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

Frustrated With Results

PaulaG

Recommended Posts

PaulaG Newbie
PaulaG
Posted

I know from reading everyone's posting on here, that getting a negative blood result is normal. I had a doctors appointment today where my doctor told me that my blood work was inconclusive. What does that mean?? Now i have to have a biospy done, and i cant help but wonder, why do i even bother.

Has anyone gone through all the testing to still get a negative result?? And how long does is take to get results back from a biospy?? I am from Canada, so this may vary.

I wasnt expecting the news i got today, and I am just really fed up.

Also, she wants to order a Cat Scan... why??

Any feedback would be great.

Thanks

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

Celiac.com Sponsor (A8-M):


Michi8 Contributor
Michi8
Posted
I know from reading everyone's posting on here, that getting a negative blood result is normal. I had a doctors appointment today where my doctor told me that my blood work was inconclusive. What does that mean?? Now i have to have a biospy done, and i cant help but wonder, why do i even bother.

Has anyone gone through all the testing to still get a negative result?? And how long does is take to get results back from a biospy?? I am from Canada, so this may vary.

I wasnt expecting the news i got today, and I am just really fed up.

Also, she wants to order a Cat Scan... why??

Any feedback would be great.

Thanks

Don't know about the Cat Scan. I had negative blood results as well, but had sufficient symptoms and family history of GI issues to warrant a gastroscopy, biopsy and colonoscopy. I'm still waiting (impatiently) for my gastroscopy (scheduled for the end of November) and my colonoscopy is scheduled for March. The wait times in Central Alberta are quite long. :blink: Once I have the tests, the results should be back in about 2 weeks. I'll be going gluten free the minute I'm done my gastroscopy...although now I'm wondering if I'd need to keep eating gluten until I'm done my colonoscopy?! Yikes! :o

Michelle

CarlaB Enthusiast
CarlaB
Posted

Yep. I went through all the testing and got a negative result. As it ends up, I have the genes for gluten intolerance, not celiac, so I don't think it ever would have showed up with conventional testing. Enterolab confirmed this -- so has dietary response.

Terch Apprentice
Terch
Posted
I know from reading everyone's posting on here, that getting a negative blood result is normal. I had a doctors appointment today where my doctor told me that my blood work was inconclusive. What does that mean?? Now i have to have a biospy done, and i cant help but wonder, why do i even bother.

Has anyone gone through all the testing to still get a negative result?? And how long does is take to get results back from a biospy?? I am from Canada, so this may vary.

I wasnt expecting the news i got today, and I am just really fed up.

Also, she wants to order a Cat Scan... why??

Any feedback would be great.

Thanks

I am from Canada as well, Ontario to be precise. I had a biopsy done 5 weeks ago and get the results tomorrow so it's a hell of long wait. I would bother with the tests just to rule out a few things that could be scarier than celiacs. I think I would love if my dr wanted to do a cat scan, they can see a lot with it and that way you won't have to go through all the other stuff like ultra sounds and upper barrium swallows etc.

Can I ask what your symptoms are and what made your doctor suspect celiacs? Was this your family doctor or have you seen a GI specialist?

Thanks Terch

PaulaG Newbie
PaulaG
Posted
  • Author
I am from Canada as well, Ontario to be precise. I had a biopsy done 5 weeks ago and get the results tomorrow so it's a hell of long wait. I would bother with the tests just to rule out a few things that could be scarier than celiacs. I think I would love if my dr wanted to do a cat scan, they can see a lot with it and that way you won't have to go through all the other stuff like ultra sounds and upper barrium swallows etc.

Can I ask what your symptoms are and what made your doctor suspect celiacs? Was this your family doctor or have you seen a GI specialist?

Thanks Terch

Hi Terch,

My doctor referred me to a GI specialist, and i have already had the colonocopy, the Upper GI, and blood work, which I found out today were inconclusive.

As for my symptoms, stomach pains all the time, bloating, gas, diarrhea, severe cramping after eating, depression, mood swings. The cramping is so bad, that i dont even bother eating anywhere other then home, where there is a bathroom close by. I have lost close to 15 pounds. I am now done to 89 pounds.

I dont know what the Cat Scan is about, but, i am getting desperate for answers. I just don't want the Doctor to come back and say its IBS.....

My biospy is schedule for October 25th.

LKelly8 Rookie
LKelly8
Posted

Sounds to me like your bloodwork was borderline celiac. Onto the endo for confirmation. You're hot on the trail and almost there, just hang on a bit longer! ;):) The cat scan and colonoscopy aren't diagnostic for celiac. Those are to rule out other illnesses/problems, with or without celiac.

Ask your doctor why you need to have these tests. Don't let her get away with mumbling some medical jargon at you and then fleeing the exam room. Take out a notebook and a pen and ask her, "Could you spell that for me? What is that exactly?". You are your best advocate.

Get copies of all your lab work and keep them in a file at home. That way you not only get to see the report yourself but should this doc fall off the face of the earth for some reason, you still have copies to hand your new doctor. (and docs love it when they don't have to wait for files)

DelphicDragon Newbie
DelphicDragon
Posted

Had a CT scan- wasn't really anything bad (probably the least invasive) Mine was to rule out gall stones and possible intestinal cancer. (Negative! Yeah!)

A word about blood tests - make sure you get the results. I've been struggling with my doctor for almost a week now trying to get my results (one was positive, but she refuses to tell me which one without an office visit - ABSURD!) They are also really helpful if you ever need to get a second opinion. I always bring a copy of my most recent blood work as well as any pertinent tests results - partially so I don't have to be stuck with a needle again- to my doctor's visits.

Another recommendation - question everything. You are your own best advocate for any illness. If the blood work is borderline persue it! Don't let a doc tell you that you're fine when you feel awful!

Just my words of wisdom from dealing with too many doctors over the years.

Sara

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

I'm sorry to hear you're having difficulty getting a diagnosis. I'd like to note, however, that an inconclusive test is *NOT* the same as a negative test. It does NOT mean that you don't have it. It means that the test can't tell if you do or if you don't.

I skipped the biopsy, and am in the US, so I can't tell you if it's worth it or how long it will take. I can suggest that you try a gluten free diet as soon as you have the biopsy. You might find it worthwhile to have had the biopsy (for family/legal purposes) or you might not (for legal/insurance purposes) in the future, but you can always try the diet on your own. The response to the gluten free diet IS a valid diagnostic test, and one of the most powerful ones.

Terch Apprentice
Terch
Posted
Hi Terch,

My doctor referred me to a GI specialist, and i have already had the colonocopy, the Upper GI, and blood work, which I found out today were inconclusive.

As for my symptoms, stomach pains all the time, bloating, gas, diarrhea, severe cramping after eating, depression, mood swings. The cramping is so bad, that i dont even bother eating anywhere other then home, where there is a bathroom close by. I have lost close to 15 pounds. I am now done to 89 pounds.

I dont know what the Cat Scan is about, but, i am getting desperate for answers. I just don't want the Doctor to come back and say its IBS.....

My biospy is schedule for October 25th.

Your symptoms are very similiar to mine and right now I am honestly too scared to get on the scale to see how much weight I have lost since my last Dr's visit. I also have extreme fatigue and the most irritating lower intestinal rumbling and pressure. It feels like someone's having a boxing match in there. I know it's gas but it still is annoying. I found the endoscopy very easy and since you have already gone through a lot I don't think this will be too difficult for you. I am sorry that you are feeling so poorly and I know that I also don't want to be told I have IBS---it's bull poop.....

I think that you are on the right track and that you have a good doctor that is investigating this for you. I hope that you find some answers soon. It may not make you feel much better, but you are not alone in how you are feeling, and I find I get a lot of hope when I come on here and know that there are ways of managing whenI feel overwhelmed. Oh by the way can I ask how old you are?

Good luck on the 25th and I will let you know what my GI says tomorrow. ICK it's Friday the 13th luckily I am not superstitious !!!!

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. trents
      - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess...
    2. Roses8721
      - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    3. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    4. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    5. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy

      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,473
    • Most Online (within 30 mins)
      7,748
    Kelly Hannon
    Newest Member
    Kelly Hannon
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      gluten-free Oatmeal

      By Roses8721 · Posted

      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  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--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • 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.