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

Anyone diagnosed in the Uk? I feel lost.

Veralenn
 Share

Recommended Posts

Veralenn Newbie
Veralenn
Posted

Hi everyone. I have a lot of celiac symptoms for years but never related to gluten until recently. So I made 12 days gluten free and then went to the doctor to ask for a test. The doctor told me to eat gluten for 2 weeks and then come back. She didn't mention how much of gluten or anything so I was having 2 pieces of toast bread daily.

In the day I went for the blood test I decided to also buy me a pharmacy one that can be made at home. The test gave a faint positive and the instructions say it doesn’t matter how strong the colour is to be considered positive. Here is a link to the picture https://ibb.co/Ln5TmKk

After a few days, I called the surgery to know my results and a receptionist told me it was normal. I asked again if I should book an appointment and she said the doctor was written there it was normal.

And I obviously have no access to see the values at all.

I have no clue on what to do at this point. Any idea or similar situations?

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, Veralenn!

The Mayo Clinic Guidelines for the pretest gluten challenge is the daily consumption of two slices of wheat bread (or the equivalent) for 6-8 weeks leading up to the day of the blood draw. How much your departure from daily regular consumption of gluten affected your test results is difficult to say. We also don't know what specific tests were run. There are a number of blood tests for celiac disease that can be run and not everyone will test positive on all of them. The most common test ordered by physicians is the tTG-IGA but some who test negative in that one will be positive in others. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Unfortunately, many physicians are fairly ignorant when it comes to gluten-related disorders and do not test thoroughly or they fail to give proper gluten-challenge pretest instructions to their patients. It is sad that your experience is a tale that has been too often told by others on this forum.

It is also sad that in the UK people apparently don't have online access to their medical test results. Can you call and get the information from the doctor's office about which test or tests were run and what the values were?

One option would be for you to start consuming gluten again daily for 6-8 weeks (see guidelines above from Mayo clinic) and test yourself again with a home test kit for confirmation.

Another option would be to assume you have either celiac disease or non celiac gluten sensitivity (NCGS) and commit whole-heartedly to eliminating gluten from your life. If in weeks or a few months your symptoms improve significantly you have what you need to know. Celiac disease and NCGS share many of the same symptoms. NCGS does not cause damage to the villi that line the small bowel as does celiac disease so there is currently no test for it. It is diagnosed by first ruling out celiac disease and symptom improvement when gluten is removed from the diet. But truly living a gluten-free lifestyle is more challenging than most people imagine at the outset. This might help you get started: 

 

cristiana Veteran
cristiana
Posted

Hi Veralenn

Yes, I'm in the UK and I was diagnosed in Britain nine years ago.

The National Institute for Health Care and Excellence has published these recommendations for coeliac testing:

https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#recognition-of-coeliac-disease

Some GPs may not be up to speed with these recommendations, so you may wish to copy out one or two salient points to discuss at your next doctor's appointment.

Or, as has been said, you can of course give up gluten regardless, if it makes you feel better. 

But you should also be aware that in the UK coeliacs are usually offered a comprehensive package after diagnosis through the NHS, to include: a referral to a nutritionist, DEXA bone density scans as well as annual (or more frequent) blood tests and gastroenterologist reviews, to monitor the condition.  

Personally I think a firm diagnosis is worth pursuing.  Even if it turns out you don't have Coeliac Disease, it would be good to rule it out.  I think in your position I would go back to your surgery and have a chat with your doctor as a starting point.

Cristiana

 

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,283
    • Most Online (within 30 mins)
      7,748
    mamakris
    Newest Member
    mamakris
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • numike
      is my cleiac disease gone?

      By numike · Posted

      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      is my cleiac disease gone?

      By Wheatwacked · Posted

      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      is my cleiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      is my cleiac disease gone?

      By numike · Posted

      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      is my cleiac disease gone?

      By trents · Posted

      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
×
×
  • Create New...