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Needing Reassurance :-)


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3 replies to this topic

#1 troykm

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Posted 19 September 2012 - 02:20 PM

ok 3 months gluten free.

diagnosed by biopsy and gene test. negative blood work. specialist says prob celiac. response to diet at this early stage is promising.

BUT

i can not stop focusing on the negative blood test. the blood test was for AGA IGG and TTG but no total IgA level test as the pathology believes its not needed with the high sensitivity with that test. Both results did not provide numbers, just that they were under 20 and 5 respectively.

GI Dr wont say 100% until a year from now when she sees the damage gone on new biopsy and then wants to do a gluten challenge!

so is a positive biopsy (moderate damage, we don't use marsh system in Australia but based on what Dr said it would be marsh 3) and HLA-DQ8 gene enough to say yes?
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#2 ravenwoodglass

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Posted 19 September 2012 - 03:00 PM

Yes. If you had a positive biopsy get on the diet even though the bloods were negative. If they want to rebiopsy in a year to see how you have healed that would not be a bad idea but personally I would skip the gluten challenge. You will likely do enough of those accidentally while learning the ins and outs of the diet.
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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 MitziG

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Posted 20 September 2012 - 06:41 AM

Ditto the above. If the damage heals on a gluten-free diet, you have your answer. Silly to go thru a miserable gluten challenge and damage yourself all over again!

Personally, if you feel better on the gluten-free diet, I would not even do the follow up endoscopy.
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#4 gatita

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Posted 22 September 2012 - 06:22 PM

Sounds solid to me. A lot of people don't have all positive results from all the tests, just some of them. That's why they try so many!

My blood tests were negative at first and we couldn't do a biopsy at all because my duodenum is too inflamed and ulcered. Second round of tests partly a strong positive and combined with very clear (bad) results when I tried eating gluten, my doc said that was good enough for him. (There were other factors, too, but too long to go into.)

If your biopsy showed the damage, sounds like celiac to me.
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Diagnosed with wheat hates me 4/13



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