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Testing After Gluten Free?


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3 replies to this topic

#1 WhenDee

 
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Posted 10 July 2011 - 09:16 PM

I'm sure this has been asked before, but apparently my searching skills aren't very good.

We have to have my daughter tested, because she may have silent celiac's (nearly silent), and I was thinking of also being officially tested. I can't do a challenge because I would get so sick, but it would also be nice to have an official diagnosis after so many years of being accused of hypochondria. Even my husband, who has taken me to the hospital so many times and has seen all my problems go away is only 90 percent convinced it wasn't all mental

I've been gluten free for several months. Would an antibodies test turn up negative for me? Would I have to challenge for an accurate result?

I suppose if my daughter turns up positive after I noticed she has similar problems to what I had when I was very young (digestive problems not started yet), it would be pretty obvious, right?

Just wondering if it would be worth it, or would show a false negative after all this time gluten free....
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#2 ravenwoodglass

 
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Posted 11 July 2011 - 03:17 AM

You would be a false negative if you have been off gluten. You could do a gluten challenge eating at least 3 to 4 slices of bread for 3 months and then be tested but you could still have a false negative. Be aware that the false negative rate for children is even higher than for adults so do a strict trial for your child after all testing is done if you suspect celiac.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Mack the Knife

 
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Posted 12 July 2011 - 04:53 AM

If you don't have to pay for the testing and you have only been gluten free for a few months - then you should probably get tested.

I have been strictly gluten free for 18 months and I'm still testing positive. My GI was not worried for the first year as he says it's not uncommon for it to take a while for some people's antibodies to return to normal. He's not so happy with me now and is sending me off for another biopsy.

So I do think it is worth getting yourself tested just in case. A negative result won't tell you anything but there is still a chance you could test positive.
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#4 WhenDee

 
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Posted 15 July 2011 - 07:07 AM

Hmmmm.... these are interesting replies. I have a "yay" and a "nay".

It's very frustrating to be somewhere where the medical care is so lacking, that is for sure. Biopsy is out here, because it isn't uncommon for people to just die from such ordinary procedures here.

My daughter needs to be tested, so I may go ahead & do it anyway, just to see. If she is positive, that will be a pretty big indicator for me.

Edited because: I replied wrong thing to wrong thread, sorry.
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