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

Those Of You With Positive Biopsy......


slpinsd

Recommended Posts

slpinsd Contributor

How many out there have had a positive biopsy where your dr. said that they saw intestinal damage during the endoscopy? How many was the damage unnoticed during the procedure, but came back positive? I'm wondering if it actually can be seen with the naked eye?


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



Celiac.com Sponsor (A8-M):



Guest schmenge
How many out there have had a positive biopsy where your dr. said that they saw intestinal damage during the endoscopy? How many was the damage unnoticed during the procedure, but came back positive? I'm wondering if it actually can be seen with the naked eye?

I have the pictures at home that clearly show the damage. When I came out of recovery the doctor showed me the pictures and told me that while it would take a few days for the biopsy results he sure they would come back and tell me I have Celiac.

At the time I had no idea what that meant. It was not until I was researching on the Internet that I found that Celiac and the Sprue my grandmother had were one in the same. Neither was even on my radar screen.

mbg98 Contributor
How many out there have had a positive biopsy where your dr. said that they saw intestinal damage during the endoscopy? How many was the damage unnoticed during the procedure, but came back positive? I'm wondering if it actually can be seen with the naked eye?

My doctor did a endoscope looking for something else and saw that there was some mild damage, he did a biopsy and the results came back that I more than likley have celiac sprue but to follow up with a bloodtest, that just came back positive.

godd luck!

skoki-mom Explorer

You can't see the villi themselves with the naked eye. However, the damaged intestine can take on a scalloped appearance. Mine was like this. However, the biopsy was still required to verify the microscopic findings and verify the diagnosis. My GI told me I had classic scalloping associated with celiac disease as soon as my endo was done, then he called me in 2 weeks with the results from patho. Soooo, while yes, in my case, the changes were seen by him, just because changes in the appearance of the small intestine may not be visible, it doesn't mean you do not have celiac disease. It is the microscopic exam of the villi themselves that shows the flattening. Am I making any sense????

plantime Contributor

My doc was looking for ulcers, but instead found "patches of red, and inflammation." He took samples from the patches, he wanted to know what was causing them. What he found was what I had already told him: celiac.

DingoGirl Enthusiast

I was startled to learn, as I had never heard of Celiac, that I had literally NO villi left at all, intestine was completely flattened.....which explained complete malmutrition and chronically not being able to keep weight on...... :blink:

jerseyangel Proficient

My doctor found 'inflammation' while doing the endo. He told me to begin the gluten free diet that day.


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



Celiac.com Sponsor (A8-M):



chrissy Collaborator

our kid's ped gi told me that the only thing he could see was that there didn't seem to be as many folds as you would see in a normal intestine,(but her esophagus looked good). i compared it to the picture of her twin sister's endo(done for reflux) and they looked about the same.(except the esophagus) turns out the "good esophagus" was actually inflamed from reflux (with no symptoms) and both girls actually have reflux. neither showed damage in their intestine, both had postitive blood tests.

christine

  • 2 weeks later...
slpinsd Contributor

Thanks for your input. I went back to the GI doc, and she showed me the pictures showing mild scalloping of the folds. She said it wasn't "classic" damage, but it looked like damage. My biopsy was negative. She won't dx me with Celiac b/c of that, but I'm getting a second opinion on the biopsy!

Archived

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

  • 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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

    2. - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    3. - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    4. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,260
    • Most Online (within 30 mins)
      7,748

    sbr
    Newest Member
    sbr
    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

    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
×
×
  • 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.