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

Support for celiac disease on the NHS

nb888
 Share

Recommended Posts

nb888 Rookie
nb888
Posted

Hi there

I was diagnosed celiac in around Mar 2020 just before the pandemic.

Under the NHS system I would be eligible for annual blood tests, help on managing and dealing with any ongoing symptoms, together with periodic outpatient follow up "support" appointments, amongst a few other things.

To cut a long story short these have not really taken place as they should have,  no doubt partly due to the pandemic. Now as we are moving toward hopefully normal times I am still not really receiving the right support and whilst I am spending a lot of time off my own back researching various dietry issues /  symptoms / complications that I have been experiencing, which is fine, there feels to have been little to no support network of professional resource available to assist with this. Whilst I appreciate the NHS cannot and may not be able or required to provide this, the overall experience from my point of view, especially medical expertise to help "fill the gaps" over the last 2 years has not been great, so I have started to consider whether there are any private options. It doesn't help that my GP practice is rated one of the worst in the area but that is another story. I am not especially well off financially but would be ok with spending some money to try and get a better standard of ongoing support and "go to" if something like this is available.

I was wondering if anyone with Celiac disease in the UK has gone private and if so any experiences good / bad, would you recommend doing this or not? I am not really sure what outcome I am ultimately looking for, but just a feeling that there is a better professional support network available would be a nice start.

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum!

Unfortunately your story sounds a lot like the follow up care that those with celiac disease here in the USA receive--which in many cases, including in my case, has been slim to none. Any follow up tests I received, for example I have gotten follow up blood tests to make sure that my tTG antibody levels went back to normal, have only occurred after having to more or less twist my doctor's arm, and this is true even having what is considered to be very good private insurance.

The fact is, most doctors may feel that once you are diagnosed and they tell you to go gluten-free, you're on your own. 

I still think that it's worth going the arm twisting route first, before spending money on it. Also, there are mail order blood tests for around $100 that can give you your antibody levels, which may help you determine whether or not you've been keeping 100% gluten-free.

I never received a follow endoscopy either, and I did have pretty severe villous atrophy. 

I hope you can get the follow up care promised, but paying for an endoscopy out of pocket would be quite expensive. Are you still having symptoms/issues?

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. Jeff Platt
      - Jeff Platt replied to Vozzyv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Weird Symptoms

      Ear pain and ringing your entire life may or may not be TMJ related but could be something else. A good TMJ exam would be helpful to rule that out as a potential cause from a dentist who treats that. I have teens as well as adults of all ages who suffer from TMJ issues so it’s not a certain age when it shows up.
    2. cristiana
      - cristiana replied to Vozzyv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Weird Symptoms

      Not sure if related to coeliac disease but my ear ringing has stepped up a notch since diagnosis. Even since a child silence really hurts my ears - there is always a really loud noise if there is no other noise in a quiet room - but my brain has learned to filter it out. Since diagnosis in my forties I also get a metallic ringing in my ears, sometimes...
    3. Scott Adams
      - Scott Adams replied to More2Learn's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Maybe a Possibility?

      Welcome to the forum, and thank you for sharing your story! It sounds like you’ve been through an incredible journey with your health, and it’s no wonder you’re starting to piece things together and wonder about celiac disease. Your experiences—from childhood through adulthood—paint a picture of symptoms that are often associated with celiac disease, though t...
    4. More2Learn
      - More2Learn posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Maybe a Possibility?

      Hi, I am new! (Although I've used this forum as a reference over the past couple of years.) I'm just looking for some initial reactions to if I actually might possibly have Celiac Disease, or if I'm reaching here. I have had lifelong health issues and not once has a doctor suggested I look into celiac. I always thought it was basically an extreme allergy...
    5. Wheatwacked
      - Wheatwacked replied to GardeningForHealth's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Ground meat absolutely full of gluten?

      "grass-fed" meat by definition cannot contain wheat as it means the animal is only fed grass organic meat can be fed wheat feed
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,100
    • Most Online (within 30 mins)
      7,748
    Deebs
    Newest Member
    Deebs
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jeff Platt
      Weird Symptoms

      By Jeff Platt · Posted

      Ear pain and ringing your entire life may or may not be TMJ related but could be something else. A good TMJ exam would be helpful to rule that out as a potential cause from a dentist who treats that. I have teens as well as adults of all ages who suffer from TMJ issues so it’s not a certain age when it shows up.   
    • cristiana
      Weird Symptoms

      By cristiana · Posted

      Not sure if related to coeliac disease but my ear ringing  has stepped up a notch since diagnosis.  Even since a child silence really hurts my ears - there is always a really loud noise if there is no other noise in a quiet room - but my brain has learned to filter it out.  Since diagnosis in my forties I also get a metallic ringing in my ears, sometimes just one, sometimes both.  But it comes and goes.   My sister also suffers now, we are both in our fifties, but she is not a coeliac, so for all I know it could just be an age thing.  I do get occasional stabbing pain in my ears but that has been all my life, and I do appear to be vulnerable to outer ear infections too.  So not a particularly helpful reply here, but I suppose what I am trying to say is it might be related but then again it could just be one of those things.   I think in the UK where I live doctors like you to report if you get tinnitus in just the one ear.  I reported mine but no cause was found.  Most of the time it is nothing but sometimes it can have a cause that can be treated, so perhaps worth reporting to your GP.  
    • Scott Adams
      Celiac Maybe a Possibility?

      By Scott Adams · Posted

      Welcome to the forum, and thank you for sharing your story! It sounds like you’ve been through an incredible journey with your health, and it’s no wonder you’re starting to piece things together and wonder about celiac disease. Your experiences—from childhood through adulthood—paint a picture of symptoms that are often associated with celiac disease, though they can overlap with other conditions as well. The recurring sinus infections, being underweight as a child, chronic gastrointestinal issues, nutrient-related symptoms like cramps, and the persistent fatigue and brain fog are all things that many people with undiagnosed celiac report. Your reactions to gluten also stand out. The improvement in symptoms when you reduce or remove gluten, followed by the resurgence of pain and other problems when you reintroduce it, is a common experience for those with celiac or gluten intolerance. While your frustrations and trials with elimination diets might not have given you concrete answers yet, they’ve provided valuable clues. It’s also worth noting that celiac disease doesn’t always present in the classic way. Many people, like yourself, may not experience severe gastrointestinal distress but instead have “atypical” or extraintestinal symptoms like joint pain, menstrual irregularities, fatigue, and more. It’s a condition that can go undiagnosed for years, especially when symptoms are subtle, sporadic, or mistakenly attributed to other issues. The fact that you’ve sought alternative approaches to feel better shows just how determined you’ve been to find relief, even without a definitive diagnosis. Given your history and how your body responds to gluten, it would be worth exploring celiac disease further with a medical professional. Before removing gluten completely, it’s important to get tested while you’re still eating it, as going gluten-free beforehand can affect the accuracy of the results. A blood test for celiac antibodies (like tTG-IgA) is usually the first step, and if positive, an endoscopy may follow to confirm the diagnosis. If the testing process feels daunting, keep in mind that getting answers could give you clarity and help guide your health decisions going forward. Whatever the outcome, you’ve already made significant strides in identifying triggers and managing your symptoms. Your awareness and persistence are key, and this community is here to support you as you continue to seek answers. This article might be helpful. It breaks down each type of blood test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      Hi, I am new!  (Although I've used this forum as a reference over the past couple of years.) I'm just looking for some initial reactions to if I actually might possibly have Celiac Disease, or if I'm reaching here.  I have had lifelong health issues and not once has a doctor suggested I look into celiac. I always thought it was basically an extreme allergy that needed an EpiPen, and I know that's not me.  However, I stumbled upon some symptoms, realized I was wrong, and after some research I'm almost shocked at what I have found.  It seems like anything I've ever struggled with has a potential correlation to this disease!  I'm in my 40's, now.  Here is my journey to date... Issues as a Kid: tons of allergies, and had sinus infections all the time... however I didn't have hayfever-like allergies and the scratch tests didn't register much, it was more that when I was exposed to allergens (like say I spent hours with a cat) I was certain to get a sinus infection and it lasted months. was extremely skinny and everyone always said I was anorexic (I wasn't) always getting sick and the illnesses hang on for a long time always cold (my favorite thing to do is sit in front of a space heater or be out in 90 degree weather) intermittent bad constipation (still happens but not as severe) horrible toe cramps that would wake me up in the middle of the night As I got older (teenage/college years): acid reflux diagnosis learned that beer made me EXTREMELY sick, cannot tolerate it horrible issues with menstrual cycle - I wasn't regular, had awful cramps and PMS, sometimes cannot function the first couple of days night terrors/sleep walking more stomach issues - I learned I couldn't have black coffee.  I often had issues especially when traveling.  For example I finally noticed a pattern that I could never, ever eat at a hotel buffet spread - it would always make me sick afterwards. More recent problems: always tired periodic pain on right side that can be so painful I can't stand up straight. Have had all kinds of scans and doctors always say I'm fine.  I was so sure I had gallstones or my liver was failing but... nope. chest pain brain fog not diagnosed but many, many ADHD symptoms lots of inflammation, am overweight now toe cramps evolved into leg/calf cramps None of my symptoms from any era of my life ever really resolved, except I went from being skinny to ~20/30 pounds overweight, and as I got older I got less outright sinus infections.  Largely due to the pain in my right side and the fact that I always, always seem to pick up every illness, especially when traveling, I started pursuing alternative medicine paths... I did the Pritikin lifestyle, I tried an elimination diet, I followed the Root Cause Protocol, I did a Leptin reset.  A lot of these paths recommend removing gluten, and in the past year or so some of my symptoms have gone away!  Specifically less issues with toe cramps, sometimes the side pain would go away for a long time, and my acid reflux got much better.  But, because I was never diagnosed with any specific intolerance, I wasn't militant about the gluten - I had cut out dairy, soy, all kinds of things.  So I would say cross-contamination is ok, or make an exception at a group outing. Then one day, I just got frustrated and ate some normal slices of pizza... and my side pain came back!  I started doing research and now I'm here and wondering... could I have actually had this my whole life??!? Thoughts and observations welcome.           
    • Wheatwacked
      Ground meat absolutely full of gluten?

      By Wheatwacked · Posted

      "grass-fed" meat by definition cannot contain wheat as it means the animal is only fed grass  organic meat can be fed wheat feed
×
×
  • Create New...