Just got my results from the biopsy and the pathologist said there was inflammation which showed the beginnings of celiac. However, the nurse practioner was hesitant to call it celiac because my blood didn't show it! She wants me to go back on gluten to redo the blood test which I said no. Enterolab found high IgA, fecal fat, the dr who did the endoscopy said she saw flattened folds and now the patholigist thinks its celiac. Plus, gluten-free has cleared my rashes and stopped my gi symptoms. So why won't she call it celiac? Any one else experience this?
Laurel
Page 1 of 1
Got My Diagnosis! well, sort of
#2
Posted 28 October 2009 - 10:50 AM
Laurelf, on Oct 28 2009, 12:17 PM, said:
Just got my results from the biopsy and the pathologist said there was inflammation which showed the beginnings of celiac. However, the nurse practioner was hesitant to call it celiac because my blood didn't show it! She wants me to go back on gluten to redo the blood test which I said no. Enterolab found high IgA, fecal fat, the dr who did the endoscopy said she saw flattened folds and now the patholigist thinks its celiac. Plus, gluten-free has cleared my rashes and stopped my gi symptoms. So why won't she call it celiac? Any one else experience this?
Laurel
Laurel
It's one of the great mysteries of the modern world......why this disease will not be officially diagnosed until you have gone through enough testing to fill a month of Sundays!
Congratulations on obtaining a diagnosis and welcome to the club! You are now free to enjoy a stab at good health!
#3
Posted 28 October 2009 - 11:00 AM
Because doctors in this country SUCK at knowing about Celiacs!!! Do they stop to realize that you are poisoning yourself so things will show up on their tests and you are miserable the whole time? Do they realize that the only real "cure" is to be gluten-free? Duh! It's not rocket science, but it seems to be for them.
#4
Posted 29 October 2009 - 10:59 AM
Two doctors trump one nurse practitioner. Yahtzee!! You have celiac disease!!
#5
Posted 29 October 2009 - 11:22 AM
Laurelf, on Oct 28 2009, 10:17 AM, said:
Just got my results from the biopsy and the pathologist said there was inflammation which showed the beginnings of celiac. However, the nurse practioner was hesitant to call it celiac because my blood didn't show it! She wants me to go back on gluten to redo the blood test which I said no. Enterolab found high IgA, fecal fat, the dr who did the endoscopy said she saw flattened folds and now the patholigist thinks its celiac. Plus, gluten-free has cleared my rashes and stopped my gi symptoms. So why won't she call it celiac? Any one else experience this?
Laurel
Laurel
My blood tests were"inconclusive" but my gut was slick as an oil spill. Yep. That's celiac. Maybe the NP doesn't realize that the biopsy trumps the blood tests.
#6
Posted 29 October 2009 - 07:14 PM
Theres like 5% of Coeliacs who never show positive bloods, or only show it some of the time. I'm one too. Go with the doctors results, you are coeliac!
#7
Posted 02 November 2009 - 12:23 PM
Yep. I was just diagosed last week. My sister and cousin have celiac, so I have had two bloods test over the past year and both were negative. I also have colitis so the GI Docs figured my symptoms were due to that. Finally, my primary care physician requested I get an EGD and voila, according to pathologist and my GI doctor, I very clearly have celiac and duodenitis. Already quit drinking three Monster energy drinks a day to stay awake. Have more energy. Hoping my ten other symptoms will go away soon.
John
John
#8
Posted 06 November 2009 - 03:24 PM
John - maybe you and/or someone else could answer this. On my biopsy report, the dr. wrote "increased intraepithelial lymphocytes and prominent brunner's glands. No significant atrophy. could be chronic duodenitis or early sprue."
Is duodenitis separate from celiac or related to celiac? and does the use of the word "significant" mean there was some atrophy?
Thanks,
Laurel
Is duodenitis separate from celiac or related to celiac? and does the use of the word "significant" mean there was some atrophy?
Thanks,
Laurel
#9
Posted 06 November 2009 - 04:10 PM
Laurelf, on Nov 6 2009, 04:24 PM, said:
John - maybe you and/or someone else could answer this. On my biopsy report, the dr. wrote "increased intraepithelial lymphocytes and prominent brunner's glands. No significant atrophy. could be chronic duodenitis or early sprue."
Is duodenitis separate from celiac or related to celiac? and does the use of the word "significant" mean there was some atrophy?
Thanks,
Laurel
Is duodenitis separate from celiac or related to celiac? and does the use of the word "significant" mean there was some atrophy?
Thanks,
Laurel
Duodentitis can be related to celiac. With the increase intraepithelial lymphocytes and the statement 'no significant atrophy' which to me means that some atrophy was found but your villi are not totally destroyed all point IMHO to celiac. I would try the diet when all your testing for celiac is done.
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)
"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)
Share this topic:
Page 1 of 1

Help












