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Today's My 1-Year Anniversary Of Coming Down With This Thing!

gatita

By gatita
in Coping with Celiac Disease

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gatita Enthusiast
gatita
Posted

And what a crazy journey it has been....

 

Yup, June 10, 2012, I was sick as a dog, rushing home from a road trip with massive gut pains and, ahem, other classic symptoms :). I still believe I caught giardia or something like it, and that the infection triggered my.... whatever it is.

 

Boy was I naive when all this started. Here's what I've learned, in a year:

 

 

• I've been CAT-scanned, ultra-sounded, endo- and colon-oscopied, gall bladder tested, blood- and stool-tested, checked from head to toe with no clear results except a fussy gallbladder and a few minor things.

 

• One year later, I have "wheat allergy" on my medical charts, a GI who knows I can't get through a gluten challenge and has no name for what I have but agrees I must stay gluten-free.

 

• All my celiac tests have been negative after an initial elevated anti-gliadin antibody level. My biopsy was done after 7 months gluten-free, so no surprise, it was negative. Negative DQ 2 and 8, positive DQ 6 and DQ 9.

 

• I have been gluten-free for more than 10 months. My guts still get sick about once or twice a month, but it's way better than being sick every day. My joint and muscle pain that was even worse than the gut symptoms is ALL GONE. My gums don't bleed any more. The numbness and tingling in my feet and hands are gone.

 

• I sporadically get what my doc says appear to be true allergic reactions to wheat when CC'd (watery eyes, swollen face, hives, etc.) but also often get just the gut symptoms. So nobody knows what to call it, whether all my symptoms are caused by a true wheat allergy, or if I am also NCGI. (I haven't had the courage to test myself by eating barley or rye yet.)

 

• My brother recently came down with severe ataxia of unexplained origin that so far hasn't responded to treatments they've tried. :( His celiac blood test was negative and so he won't give up gluten. Still hoping to convince him to try at least 6 months, but it's an uphill battle because his doctors aren't encouraging it.

 

• My housemate, family, friends, and fiancé have all been AMAZING and have learned to cook gluten-free without any complaints. I am so grateful.

 

• And I survived it all by hanging out on these boards and getting incredible advice!!!

 

 

Man, what a difference a year makes. THANKS everyone for helping me (and so many others) through all of this!  XOXO, Gatita

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IrishHeart Veteran
IrishHeart
Posted

party-sparkler-smiley-emoticon.gif

 

I'd call it : Happy NEW life!!

hugs, IH

 

 

( P.S. I am not a doctor, but you sure sound like NCGS to me. Anyone who cannot tolerate a gluten challenge is deemed that in an article written by Dr. Fasano)

 

BTW, did you have classic allergy testing--skin prick tests? maybe that would clarify it?  

 

Has your brother read this??

 

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shadowicewolf Proficient
shadowicewolf
Posted

I'm just past two years :) I can't imagine eating gluten again honestly.

gatita Enthusiast
gatita
Posted
  • Author

Thanks for the birthday sparkler, IH! I sent my bro that very article plus a bunch of research studies, to no avail...yet. :( They are sending him to a university research lab in Portland (OR), so I hope someone there knows about gluten ataxia. Once I save some $, I'm going up there to show him he really can go gluten-free and life will not only be fine but better.

 

That's interesting about Fasano defining NCGS that way, always learning something around here! I had a wheat allergy igE blood test that was neg. Insurance won't pay for the skin prick tests.

 

Wolf, I agree. Never going back! It always interests me when I read about people struggling to stay gluten-free. Trust me, I have little willpower when it come to diets, but I can't even conceive of putting that stuff in my mouth. Ever.

gatita Enthusiast
gatita
Posted
  • Author

Oh and congrats on two years down... I should say UP! :)

IrishHeart Veteran
IrishHeart
Posted

 

 

That's interesting about Fasano defining NCGS that way, always learning something around here!

 

 

read this, sweets---you can quote it to people--like your doctor  ;) and say "Look. I am NCGS!"  :P so na na

 

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notme Experienced
notme
Posted

congratulations, gatita :)  yes, happy NEW life!  (pretend awesome sparkler guy)(ih = show off  <_< )

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IrishHeart Veteran
IrishHeart
Posted

congratulations, gatita :)  yes, happy NEW life!  (pretend awesome sparkler guy)(ih = show off  <_< )

 

 

oh come on, sweets...you can cut and paste too., if'n you wanted  :lol:  or you could just copy, like SkiLisa does...lazypants that she is.

notme Experienced
notme
Posted

procurement?  i can live wit dat!

party-sparkler-smiley-emoticon.gif

 

(hey that was easy lolz)

GottaSki Mentor
GottaSki
Posted

Who me?  Copy you?  Hell Ya!

 

congrat.gifHappy First Silly Birthday Gatita!!! congrat.gif

IrishHeart Veteran
IrishHeart
Posted

Now, dat's what I'm talking about!!!

 

I love you  two big sillypants.

 

gatita...stay well and keep healing!!

Adalaide Mentor
Adalaide
Posted

Happy birthday!

 

I never thought I'd make the year mark when I started but it keeps getting easier every day and isn't it amazing how looking back it seems like the year just flew by?

nvsmom Community Regular
nvsmom
Posted
:):D Congats!!!!
gatita Enthusiast
gatita
Posted
  • Author

Happy birthday!

 

I never thought I'd make the year mark when I started but it keeps getting easier every day and isn't it amazing how looking back it seems like the year just flew by?

 

Boy it sure does! So glad it's over, too lol. I had such a bumpy road to healing that it's only now I can clearly see how sick I was in the three months before I gave up gluten, June, July, August.... hurts to think about it.

 

Thanks everybody, I love the sparkly guys!!!!

 

And "Silly Birthday"!!!! Now I know what to call it :D

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