Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

UK Wait times for Endoscopy


Joel McK

Recommended Posts

Joel McK Rookie

Hi all,

I'm just wondering if anyone could shed some light on UK Waiting times? I've been waiting for an endoscopy since August. I've had a phone consultation with the hospital who confirmed I need an endoscopy to confirm if I'm Coeliac or not. Since then I've had nothing. I've spoke to the hospital (now referred to a private provider via the NHS) but I'm just told I have to wait till the doctor signs a date. 

 

It's so frustrating and tiresome. I know I'm been impatient but I feel so ill and tired and I really just want to see what's going on and find a solution. I know the answer is, "How long is a piece of string" but if anyone has any advice or rough expected times, I'd be very greatful. 

 

Thank you,

Joel


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



Celiac.com Sponsor (A8-M):



Wheatwacked Veteran
(edited)

Hi Joel Mck.  Welcome,

I don't think that you are being impatient.

     Depending on how much you are suffering, you could consider starting the Gluten Free Diet now.  Just be sure to start eating 10 grams of gluten a day for at least two weeks before your endoscopy or additional testing.  It will give you extra evidence that gluten free eases your symptoms.

     Celiac Disease causes malabsorption, leading to malnutrition. 

The National Diet and Nutrition Survey shows that about 1 in 6 adults in the UK have low levels of vitamin D in their blood. 

     It takes a long time at high dosage (125 mcg and up) to raise your vitamin D blood level to normal levels. (200 nmoi/L or 80 ng/ml at the end of summer).  Getting a 25-hydroxy vitamin D test first would help you track your progress, if you can get it done. Vitamin D controls the immune system.  You might as well start to fix that.  B vitamins and Choline deficiencies are ommon in Celiac disease.  They can affect your digestive and nervous systems.     

Quote

Vitamin D deficiency is very common in the UK due to diet, lifestyle, weather and our northern latitude. It is estimated that 16% of children in the UK will be deficient in vitamin D leading to myriad signs and symptoms. Nottingham University Hospitals

Vitamin D Is Not as Toxic as Was Once Thought

NHS Vitamin D

Edited by Wheatwacked
Joel McK Rookie
21 hours ago, Wheatwacked said:

Hi Joel Mck.  Welcome,

I don't think that you are being impatient.

     Depending on how much you are suffering, you could consider starting the Gluten Free Diet now.  Just be sure to start eating 10 grams of gluten a day for at least two weeks before your endoscopy or additional testing.  It will give you extra evidence that gluten free eases your symptoms.

     Celiac Disease causes malabsorption, leading to malnutrition. 

The National Diet and Nutrition Survey shows that about 1 in 6 adults in the UK have low levels of vitamin D in their blood. 

     It takes a long time at high dosage (125 mcg and up) to raise your vitamin D blood level to normal levels. (200 nmoi/L or 80 ng/ml at the end of summer).  Getting a 25-hydroxy vitamin D test first would help you track your progress, if you can get it done. Vitamin D controls the immune system.  You might as well start to fix that.  B vitamins and Choline deficiencies are ommon in Celiac disease.  They can affect your digestive and nervous systems.     

Vitamin D Is Not as Toxic as Was Once Thought

NHS Vitamin D

Thank you so much,

I'm going to keep on gluten just for now as I've been referred to the Circle Group over the NHS so I have a feeling it could happen quickly when it does happen but I'll call on Monday and ask them how much notice I'll get. As for vitamin D etc. that's a great call. Since the darker days I've noticed a big change, and obviously if it is coeliac, it's likely I won't be absorbing a lot of what I should be from my diet. 

 

Thank you again for taking the time to respond and for your advice and points. 

 

Cheers,

Joel

Scott Adams Grand Master

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

  • Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
  • Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

Joel McK Rookie
39 minutes ago, Scott Adams said:

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

Thank you Scott. I called the hospital earlier in the week and they returned the call yesterday. I'm now booked in for the 11th of January. I'll keep to a full gluten diet until the Endoscopy. In fact I'm compiling a gluten list of my favourite places and places I've always wanted to try. Just incase I can't go again. I'm greatful to be able to enjoy possibly one more care free Christmas, but equally really looking forward to knowing what's going on with me. 

 

Thank you for taking the time to reply again.

 

Joel

Scott Adams Grand Master

Let us know how things turn out.

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,234
    • Most Online (within 30 mins)
      7,748

    JGBJ
    Newest Member
    JGBJ
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
    • Betsy Crum
      I don't have health insurance so I have never had any testing done. I always thought if I stay away from gluten Ill be fine but I suppose that isn't enough anymore. I will look into getting an allergy test. Thank you for your input! 
    • trents
      I remember reading an article summarizing testing done by Gluten Free Watchdog on several brands of dried lentils. They were all heavily cross contaminated with wheat and the commentary was to the effect that dried lentils in general were the most heavily cross contaminated product category in their testing data base. So, I would definitely not use any dried lentil product that was not tested to be Gluten Free (<20ppm of gluten) or Certified Gluten Free (<10ppm of gluten).
    • Scott Adams
      While spices, lentils, beans and chickpeas are naturally gluten-free, the main concern with any brand is cross-contamination during processing and packaging. Since Suraj doesn't appear to certify their products as gluten-free or use dedicated gluten-free facilities, there is some risk of trace gluten exposure, especially with their corn flour which could be milled on shared equipment with gluten-containing grains. For absolute safety, I'd recommend looking for brands that are certified gluten-free by organizations like GFCO - good options include McCormick for spices, TruRoots or Bob's Red Mill for lentils and beans, and Anthony's for corn flour. That said, if you need to use Suraj products, be sure to carefully check labels for any wheat warnings, thoroughly rinse lentils and beans before cooking, and consider contacting the manufacturer directly to ask about their gluten testing protocols. Many in our community have found that investing in certified gluten-free brands gives them greater peace of mind and helps avoid accidental gluten exposure, especially for higher-risk items like flours.
×
×
  • Create New...