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

Surprised By Blood Tests

Withjoy

Recommended Posts

Withjoy Newbie
Withjoy
Posted

Hello Everyone,

 

I'm still in a bit of shock from hearing from my GI on Monday that she thinks I probably have Celiac.  (My blood tests are below.)  She said that it wasn't for sure and scheduled me for an endoscopic biopsy next Wednesday.  I've spent yesterday and this morning reading as much as I can about this disease, as it wasn't even on my radar at all!  I don't have any stomach or intestinal symptoms that I can tell, although I have several other health issues (massive thyroid issues, extremely low Vitamin D, bladder problems, and quite a bit of problems with mental focus). 

 

Here is my question--my doctor didn't want to stay definitvely if I have celiac or not.  She had a "let's wait for the endoscopy results" attitude, although she did refer me to a nutritionist and made sure I made an appointment for next week.  So, given the results below, is it possible that I don't have celiac?  Is the doctor just being doctor-ish by not saying I have it for sure, or is there really a chance that the biopsy could come back negative?  I've been trying to figure this out by Googling, but I'm getting more confused.  Of course, I can just wait for the results, but it's driving me a little crazy...   Since the "IGA,Serum" came back in the normal range, does that mean anything?

 

Thanks for any and all input!!!

Dee

 

P.S. - Also, if there are any questions that I should ask the doctor or the nutritionist I'd love to know.  I feel like I just don't even know enough to know what to ask yet...

 

P.P.S. - here are the results:

ANA SCREEN,IFA                              Positive
ANTI-NUCLEAR AB TITER            1:80
ANA PATTERN                                   Homogeneous
Reference Range:
       <1:40         Negative
        1:40-1:80     Low Antibody Level
        >1:80         Elevated Antibody Level

(tTG) AB, IGA                                        66
   Reference Range:
      <4 No Antibody Detected
      > OR = 4 Antibody Detected

ENDOMYSIAL AB IGA               POSITIVE
ENDOMYSIAL AB TITER          1:40
     Reference Range:    <1:5    
IGA, SERUM                                   260
     Reference Range:  81-463    mg/dL

 

 

 

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Well, I can't address the blood test results because I'm not an expert and I'm still have difficulty interpreting mine!  (Diagnosed in April.)

 

I went for a routine colonoscopy (over 50!!!) and the gastro thought I had celiac based on my Hashimoto's Thyroiditis that had been swinging back and forth (hyper and hypo) and iron deficiency anemia that I had for years.  Vitamin D levels were just barely in the normal range, even though I had been taking 2,000 i.u. supplement/day.  I had a bit of anxiety and mental fog issues too that I attributed to my whacked out thyroid and perimenopause symptoms.  Blood tests came back as mild celiac and six weeks later I got scoped.  Biopsies were moderate to severe damage to my villi.  

 

Leading up to the initial visit, I did not have any intestinal issues.  I was really shocked because my husband has been gluten free for 12 years (not formally diagnosed and will not do the challenge as he's happy and healthy!)  and you'd think I'd be more aware!

 

So, my advice is to eat wheat up until you prep for your endoscopy.  If you are celiac, don't panic.  It's a good thing to know.  You'll absorb your thyroid meds better, vitamins, etc.  The diet is pretty easy, but then I cooked gluten-free for my hubby for years so it was an easy conversion for me.  There's a newbie thread that's extremely helpful and will guide you cause you're going to need some new things in the kitchen (toaster, wooden spoons, etc.)

 

Good luck!

nvsmom Community Regular
nvsmom
Posted

With a positive tTG IgA and a positive EMA IgA (same positive tests that I had) there is very little doubt that you have celiac disease. The EMA IgA is 98-100% specfic to celiac disease (meaning that out of 100 positive tests, 98-100 are due to celiac) and only occurs after a significant amount of damage has been done to your intestinal villi (ie. it is negative in early celiac cases). The tTG IgA is specific to celiac in 91-99% of the time... With two positive tests, there is little doubt.

 

Total serum Iga is a control test to make sure you make adequate amounts of IgA for the celiac tests that use IgA (EMA IgA, tTG IgA, DGP IgA) to be accurate. 6% of celiacs are deficient in IgA so their tests using IgA would not catch them. A normal serum IgA is a good and normal thing.

 

Here is a link to where I got my numbers - go to p.12:  Open Original Shared Link

 

You might want to look on page 7 where it discusses non-classical symptoms of celiac... they really are the more common symptoms but most people don't associate symptoms like brain fog with an innocent peanut butter and jelly sandwich. KWIM?

 

Thyroid problems are extremely common in celiacs. About 6% of hashimoto's patients have celiac disease (compared with less than 1% of the regular population) and over 10% of celiacs have thyroid problems. Occassionally, thyroid problems will improve on the gluten-free diet.

 

Other tests to request are potassium, ferritin, iron, calcium, D and B's which are often low in celiacs until some time after they have healed (months to years later).

 

I am not sure if positive ANA tests are associated with celiac disease. I have "heard" it is but I have not read scientific articles stating this so I am unsure. The homogenous pattern is most often seen in Lupus but I have read that it is also the pattern that tends to show up the most in healthy people too (approx. 25% I believe) so I would not worry unless you believe you are having rheumatic problems. The speckled ANA is commonly seen in those with thyroid diseases.

 

As cyclinglady said, keep eating gluten if you think an endoscopic biopsy is something you would like to pursue (I skipped it myself but I am in the minority there). i hope you feel well soon.

pricklypear1971 Community Regular
pricklypear1971
Posted

I assume you are at your scope right now...

 

Yes, and no.

 

You have two positives which are pretty strong indicators. You can get a positive TTG from having another autoimmune disease like Hashimotos. However, you have two positives...which really favors Celiac on top of Hashis (if that's your hypo problem).

 

A regular IGA just means you have sufficient IGA to register an accurate test result on other IGA based tests.

Gemini Experienced
Gemini
Posted
You might want to look on page 7 where it discusses non-classical symptoms of celiac... they really are the more common symptoms but most people don't associate symptoms like brain fog with an innocent peanut butter and jelly sandwich. KWIM?

 

Thyroid problems are extremely common in celiacs. About 6% of hashimoto's patients have celiac disease (compared with less than 1% of the regular population) and over 10% of celiacs have thyroid problems. Occassionally, thyroid problems will improve on the gluten-free diet.

 

Other tests to request are potassium, ferritin, iron, calcium, D and B's which are often low in celiacs until some time after they have healed (months to years later).

 

I am not sure if positive ANA tests are associated with celiac disease. I have "heard" it is but I have not read scientific articles stating this so I am unsure. The homogenous pattern is most often seen in Lupus but I have read that it is also the pattern that tends to show up the most in healthy people too (approx. 25% I believe) so I would not worry unless you believe you are having rheumatic problems. The speckled ANA is commonly seen in those with thyroid diseases.

 

As cyclinglady said, keep eating gluten if you think an endoscopic biopsy is something you would like to pursue (I skipped it myself but I am in the minority there). i hope you feel well soon.

  The PBJ sandwich remark was the best!  Truer words were never spoken!  :lol:

 

Positive ANA can be from any number of AI diseases.  I have a very high ANA that is coming down quite nicely the longer I am gluten free.  It was in the ridiculous range.  I do not have any symptoms of anything these days but have been gluten-free for a long time....8 years.  It really is a very generic test that basically means you have a lot of inflammation in your body but it can be remedied by a strict gluten-free diet and time.

 

You have Celiac....no doubt about that.  The endoscopy will just be done to assess damage, not diagnose.  I ditched the endo because, like NVSmom, my blood work was all positives and I was too sick to have one at the time.  Welcome to our community and don't worry.....we'll help you with the learning curve!  :)

Withjoy Newbie
Withjoy
Posted
  • Author

Thank you so much for your replies!  My endo is next Wednesday (I wish it was today!), so I've got one more week of eating gluten before I stop.  Although, honestly--eating Cheerios this morning felt a little like eating poison now that I know what is going on.  Although I know it will be hard, I'm SO SO grateful to have an answer!

 

I'm also so grateful for this forum!  You all are awesome, and I'm planning on spending a lot of time reading posts over the next few weeks.

1desperateladysaved Proficient
1desperateladysaved
Posted

Welcome, Withjoy

 

I hope you will get your endoscopy done and be able to go gluten free soon!  You can begin to study up and prepare your kitchen for your gluten free future.

 

Diana

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

Celiac.com Sponsor (A8-M):


powerofpositivethinking Community Regular
powerofpositivethinking
Posted

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

lots of great information there!

 

welcome to the forum  :)

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. Hmart
      - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end...
    2. trents
      - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So...
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

      I have a lot to learn! Thank you
    4. DebJ14
      - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies. I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved. Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. ...
    5. Hmart
      - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative. I have gone gluten free. In week 1 I had a flare-up that was similar to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,924
    • Most Online (within 30 mins)
      7,748
    Mckshane
    Newest Member
    Mckshane
    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

    • Hmart
      Is this celiac?

      By Hmart · Posted

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Is this celiac?

      By trents · Posted

      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      I have a lot to learn!  Thank you
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      Is this celiac?

      By Hmart · Posted

      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • 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.