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

Blood Test And Endoscopy


Runner1978

Recommended Posts

Runner1978 Rookie

In September, my blood tests were conflicting. One was positive for celiac, the other (apparently the more accurate) was negative. I believe I had a 5 on that one. I've been gluten free for two months. The diarhea has gone away, for the most part, I'm no longer nauseous and I do look healthier. That being said, I have alot of acid reflux and severe abdominal cramps every second day or so despite being gluten-free. So I saw a specialist who says I may or may not have celiac, I may just be gluten intolerant. He also says I may have crohns. My family doctor had tested me for crohns with a blood test and it came back negative. That said, the specialist says there is no blood test for crohns. So now I'm quite worried. I've started eating gluten again in preparation for an endoscopy. So far, I sill feel ok. I sometimes feel nauseoous but it's difficult to tell if these symptoms are real or imagined as I'd really rather have celiac than crohns.

My main frustration is that I can't get a straight answer. I'm not exactly sure what I'm asking with this post. Perhaps a bit of guidance on my positive/negative blood test.


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



Celiac.com Sponsor (A8-M):



BRob66 Rookie
In September, my blood tests were conflicting. One was positive for celiac, the other (apparently the more accurate) was negative. I believe I had a 5 on that one. I've been gluten free for two months. The diarhea has gone away, for the most part, I'm no longer nauseous and I do look healthier. That being said, I have alot of acid reflux and severe abdominal cramps every second day or so despite being gluten-free. So I saw a specialist who says I may or may not have celiac, I may just be gluten intolerant. He also says I may have crohns. My family doctor had tested me for crohns with a blood test and it came back negative. That said, the specialist says there is no blood test for crohns. So now I'm quite worried. I've started eating gluten again in preparation for an endoscopy. So far, I sill feel ok. I sometimes feel nauseoous but it's difficult to tell if these symptoms are real or imagined as I'd really rather have celiac than crohns.

My main frustration is that I can't get a straight answer. I'm not exactly sure what I'm asking with this post. Perhaps a bit of guidance on my positive/negative blood test.

My naturopathic doctor did a blood test,,allergy testing and a saliva test. In my opinion medical doctors don't test for this enough. they usually do the small bowel biopsy,,but I have been told that if you are off gluten/wheat for a while the tests can be negative and conflicting. In the past I was diagnosed with IBS,depression,and environmental allergies. also the villi in the small bowel can be damaged and you can have other food related reactions. i am currently soy free,egg free and dairy free. I also hear some of the syptoms are like crohn's disease and that if untreated celiacs can cause crohns. good luck

Fiddle-Faddle Community Regular

If you have been gluten-free for 2 months, you will need to eat a LOT of gluten for 3 months in order to damage your villi (which healed in those 2 gluten-free months) enough to have a positive biopsy result.

There has been a lot of talk lately about the problems with biopsy--I hope you can find all the discussion on some of the other recent threads on this board! But biopsy is NOT a reliable way to rule out celiac, as there is the potential for a huge possibility of false negatives. This is especially true if you have already been off gluten for more than a month.

happygirl Collaborator

However, if your doctor takes multiple biopsies from multiple places, it increases the possibility of an accurate biopsy reading.

I would recommend that before/at the time of the biopsy (since you are eating gluten again), to have the full Celiac blood panel run. It involves five tests:

AGA IgA

AGA IgG

EMA IgA

tTG IgA

Total IgA.

This way you'll have the biopsy and the full Celiac bloodwork run to help in making an educated decision. Best of luck.

Runner1978 Rookie

If I understand correctly, the blood tests are to identify anti-bodies related to the disease. How can one test be positive without meaning I have it?

happygirl Collaborator

There are different tests in the Celiac blood panel and none of them, individually, are 100% sensitive and 100% specific to Celiac. That is why they recommend the full panel.

While the severity of the damage is often correlated to parts of the Celiac panel (I forget if it is EMA or tTG), you can still have a negative blood test and be positive on biopsy, and vice versa.

If you post the names of the tests, the score, and the range, we can help interpret.

  • 6 months later...
kifert Newbie

my blood tests for celiac came back fine, but my gastroenterologist wants to do an endoscopy while she's got me there for the colonoscopy...My daughter has celiac, but I have no symptoms. does doing the endoscopy make sense?


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

Kifert, absolutely it makes sense, especially if you're going to be having a colonoscopy anyway. Bloodtests aren't all that reliable, they are only reliably positive in people who have extensive damage to their intestines. If you are in the earlier stages of celiac your blood test might be a false negative but the endoscopy might find some damage. Ask them to take plenty of samples though, because just a couple of samples might miss damage if it's spotty.

Pauliina

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

    2. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    5. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748

    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • 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.