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

Questioning Diagnosis

workingjoe

Recommended Posts

workingjoe Newbie
workingjoe
Posted

I just had the blood test done for Celiac's and the doctor said "one of the five tests came back very positive". She wants me to go on the diet to see if my symptoms go away. My question is...if only one part came back positive, doesn't that mean four parts came back negative. Should I ask for further testing BEFORE I change my diet? I was diagnosed with an very slight allergy to wheat as a child...but not even enough to treat. Could that have affected the test? I am new at this, so how would you suggest I proceed? Any guidance would be appreciated.

Sandy

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Which test came back positive?

workingjoe Newbie
workingjoe
Posted
  • Author

I got the results from the nurse over the phone. I had to ask which one came back positive. She sounded hesitant, started to say "anti-gl....", then said "ABS". I didn't know there was an ABS!!

Sandy

KaitiUSA Enthusiast
KaitiUSA
Posted

The Anti-Gliadin Antibodies are IGA and IGG. That is what they were referring to. Did they say if both or one was positive? With both of those positive there is 95-98% chance you have celiac are stats I have heard of people with both positive. Which other tests did they test for?

If they both tested positive I would go on a gluten-free diet.

workingjoe Newbie
workingjoe
Posted
  • Author

She didn't tell me if it was one or both. I made an appointment to go in and talk to the doctor instead of the nurse this Thur. I will ask then. Thanks! That is exactly the kind of thing I need to know in order to even know what to ask the doctor. Do you know what the percentage is if only one test was positive? The nurse did say "one of the five tests came back positive".

Sandy

KaitiUSA Enthusiast
KaitiUSA
Posted

It depends what all they tested for. There are certain tests that are more specific for celiac then others. The IgA is more specific then the IgG.

These are stats that I got from a site about it:

For, celiac disease, anti-gliadin IgG are more sensitive (about 100%) than IgA (about 50%), but IgA antibodies are more specific (about 95%) than IgG (about 60%).

If you decide to do further testing make sure you get it done by a reliable lab who is experienced and skilled in testing for celiac. I got my 2nd blood test(the one that diagnosed me) from Prometheus which is an experienced lab with celiac. They test for some things that regular tests don't test for and they are experienced with celiac reading.

Also this is at the bottom of a blood test I have and it says that Celiac patients have an increased IgA deficiency. Therefore, negative IgA antibody assay results do not necessarily rule out celiac disease.

If you need more info just let me know :D

lovegrov Collaborator
lovegrov
Posted

What kind of symptoms do you have? Is it worth it to you to try the diet and see?

Did they mention doing a biopsy?

richard

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

Celiac.com Sponsor (A8-M):


MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Blood tests can come back negitive even if you have Celiac Disease.

If you feel that you need more proof before trying the diet there are other tests you can take. My brother hdid blood and biopsy even though there is afamily line of Celiacs. It's up tpo you. You could just try the diet and see how you feel.

If you think you might just have a wheat allergy then look further into that.

Good luck!

workingjoe Newbie
workingjoe
Posted
  • Author

I have irritable bowel symptoms and am VERY skinny. I have some neurological problems (tics, tremors) but those don't seem to relate to celiac disease, do they? I am on Topamax for the tremors which kind of explains my weight (Topamax is also used as a weight loss drug)... so I feel like it may just be IBS.

No one has mentioned a biopsy yet. But I have only talked to nurses. I get to see an actual doctor on Thursday. With the way insurance is I don't know if I can talk them into any further tests. That would cost them MONEY!

Thank you for all your input. I am learning so much. I feel like I know more of what to ask about on Thursday. I hope my doctor is informed about celiac disease.

Sandy

KaitiUSA Enthusiast
KaitiUSA
Posted

Neurological problems can be associated with celiac. Celiac has many symptoms and some people don't have symptoms, and people who do have symptoms vary from person to person.Celiac is commonly misdiagnosed. IBS can be one of the misdiagnosis issues. A blood test can turn out negative and you could still have it. A biopsy was mentioned by a few people and you might want to consider talking to your doctor about that as well. You could always try the diet and see if you improve or not, you could look into other possibilites, or get a biopsy done. Talk to the doctor about your options and about your blood tests you had done.

workingjoe Newbie
workingjoe
Posted
  • Author

Sorry...I meant to say that none of the nurses mentioned anything about a biopsy. I will talk to the doctor about the biopsy, the blood test results, and a possible link to the neurological problems. Thanks again for all your explanation.

Sandy

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      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,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

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

      KAN-101 Treatment for Coeliac Disease

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

      Body dysmorphia experience

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


  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748
    denise.milillo
    Newest Member
    denise.milillo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      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
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      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
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      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
      Body dysmorphia experience

      By Scott Adams · Posted

      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.
×
×
  • 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.