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 Work, Negative Biopsy?

Bttrfly62

Recommended Posts

Bttrfly62 Rookie
Bttrfly62
Posted

Has anyone ever had positive blood work (tTG and Gliadin Deamidated ABS), but had a negative biopsy? I went in for an endoscopy yesterday and when I woke up, he said everything looked really good and there wasn't any visible damage. Obviously I have to wait for the results in a week or so, but it made me wonder if it was possible that it would come back negative because no damage (or possibly not enough damage?) was done at this point? Thanks in advance! 

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

There are folks that have had negative biopsies even with positive blood work. Sometimes damage is patchy and it can be missed. With positive blood work you do need the diet no matter what the biopsy results turn out to be. Since you have postive blood work and have had your biopsy you can go ahead and start the diet you don't need to wait for the results.

You may even find you get some relief from your symptoms before the biopsy is even back.

cyclinglady Grand Master
cyclinglady
Posted

Visually, my GI thought I looked fine, but my biopsies showed a Marsh Stage IIIB (moderate to severe damage). Based on member comments, this seems to be the norm. After all the villi are pretty small! Remember, too that the small intestinal tract when stretched out is about the size of a tennis court. There are many damaged areas that could be missed. Let's hope your GI took the recommended six biopsy samples!

So, start that gluten-free diet. Chances are you have celiac disease!

Bttrfly62 Rookie
Bttrfly62
Posted
  • Author

I specifically asked how many he was taking (because of this page!) and he said 6- i know more than 6 is better, but at least he hit the minimum! Does the medical profession disregard the possibility of Celiac without a positive biopsy? Just seems like a flawed "gold standard" if it can't be 100% accurate! Seems to me that the biopsy should show SOME damage, or I will be very confused... malabsorption of meds was actually why I ended up in the GI world to begin with... would seem odd if enough damage was done to prevent proper absorption, but not to confirm a diagnosis? But stranger things have happened! Thanks for the responses! 

cyclinglady Grand Master
cyclinglady
Posted

The diagnostic process is flawed and the leading researchers know it, but the technology just is not there. I wish it were easier and consistent!

Waiting is hard when it involves lab tests. However, there is the option of going gluten free. Yep. It can be done. My husband did just that 14 years ago per the poor advice of his GP and my allergist. It worked! Symptoms resolved! He will say that I have had it easier in terms of medical support (friends and family too) but he refuses to do a challenge. Who can blame him?

So, there is always the option of going gluten-free and healing!

Bttrfly62 Rookie
Bttrfly62
Posted
  • Author

Once I take the plunge, I'm not going back- that seems like an awful thing to do to yourself and for no real gain. 6 months is a very, very, long time when you feel terrible! Especially after you've figured out what the problem is and have fixed it! 

captaincrab55 Collaborator
captaincrab55
Posted

Were you eating gluten before the biopsy?     You could have DH.

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

Celiac.com Sponsor (A8-M):


Bttrfly62 Rookie
Bttrfly62
Posted
  • Author

Yep, no change in my daily gluten consumption- which is substantial! Dh? Dermatitis Herpetiformis? I don't have a rash. Honestly, my actual symptoms seem much milder than many others, the most bothersome of which overlap a great deal with my poorly controlled Hashimoto's. I think I was lucky- If you can say that with Celiac? Being on a regularly tested med allowed them to catch an absorption issue. I'm not sure I would ever have pursued any GI path if my ends hadn't been convinced Celiac was causing the dosing and control difficulties. I know many struggle for years to get on the right path and get the support they need. I had a Celiac diagnosis before I knew there was a problem!

cyclinglady Grand Master
cyclinglady
Posted

Lucky you! My Hashi's was swinging wildly just prior to my diagnosis, but my docs just attributed it to the last year of perimenopause. I went for a routine colonoscopy after I went through menopause. I was very anemic. Again, my other doctors just thought it was due to my Thalassemia (gentic anemia). But my GI guy caught it. At the time, I had no intestinal issues. My Hashi's finally stabilized but it took about two years.

nvsmom Community Regular
nvsmom
Posted

Most celiacs do not have visual damage during the biopsy.  That's pretty normal so far.  :)

 

If the biopsy does come back negative, keep in mind that the biopsy has a sensitivity as low as 80%, meaning up to 1 in every celiacs will have a negative biopsy.  A negative biopsy does NOT disregard positive blood tests, it just doesn't support it.  If you have two positive blood tests, the celiac disease is a sure thing.  :(  Page 12 of this report shows how specific the tests actually are: Open Original Shared Link

 

Good luck with the gluten-free diet.  :)

  • 2 weeks later...
Bttrfly62 Rookie
Bttrfly62
Posted
  • Author

Well, results officially came back negative. He basically said that I had 2 strong positive blood results and one weak positive and a negative biopsy, so let's assume no celiac and keep going on gluten until we can see damage and then it's Celaic. Kinda confused and super irritated. I guess I don't understand how specific Celiac tests come back positive but because I havent jeopardized my health enough (I have only had mild symptoms for 3 years and med absorption issues for about a year) to have Celiac? I realize that I can always make that gluten free step myself, but being told it isn't really doing any damage, is not a real motivator. I kinda feel like I was given a pregnancy test at the dr's office that came back positive, but was told "you aren't 12 weeks pregnant so you can keep drinking alcohol" or something. Anyway, just wanted to update-good, but confusing, results.

Palvyre Apprentice
Palvyre
Posted

Please ask for a genetic test and if positive move on to a trial gluten-free diet and retest antibodies in 3-4 months. I had a high positive test and my biopsy was negative. My doctor followed through with the genetic testing and then trial diet. My antibodies went to normal and I received an official diagnosis. Since then I had found out I have osteoporosis due to long term undiagnosed celiac disease, I am only 39 and male. This is not something to mess around with.

foam Apprentice
foam
Posted

You have auto immune disease , positive bloods. You have celiac disease. Genius idea to do nothing, wait for the damage to be permanent, wait till you get t cell cancer, hodgkins. Great idea:). STOP EATING THAT SHIT TODAY, thats what any sane doctor would tell you. Ps have the gene test, if you have that and eat enough bread you will get celiac disease... Eventually 

Bttrfly62 Rookie
Bttrfly62
Posted
  • Author

I felt the same way- i wasn't sure when the medical profession moved to "first do harm, then confirm it's harmful"- but I guess that's where Celiac is categorized? I've had the genetic testing- positive for the genes. Literally, he is not convinced without visible damage. Has anyone else had a GI dr who practiced that way? I do think it was inadvertently caught early (because of the med levels), but early is still positive, right? Has anyone ever had positive bloodwork, negative biopsy, stayed on gluten because doc says it probably isn't Celiac and never actually done any damage to the villi?

ravenwoodglass Mentor
ravenwoodglass
Posted

You really need to consider yourself diagnosed, IMHO. You have the genes and you had positive blood tests. You ARE celiac. Did you get a copy of your biopsy results? How many biopsies did the doctor do? Some idiot doctors won't diagnose until the villi are totally destroyed. Plus with you still on gluten chances are you will need lots more appointments and repeat endos so it is much better financially for the doc to keep you on gluten until your gut is totally destroyed. Celiac...the one disease that doctors want us half dead before they will diagnose.

foam Apprentice
foam
Posted

We are going to come down pretty harshly on this because the long term undiagnosed are living with unfixable problems. Keep eating gluten and you may as well roll a dice on your next autoimmune disease. Get unlucky there and you can end up with organ failure. Youll be at a very high risk of cancer, brain disease etc. Its like dead serious buisness, for you gluten is poison and thats the respect it needs.

Bttrfly62 Rookie
Bttrfly62
Posted
  • Author

It's funny because i actually already have 2 autoimmune diseases- I guess I just don't understand why he was so dismissive. It isn't like I'm hoping something is wrong. I actually expected negative bloodworm, but if the bloodwork doesn't matter, I guess I don't understand the point in doing it at all. I've generally been pretty happy with my medical care, but I can't say I'm at all happy this time. As many long term Celiacs can attest to on the forum, remaining gluten free can be a real challenge to maintain when you are told you don't have Celiac (and are only very mildly affected by the symptoms) and gluten will not affect you either way.

notme Experienced
notme
Posted

I felt the same way- i wasn't sure when the medical profession moved to "first do harm, then confirm it's harmful"- but I guess that's where Celiac is categorized? I've had the genetic testing- positive for the genes. Literally, he is not convinced without visible damage. Has anyone else had a GI dr who practiced that way? I do think it was inadvertently caught early (because of the med levels), but early is still positive, right? Has anyone ever had positive bloodwork, negative biopsy, stayed on gluten because doc says it probably isn't Celiac and never actually done any damage to the villi?

 

you have positive bloodwork!  not to mention the genes and the other AI diseases....  you have celiac.  get a new doctor.  i *was* half dead (ok, mostly dead!) before they even considered testing for celiac (never even heard of it, been going to doctor after doctor with seemingly unrelated symptoms)  start eating gluten free, read the newbie 101 section on the 'coping with' forum, and start feeling better!  what the crap is wrong with that doctor....  why in the world would he just dismiss such a serious (and systemic!) disease is beyond me.

 

welcome to the club you never wanted to join  <_<  the good news is that eating gluten free will probably make your other ai diseases more manageable.  good luck and welcome to the forum :)

bartfull Rising Star
bartfull
Posted

Get copies of all the blood work, the gene test, and of the biopsies. Then take them to a different doctor. If you're lucky enough to find a decent doctor he will look at those tests and give you an official diagnosis.

squirmingitch Veteran
squirmingitch
Posted

The bottom line here is that the vast majority of GI's STILL don't understand celiac disease nor how to diagnose it and apparently have their heads up their ass when they think it's okay for you to keep damaging yourself until THEY can see the damage. It's a very sad state of affairs. Those of us who have been on here a while have heard it over & over & over again and still it seems to shock us every time.

It's extremely difficult to find a GI who actually knows what they're talking about when it comes to celiac disease. 

nvsmom Community Regular
nvsmom
Posted

Well, results officially came back negative. He basically said that I had 2 strong positive blood results and one weak positive and a negative biopsy, so let's assume no celiac and keep going on gluten until we can see damage and then it's Celaic. Kinda confused and super irritated. I guess I don't understand how specific Celiac tests come back positive but because I havent jeopardized my health enough (I have only had mild symptoms for 3 years and med absorption issues for about a year) to have Celiac? I realize that I can always make that gluten free step myself, but being told it isn't really doing any damage, is not a real motivator. I kinda feel like I was given a pregnancy test at the dr's office that came back positive, but was told "you aren't 12 weeks pregnant so you can keep drinking alcohol" or something. Anyway, just wanted to update-good, but confusing, results.

 

 Ugh... This is why celiacs suffer for so many years.  :(  They MISSED the damage in the biopsy so you don't have celiac?! Sigh.

 

I agree that you most likely do have celiac disease.  A negative biopsy does not support your positive tests.  That's it.  It doesn't mean that it cancels them out.

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.