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Zoo B.

How Common Are False Negative Blood Tests?

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I am 44 yrs. old, have been having symptoms for at least 15 yrs.(joint pain, constipation/diahrrea, bloating and stomach aches) Tested positive for microscopic colitis but negative on all the blood tests. Dr. says I do not have Celiac Disease. Does anybody have any advice on what I should do next? I know the obvious answer is to go gluten free, but its even harder when I am not diagnosed!

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False negatives according to the NIH run at about 20%. I am one of those 20%. It was very difficult for me to get diagnosed because doctors would look at negative blood results as absolute proof that I wasn't celiac. I was and their assumption almost killed me. You could ask your GI to do an endoscopic exam to look for celiac, although those also have a fairly high false negative rate. You could also do antibody stool testing with Enterolab. They don't diagnose celiac but they can tell you if you are making antibodies to gluten. You also have the option of doing a trial of the diet for a couple of months and seeing if it helps. Your in a good place to learn how to do so.

Bottom line is no matter what your test results a trial of the diet is in order after all testing is finished.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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I actually read higher rates of false negatives. I came out barely negative in the blood tests but I have every sign of Celiacs, and although I had a pretty terrible GI, my internal medicine Dr. had a feeling it was Celiacs as well. I decided not to put myself through the endoscopy, too much commotion and money, so I started the gluten-free diet and have seen great changes, and it's very apparent when I get accidentally glutened.

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NIH figures are, or necessity, extremely conservative. You will see a lot of numbers bandied about. Dr. Rodney Ford, a pediatric GI, estimates that 30% of the population is negatively impacted by gluten, and while he is highly respected in the celiac field, this is not a number which is widely picked up. Only those numbers which are backed up by solid research are quoted in empirical science, and since so little research is done in celiac disease (drug companies do not sponsor it because there is no pill to take for celiac) there are few researchers working to add to the body of knowledge abut celiac disease. We are orphans :(


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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just go to enterolab.com and poke around there, and you find some interesting research about microscopic colitis and gluten.

Microscopic colitis is often definitely caused by gluten and you need to go gluten free.

They should have told you that when you were diagnosed with mc.

At one hospital I know of, all mc and colitis patients are put on a gluten free diet.


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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