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

Diagnosis help

Kaatzal
 Share
Go to solution Solved by trents,

Recommended Posts

Kaatzal Newbie
Kaatzal
Posted


I am getting very confused with the process of getting a diagnosis of potentially coeliac disease.

I have been having all of the symptoms associated with coeliac disease so I cut out gluten and saw an improvement. I have visited a gastroenterologist and he tested me for genes that might lead to coeliac disease. I have tested positive for one of these genes (he hasn’t specified which). 

I had a blood test and to check for coeliac disease and it tested negative but I had stopped eating gluten for a few weeks before this test. So this test was ruled unreliable.

However, a few years ago I was tested for coeliac disease whilst I was eating gluten (had no symptoms at this time) and the test was negative. Due to the result of this test, the gastroenterologist is saying that I definitely do not have coeliac disease as he believes it would have tested positive even though I wasn’t having symptoms. 

I have been reading papers and information on the Coeliac U.K. website and it says that Coeliac disease can be developed at any time. This seems to be contradicting information.

Any help would be greatly appreciated

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

Celiac.com Sponsor (A8-M):


plumbago Experienced
plumbago
Posted

The only way to reliably know if you have active disease is to go back to eating gluten, wait, and then repeat the comprehensive celiac panel.

From NHS Inform:

Before a blood test is taken, it's important that you eat gluten-containing foods in more than one meal every day for at least 6 weeks before the test. Remember to eat a normal gluten diet for 6 weeks before any tests.

Wheatwacked Veteran
Wheatwacked
Posted
18 minutes ago, Kaatzal said:

the gastroenterologist is saying that I definitely do not have coeliac disease as he believes it would have tested positive even though I wasn’t having symptoms. 

He is wrong.  It is not uncommon for it to take 10 or more years to be diagnosed with misdiagnoses of other diseases along the way.

"To make matters more challenging, celiac symptoms can also mimic symptoms of other diseases, such as anemia, Crohns disease, gastric ulcers, irritable bowel, parasitic infection, even various skin disorders or nervous conditions."

 

  • Solution
trents Grand Master
trents
Posted
  • Solution

The onset of celiac disease can happen at any stage of life. Before onset you will possess the genetic potential but all other tests will be negative.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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 Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    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

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.