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Positive Biopsy, Negative Blood Tests

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After finding what looked like Celiac in my small intestine during an endoscopy to try to figure out why I haven't been wanting to eat for six months, my doctor did a biopsy that came back positive for Celiac. To confirm she ordered a Celiac panel and that came back normal. Has anyone else on the forum had negative blood tests but tested positive for intestinal damage? It seems like a lot of the other options for causing that sort of visible damage are way scarier than Celiac disease. :-/

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False negatives with blood work are not unusual. A positive biopsy is a positive biopsy. That is considered the gold standard. Hopefully you are already on the diet, if not get on it today.


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 was just about to post this very problem for myself. I got diagnosed by biopsy two weeks ago. The pathology report said that it was consistant with "symptomatic, latent or partially treated" celiac. My blood panal (tissue transglutaminase IgA, IgG and endomysial anntibodies) all came back negative too. I have an appointment with a celiac specialist on thursday. I hope he can answer some questions. I'm curious about why my blood work would be false, but my biopsy physically showed the scalloping and my villi were "normal to bluted."

Maybe it's a new thing? I'll keep you posted. What is the game plan for you now? Will you be trying a gluten-free diet and retesting?

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Sounds like your doctor is working backwards. I had a negative blood panel and a very positive biopsy that was ordered because of very compelling anecdotal evidence that overrode the negative blood work. The biopsy overrules the negative blood work as already cited above as the biopsy is considered the gold standard for diagnosis. i think you will find many here have experienced the same thing.

CS

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The blood tests have high cutoffs and that is intentional.

The reason is to avoid getting a lot of patients sent for biopsies and half of them are negative.

So some biopsy proven patients will have negative bloodwork for that reason, and some are simply negative.

Which tests did you all have?


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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I had a biopsy that was "compatible with celiac" and normal blood panel. I have had a pretty good dietary response 1-month gluten-free. I've limited dairy also and that seems to help some. My father didn't do any tests and went gluten-free after my diagnosis - great dietary response. Seems to add up to me.


Negative blood panel

Biopsy "compatible" with celiac sprue

Gluten-free December 2011, with positive dietary response

1st degree relative also with positive dietary response

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I went in for an endoscopy to find out if something from my stomach/intestine was causing my bad breath.  A biopsy during that procedure revealed that I had Celiac.  I thought it was strange since I ate pizza, pasta, and other bread/gluten items almost every day without issue, so I decided to confirm the biopsy result with a blood test.

I took the blood test twice (once on a high- and once on a low-gluten diet) and it came back negative both times.  I just assumed someone at the earlier biopsy lab must have messed up my analysis or accidently mistaken someone else's biopsy for mine, but after reading this thread it seems like my initial biopsy might have been correct all along.

My doctor suggested doing another endoscopy, but I didn't want to foot the bill for that.  Also, my older brother has Celiac which was confirmed by both a biopsy and blood test.

Eating less gluten did seem to help a little with my bad breath, but SmartMouth Activated Mouthwash along with Flonase nasal spray and a Dr. Tung's tongue scrapper really did the trick to solve the bad breath issue.

I'm just assuming I have Celiac and eating "gluten conscious" until my next endoscopy in about 10 years. If that biopsy comes back positive again, then I'll be strictly gluten-free.  I'm just glad I don't have many symptoms.

 

 

 

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I went in for an endoscopy to find out if something from my stomach/intestine was causing my bad breath.  A biopsy during that procedure revealed that I had Celiac.  I thought it was strange since I ate pizza, pasta, and other bread/gluten items almost every day without issue, so I decided to confirm the biopsy result with a blood test.

I took the blood test twice (once on a high- and once on a low-gluten diet) and it came back negative both times.  I just assumed someone at the earlier biopsy lab must have messed up my analysis or accidently mistaken someone else's biopsy for mine, but after reading this thread it seems like my initial biopsy might have been correct all along.

My doctor suggested doing another endoscopy, but I didn't want to foot the bill for that.  Also, my older brother has Celiac which was confirmed by both a biopsy and blood test.

Eating less gluten did seem to help a little with my bad breath, but SmartMouth Activated Mouthwash along with Flonase nasal spray and a Dr. Tung's tongue scrapper really did the trick to solve the bad breath issue.

I'm just assuming I have Celiac and eating "gluten conscious" until my next endoscopy in about 10 years. If that biopsy comes back positive again, then I'll be strictly gluten-free.  I'm just glad I don't have many symptoms.

 

 

 

What?  Be sure that next endoscopy tests you for lymphoma (cancer) as well!  

Seriously.  You need to do some research as your knowledge of celiac disease is lacking.  Did you fail the entire celiac panel?  Or did your doctor/insurance save cash and just order the very good (but does not catch all celiacs) TTG IgA?  You have a family history, a positive biopsy, what more do you need?  You do realize that this is not about just giving up gluten, don't you?  We just had a member join this year who was told years ago that her tests were "inconclusive" and that she now has suffered with lymphoma (cancer)?

Ugh!  

Endoscopy in 10 years?  Who would even wait 10 years?  This isn't colon cancer and polyps!   Are you talking about a colonoscopy?  Are you even sure you had an endoscopy?  

Be sure you have your bones checked too.....and forget the breath.  You might not have any teeth and implants will be out since your bones will be compromised.

Sorry, if I come on strong, but when I was diagnosed I had no tummy issues.  A few months later, my bones began breaking.  I was undiagnosed for a long time because of mis-informed doctors.  At least it was not stupidity on my part.   So, I urge you to research this disease more!  Hopefully you'll ward on another autoimmune disorder by remaining gluten free.  Find what celiac blood tests were actually taken!  Even if you do not think you have celiac disease, something has caused villi damage -- like a parasite, milk, or something......even more sinister!

Good luck!  

Edited by cyclinglady

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

Celiac.com - Celiac Disease Board Moderator

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I agree completely with cyclinglady! Do you even know that there is such a thing called silent celiac? No symptoms at all but the villi are damaged. 

I see you joined in 2009. Why? Is that when your brother was diagnosed?

IMHO you need to do a lot of research & find out just exactly what you're risking. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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BTW, all first degree relatives of celiacs are supposed to be tested for celiac every 2 years in the absence of symptoms -- immediately if symptoms present. Your kids, your parents & all siblings should be tested. And that goes for your brothers kids too.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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I actually was just about to post this very problem for myself. I got diagnosed by biopsy two weeks ago. The pathology report said that it was consistant with "symptomatic, latent or partially treated" celiac. My blood panal (tissue transglutaminase IgA, IgG and endomysial anntibodies) all came back negative too. I have an appointment with a celiac specialist on thursday. I hope he can answer some questions. I'm curious about why my blood work would be false, but my biopsy physically showed the scalloping and my villi were "normal to bluted."

Maybe it's a new thing? I'll keep you posted. What is the game plan for you now? Will you be trying a gluten-free diet and retesting?

Hi CreekPrincess, I'd love to know how you got on with the specialist. My biopsy has shown mild intraepithelial lymphocytosis including intraepithelial lymphocytes on the tips of my villi - doctor is suggesting Celiac but blood test came back negative. Would love an update from any of you in the same position.:-)

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