself.  And, of course, it sets up legitimacy in other people's minds so that no one has to take your word on something when looking into other health care issues for yourself or family members (especially children).

 

But I STRONGLY believe that a lack of a formal diagnosis from a medical professional should absolutely NOT prevent anyone from going gluten free if they have determined, with some certainty, that they should be gluten free.  Other people not believing you is no reason to continue harming yourself.

IrishHeart Veteran
IrishHeart
Posted

 

 

But I STRONGLY believe that a lack of a formal diagnosis from a medical professional should absolutely NOT prevent anyone from going gluten free if they have determined, with some certainty, that they should be gluten free.  Other people not believing you is no reason to continue harming yourself.

 

I couldn't agree more.  :) No one needs permission to take charge of her health. 

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NotMollyRingwald Apprentice
NotMollyRingwald
Posted

"OK, that is helpful. Thank you. I'm actually really annoyed that my doctor didn't have me do the testing. I saw her 5 days after starting a gluten-free diet, and told her it was helping already. She should have had me do the testing right away. Now I'm going to have to go through hell if I get tested. i seriously feel like death for 2-3 days after a teeny tiny bit of gluten."

I'm right there with you. Except I was an idiot and waited until I was 6 weeks gluten-free before seeing my PCP. *face palm* I have been back on gluten for 7 days. It sucks. And I'll stick with it as long as I can because I know a celiac diagnosis will do several things for me (e.g. convince my son's PCP to test him), but like said above, testing is important, but reaction symptoms are also very telling. Either way, once the scope/biopsy is over, i'm going gluten-free, forever... Long story short, do what's best for you! ((Hugs))

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