Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Neg Biopsies

jolenevw

Recommended Posts

jolenevw Newbie
jolenevw
Posted

My family doc recieved my results of my biopcies(sp) they happened to be negative. I haven't seen my surgeon yet, to get his diagnosis. My question is , Is it still possible to celiac disease if your tests come back negative? I find out on moday from my surgeon.I'm still edgy that he told the nurse to tell me that he feels its celiac disease and thats why he went as far as to take the biopcies. I don't know i may be getting because monday is just around the corner. I've stayed off gluten now for almost 3 weeks and feel a whole lot better. I just don't know anymore, i guess i'm confussed.Thanks for letting me rant a bit just worried.

Jolene

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Did you have blood tests too? If so, which ones? Have you had a gene test? If you do not have the gene you are 99.999% sure you do not have celiac but you could have just an intolerance then. If you have the gene, then you have predisposition to it and can have it activated.

Yes, you can still have celiac disease with a negative biopsy. If there is not damage yet(in early stages of celiac disease) or if there is sporadic damage then they will miss a diagnosis.

Also, if you were gluten free prior to testing that can interfere with results.

Carriefaith Enthusiast
Carriefaith
Posted

How many biopsies did they take? If they only took 1 or 2 then it is possible they have missed the damage; however, if they took 5+ from different sections of the upper small intestine then they most likely would have found damage if present. If you have had negative blood tests and biopsies then you could still be gluten or wheat intolerant. A celiac gene test will tell you for sure if you carry the celiac gene.

jolenevw Newbie
jolenevw
Posted
  • Author

Thank you for repling so fast to my post. I haven't had any of the blood work done. I think the surgeon was pretty set on that fact that it was celiac disease so one botheres to issue blood work. I can't really have the blood work done now can I since i've gluten free right? They took a total of three biopcies, now would that be sufficient or not? I'm just concerened becuase i reallt don't want to be back at square one again with no ansewers. I bet alot of people know how i feel. Thanks again

Jolene

Guest nini
Guest nini
Posted

I can't believe the Dr. would do the biopsies first without the blood work. That seems a bit like "jumping the gun" to me. I dunno.

If being gluten free makes you feel better, then stay off gluten. If you want or need the medical "proof" you would have to go back to consuming gluten for quite a while before getting the blood work. Or you could do the Enterolab tests. Those seem to have worked for a lot of people.

KaitiUSA Enthusiast
KaitiUSA
Posted
Thank you for repling so fast to my post. I haven't had any of the blood work done. I think the surgeon was pretty set on that fact that it was celiac disease so one botheres to issue blood work. I can't really have the blood work done now can I since i've gluten free right? They took a total of three biopcies, now would that be sufficient or not? I'm just concerened becuase i reallt don't want to be back at square one again with no ansewers. I bet alot of people know how i feel. Thanks again

Jolene

Do you want to have an official diagnosis? Or doesn't that matter? If you want an official diagnosis then in order for testing you need to be on gluten. You need to be on gluten for about 3 months consuming equivalent to 3 pieces of bread per day.

They never usually do biopsies first. It can rule it in if it is positive but it can't rule it out because you can get a false negative if you have no damage yet or sporadic damage.

The complete panel of blood tests has been very efficient in detecting celiac. My blood tests and gene test were enough for a diagnosis. The doctor did not even want to do a biopsy.

As Nisla said, an Enterolab may be an option because they still do testing as long as you have had gluten within the past year and they test for genes, tTG, malabsorption, etc. Check out more about them at www.enterolab.com. This is a great test. Some doctors accept it and some do not.

2old4 Rookie
2old4
Posted

Jolene-

I had my bloodwork done approx same time as my biopsy. The doctor told me he saw intestinal damage when he was doing the biopsy but the results from the specimens taken were negative. I asked why and he said that he only took 3 and those areas must not have been affected. My bloodwork was all positive. I am going to see him again in a few weeks and ask specific questions about my numbers. Good luck, don't give up.

Patty

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

Celiac.com Sponsor (A8-M):


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. trents
      - trents replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

      Take it easy! I was just prompting you for some clarification. In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution...
    2. Mynx
      - Mynx replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a...
    3. Mynx
      - Mynx replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate...
    4. trents
      - trents replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those...
    5. Mynx
      - Mynx replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,875
    • Most Online (within 30 mins)
      7,748
    Charli.stoz09
    Newest Member
    Charli.stoz09
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
×
×
  • Create New...