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

Test Results?


sunny13

Recommended Posts

sunny13 Newbie

I have been on medication (Robinul Forte) for Irritable Bowel Syndrome for the last 2 months. In the meantime I was tested for both a thyroid condition and Celiac's Disease. I don't have the test results in hand but I know that 2 out of the 3 things tested for concerning Celiac's reflect weak positive results. The 3rd was negative. Basically, my doctor said that he does not know whether I have Celiac's. He said that my options are to either continuing taking the medication for Irritable Bowel or try the Gluten-Free Diet. It seems that my symptoms have been somewhat better while on the medication, however, I do not want to take medication for the rest of my life. Any information would be greatly appreciated? Could the fact that 2 of these things tested for reflect gluten sensitivity rather than actual Celiac's disease? Do most of the people with the disease test positive for all 3 of the antibodies? I understand that the Gluten free diet is difficult to maintain, but if my stomach problems are something I can control naturally -- I am all for it!

Thank You -- this site is very helpful!


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



Celiac.com Sponsor (A8-M):



Guest jhmom

My doctor tried to diagnose me with IBS too but I would not accept it. He never offered me meds (for IBS) and I lived with terrible pain on a daily basis. He finally did bloodwork to check me for Celiac but ruled it out when the bloodwork came back negative. I also had an endoscopy done which showed patchy inflammation and he continued to dismiss Celiac. I knew what I was going through was not normal and was not IBS, I knew something more serious was going on.

I really cannot offer any advise on the blood work except to say it is my understanding if you have a positive result you most likely have Celiac or gluten sensitivity. If you are not comfortable with the results you could check out www.enterolab.com they perform a stool panel test, which is more sensative than blood.

A gluten free diet is not bad, yes at first it can be a little overwhelming but it does get better especially after you see the change in yourself and the way you feel.

I hope this helps and that you get answers soon! :)

seeking-wholeness Explorer

sunny,

You certainly could have celiac disease. Blood tests can come back false-negative for a number of reasons. Also, celiac disease-related antibodies are concenrated INSIDE the small intestine and usually only "spill" over into the bloodstream LATE in the course of the disease! Another interesting observation is that blood antibody levels DO NOT correlate with the extent of intestinal damage. Some patients have low antibody levels but a lot of intestinal damage, while others have high antibody levels and little damage (but presumably the celiac disease is affecting other body systems, just not primarily the intestines).

If your doctor refuses to schedule a biopsy, you will need to decide whether to try the gluten-free diet immediately or pursue further testing first. Open Original Shared Link testing would probably still be accurate even after you go gluten-free (for a couple of months, at least), but conventional testing would NOT be!

The gluten-free diet is "difficult" only in that YOU must accept COMPLETE responsibility for ensuring that your food is safe to eat. It is extremely risky to trust other people's judgment, especially if they are not gluten-free themselves, and even their best intentions can easily be derailed by contaminated cookware or countertops! However, it is usually NOT difficult to stick with the diet once you start to see improvement, simply because you will feel so much better. It can take time before improvement becomes noticeable, and you WILL have a lot of accidents for the first year or so, but you will be healing--and that makes it worth it!

It is great that you prefer natural healing to drug "therapy"--too many people (in my opinion) don't! I hope you get some answers soon, so you can begin to heal. Good luck!

sunny13 Newbie

Thank you for your advice. I actually have the test results in my hand right now. The 2 tests showing weak positive results are the Antigliadin IgA and the Antigliadin IgG. It the tTG that reflects negative results.

After reading the responses that I have received from this message board and conducting my own research, I plan to stop taking the Irritable Bowel Medication this week and begin a gluten-free diet this weekend. I may also take advantage of the more specific test (enterolab). Like many other people on these message boards I tend to be prone to mouth sores as well. Also I notice that sometimes I develop a minor allergic reactions to certain types of beer. Could this be due to Gluten Sensitivuty/celiac disease?

Now I am on a quest to find out what food and drink are gluten-free. Any suggestions of where I can find detailed lists on the internet would be greatly appreciated! Again thanks for the quick responses :)

Guest jhmom

Good for you! I am happy to hear you are taking charge of your health!! :D

I do not drink beer or other drinks but it seems that I have read something about beer having gluten in it. If you do a search on "beer" on this board it will pull up all posts related to it.

As far as other gluten-free food and drink, here is a good link of "some" of the gluten free foods and drinks:

www.glutenfreeinfo.com

I hope this helps :)

gf4life Enthusiast

Hi Sunny13,

I have something to say about the blood tests. First off they are not 100% accurate, I don't think there are too many tests out there that are. <_< But as for the tTG test being negative, first off the test has to be performed by a specialized lab, and it has to be done using human tTG and most regular labs use pig tTG. Unless you use human tTG the test is not accurate. I personally tested negative on all the blood tests. My kids tested positive on the IGG only and have now had the tests repeated by their new doctor and he only uses Promethius Labs for testing for Celiac Disease and they only use human tTG and always check for IGA deficiency (which can alter your test results if you are deficient in IGA). I know my test were done by an incompetent lab (at least as far as celiac disease goes), but at least I can be assured that my kids tests are accurate. :rolleyes:

God bless,

Mariann

By the way, I was diagnosed through Enterolab using their Complete Stool and Gene Panel. I tested positive on the Gliadin and tTG stool tests, and positive for HLA DQ2 (the main gene responsible for celiac disease, the other being HLA DQ8).

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,429
    • Most Online (within 30 mins)
      7,748

    twin68grcom
    Newest Member
    twin68grcom
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      I've got some lab work results going back to 2010, various MRIs and CT scans and ultrasounds. I discovered two things that MIGHT be of interest to the GI doc tell me what you think? one is the results to an abdominal CT scan with contrast in 2013 that includes this:  "there is some thickening seen in the second and third portions of the duodenum"    Since this CT scan was for left lower quad pain, it was not followed up on   Then in May of 2024 I saw a foot specialist for problems with my feet. Some of that pain is due to a very obvious deformity of both of my legs- the right worse than the left. The dr suggested that my symptoms sounded like an auto immune condition (???) and I thought he was nuts but he ordered some lab work- it came back negative except for a weak positive on one test HLA-B27 and there was a follow up test recommended but that was never ordered and this dr gave me a useless Rx for custom insoles which he refused to address - and my calls to his office were never returned.   At that time I was having all over joint pains, plus some numbness in my feet (also stiffness) and some burning pain in my toes- esp the big toe on the right foot (the more deformed side of my body)   The last time I was eating any appreciable amount of gluten containing foods was in the period of Nov 2024 to around sometime in the summer of 2024. I regularly ate a barley soup that I loved and had subs and pizza and toast etc. I was no longer eating wheat pasta, had already switched to brown rice pasta but otherwise I had not yet made a clear connection between what I was calling 'refined grain products' and any symptoms that I had. And the symptoms were vague and could be attributed to other things.   I was referred to a neurologist in late 2023 for symptoms  of confusion/disorientation, that included loss of balance that I attributed, in part, to the inability to feel where my feet were. Some symptoms such as high spikes in blood pressure (some close to 200 over 100! scary stuff) were later determined to be due to covid or long covid (also had loss of sense of smell and taste)    I had periods of dizziness that did NOT include any spinning sensations, it was more of a feeling of lightheadedness as if my mind would go blank- very strange, never really got any answers about that but that eventually went away so not worried about that   WHAT OTHER THINGS from my past records might be good for the GI dr to know? I had my very first Vit D test done in 2023 and it was low at 23, supplements have gotten that up in the range of adequate but values varied up and down... most recent test was Nov 2025 and it was 45ish I think. That's on a min of 5000Ius per day (there are some fortified foods I eat sometimes that have added vit D)   I thought my serum calcium ran on the low side but it turns out that the reference ranges have changed for the labs that I use- one changed their RR back around er, 2014 I think? so I have no clue how to compare the results before and after those changes   calcium has never been below normal and most of my blood work looks "normal" except during illness or other issues like if I'm in afib- blood work looks insane LOL    I don't know what to make of all this but it sure will be nice to get some answers!         
    • catnapt
      just a few days off of that drug and my digestive system is finally getting back to normal stopping the gluten challenge was not enough to get back to normal, I was still horribly constipated with what seemed like a paralyzed digestive track- nothing was moving! but now, with a few mag citrate capsules that I had to order online and stopping the chlorthalidone, things are getting back to my usual "working well" digestion   so it's clear that the symptoms I had during the gluten challenge were compounded by the new med that was started the same day (I feel like the Dr really should have known better than to do those two things at the same time, add a new drug and start a new diet protocol... but I'm just the patient, what do I  know, right?)   I am going to do another 24 hr urine in a few weeks to see if lowering the dose of vit D gets my urine calcium down to a more tolerable level. that's the plan.  hope it works.  
    • Wheatwacked
    • catnapt
      oh geez!! i made a whole long detailed post and it didn't save it   I give up grrrrrrrrrrr  
    • catnapt
      I'm not delaying my recovery- I was well on my way to recovering, IF I do have celiac disease by listening to my body and not eating the foods that made me feel ill. the drug I just stopped taking was making me incredibly ill and it's unfortunate and more than  a little frustrating that the dr  
×
×
  • 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.