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

My Biopsy Results Were Negative - I Am Devastated

bennyboy

Recommended Posts

bennyboy Newbie
bennyboy
Posted

I have just received my biopsy results and they are negative. I am absolutely shellshocked. I have had symptoms of Celiac's for many years inluding bloating, discomfort, canker sores all over my throat, skin rashes, cold sores, dry eyes and blepharitis. My blood test was positive two months ago. I was actually looking forward to improvement in my health. Was told after biopsy that reasons for positive bloodwork were either a false postive or it means that I will have Celiac's in the future. I had another blood test ordered and it was also postive so that ruled out a false positive. I am so confused. I am scared that I am just going to be diagnosed with IBS and continue to struggle. Has anyone else recieved a negative biopsy but know that they have Celiac's??

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

Celiac.com Sponsor (A8-M):


Kaycee Collaborator
Kaycee
Posted

Bennyboy, you have had two positive blood tests for coeliac. I had three positive blood test for coeliac over a period of 5 months. The biopsy I had was negative, but I consider myself coeliac based on the blood test and the improvement I have had on the diet.

Have you tried the diet, has it made any improvements to your health? You need to take this into consideration, if by being on the diet you have shown improvements it is quite an indicator that gluten could be a problem for you. Also, you want to stop eating gluten before you end up with gut damage. You don't really want to be eating gluten if it is going to destroy your villi in the long run.

You don't need a definitive positve result to go gluten free, you need to do it for your health.

Cathy

Ursa Major Collaborator
Ursa Major
Posted

Benny, the problem with biopsies is, that unless at least five to ten biopsies are taken, false negative results are very likely, because damage to your villi may be patchy and easily missed. A negative biopsy can never rule out celiac disease, it can only confirm it if it is positive.

You've have two positive blood tests, and you have symptoms. I would suggest you try the gluten-free diet. If it helps clear your symptoms, you can consider yourself to have celiac disease. Some doctors will diagnose celiac disease based on a combination of positive bloodwork and a positive diet response.

IBS is a junk diagnosis anyway. All it means is that your bowels are irritated. Obviously, that would mean that something is causing them to be irritated. A doctor declaring a symptom a diagnosis is just doing that out of pure laziness and ignorance, and not wanting to investigate further. Plus, of course, it makes the pharmaceutical companies happy, as IBS drugs make them money, while a gluten-free diet won't.

By the way, there is no such a thing as a false positive blood result when it comes to celiac disease. There are tons of false negatives, but a false positive is so rare that the possibility is close to zero.

bennyboy Newbie
bennyboy
Posted
  • Author

Hi Thanks for your replies. Yes I did go gluten free for 7 weeks a few months back. It was the best 7 weeks I have had in about 10 years. All my symtpoms started subsiding and I had so much energy. My blepharitis started clearing up for the first time since I have had it. As soon as I started eaten gluten again my eyes started hurting. I told the doctor this and I could tell he was thinking "mind over matter". I will definitely go on a gluten free diet for the rest of my life regardless of what biopsies say. My bloodwork should be enough. Thanks guys I feel heaps more hopeful.

irish daveyboy Community Regular
irish daveyboy
Posted
Hi Thanks for your replies. Yes I did go gluten free for 7 weeks a few months back. It was the best 7 weeks I have had in about 10 years. All my symtpoms started subsiding and I had so much energy. My blepharitis started clearing up for the first time since I have had it. As soon as I started eaten gluten again my eyes started hurting. I told the doctor this and I could tell he was thinking "mind over matter". I will definitely go on a gluten free diet for the rest of my life regardless of what biopsies say. My bloodwork should be enough. Thanks guys I feel heaps more hopeful.

Hi 'bennyboy',

Just a thought you need to be consuming GLUTEN for about 6 - 8 wks prior to biopsy,

otherwise you can get a negative result. Your Villi my not have been damaged that much

and if you had been gluten free prior to biopsy the villi could have repaired somewhat

making analysis difficult ?

bennyboy Newbie
bennyboy
Posted
  • Author

Good point Irish DaveyBoy. I was gluten free for 7 weeks. Then my endoscopy date came up and I was told to eat gluten. So I was only eaten gluten for 2 and a half weeks before I took the test. And I was extremely strict in that 7 weeks I would be stunned if anything with gluten in it passed my lips in that time. All my doctors said this would be an OK length of time before test, but I guess maybe it wasn't. I think my intestines may have healed some.

ravenwoodglass Mentor
ravenwoodglass
Posted
Good point Irish DaveyBoy. I was gluten free for 7 weeks. Then my endoscopy date came up and I was told to eat gluten. So I was only eaten gluten for 2 and a half weeks before I took the test. And I was extremely strict in that 7 weeks I would be stunned if anything with gluten in it passed my lips in that time. All my doctors said this would be an OK length of time before test, but I guess maybe it wasn't. I think my intestines may have healed some.

There is also the factor that there may have been changes such a scalloping and mucosal changes that the doctor did not consider to be a positive for celiac. You may want to get your hands on a coopy of the report. Also, as stated there are no false negatives on the blood tests, if you are producing the antibodies to show positive you are reacting. Many doctors want us to be close to dead before they diagnose, unfortunately that means that the autoimmune process will be wrecking havoc with our bodies for sometimes years causing lots of seemingly unrelated problems. I am relieved to hear you are going to go back to gluten-free, your bodies resopnse to the diet is really the best test.

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

benny:

I fully agree with what others have posted.

Can you get a copy of your blood tests and post them? I'd be interested to see which of the celiac tests you were positive on. There is a set of five tests that your dr. should have run in the whole Celiac panel.

The latest research is that you need to be eating gluten for a number of months, at a relatively high level of gluten, for the biopsy to be accurate. Your dr. also needed to take multiple biopsies in multiple locations.

If the above two procedures weren't followed, then it is hard to say that it is accurate, in my opinion.

Many of us on here have had problems with a dx, but we tried the diet---and were given our lives back. You may also have non-Celiac gluten intolerance, which doesn't cause the traditional villi damage. You can still react just as severely though.

Bottom line is: the gluten-free diet worked for you, you have positive bloodwork---those two are enough to verify that you have some sort of problem with gluten. You don't need a doctor's prescription or permission to go gluten free. Stick around, and stick with the diet.

Best of luck,

Laura

CarlaB Enthusiast
CarlaB
Posted

I would consider positive blood work and a positive dietary response to be a diagnosis.

You don't need any prescriptions or doctor's permission to eat gluten-free, so go for it!

TrillumHunter Enthusiast
TrillumHunter
Posted

I was dx'ed with only blood work. Now I'm a little over a month gluten-free and feeling GREAT! I have very few symptoms left and they are mild. I came on here thinking I needed a positive biopsy as well but the great people here helped me understand why I didn't. Go gluten free and never look back!

SunnyDyRain Enthusiast
SunnyDyRain
Posted
Hi Thanks for your replies. Yes I did go gluten free for 7 weeks a few months back. It was the best 7 weeks I have had in about 10 years. All my symtpoms started subsiding and I had so much energy. My blepharitis started clearing up for the first time since I have had it. As soon as I started eaten gluten again my eyes started hurting. I told the doctor this and I could tell he was thinking "mind over matter". I will definitely go on a gluten free diet for the rest of my life regardless of what biopsies say. My bloodwork should be enough. Thanks guys I feel heaps more hopeful.

I find it so funny that doctors tell us, "It's in your head!". In your case, if eating gluten-free was making you feel better, does it matter really if it's a real postive reaction in your intestines, or a mind thing? You feel better, does it matter how you got there?

I feel you have a daignosis. I was dx'd on blood test alone, didn't even want to do a biopsy, just wanted to start getting better ASAP. Your doctor can't do much, no perscriptions to help. Just eat on the diet.

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. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.