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

Blood Test Positive...biopsy Negative.

MollyBrack

Recommended Posts

MollyBrack Newbie
MollyBrack
Posted

Two years ago I was diagnosed via bloodwork as having Celiac. Here are the results from that test:

Gliadin IgA Ab 32 0 - 19 Units H Tissue Transglut Ab IgA 98 0 - 19 Units H

 

Last week I was hospitalized for gallbladder surgery and an upper GI series of tests were done including a biopsy testing for Celiac which came back negative. 

 

One GI doc said that the blood test is 100% reliable and no biopsy was necessary.

The doc who did the endoscopy said that the blood work is completely unreliable and only a biopsy will tell the truth.

P.S. Both docs said "it's just an allergy...you can eat bread once in a while, just don't over-do it"

 

Now what??

 

Have I gone two years without croissants for NOTHING???

;)

 

 

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Hi,

 

You were diagnosed two years ago. If you have been following a gluten-free diet for two years, it is quite likely that your villi have healed, and will give a negative biopsy result. Likewise, a blood test today would not find antibodies, because you don't make them without gluten, and that's why your villi can heal.

 

I showed a strong positive on a biopsy in 2000. A repeat procedure a few years later showed no abnormalities. It didn't mean I don't have celiac disease; it meant that my adherence to the diet was successful, and my intestines had healed.

 

A competent gastroenterologist should know that.

 

:(

bartfull Rising Star
bartfull
Posted

If you've been gluten-free for 2 years you will test negative on the blood tests and the biopsy. Your doctor should KNOW that. And both of them should know that you CAN'T eat a little bread once in a while. They are both idiots, IMO!

MollyBrack Newbie
MollyBrack
Posted
  • Author

Yes, this makes sense to me. I read up a bit more and understand why the biopsy could be negative either way. 

 

And yes, it is alarming that both of the GI "specialists" I've seen, my GP and my rheumatologist ALL have said that Celiac disease is "just an allergy". 

notme Experienced
notme
Posted

they should give them all celiac 'connect the dots' workbooks - if you have rheumatoid arthritis, that is also related to celiac.  i guess they all lose $$ if they don't treat you for one *symptom* at a time..........  and eating bread once in awhile will keep you sick enough to keep going to the doctor:  job security!  if you eat enough gluten, i guess you can keep all sorts of doctors in business :(

w8in4dave Community Regular
w8in4dave
Posted

Wow!! Thats crazy!! I mean I read all over that you have to be eating Gluten for a while to be tested positive. Why would they tell you that? That is some crazy stuff right there!! So have you felt better after your two years Gluten Free? 

MollyBrack Newbie
MollyBrack
Posted
  • Author

I just got  a letter from the GI practice congratulating me on being celiac free. I brought up the thing about negative results because I've been off gluten to my GP and she dismissed it as "internet stuff". 

 

So, who do you believe...four people who have been to medical school or a hundred different websites that contradict them? The one site that I think gives some credibility is www.uptodate.com which is the one many doctors use when researching a diagnosis. It is the latest information from medical journals and research outcomes. You have to be a doctor to see the whole site but consumers can see parts of it. My rheumatologist showed me the section on celiac where it CLEARLY says that it is NOT an allergy but an auto-immune disorder. Then he told me it's really an allergy and I should have birthday cake if I want it.

 

Dave -- I wish I could say that I feel a lot better off of gluten, but really only a couple of my symptoms have improved (headaches and brain fog). I do have rheumatoid arthritis so many other symptoms are the same - joint pain, fatigue, etc. It's sometimes hard to tell if being gluten-free has helped, but I think that it has and I intend to remain so. Although, I have to say I experimented with a giant chocolate eclair one day just to see what would happen and  what happened was...nothing. But other times I've gotten a little soy sauce and been sick immediately.

 

It's all very confusing and frustrating not to feel confident in my diagnosis and treatment, and to have my doctors all poo-pooing the whole thing. But I gather from reading various forums that this is a common situation and that many healthcare professionals still don't really understand Celiac disease. 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Open Original Shared Link

Why not believe people with a medical degree who are experts in celiac Disease?

w8in4dave Community Regular
w8in4dave
Posted

I just got  a letter from the GI practice congratulating me on being celiac free. I brought up the thing about negative results because I've been off gluten to my GP and she dismissed it as "internet stuff". 

 

So, who do you believe...four people who have been to medical school or a hundred different websites that contradict them? The one site that I think gives some credibility is www.uptodate.com which is the one many doctors use when researching a diagnosis. It is the latest information from medical journals and research outcomes. You have to be a doctor to see the whole site but consumers can see parts of it. My rheumatologist showed me the section on celiac where it CLEARLY says that it is NOT an allergy but an auto-immune disorder. Then he told me it's really an allergy and I should have birthday cake if I want it.

 

Dave -- I wish I could say that I feel a lot better off of gluten, but really only a couple of my symptoms have improved (headaches and brain fog). I do have rheumatoid arthritis so many other symptoms are the same - joint pain, fatigue, etc. It's sometimes hard to tell if being gluten-free has helped, but I think that it has and I intend to remain so. Although, I have to say I experimented with a giant chocolate eclair one day just to see what would happen and  what happened was...nothing. But other times I've gotten a little soy sauce and been sick immediately.

 

It's all very confusing and frustrating not to feel confident in my diagnosis and treatment, and to have my doctors all poo-pooing the whole thing. But I gather from reading various forums that this is a common situation and that many healthcare professionals still don't really understand Celiac disease. 

 

Sorry to hear after 2 years your really not feeling any better. Wish there was something magical I could say. But there isn't. I am going to pop into that site you posted. Good luck to you I hope you find the answer you need.

0range Apprentice
0range
Posted

Many doctors are very deficient in their knowledge about autoimmune disorders, not just celiac. Hasn't it been uniformly agreed upon that it isn't an allergy or an intolerance? Strikes me as so odd that specialists would not know this.

Mum in Norway Contributor
Mum in Norway
Posted

I study nutrition, and last fall we had a course on diseases. This was only very basic, but even there we learnd that 'celiac is an autoimmune disease that is triggerd by consuming gluten. Gluten will then caus the body to attack the small intestine, resulting in a flattening of the villi. Only cure is being glutenfree for life, and after some time of being glutenfree the intestine will heal and there will be no sign of the disease.'.

 

Thats about all it said about celiac, but it seems to be more than many docs' know! How can that possibly be?

nora-n Rookie
nora-n
Posted

of course the biopsy will be negative after a while off gluten!!

 

Where was that?

Do they really tell patients their celiac went away?

bartfull Rising Star
bartfull
Posted

You should contact the AMA and let them know what these doctors  are telling patients. They should be stipped of their licenses to practise!

Archived

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

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


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    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.