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

Been waiting 3 months for a consultation / biopsy and have been allocated a telephone call.


Lornaq

Recommended Posts

Lornaq Newbie

Hi

I had a blood test around 3 months ago for recurrent tummy problems and a cough, and got a call from the doctor who said my results were consistent with coeliac and I should be seen by a specialist. The result was lgA level 146.7 U/mL [<14.9] so almost 10 x higher than normal, but not quite. I am having this telephone call in 2 weeks, but wondered if anyone knew what I might actually have a biopsy, or do you think that as it's nearly 10x higher than normal the consultant might just refer me to a dietician?

Am in the UK, so our wait lists are quite long at the moment. 

Thanks


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



Celiac.com Sponsor (A8-M):



trents Grand Master
48 minutes ago, Lornaq said:

Hi

I had a blood test around 3 months ago for recurrent tummy problems and a cough, and got a call from the doctor who said my results were consistent with coeliac and I should be seen by a specialist. The result was lgA level 146.7 U/mL [<14.9] so almost 10 x higher than normal, but not quite. I am having this telephone call in 2 weeks, but wondered if anyone knew what I might actually have a biopsy, or do you think that as it's nearly 10x higher than normal the consultant might just refer me to a dietician?

Am in the UK, so our wait lists are quite long at the moment. 

Thanks

Welcome to the forum, Lornaq!

You say, "but wondered if anyone knew what I might actually have a biopsy . . . " Not sure what you are asking here. Is there a typo? Are you asking us if we think your physician will order a biopsy or if the results of the blood antibody tests would warrant such? The "what" in your question is unexpected.

You say, "The result was lgA level 146.7 U/mL [<14.9] so almost 10 x higher than normal . . ." There are a number of IGA antibody tests that can be run for celiac disease but the most common one is the tTG-IGA. Is this the one you are talking about? When we see just "IgA" we usually understand that to mean total IGA count. But from the numbers you give it looks like it is most likely referring to tTG-IGA. It sounds like you already are aware that in the UK it is common practice to declare an official celiac diagnosis when tTG-IGA is 10x normal or greater. Since your value is technically not quite there it is possible that your physician may want to order a biopsy for confirmation.

What I can tell you is that if it were me I would conclude without hesitation that I had celiac disease if my tTG-IGA values were as high as yours, especially with "tummy problems." One option would be for you to begin the gluten free diet and see if your symptoms improved. But beware if you did that you would need to go back on regular amounts of gluten (defined by the Mayo clinic as daily consumption of an amount of gluten equivalent to two slices of wheat bread) for at least two weeks) if you wish to have a biopsy done in the future.

Lornaq Newbie
11 hours ago, trents said:

Welcome to the forum, Lornaq!

You say, "but wondered if anyone knew what I might actually have a biopsy . . . " Not sure what you are asking here. Is there a typo?

Yes, apologies. I meant to say does anyone know "if" i will have a biopsy or it they will just refer me to a dietician

Lornaq Newbie
18 hours ago, trents said:

Welcome to the forum, Lornaq!

You say, "but wondered if anyone knew what I might actually have a biopsy . . . " Not sure what you are asking here. Is there a typo? Are you asking us if we think your physician will order a biopsy or if the results of the blood antibody tests would warrant such? The "what" in your question is unexpected.

You say, "The result was lgA level 146.7 U/mL [<14.9] so almost 10 x higher than normal . . ." There are a number of IGA antibody tests that can be run for celiac disease but the most common one is the tTG-IGA. Is this the one you are talking about?

Yes it was the tTG-lGA

Scott Adams Grand Master

With tTG-IGA numbers close to 10x normal, I think you may want to have the conversation about possibly skipping the biopsy, as in the UK it is now standard practice to do that once level are 10x normal. The article below talks about this change in how celiacs are diagnosed in the UK. I'd wait until you phone call before going gluten-free, as your doctor still may want to do a biopsy, but if your doctor confirms that you don't need one, start a gluten-free diet ASAP.

 

Lornaq Newbie
15 minutes ago, Scott Adams said:

With tTG-IGA numbers close to 10x normal, I think you may want to have the conversation about possibly skipping the biopsy, as in the UK it is now standard practice to do that once level are 10x normal. The article below talks about this change in how celiacs are diagnosed in the UK. I'd wait until you phone call before going gluten-free, as your doctor still may want to do a biopsy, but if your doctor confirms that you don't need one, start a gluten-free diet ASAP.

 

Thanks  I has read something similar, I wondered if anyone on the forum in the UK had been diagnosed recently without having the biopsy.

Onegiantcrunchie Contributor
On 2/4/2022 at 6:04 PM, Lornaq said:

Thanks  I has read something similar, I wondered if anyone on the forum in the UK had been diagnosed recently without having the biopsy.

UK here. I "basically" got diagnosed without one about 4 years ago, off the back of 2 positive blood tests. I don't think they made it fully official but they do treat me as a coeliac. My positives were mild though and yours is high, so they might have more certainty with you. I hope they diagnose you without needing you to do a biopsy!


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



Celiac.com Sponsor (A8-M):



Russ H Community Regular

I think the UK modus operandi is diagnosis via blood test results. Further endoscopy to check for pathology if over the age of 55 or under 55 and symptomatic but negative blood test.

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
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Lkg5 replied to Amyinwyoming's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Sprouts packaged roasted, salted nuts - says "made in a facility that processes wheat" - has anyone had a problem?

    2. - Scott Adams replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test

    3. - Scott Adams replied to Kwinkle's topic in Coping with Celiac Disease
      1

      I’m so confused…

    4. - Scott Adams replied to RobHicks's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Weak stomach digestion after undiagnosed celiacs

    5. - Kwinkle posted a topic in Coping with Celiac Disease
      1

      I’m so confused…


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,264
    • Most Online (within 30 mins)
      7,748

    Vanessa W
    Newest Member
    Vanessa W
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Lkg5
      I never buy any nuts from a facility that processes wheat.  It’s not worth the risk.  Surprisingly, Trader Joe’s nuts do not come a factory that processes wheat, and I do not react to them.  I am sensitive to gluten.
    • Scott Adams
      If all testing is now completed you may want to let your doctor know that you are starting a gluten-free diet. If you symptoms go away on the diet it is further confirmation that you may have celiac disease, and/or non-celiac gluten sensitivity.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.    
    • Scott Adams
      As long as the B Comlex is gluten-free, it should be helpful to you, especially since you're recently diagnosed and your villi are in the recovery process. You may need to look at further supplements as well, and it's a good idea for your doctor to check levels for many nutrients to see what deficiencies you might have. 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.    
    • Scott Adams
      How long ago were you diagnosed? There are many symptoms and issues for those who are newly diagnosed, and recovery can take a while. 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:    
    • Kwinkle
      As I mentioned before I’m pretty new to this. I’m about a month into being completely gluten-free. But I’m still having issues with fatigue, loss of appetite, and gas pain. I’ve started taking the B complex, and was hopeful, but that would help me get past especially the fatigue and the loss of appetite. But now I just read a more recent post where somebody is saying that the B complex is not necessarily good for us?  I was very comfortable with the B complex because our bodies shed excess B vitamins. But now I just looked it up and B vitamins can cause gas and bloating.  As I mentioned, that’s one of my biggest symptoms, and I also think it’s directly connected to my loss of appetite, which, of course is connected to my fatigue.  I’m so confused I don’t really know what to do now?
×
×
  • Create New...