Frustrated With Results

[PaulaG]

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

[Michi8]

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. 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!

Michelle

[CarlaB]

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]

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]

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]

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]

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

[tarnalberry]

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]

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 !!!!