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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding. I will have my first appt with a GI dr on March 4th I will not eat gluten again - at least not on purpose ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
×
×
  • 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.