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.

  • 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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    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

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.