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 Blood, Possibly Negative Biopsy

Lisa79

Recommended Posts

Lisa79 Enthusiast
Lisa79
Posted

Well DD had her biopsy today, she said it actually looked very good, we don't have the biopsy results yet so it not negative, but this got me thinking what if it is negative, why would you have positive Antibodies if you didn't have celiac??

I am sure this has been mentioned many times but any replies would be great.

I am sure we will decide to keep DD gluten free even if the biopsy does come back negative.

Thanks

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

There can be many reasons for a false negative on the endoscopy. We have 22 ft of small intestine and the damage can be patchy and there are changes that precede the full villi destruction that some doctors are not aware of to name just a couple. I am glad to see that you are going to put her on the diet no matter what the results of the biopsy are. You can start today and you may have the answer by her symptom resolution before you even go to the return appointment for the biopsy results.

Tim-n-VA Contributor
Tim-n-VA
Posted

As Ravenwoodglass said, the damage to the intestines might not have yet reached detectable levels. A less likely possibility is a false positive on the blood tests but some other autoimmune diseases could cause that.

It might be sematics but one concern is that you said "keep" her gluten free which sounds like she might already be on a gluten free diet which could distort the test results.

oceangirl Collaborator
oceangirl
Posted

I had positive antibodies and a negative biopsy (however, I had been glutenfree/lite for 4 months prior to biopsy) There is NO Question that gluten causes damage to me and genetic testing furthered that proof for me. I think they will understand in the future that there is a spectrum of disease caused by gluten. By the way, the Mayo clinic just completed a comprehensive study using antibodies (I think only) to determine the incidence of celiac disease in this country and they found its incidence has quadrupled since earlier numbers. (This story was on MSNBC; maybe you can still find it.)

Good luck,

lisa

JennyC Enthusiast
JennyC
Posted

Please don't let the doctor convince you that she does not have celiac disease if her biopsy is considered negative. There is a medically accepted term called latent celiac disease. Latent celiac disease takes place when there is positive serology and symptoms but a negative biopsy. The thought is that celiac disease is present, but not enough damage has been done YET to produce villus atrophy. Celiac symptoms and a positive IgA tTG are very diagnostic of celiac.

Lisa79 Enthusiast
Lisa79
Posted
  • Author

Sorry my mistake, I should have said put her on Gluten free, not keep her on gluten-free, she has been eating gluten prior to the biopsy.

My husband wants to wait for the results, but I would like her to go gluten-free straight away.

I had a negative biopsy years ago, but then saying that, testing has improved since then, but if only I had gone gluten free back then I might not have had all the issues I have had leading up to finally getting a positive biopsy. I had ovarian cysts removed, migraines, anxiety and a gallbladder removed, IBS, major constipation which may have lead to prolapse and then finally get diagnosed with celiac disease.

Thanks for the replies.

Roda Rising Star
Roda
Posted
Well DD had her biopsy today, she said it actually looked very good, we don't have the biopsy results yet so it not negative, but this got me thinking what if it is negative, why would you have positive Antibodies if you didn't have celiac??

I am sure this has been mentioned many times but any replies would be great.

I am sure we will decide to keep DD gluten free even if the biopsy does come back negative.

Thanks

My doctor said that my small bowel didn't look too bad only minor changes and he did not think the biopsy would be positive. Well when they called with the results it was positive. So they really can't tell by visually looking at it unless it is really bad. They need the histology for that. The biopsy can have its limitations, and with positve antibodies it is likley she has it.

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

Celiac.com Sponsor (A8-M):


Lisa79 Enthusiast
Lisa79
Posted
  • Author

Thanks for the replies, guess we will just have to wait and see what the results say, but I will be discussing with the GI and DH putting her gluten-free even if the biopsy is neg. Interesting about the latent celiac disease.

Thanks

JennyC Enthusiast
JennyC
Posted
Thanks for the replies, guess we will just have to wait and see what the results say, but I will be discussing with the GI and DH putting her gluten-free even if the biopsy is neg. Interesting about the latent celiac disease.

Thanks

Some doctors are really set in their ways. If the GI dismisses you because of a negative biopsy, please find a new doctor for your child. Sometimes we really have to push hard and advocate for our children.

Archived

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

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


  • Member Statistics

    • Total Members
      131,948
    • Most Online (within 30 mins)
      7,748
    Stephanie94
    Newest Member
    Stephanie94
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.