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Positive blood test, but told "probably not celiac"

sstar

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sstar Rookie
sstar
Posted

Hi everyone. I saw a few different (wrong) specialists before finally linking my symptoms to that of celiac disease. When I saw the connections I made an appointment with anyone my clinic had as soon as possible (so I could stop eating gluten!) and it was a nurse practitioner. She seemed boggled but agreed to do the testing, she ran the celiac panel, a CBC and a CMP. I didn't speak to her directly but to another nurse at the practice who just read her notes that said "positive on the celiac test, but the other blood tests looked normal so probably not celiac. refer to GI."

My CBC was normal, but on the CMP my protein and creatinine were low. Upon consultation with Dr. Google, I saw that could be a marker for malabsorption (which would make sense if I have celiac?)

I am too poor to follow up with a GI right now, and am afraid to re-gluten myself for the scope test (like I'd have the cash for that anyhow hah) just for the possibility that they miss a bad spot and end up with a negative result. Also- I thought that false negatives were possible on the blood test, not false positives??

The photo upload won't work for me but this is the level of bloating I get, happens within a matter of minutes and slowly goes down over a few hours. Hurts like hell!!

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tessa25 Rising Star
tessa25
Posted

Perhaps get a copy of the test results and post the celiac panel results here along with the ranges.

 

Jmg Mentor
Jmg
Posted
1 hour ago, sstar said:

"positive on the celiac test, but the other blood tests looked normal so probably not celiac. refer to GI."

That seems a little odd. A positive on the celiac test shouldn't need corroboration from other tests?

 

pavlovcat Apprentice
pavlovcat
Posted

If i'm remember correctly, there's about a 2% false positive rate for the blood tests.  The rate is higher among those with another autoimmune disorder.  

Ennis-TX Grand Master
Ennis-TX
Posted

Well I would say positive on the blood test would show you have it but we do call the endoscope and biopsy the golden standard and very good show for positive damage from the disease. The reference to GI is for the endoscope you need to keep eating gluten til you get that over with. But looks like you have the disease if you got the blood test positive.

frieze Community Regular
frieze
Posted
On 5/30/2017 at 7:38 PM, Jmg said:

That seems a little odd. A positive on the celiac test shouldn't need corroboration from other tests?

 

she is looking for the damage that would be expected...anemia etc.

Kkat Newbie
Kkat
Posted
On 5/30/2017 at 2:39 PM, sstar said:

Hi everyone. I saw a few different (wrong) specialists before finally linking my symptoms to that of celiac disease. When I saw the connections I made an appointment with anyone my clinic had as soon as possible (so I could stop eating gluten!) and it was a nurse practitioner. She seemed boggled but agreed to do the testing, she ran the celiac panel, a CBC and a CMP. I didn't speak to her directly but to another nurse at the practice who just read her notes that said "positive on the celiac test, but the other blood tests looked normal so probably not celiac. refer to GI."

My CBC was normal, but on the CMP my protein and creatinine were low. Upon consultation with Dr. Google, I saw that could be a marker for malabsorption (which would make sense if I have celiac?)

I am too poor to follow up with a GI right now, and am afraid to re-gluten myself for the scope test (like I'd have the cash for that anyhow hah) just for the possibility that they miss a bad spot and end up with a negative result. Also- I thought that false negatives were possible on the blood test, not false positives??

The photo upload won't work for me but this is the level of bloating I get, happens within a matter of minutes and slowly goes down over a few hours. Hurts like hell!!

My stomach does exactly the same thing!! Makes me look preg until it goes down. I came on here looking at symptoms related to my nails being wavy - I know I have some malabsorption but wanted to figure out why - I'm planning on requesting thebsame panels you did and see what comes of it - some of them I have had before and had the same results you saw. But I never actually thought to request the celiac panel. I almost feel silly asking for it with the craze over gluten for everyone and their dog, but I think at very least I have a sensitivity to it. So we'll see - but your info and that picture were a big help. 

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sstar Rookie
sstar
Posted
  • Author
5 hours ago, Kkat said:

My stomach does exactly the same thing!! Makes me look preg until it goes down. I came on here looking at symptoms related to my nails being wavy - I know I have some malabsorption but wanted to figure out why - I'm planning on requesting thebsame panels you did and see what comes of it - some of them I have had before and had the same results you saw. But I never actually thought to request the celiac panel. I almost feel silly asking for it with the craze over gluten for everyone and their dog, but I think at very least I have a sensitivity to it. So we'll see - but your info and that picture were a big help. 

I'm so glad I could help! It took me forever to link it to celiac. I searched and searched the internet for why this would be happening to me after being sent around to a few specialists. They thought maybe it was cysts or fibroids or even ovarian cancer, etc. Finally on one forum ONE comment said "my aunt gets that kind of belly sometimes but she has celiac disease" and that's how I got to this point. Doctors don't seem to know a whole lot about celiac from what I've seen, I'd just go in and basically demand the test. Make sure you load up on the gluten before getting tested! 

Just today I found a fitness instagram of a girl who had bad "bloat" problems and as I skimmed through she had a picture of a big belly and said a doctor had previously diagnosed her with celiac disease! Then she said 5 years later another doctor told her she didn't have it, so she has gone back to eating gluten thinking she was misdiagnosed. Docs need to get hip! Good luck on your testing!

sstar Rookie
sstar
Posted
  • Author

OK! Finally got a response from her but it took the nurse 3 entire days to call me back about my test results, and of course I was eating dinner and couldn't pick up.. she left me a voicemail that said she doesn't think I'm celiac because my blood tests didn't show anemia. Told me to follow up with the GI and keep eating gluten :\

She is out of the office the entire next week but is in contact "by message" but I can't even leave a message at the office because they are closed now.. ugh! now I need to wait until Monday to even leave a message for them to ask her. 

RMJ Mentor
RMJ
Posted

One does not need to have anemia to have celiac!  It sounds like you've gone gluten free?  Perhaps they would be willing to retest you in six months to see if the antibody level goes down on a gluten free diet.  Be sure to use the same lab for the retest so the comparison is valid.

ysali Rookie
ysali
Posted

This definitely seems odd to me. My scopes/biopsies all came back clear (two endoscopies, one capsule endoscope, and colonoscopy) but my bloodwork came back positive for celiac so my doctor put me on a gluten free diet immediately. Everything else in my labs was fine too, no anemia, none of that, just some elevated inflammation markers. 

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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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