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my blood tests have come back negative for coeliac
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Fidissimus



Joined: 17 Mar 2006
Posts: 1603
Location: Portland, OR.

PostPosted: Tue Aug 29, 2006 10:53 pm    Post subject: Reply with quote

Noatak wrote:
I would press the celiac theory with your doctor and if they are not responsive after your negative blood work, maybe a trial GF diet may provide some answers for you. To me, that is the gold standard test, not the biopsy!


Awww... that's so nice to hear!

Emily, I too had a blase dr. BUT I hadn't done 1/2 the research at the time I was dx'ed that you have (which is quite the advantage!). So after inconclusive blood work he suggest I try the GF diet to see how I felt. (Day 3 was like being born again! I presented classically so it was a huge change for me to not be sick several times a day in the bathroom). I didn't know at the time I needed to be eating gluten to have a conclusive biopsy. So while he mentioned it, I didn't have one because I was feeling good on the diet and didn't think I needed it. I was never officially dx'ed for those reasons. But because I feel so good off gluten I'll remain adamantly gluten free for the rest of my life. While there are many that feel you need an official dx (like Dr. Green) there are plenty of us who are gluten free of our own free will, so don't feel like you absolutely "need" the dx.

(and no, you couldn't pay me enough $$ to do a gluten challenge just for a biopsy - yikes!)
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Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/
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emilyallsz



Joined: 18 May 2006
Posts: 34

PostPosted: Wed Aug 30, 2006 8:07 am    Post subject: Reply with quote

everyone here-- i can't thank this forum enough. when you feel like your symptoms are all connected and you just have to keep researching on your own, it can be a long trip. but all the info & support here is so great.

i just posted on another thread about feeling like i don't need the DX anymore. i really felt i did, previously, one big reason was to deal with people (i.e. family!) who just don't get it- what gluten is, what it can be in etc. but, now i am just so tired out from all these various issues, tests, doc visits, not the least of which is the vulvadynia, that i don't care anymore.

i feel i have enough information, other people's similar stories, and personal experiences with gluten that i won't eat it anymore. i have been off gluten for about six months now and just recently had regular old pizza. my gut felt fine after that. but i woke up in the middle of the night/morning with intense burning pain sensation deep in my vagina. i KNOW what causes me pain and that is all i need to know at this point! Smile
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aklap



Joined: 02 Oct 2004
Posts: 8794
Location: WI, USA

PostPosted: Wed Aug 30, 2006 8:16 am    Post subject: Re: Regarding Bloodwork Reply with quote

jherara wrote:
My B12 last year at this time of year was 133


Hi J,

If you want more info on B12...

http://jccglutenfree.googlepages.com/b12deficiency
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa
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forinajoy



Joined: 01 Aug 2006
Posts: 219
Location: Texas

PostPosted: Wed Aug 30, 2006 9:29 am    Post subject: Reply with quote

my daughter had many of those symptoms prior to going gf.....but don't forget to go milk free as a trial also...especially with the mouth sores....my daughters mouth sores healed up when she went milk free....for her she has to be as diligent with the milk as she is with the gluten, meaning you must read every label and even a drop of any milk product is too much..no milk, butter, whey, lactic acid, cheese, casienate (often in products that say that are dairy free, but it is a milk protein), lactose, check your meds because many have lactose, continue to be a detective Very Happy

..the up side to the milk intolerance is that she noticed the "results" of being off milk within a week, whereas with the gluten it took longer.
Her joint aches did not stop until she had been gf for a while (I don't remember exactly how long)

I sure hope you get to feeling better soon

connie, mom to Ina 11y/o with CD, who is gf/cf/sf
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Fidissimus



Joined: 17 Mar 2006
Posts: 1603
Location: Portland, OR.

PostPosted: Wed Aug 30, 2006 12:20 pm    Post subject: Reply with quote

emilyallsz wrote:
i just posted on another thread about feeling like i don't need the DX anymore. i really felt i did, previously, one big reason was to deal with people (i.e. family!) who just don't get it- what gluten is, what it can be in etc. but, now i am just so tired out from all these various issues, tests, doc visits, not the least of which is the vulvadynia, that i don't care anymore.


Well, family isn't going to ask to see the documentation, so you could always just say you were diagnosed with Celiac (that's what the dr. said... Wink ) and you shouldn't have any problems. I know it's not the most honest thing, but sometimes that's what it takes.
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Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/
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ostrich



Joined: 30 Mar 2006
Posts: 4294
Location: Nebraska

PostPosted: Wed Aug 30, 2006 2:27 pm    Post subject: Reply with quote

I second what Fid said, except I only use that on strangers. My family's too good at figuring out the truth.
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Fidissimus



Joined: 17 Mar 2006
Posts: 1603
Location: Portland, OR.

PostPosted: Wed Aug 30, 2006 4:34 pm    Post subject: Reply with quote

My family didn't care if I was officially dx'd or not, they saw what gluten would do to me when I ate it - they're totally supportive and on board w/ my GF lifestyle. Very Happy

But for difficult family members who think "a little" won't hurt, it might be best to insist the dr. dx'd CD and it's a no-no for life.
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Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/
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jherara



Joined: 27 Jul 2006
Posts: 47

PostPosted: Sun Sep 17, 2006 6:58 pm    Post subject: Thanks Reply with quote

Aklap,

Thanks for the information on B12, but I'm sticking with my dosage for now.

With the added systemic candidasis, I don't want to tax my body any further while on high dose fluconazole and I already know how I react to the higher doses. I'm still finding articles and forum threads regarding the damage that too much B12 can cause:

There's a great debate on the issue at: http://www.veganforum.com/forums/showthread.php?t=169

Hope this helps!
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