Is There Any Way I Got A False Positive?

[adelajoy]

Hey all.

 

I guess I got diagnosed with Celiac disease on Friday. I've been unwell for several months, and I went in for some blood tests, but my doctor didn't tell me what all she was testing me for, and then she called on Friday to say that everything came back normal except that it "clearly shows have Celiac disease". She didn't give me anymore information than that, like any test numbers, or even what tests were performed. She did tell me to start a gluten-free diet immediatly and she referred me to a dietitian.

 

Now, I talked to a Celiac friend of mine who said his friend got a positive test, but the endoscopy or biopsy or something came back negative. But I read that I need to keep eating gluten for that test, and my doctor told me to cut it out, and didn't mention it.

 

So basically, I'm thinking my doctor was 100% sure it is Celiac, and that's just really scary at this point to me. Is there any chance it's not, or is there any way for me to guarentee it at this point? Or do I just accept it as 100% and move on?

[kareng]

read some info from Celiac experts:

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[guest134]

I had some false positives for Celiac after a bad case of Salmonella, there are things that cause elevations aside from the disease. Your doctor should have the decency to sit down with you and discuss results while showing you the ranges. Perhaps you TTG was 10 times the normal range with a very high endomysial titre and your doctor is right or there can be small false positives. Go to your doctor and get the results and post them on here, we can help you interpret the results. I am also curious as to how high the positives were for your doctor to not consider other issues/biopsy.

You said you have felt unwell, can you list your symptoms? Personally if I was feeling very sick I would be happy that the solution is a simple diet change, Celiac is certainly not the end of the world.

[adelajoy]

That's what I thought. I'll see if I can make an appointment just to understand my results.

 

I've been getting stomach pains for several months, ranging from stabbing to shooting, but only late at night or in the middle of the night. I went to two different doctors about those, who just shrugged them off and sent me home.

 

I've also had intermittant nausau, vomitting, diarhea and constipation, but I passed them off because milk products usually don't sit with me (As in, I assume I'm lactose inolerant, I've just never been tested for it).

 

The concern was this light-headedness, and dizziness. I've felt really weak, as if I couldn't stand up if I tried, or if I am standing, I sometimes collapse. The best way I could describe it was that I felt wobbly, and I sometimes felt really shaky. And my hands and feet fell asleep frequently, in positions that they shouldn't have. I figured that was all chalked up to low blood sugar or low blood pressure, but it all persisted even when I consumed enough sugar to offset it, and I got my blood pressure checked several times.

 

I've also felt like my brain is swimming through fog, which I just completely ignored, but I've since read that can be a symptom.

[guest134]

Going through your symptoms I would suggest being tested for H. Pylori. I don't have much more to add myself but hopefully others can come in with more help to your symptoms. Let us know your results and I will get back to you.

[IrishHeart]

Your symptoms sure sound a lot like celiac to me. I doubt your test is a false positive, hon and I would start to learn about celiac and how it is treated by the gluten free diet. You could have a secondary lactose intolerance, common in celiac and it often resolves after a few months after being gluten-free as the villi heal. 

 

Most doctors do the endoscopy with biopsy after a positive test. My first question for the doctor would be "why aren't you scoping and biopsying me?"

 

Is the biopsy necessary?

Not according to some experts, but I'd still be curious as to why this doctor isn't doing a baseline read on you and taking a good look at your GI tract..Other things can co-exist  with celiac.

 

A good book is Real Life with Celiac Disease by Melinda Dennis, MS, RD, LDN Daniel Leffler, MD. MS and rather than repeat a bunch of info, may I direct you to this thread for the newly diagnosed:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[BELMO33]

Hey all.

 

I guess I got diagnosed with Celiac disease on Friday. I've been unwell for several months, and I went in for some blood tests, but my doctor didn't tell me what all she was testing me for, and then she called on Friday to say that everything came back normal except that it "clearly shows have Celiac disease". She didn't give me anymore information than that, like any test numbers, or even what tests were performed. She did tell me to start a gluten-free diet immediatly and she referred me to a dietitian.

 

Now, I talked to a Celiac friend of mine who said his friend got a positive test, but the endoscopy or biopsy or something came back negative. But I read that I need to keep eating gluten for that test, and my doctor told me to cut it out, and didn't mention it.

 

So basically, I'm thinking my doctor was 100% sure it is Celiac, and that's just really scary at this point to me. Is there any chance it's not, or is there any way for me to guarentee it at this point? Or do I just accept it as 100% and move on?

 

To answer the endoscopy quesiton, it can often be "negative" in people with positive blood results because a large majority of gastroentorologists do NOT take enough samples, there have been studies showing most are surprisingly unaware how many samples they really need to be taking.  In someone who may have only had celiac for 2 or 3 years its entirely possible a biopsy with only 3 or 4 samples all from a narrow region of the small bowel may come back negaitve.  Remember, sometimes celiac panel bloodwork can be negative for a few years after the disease technicallly onsets, its as likely or even more likely large sections of the small bowel can remain normal that long as well.  Based on what your doc said that everything was normal but it clearly shows celiac its entirely possible that if she ran the recommended celiac panel everything was on the "high end" of normal.  In general most healthy people test strongly negative on all celiac panel tests, that means IgA and IgG numbers well into the single numbers, sometimes even between 1 and 3 (20 or higher is positive at most labs) and TtG numbers around 0 or 1, alot of gastro doctors become concerned when they start seeing numbers creep over 10 on either Iga/IgG test that you're at least dealing with a gluten sensitivity. 

[adelajoy]

Your symptoms sure sound a lot like celiac to me. I doubt your test is a false positive, hon and I would start to learn about celiac and how it is treated by the gluten free diet. You could have a secondary lactose intolerance, common in celiac and it often resolves after a few months after being gluten-free as the villi heal. 

 

Most doctors do the endoscopy with biopsy after a positive test. My first question for the doctor would be "why aren't you scoping and biopsying me?"

 

Is the biopsy necessary?

Not according to some experts, but I'd still be curious as to why this doctor isn't doing a baseline read on you and taking a good look at your GI tract..Other things can co-exist  with celiac.

 

A good book is Real Life with Celiac Disease by Melinda Dennis, MS, RD, LDN Daniel Leffler, MD. MS and rather than repeat a bunch of info, may I direct you to this thread for the newly diagnosed:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Thank you!

 

I appreciate the pointers. I feel so overwhelmed. There's so much I need to know, and I need to know it all now.

 

I'll definitely talk to my doctor as soon as I can. I've never had a problem with her, so I'm sure she just thought it unnecessary  but I would like to have a conversation about all this. 

[adelajoy]

To answer the endoscopy quesiton, it can often be "negative" in people with positive blood results because a large majority of gastroentorologists do NOT take enough samples, there have been studies showing most are surprisingly unaware how many samples they really need to be taking.  In someone who may have only had celiac for 2 or 3 years its entirely possible a biopsy with only 3 or 4 samples all from a narrow region of the small bowel may come back negaitve.  Remember, sometimes celiac panel bloodwork can be negative for a few years after the disease technicallly onsets, its as likely or even more likely large sections of the small bowel can remain normal that long as well.  Based on what your doc said that everything was normal but it clearly shows celiac its entirely possible that if she ran the recommended celiac panel everything was on the "high end" of normal.  In general most healthy people test strongly negative on all celiac panel tests, that means IgA and IgG numbers well into the single numbers, sometimes even between 1 and 3 (20 or higher is positive at most labs) and TtG numbers around 0 or 1, alot of gastro doctors become concerned when they start seeing numbers creep over 10 on either Iga/IgG test that you're at least dealing with a gluten sensitivity. 

Okay, so what you're saying is that I might not need to bother with the endoscopy?

[shadowicewolf]

You don't necessarily have to, but you can if you do so wish.

[guest134]

Belmo can you share where you got this "doctors become concerned when tests go over 10"? Every test has different ranges and depending on the sensitivity some can go as high as 40, now testing 30 on a 40 being positive kit would not mean you would also be 30 on a 20 over is positive test. The numbers mean nothing within the negative ranges and healthy populations will vary with their results each time tested. 

Although the biopsy isn't always necessary it is a pretty good idea for many reasons. Of course, when one is not convinced of Celiac and has little or no symptoms a biopsy is beneficial. It is also helpful as a baseline in the diagnosis to track improvement and know what the damage was like upon diagnosis and noting healing or improvement on the follow up.

Let us know your blood results and be sure to tell your G.I you want at least 5-6 biopsies.



 

[GottaSki]

Welcome Adelajoy!

 

Wanted to add my opinion on the need for endoscopy when diagnosed with Celiac Disease.

 

When I finally had a celiac antibody test after decades of doctors misdiagnosing me and choosing the wrong tests for me -- I was extremely thankful that we finally had a reason for my increasing severe health over the years.  Fortunately I was sent to an expert in Celiac Disease at UCSD, whom took his time examining me, my history, my bloodwork - he promptly ordered 20 viles of complete antibody tests along with nutrients that had never been tested at that point.  Ever test he ordered was positive on the antibodies or deficient on the nutrients.  Most doctors do not understand all the tests required to accurately diagnose and monitor celiac disease as they were not taught this in medical school - only that Celiac Disease is a childhood disease that presents only in the underweight child with diahrea -- yes, this is changing - but it has only been the past five years -- it will take longer for the accurate word to spread throughout the medical communtity..

 

With regard to endoscopy -- here are the reasons I highly suggest at least the initial endo with many samples of the small intestine -- I'm on the wrong computer to provide a good link on the procedure, but will add in later:

 

Not everyone heals within the first months or even years of living as gluten free as possible - should you be one of these, I can tell you from experience that you will question the need to live strictly gluten-free if you don't have enough proof to quiet the doubts.  I had all positive blood work, was defiecient in every nutrient, positive genes and totally flattened villi and even I had moments during the first year that had I not had the data from the biopsies, I MAY have cheated -- that data is important.

 

As more time passed I had to have annual endoscopies as I my small intestine was not healing AT ALL and my symptoms became even more dibilitating.  Yes, I am one of the worst case scenarios - but at diagnosis I had no clue what Celiac Disease was or how many systems in the body it can damage.  My fourth annual endoscopy finally showed some minor improvement on the Marsh Scale for Celiac Disease.  Without that intitial endo there would have been nothing to compare the subsequent ones with.

 

I also have complete blood work run -- at first it was at three and six months, then annually thereafter -- this blood has confirmed that I am as gluten free as a person can be -- which understandably would be questioned given my worsening symptoms and lack of intestinal healing.

 

Sorry for the lengthy post -- but data is invaluable.  Get as much as you can before you remove gluten.

 

Again, welcome to the forum -- read as much as possible and ask lots of questions -- it really does help pull you up a VERY STEEP learning curve

[kareng]

Please read some simple info from a reliable source. There are always a few posts, especially from new posters, that are not based in fact. I know I said some stupid stuff when I was new.

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[kareng]

To answer the endoscopy quesiton, it can often be "negative" in people with positive blood results because a large majority of gastroentorologists do NOT take enough samples, there have been studies showing most are surprisingly unaware how many samples they really need to be taking.  In someone who may have only had celiac for 2 or 3 years its entirely possible a biopsy with only 3 or 4 samples all from a narrow region of the small bowel may come back negaitve.  Remember, sometimes celiac panel bloodwork can be negative for a few years after the disease technicallly onsets, its as likely or even more likely large sections of the small bowel can remain normal that long as well.  Based on what your doc said that everything was normal but it clearly shows celiac its entirely possible that if she ran the recommended celiac panel everything was on the "high end" of normal.  In general most healthy people test strongly negative on all celiac panel tests, that means IgA and IgG numbers well into the single numbers, sometimes even between 1 and 3 (20 or higher is positive at most labs) and TtG numbers around 0 or 1, alot of gastro doctors become concerned when they start seeing numbers creep over 10 on either Iga/IgG test that you're at least dealing with a gluten sensitivity. 

I'm not sure where you are getting your facts. Could you please supply reliable sources? I don't understand how making antibodies makes you gluten sensitive but not Celiac? I don't believe there are any reliable tests currently in use to determine non- Celiac GI. And, like a previous poster said, different labs use different measurements. 10 may be next to nothing on a scale of normal 0-60.

[IrishHeart]

FWIW, My celiac-savvy GI doc insists on follow up care.

 

Blood tests, including a CMP, CBC, Thyroid panels, vitamin levels are run He also did a small bowel follow through with barium (he was ruling out lymphoma, Crohn's and other inflammatory bowel diseases as I was long unDxed) and had I wanted it, a referral to a dietician.

He does a repeat endo on his patients (he will do mine in a few months and I have no problem with that as my initial one --with my former GI--was botched) and if they still exhibit symptoms, he gets to the bottom of it.

 

Follow up care is essential. Just sending a patient a "you have celiac, so just go gluten free message" is about as useful as an ice maker in the Arctic circle.

[mommida]

Did you know that newly diagnosed Celiacs can sell their blood plasma?  The use as the control for some of the tests.  You can only be a donator early on in your diagnoses.

 

Some of those symptoms may be caused by vitamin and nutrient defiencies. 

[adelajoy]

Did you know that newly diagnosed Celiacs can sell their blood plasma?  The use as the control for some of the tests.  You can only be a donator early on in your diagnoses.

 

Some of those symptoms may be caused by vitamin and nutrient defiencies. 

Sad... I can't find anything similar in Canada.

[mommida]

You did find Access Clinical information?  There is some travel expense coverage.

 

As a side note, I can't find the easy tab button to edit spelling on my last post.  (Horrible sentence structure and spelling!)

[adelajoy]

You did find Access Clinical information? There is some travel expense coverage.

As a side note, I can't find the easy tab button to edit spelling on my last post. (Horrible sentence structure and spelling!)

Yeah, I found them. But their pre-screening form only has an option for a zip code, and then just asks for city, so there wasn't an easy way to say I'm Canadian. Which usually means its only open to Americans. And if there was a way for me to do it, it might not even be worth the bother.