Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Positive Biopsy And Negative Blood Work

Acersma

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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."

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.