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 work

CMC74

Recommended Posts

CMC74 Rookie
CMC74
Posted

Hi, 

I am new here and I apologize if this has been answered before.  Over the past 4 years my doctor has tested me for the IGA antibiodies (I think that is it) during my annual physical and my blood work has come back positive 3 times out of 4.  I don't have any gastrointestinal symptoms but she has told me to stay off of gluten since I have headaches and some other minor issues.  When I recently looked at the patient portal my chart said "Celiac" on it. I know it can't be confirmed without a biopsy, but I am scared to death to do it and would rather just stay gluten free. 

I was just wondering if anyone else has had several positive blood results and ended up not having Celiac?  

Thank you!

 

 

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. The celiac blood tests are pretty specific to celiac. Doctors are starting to acknowledge that positive blood work is diagnostic. While ideally you should have had an endoscopy after you had positive blood your doctor may have feared that you would show a false negative on the endo. You could go back on gluten for a couple months and get an endo done but you do risk that false negative and with repeat positive IGA tests it is pretty certain you are celiac. Celiac has a lot of different symptoms and there are people with celiac that never have tummy issues that they consider abnormal.  Those minor issues could become more major if you ignoser the postive blood work you have had. Do read the Newbie 101 thread at the top of the coping section as it has a lot of good info on what you need to do to keep safe and healthy.

GFinDC Veteran
GFinDC
Posted

Hi cmc74,

I wrote post to you earlier but it seems to have disappeared.

You can ask your doctor to do the full celiac disease test panel, including the DGP IgA and DGP IgG now.  They are very specific tests for gliaden antibodies.  Often a doctor will do just the ttg IgA screening test, but there are more tests.

CMC74 Rookie
CMC74
Posted
  • Author

Thank you both.  The patient portal is down, but if I can access it I can see exactly what blood work has been done. I will also read the newbie section. 

squirmingitch Veteran
squirmingitch
Posted

How long have you been gluten free? How many years ago did your doc tell you to stay off gluten? I'm just wondering because it's not clear in your original post. Have you been gluten-free for 4 years? You say for 3 out of 4 years the IgA has come back positive. Which year was it negative?

For an endoscopy you have to eat gluten every day for 2 weeks.

CMC74 Rookie
CMC74
Posted
  • Author
2 hours ago, squirmingitch said:

How long have you been gluten free? How many years ago did your doc tell you to stay off gluten? I'm just wondering because it's not clear in your original post. Have you been gluten-free for 4 years? You say for 3 out of 4 years the IgA has come back positive. Which year was it negative?

For an endoscopy you have to eat gluten every day for 2 weeks.

Well, I have been on and off the gluten free diet over the past 4 years. I think I generally do 4-5 months then cave around the holidays and also in the summer when we travel overseas for a month I end up eating gluten then go back to gluten-free when I get home.  I  also lose weight on the gluten-free diet which I don't need to do and a reason why I start eating everything again.  After my yearly physicals when I get the reminder my blood work is still positive and I could get cancer if I continue to eat gluten I stop again. Since I don't react when I do eat gluten it makes it a bit harder.  The first year (4 years ago) my doctor did a test which was positive and she repeated it to make sure, the next year she checked again - still positive,  year after that it was negative then next time it was positive again.   

In the meantime, I had some other symptoms such as abnormal hearing loss, which led to blood work resulting in a positive ANA.  I followed up a few months later and had a positive (or maybe borderline) 6 result for Lupus.  Both should be positive at the same time I was told and mine were not. Either way, I go to the Rheumotologist on Dec. 16th for possible Lupus too.   I now plan to stay gluten free since there are too many indicators that I have Celiac.  I am 42 by the way and no family history that I know of. 

 

zenjess1980 Contributor
zenjess1980
Posted

I also have positive blood work, but ended up having negative biopsy. I literally had a doctor tell me "I don't quite understand your results. You'll probably be fine continuing to eat gluten."

... and so began a long journey. VERY long story short, I ended up getting duodenal non Hodgkin lymphoma (cancer) which is apparently related to untreated Celiac Disease! Imagine my shock, anger, disappointment, etc.!

From what I understand the blood work they do is very specific to diagnosing Celiac. I am not certain if you can get a false positive. Perhaps others can help you out and answer that for you.

In the end, I say better to be safe than sorry! *hugs* Best wishes!

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

Celiac.com Sponsor (A8-M):


CMC74 Rookie
CMC74
Posted
  • Author
10 minutes ago, zenjess1980 said:

I also have positive blood work, but ended up having negative biopsy. I literally had a doctor tell me "I don't quite understand your results. You'll probably be fine continuing to eat gluten."

... and so began a long journey. VERY long story short, I ended up getting duodenal non Hodgkin lymphoma (cancer) which is apparently related to untreated Celiac Disease! Imagine my shock, anger, disappointment, etc.!

From what I understand the blood work they do is very specific to diagnosing Celiac. I am not certain if you can get a false positive. Perhaps others can help you out and answer that for you.

In the end, I say better to be safe than sorry! *hugs* Best wishes!

I'm sorry that happened. I hope you are in remission now and doing well. It is very confusing and doctors are often not clear enough. My doctor responded to me with this " I got your labs everything looks great except you are still gluten allergic. Thus I would highly recommend off all gluten as those people who are gluten allergic can actually develop a rare form of small intestine cancer with persistant use. So I would be careful. "  

She has never been clear that the blood work is very specific and says to "be careful."  She also told me the ONLY  way to confirm is with a biopsy.  I am grateful for this forum and the input I have been getting.  I am scared to death of cancer since my Dad died of esophageal cancer (who know if he has celiacs or not!?) and my aunt and uncle also from cancer within one year of each other.  I plan to now stay gluten-free for life and also get my 6 year old daughter tested - she throws up more than any child I have ever heard of and it all started when she began eating real food at 9 months old :-(

Thanks again!

 

zenjess1980 Contributor
zenjess1980
Posted

Thanks. And yes I am 2 years Cancer free -- on December 16th, and doing pretty well :)

 

Yea, it's a shame doctors aren't more clear on these things and do not have clear communication either! I have to say this forum has been a fantastic help. I'm glad you are staying gluten free!!!! Best wishes to you and your daughter!

CMC74 Rookie
CMC74
Posted
  • Author
7 minutes ago, zenjess1980 said:

Thanks. And yes I am 2 years Cancer free -- on December 16th, and doing pretty well :)

 

Yea, it's a shame doctors aren't more clear on these things and do not have clear communication either! I have to say this forum has been a fantastic help. I'm glad you are staying gluten free!!!! Best wishes to you and your daughter!

That's fantastic. Congratulations! And, thank you very much :-) 

cyclinglady Grand Master
cyclinglady
Posted
16 minutes ago, CMC74 said:

I'm sorry that happened. I hope you are in remission now and doing well. It is very confusing and doctors are often not clear enough. My doctor responded to me with this " I got your labs everything looks great except you are still gluten allergic. Thus I would highly recommend off all gluten as those people who are gluten allergic can actually develop a rare form of small intestine cancer with persistant use. So I would be careful. "  

She has never been clear that the blood work is very specific and says to "be careful."  She also told me the ONLY  way to confirm is with a biopsy.  I am grateful for this forum and the input I have been getting.  I am scared to death of cancer since my Dad died of esophageal cancer (who know if he has celiacs or not!?) and my aunt and uncle also from cancer within one year of each other.  I plan to now stay gluten-free for life and also get my 6 year old daughter tested - she throws up more than any child I have ever heard of and it all started when she began eating real food at 9 months old :-(

Thanks again!

 

Just make  sure you daughter gets the complete panel.   Often  providers only allow first-line doctors (GP, PCP) to only order the TTG tests.  Kids often test better on the DGP.  That may mean insisting on a GI referral.  This should not be an issue since  you had positives.  You can see why now that an endoscopy can help in more ways than one (firm diagnosis and thrfore helping first degree relatives, etc).  

CMC74 Rookie
CMC74
Posted
  • Author

Will do.  My Mom is overseas and has had issues all her life and is planning to get tested too. I thought she had been tested because she went in and had several scopes but no biopsy, just a "visual inspection! "  Kind of unbelievable! 

Archived

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

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


  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748
    ChrisMary
    Newest Member
    ChrisMary
    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

    • RMJ
      Gluten free nuts

      By RMJ · Posted

      I think Tierra Farms is a gluten free facility, at least that is what it says on the bag of walnuts that I have.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      All of a sudden I can't get any gluten-free nuts. There are only 2 nuts available that I can find on the market that are gluten-free. One is Mauna loa brand macadamia nuts, the other is Wonderful pistachios. Other than that all types of nuts that are plain nuts, roasted or raw are no longer gluten-free and are processed and plants that also process wheat.  Has anyone found a source for Pecans, almonds peanuts, walnuts, Pine nuts, etc that is gluten-free?
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      @Xravith, How are you doing?   Two cookies are not enough.  For testing, you need to be eating a minimum of ten grams of gluten for two weeks minimum before testing for Celiac antibodies.  Ten grams of gluten is roughly five or six slices of gluten containing bread per day for two weeks minimum. Breads that contain lots of gluten typically have large bubbles formed by gases escaping during baking.  Gluten helps form those bubbles of trapped gases, like a balloon.  Artisan breads, and thick, chewy pizza crust are good examples.  Look at the size of the bubbles in cakes and cookies.  Small bubbles, so not lots of gluten in them.  You'd have to eat tons of cookies to get ten grams.   Antibodies are made in the small intestine. If you eat at least TEN grams of gluten for at least two weeks, then there will be sufficient antibodies to move into the bloodstream, which can be measured in antibody tests.   If you eat less than ten grams of gluten daily, you will get celiac symptoms, but not enough antibodies will get into the bloodstream to be measured, resulting in false negatives.  Anemia, diabetes, and thiamine deficiency can also affect testing, resulting in false negatives. Since you are having such difficulty consuming sufficient quantities of gluten, you should consider getting a genetic test done.  You do not have to eat gluten to have a genetic test done.  Celiac is inherited.  It's in your genes.  Genes don't change whether you eat gluten or not.  A genetic test looks for the most common known Celiac genes.  If you do not have the genes, your doctor can look for other health conditions that can be causing symptoms.  If you do have Celiac genes, you can assume that those genes are actively causing symptoms.  An endoscopy to check for the amount of intestinal damage caused by Celiac Disease is usually done.   You should also be checked for nutritional deficiencies.  Ask for an Erythrocyte Transketolace Activity test, which checks for Thiamine deficiency.  Thiamine, Vitamin B 1, is one of the eight essential B vitamins.  Thiamine can become low quickly because our bodies use so much of it everyday.  If we're not replenishing Thiamine daily from our diet or because of malabsorption, we can become seriously ill.  Same with the other seven B vitamins.   Doctors are not familiar with nutritional deficiency symptoms as can occur in Celiac disease.  Please get checked for nutritional deficiencies.  Ask for the Erythrocyte Transketolace Activity test soon. Please let us know how you are doing.  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
×
×
  • 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.