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

      Related issues

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

      Patiently Waiting to See Results

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

      Patiently Waiting to See Results

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

      Related issues

      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...
    5. Scott Adams
      0

      Gluten-Free Peanut Butter Cup Swirl Brownies

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,259
    • Most Online (within 30 mins)
      7,748
    Lindia
    Newest Member
    Lindia
    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
      Related issues

      By Mari · Posted

      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
      Patiently Waiting to See Results

      By Scott Adams · Posted

      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
      Patiently Waiting to See Results

      By catsrlife · Posted

      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
      Related issues

      By Jmartes71 · Posted

      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
      Related issues

      By Mari · Posted

      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.