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

Positive blood test, but told "probably not celiac"

sstar

Recommended Posts

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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. 

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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.