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

Sent For 2Nd Test

LolaBean

Recommended Posts

LolaBean Newbie
LolaBean
Posted

Hi there.. New to this whole thing! I believe my symptoms to be classic Celiac so asked for blood test back in December from my old doctor. The TTg Iga level was 6 which would be a weak positive . Everything else was normal apparently but I didn't ask for the results yet. The doctor was a fill in that gave me the results and all she said was that it was high but not Celiac and that was that because I didn't know better at the time. I

I've recently changed doctors because of distance and impending retirement and my new doctor looked over my results and was concerned especially with worsening symptoms. So I've had another celiac screen done and other tests including breath test etc. My doctor told me she needs to make sure there is nothing else causing the elevated TTg Iga. Is this normal? Can the levels get worse? Any advise or feed back would be much appreciated.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Welcome Lola!

 

First...higher levels of antibodies found in the blood are not a good indication of severity of symptoms or stages of celiac disease...so no, the levels can't get worse, but your health can and levels may increase with time.

 

Second...you had a positive celiac antibody test along with symptoms -- that certainly deserves more investigation.

 

Do you know what tests were run?  Make sure you get written or electronic copies of the results for all tests.  This is a good practice with all medical concerns...not just celiac testing.

 

Hang in there -- a doctor that ordered a breath test seems to be looking at other possible causes which is a good thing.

 

Let us know if you have more questions :)

LolaBean Newbie
LolaBean
Posted
  • Author

Thanks so much for the reply Lisa:)

My new doctor is very young and seems to be very up to date on celiac diagnosis which is great! I believe I've had symptoms since I was a child.. Short stature.. Always vomiting.. Skin issues.. Etc! I also remember horrible abdominal pains into my teens so it's nice to have a doctor that wants to investigate. I have a weird symptom that I can't seem to find much info about.. I'm very dizzy not all the time but in the morning especially and after I eat. I figured it was just low blood sugar and I just needed food but that seems to make it worse! Wondering if anyone else has heard or this. I've had all associated blood work done to check for things that might cause this to a vail. Thyroid.. CBC etc.

I will get my results ASAP.. My doctor mentioned that she wants to make sure it's not a false positive and that some people don't make enough antibodies or it might be in the early stages. She is also happy to refer me to a GI but also wants an ultra sound done before moving forward. Does this all sound normal?

I should be getting my screening results this week so I'll post them to get some opinions as we'll.

Thanks again

cmc811 Apprentice
cmc811
Posted

Sounds like you have a great doctor that wants to finally get you feeling better! That all sounds pretty normal to me. I had quite a few tests done as well to rule out potential causes and yes, the dizziness is one of my symptoms. I don't know that it's my worst symptom but it is the one that in interfering the most with my work, which is becoming problematic. I've only been diagnosed for 2 weeks so I'm hoping as more time goes by that will start to fade away.

 

Glad you're be listened to! Sounds like a good doctor so don't be afraid to ask questions. If you don't understand the ultrasound, ask what they're looking for.

GottaSki Mentor
GottaSki
Posted

Thanks so much for the reply Lisa:)

My new doctor is very young and seems to be very up to date on celiac diagnosis which is great! I believe I've had symptoms since I was a child.. Short stature.. Always vomiting.. Skin issues.. Etc! I also remember horrible abdominal pains into my teens so it's nice to have a doctor that wants to investigate. I have a weird symptom that I can't seem to find much info about.. I'm very dizzy not all the time but in the morning especially and after I eat. I figured it was just low blood sugar and I just needed food but that seems to make it worse! Wondering if anyone else has heard or this. I've had all associated blood work done to check for things that might cause this to a vail. Thyroid.. CBC etc.

I will get my results ASAP.. My doctor mentioned that she wants to make sure it's not a false positive and that some people don't make enough antibodies or it might be in the early stages. She is also happy to refer me to a GI but also wants an ultra sound done before moving forward. Does this all sound normal?

I should be getting my screening results this week so I'll post them to get some opinions as we'll.

Thanks again

 

What sounds normal is all the symptoms of celiac being dismissed.  Just teasing...kind of.

 

Seriously, your doctor sounds wonderful and more tests is a pain...but a doctor willing to order them is doing their job and it is wonderful to see.

 

While false negatives are frequent with celiac - false positives are very rare.

 

We have a saying that we use often -- I truly did lmao (in my head) when my celiac doc moved to UCLA and I met his replacement at a Gluten Free Fair put on by UCSD and she said in our very first conversation --

 

positive is positive

 

I don't know the numbers of false pregnancy tests....but they may beat false celiac antibody tests.

 

Hang in there :)

HavaneseMom Explorer
HavaneseMom
Posted

Hi LolaBean,

I'm glad to hear your doctor is looking in to your symptoms further. My doctor had ordered a ultrasound of my gallbladder and pancreas at one point due to my symptoms, but nothing showed up and after a quite a bit of time, I finally went to a GI doctor and found out it was Celiac. I waited what seemed like forever to get a referral to a GI doctor, and come to find out, my insurance doesn't actually require a referral for specialist! Try to see a GI doctor ASAP, if you feel like your doctor is dragging their feet on this. The longer you wait, it often takes longer to heal.

The dizziness you mentioned seems to be a pretty common celiac symptom. Mine started out as dizziness when getting out of bed in the morning and escalated to the point that I could even ride on the highway because the motion and speed would make my head spin like crazy. If you search this site or do a Internet search for celiac and dizziness, vertigo or gluten ataxia, I think you will be surprised at how common this symptom is for Celiacs.

Good luck and I hope you feel better soon.

LolaBean Newbie
LolaBean
Posted
  • Author

Any idea if H. Pylori can cause TTg Iga to come back positive?

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

A positive tTG-IgA should trigger doctors to run the complete antibody panel.  You need to find out what was run:

 

Total Serum IgA

tTG-IgA

tTG-IgG

EMA-IgA

DGP-IgA

DGP-IgG

 

AGA - both IgA and IgG are also tests for antibodies to Gliadin - the DGP also tests antibodies to a smaller part of the gliadin protein called a peptide.

 

Since your doctor is being thorough and doesn't have a problem ordering tests, he should run them all before assuming your positive tTG is not triggered by Celiac Disease.

 

I know someone else that knows the other causes of elevated tTG offhand - I'll try to get her attention to your thread.

 

Hang in there :)

LolaBean Newbie
LolaBean
Posted
  • Author

Thanks everyone! I was reading about how often people with celiac end up having H.pylori at the time of Celiac diagnosis or develop it! All very interesting.. I was tested for it at the same time as my second celiac screen and got a call back to follow up with my doctor re test results.. So they found something.. Not a big surprise! I'll be sure to get a copy of all my results to share and compare. Thanks again

nvsmom Community Regular
nvsmom
Posted

My new doctor is very young and seems to be very up to date on celiac diagnosis which is great! I believe I've had symptoms since I was a child.. Short stature.. Always vomiting.. Skin issues.. Etc! I also remember horrible abdominal pains into my teens so it's nice to have a doctor that wants to investigate. I have a weird symptom that I can't seem to find much info about.. I'm very dizzy not all the time but in the morning especially and after I eat. I figured it was just low blood sugar and I just needed food but that seems to make it worse! Wondering if anyone else has heard or this. I've had all associated blood work done to check for things that might cause this to a vail. Thyroid.. CBC etc.

I will get my results ASAP.. My doctor mentioned that she wants to make sure it's not a false positive and that some people don't make enough antibodies or it might be in the early stages. She is also happy to refer me to a GI but also wants an ultra sound done before moving forward. Does this all sound normal?

 

 

Welcome to the board, LolaBean.

 

A weakly positive tTG IgA can be attributed to other causes in a minority of cases. According to the Open Original Shared Link (page 12), the specifity og the ttG IgA is 91-99%, so that means that 1-9% of all positive tests are caused by something other than celiac disease.  Open Original Shared Link the specificity at about 95%.  It means that chances are slim that your positive is not caused by celiac disease - especially when accompanied by so many symptoms.

 

The other, more rare, causes of a positive tTG IgA are diabetes, thyroiditis, crohn's, colitis, chronic liver disease, and severe infections.  Most of those are linked to celiac disease (autoimmune diseases) so it's a good idea to suspect celiac disease with a positive tTG IgA even if you don't have symptoms... which you do.

 

That all being said, celiac disease, especially if it has been undiagnosed for many years, can cause other problems from years of living with inflammation. It's a good idea to re-address all of your symptoms after you have been gluten-free for 6 months or so.

 

If you are worried about blood sugar going low, you might want to get that checked. Blood sugar that dips too low is often caused when the body is releasing too much insulin, which often leads to diabetes.... I've learned this the hard way recently. LOL I would often get light headed, shake, and feel faint if I wasn't eating every couple of hours, and that's NOT normal even if I (you) try to brush it off as nothing. I am only 40, with a BMI that barely touches the overweight range, and I have early (pre)diabetes. A fating blood glucose, and oral glucose tolerance test can give you info about that.

 

Light headedness can also be caused by poor adrenal function (Addison's or a less major adrenal insufficiency). I have a problem with postural hypotension, meaning my blood pressure drops when I stand up or get moving. It could be something to look at too.

 

Also, hypothyroidism (thyroiditis) will often slow your metabolism enough that you have a slower pulse and could affect blood pressure. Celiacs often have low bp too. Hypothyroidism can also cause stomach issues, skin problems, fatigue and pain. Anyway, thyroid testing should include the TSH (should be near a 1 regardless of lab range), free T3 and free T4 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab.

 

Your doctor mentioned checking antibody levels... That's smart. That would be the total serum IgA that Lisa mentioned. About 5% of celiacs are deficient in IgA, higher than the regular population, and it makes it almost impossible to get accurate celiac testing using IgA based testing. I've only seen one person who was deficient in IgA have a positive tTG IgA blood test, and it was a weak positive.  Just remember that a positive is usually a positive. Chances are you have celiac disease.  :(  Just don't go gluten-free until you are done testing!  

 

Good luck. I hope you get more answers.

LolaBean Newbie
LolaBean
Posted
  • Author

Thanks nvsmom.. I'll be getting my results from my second screen tomorrow along with my results for H.pylori and few other things. I'll grab my results from Dec as comparison aswell. Looking forward to everyone's feed back once I post my screen results.

LolaBean Newbie
LolaBean
Posted
  • Author

Ok so screen came back negative..

Ttg Iga 12.6 (0.0-20.0)

Immunoglobulin A H 6.07 (0.60-4.20)

This 1 is high.

Doctor is sending me for more blood work because she doesn't know why I'm having an immune response however she mentioned this could be just the way I am. Any thoughts?

nvsmom Community Regular
nvsmom
Posted

I do not know much about elevated IgA. I know it is related to infection (in the mucosal linings), rheumatoid arthritis, liver disease, and SLE; it can also be elevated for no obvious reason. That's good that she is running more tests.

She only ran one celiac disease test, and one is not usually enough. False negatives are not rare. There is a 5-25% chance of a false negative with the tTG IgA test as seen on page 12 of this report: Open Original Shared Link. If possible, get the rest of the celac panel run, or even the biopsy. If she won't do more tests you have a couple of options: find a new doctor or assume it is non- celiac gluten intolerance or celiac disease and go gluten-free anyways.

Best wishes.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,668
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.