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. Clear2me
      - Clear2me replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Gluten free nuts

      Thank you for all the excellent information. I moved from Wyoming to California. May be its where I am located but So far none of the Costco Kirkland brand I have looked at is labeled gluten free. Same with the Sam's Members Mark. The Kirkland nuts you mention all say they are processed in a plant that processes wheat. I am going to keep checking. Thank...
    2. RMJ
      - RMJ replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Going for upper endoscopy today

      I’m glad you have a clear answer. Some endoscopes have enough magnification for the doctor to see the damage during the procedure.
    3. Scott Adams
      - Scott Adams commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      13

      Top Brands of Gluten-Free Canned Chili

      While it seems unlikely to contain intentional gluten ingredients--and based on the ingredients you provided, this canned Wendy's chili appears to be gluten-free, but with a very important caveat: it cannot be considered certified or guaranteed gluten-free due to the potential for cross-contamination and the ambiguous nature of "natural flavors."
    4. Scott Adams
      - Scott Adams replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Going for upper endoscopy today

      Welcome to the club!😉 This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):
    5. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Guinness, can you drink it?

      I could not find the thread, but I recall at least one user who was drinking regular gluten beer daily but getting celiac blood tests done often (I think it was monthly) and doing a biopsy each year and all celiac disease tests were always negative. Everyone is different, but in general regular beer would be considered low gluten (not gluten-free!). I have...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,272
    • Most Online (within 30 mins)
      7,748
    SLowe
    Newest Member
    SLowe
    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

    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thank you for all the excellent information. I moved from Wyoming to California. May be its where I am located but So far none of the Costco Kirkland brand I have looked at is labeled gluten free. Same with the Sam's Members Mark. The Kirkland nuts you mention all say they are processed in a plant that processes wheat.  I am going to keep checking. Thank you. The Azure Market looks promising 😁 Take care S
    • RMJ
      Going for upper endoscopy today

      By RMJ · Posted

      I’m glad you have a clear answer.  Some endoscopes have enough magnification for the doctor to see the damage during the procedure.
    • Scott Adams
      Going for upper endoscopy today

      By Scott Adams · Posted

      Welcome to the club!😉 This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      I could not find the thread, but I recall at least one user who was drinking regular gluten beer daily but getting celiac blood tests done often (I think it was monthly) and doing a biopsy each year and all celiac disease tests were always negative. Everyone is different, but in general regular beer would be considered low gluten (not gluten-free!). I have no issues with Daura Damm, but those who are super sensitive might.
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      Azure Standard (https://www.azurestandard.com/) is one of my gluten-free vendors. I've purchased nuts, "grains", flours, and many other products there. If you are not familiar with Azure, you have to set up an account (no cost) and get your purchases either via shipping (expensive) or "drop" (free if you buy a reasonable minimum). Search their website for a drop location in your area. Each drop location has a local volunteer(?) coordinator who coordinates with the local customers. I go to a drop 4-5 miles from my home that delivers every 2 weeks. We seem to range from 8-18 customers at a given delivery. The downside of the drop is that you have to be there when they say. They give you a few days notice of the precise time, though, and they are punctual. Their pricing relative to other vendors for various products ranges from best price to overpriced, so you have to shop and compare. Quality is mostly good but once in a while you get a dud - however they've been very responsive to giving me a credit on the few occasions when I've complained. In my opinion, they are not as transparent about gluten as they could be. Some products are labeled "gluten free" and so far I trust that. Many products are labeled "Azure Market products are re-packaged by Azure for your convenience in a facility that meets Food Safety Modernization Act (FSMA) standards, including an approved allergen control program." I've corresponded with them over this and they all but say this means gluten free. I've come to trust this, with a little nervousness, but I wish they would be more explicit. They also sell a lot of gluten-containing products. Frankly, I think they are overlooking a business opportunity to become a trusted source for the gluten-free community by not being more clear about gluten. Among Azure products I've purchased are "Walnuts, Baker's Pieces, Raw", "Cashews, Raw, Large White Pieces, Organic" and "Missouri Northern Pecan Grower Pecans Fancy Native, Raw, Halves". The walnuts and cashews were very good and the pecans were fabulous. For almonds, I've been buying Blue Diamond unsalted when they go on sale (mostly from Safeway). The salted ones are probably fine too but the flavored ones I avoid now that I am gluten-free. I also buy products including nuts from CostCo (cashews, shelled pistachios). Their nuts usually contain a "made in a facility that processes wheat" statement, which is scary. I've contacted customer service about various Kirkland products and they will usually give you a response <<for a specific lot>> whether it really was made in a wheat facility (sometimes yes sometimes no). For the "Kirkland Signature Fancy Whole Cashews, Unsalted, 40 oz" and "Kirkland Signature Shelled Pistachios, Roasted & Salted, 1.5 lbs", I got a "safe" answer and I ate them. I got an "unsafe" answer once for "Kirkland Signature Fancy Whole Cashews with Sea Salt, 2.5 lbs" and "Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs" and I don't look at these anymore. Again, these answers were given for specific lots only. They will accept an unopened return for cash if you find out you don't want it. Costco also sells "Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs" that are labeled gluten free. My celiac kid eats them all the time. I pretty much only eat food that I prepare myself from scratch. My celiac symptoms are not that overt, so I can't say for certain I could identify a glutening. However, my antibody levels dropped 25 fold (into normal range) since my dx earlier this year. Hope this helps.
×
×
  • 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.