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

Looking For Advice On Pursuing A Celiac Diagnosis

LSP2012

Recommended Posts

LSP2012 Newbie
LSP2012
Posted

Hello,

I'm new here and very new to this lifestyle. My insurance doesn

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

Celiac.com Sponsor (A8-M):


Cara in Boston Enthusiast
Cara in Boston
Posted

More celiacs are overweight at the time of diagnosis. Being underweight due to malabsorption IS a symptom of celiac, but not the most common.

If you don't need a formal diagnosis (for school, insurance, etc.) don't bother making yourself sick in order to be tested. Don't bother spending additional money to find out an answer you already know.

However, I would assume you have it (given your symptoms and response to the diet) and act accordingly - never cheat, encourage all first degree relatives to be tested, be aware of the symptoms of other, related autoimmune disorders, etc.

What would you do differently if the doctor told you you did indeed have celiac?

Cara

mushroom Proficient
mushroom
Posted

I agree with Cara. The diagnosis at this point would serve little purpose except to wave in the face of the ignorant doctor. You would have to eat gluten for 2-3 months to make the testing valid and cause yourself additional distress and damage in the process. Just assume you have it (even if it is non-celiac gluten intolerance the treatment is the same) and get your family tested and keep watch on your kiddos for development of any symptoms (you know what to look for now).

It is perfectly normal, once you have been gluten free, for your reaction to gluten to be stronger than it was previously. Your body is no longer worn down with all that gluten and is able to mount a more vigorous attack with fresh antibodies :)

Eat gluten free and be well.

nvsmom Community Regular
nvsmom
Posted

Hello,

I went into this assuming I was gluten intolerant. I ruled out celiac on my own because of one reason - I gained weight (about 60 pounds over 5 years, which is now coming off on its own after changing my diet). That doesn't seem to be the experience of many celiacs who lose weight due to malabsorption issues

Giambi Newbie
Giambi
Posted

I believe it's also possible to be "gluten sensitive" without actually having celiacs right???

mushroom Proficient
mushroom
Posted

I believe it's also possible to be "gluten sensitive" without actually having celiacs right???

According to today's diagnostic classifications, quite so. But the major definition of celiac disease is gastrointestinal damage, and we are now finding all the other places where it wreaks its havoc, so who is to say right now that these are not also manifestations of celiac disease as well as "sensitivity". It is an evolving area and the criteria may change over time.

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
      24

      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.
    2. 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."
    3. 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...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

      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...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      Related issues

      I am so sorry you are going through this; it sounds incredibly overwhelming and disheartening to be dismissed by the very medical professionals you're turning to for help. It is completely understandable that you feel lost and exhausted, not just from the relentless physical symptoms like the leg pain, stomach issues, and profound fatigue, but from the psychological...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,150
    • Most Online (within 30 mins)
      7,748
    TheaBr
    Newest Member
    TheaBr
    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

    • 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.
    • Scott Adams
      Heat intolerant... Yikes

      By Scott Adams · Posted

      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.      
    • Scott Adams
      Related issues

      By Scott Adams · Posted

      I am so sorry you are going through this; it sounds incredibly overwhelming and disheartening to be dismissed by the very medical professionals you're turning to for help. It is completely understandable that you feel lost and exhausted, not just from the relentless physical symptoms like the leg pain, stomach issues, and profound fatigue, but from the psychological toll of being told it's "just IBS" or that you need a therapist when you know your body is signaling that something is wrong. While it's true that a normal tTG test can indicate that celiac disease itself is being managed from a dietary perspective, it is a major oversight for your doctors to ignore your other diagnoses like SIBO, a hernia, and Barrett's esophagus, all of which can contribute significantly to the symptoms you describe. You are absolutely right to be seeking a new Primary Care Physician who will listen to your full history, take your Barrett's diagnosis seriously, and help you coordinate a care plan that looks at the whole picture, because your experience is not just in your head—it's in your entire body, and you deserve a medical team that acknowledges that. I had hernia surgery (laparoscopic), and it's not a big deal, so hopefully you can have your new doctor give you some guidance on that.
×
×
  • 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.