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Positive Biopsy And Negative Blood Work

Acersma

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Acersma Rookie
Acersma
Posted

My name is Jody. I have had an unidentified Autoimmune disease diagnosed since about 2002. Joint pain, muscle weakness. I have suffered w/ Depression and anxiety for years. After 2 1/2 years of testing and the only thing showing up was that I had an autoimmune disease, sorry not sure what it is, maybe something will surface later. A few months ago I started gettting nauseous even vomiting after meals. I then started bloating everytime I ate or drank anything. I went in and had ultrasound on gall bladder then hida scan after polpys were seen. Surgeon said nothing wrong w/ me. I went back to my PCP and she ordered a Colonoscopy and Endoscopy. the GI said i had esophogitis, gerd, reflux and a hiatal hernia. Said to call PCP. I called there and tehy said wait till biopsies are in. I got call last week from GI nurse, she said biopsy showed Celiac have to get blood test. Did that and she called today said, nope no Celiac call and make appt for a month from now. I said no. I need to see him ASAP. Well I have appt for tomorrow a.m. Any thoughts or ideas? Wehn I did the blood test I was eating mashed potatoes (bland for the stomach issues w/ Gerd and Hernia)I wasn't eating bread or pretzels or anything real "gluteny". I am freaking out as my life is on hold due to my stomach.

Thanks for any thoughts,

Jody

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gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Hi Jody,

Did they do a biopsy and that is what came back positive for celiacs? If so, you have Celiacs. The biopsy is the gold standard test. If the biopsy is poistive, you have celiacs. The blood work is frequently false positive and false negative. Blood work is usually the first test done too.

My blood work was negative but the biopsy was positive. I have celiacs and feel much better on the diet.

Hope that helped some.

BTW: Geta copy of the results of the blood work - what was ordered and what the results were. exact names and numbers. People on this site can interpret the results if needed.

Acersma Rookie
Acersma
Posted
  • Author
Hi Jody,

Did they do a biopsy and that is what came back positive for celiacs? If so, you have Celiacs. The biopsy is the gold standard test. If the biopsy is poistive, you have celiacs. The blood work is frequently false positive and false negative. Blood work is usually the first test done too.

My blood work was negative but the biopsy was positive. I have celiacs and feel much better on the diet.

Hope that helped some.

BTW: Geta copy of the results of the blood work - what was ordered and what the results were. exact names and numbers. People on this site can interpret the results if needed.

Acersma Rookie
Acersma
Posted
  • Author

Didn't mean to post blank before. Still getting used to this forum. I will write everything down. I will make sure of it. I just feel like so much of what everyone is saying is what I am going through. When i went through the joint/weakness and all of those problems it took a while to find a Dr to say hey this is a problem I am sorry we will keep looking but w/ autoimmune problems they sometimes take a while to diagnose. And when this started I didn't even think that is what is was. I was thinking oh great more dr's to tell me it is in my head....nope not in my head. I am just physically and emotionally drained. I see that some people have spent over half of their lives going through all of this and still sometimes w/out answers. I am anxious to hear what he has to say tomorrow. Thanks for the very quick response.

Jody

Ursa Major Collaborator
Ursa Major
Posted
Hi Jody,

The blood work is frequently false positive and false negative.

Actually, that is not accurate. There are no false positives with the blood work. But there are plenty of false negatives. The same goes for the biopsy.

Jody, since you already had the biopsy, you obviously have celiac disease. The next step is to start the gluten-free diet, which you should do immediately. Trying the diet is the best test anyway. If you feel better without gluten, then it is the problem.

Sorry this is short, I need to go somewhere in five minutes. I hope you feel better quickly after starting the diet.

Nancym Enthusiast
Nancym
Posted

Blood tests for celiac disease are often negative if you don't have full villious atrophy, you can be in the early stages and thus have a positive biopsy and a negative blood test.

loraleena Contributor
loraleena
Posted

If the biopsy was positive you have celiacs. These damn doctors don't know a thing!!

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Acersma Rookie
Acersma
Posted
  • Author
If the biopsy was positive you have celiacs. These damn doctors don't know a thing!!

I went today and the GI said that I have IBS, Hiatal Hernia and Esophogitis. he said the Celiac biopsy showed only one of three positive tests for Celiac and the Blood work was negative and I should re-test in a couple years and for now take medicine for my allergies which I have been suffereing w/ for two years straight and to take an anti-depressants. He also said no dairy for 2 weeks, only yogart. and to eat enough fiber to get rid of constipation...which I DO NOT have. Confused, stressed, and just want to say screw it all. Thanks for all the input.

Jody.

natalie Apprentice
natalie
Posted
I went today and the GI said that I have IBS, Hiatal Hernia and Esophogitis. he said the Celiac biopsy showed only one of three positive tests for Celiac and the Blood work was negative and I should re-test in a couple years and for now take medicine for my allergies which I have been suffereing w/ for two years straight and to take an anti-depressants. He also said no dairy for 2 weeks, only yogart. and to eat enough fiber to get rid of constipation...which I DO NOT have. Confused, stressed, and just want to say screw it all. Thanks for all the input.

Jody.

IBS is usually what the doctor diagnosis when he has no clue. If the biopsy showed Celiac...then you have Celiac. I didn't have positive blood work, but I had a positive biopsy.

I'd get a second opinion if you can.

kbtoyssni Contributor
kbtoyssni
Posted

If you have a positive biopsy, that's all you need to diagnose celiac. I don't see a reason why you should continue getting testing - just go gluten-free! It's going to be a huge challenge at first, but things get much easier as you figure out safe brands. It's scary at first, but you're lucky that you've got a very treatable disease here. BTW - I also had joint/muscle pain and depression which completely disappeared after going gluten-free.

happygirl Collaborator
happygirl
Posted

get a copy of the pathology report that discusses your biopsies.

from Open Original Shared Link :

"The features in a duodenal biopsy suggesting celiac disease include an intraepithelial lymphocytosis, villous atrophy, crypt hypertrophy, abnormal epithelial cells and increased chronic inflammatory cells in the lamina propria."

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    • trents
      Medication

      By trents · Posted

      I don't see how cornstarch could alter the test results. Where did you read that?
    • knitty kitty
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      By knitty kitty · Posted

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      Taking Probiotics but Still Getting Sick After Gluten – Advice?

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    • Julie 911
      Medication

      By Julie 911 · Posted

      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Medication

      By trents · Posted

      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
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