Does this definitely suggest Coeliac Disease?

[Heather Hill]

As a life long sufferer of IBS I have, over the years been tested and re-tested for coeliac disease, colon cancer and all manor of digestive disorders, with the final conclusion being that I have IBS. So, for at least 15 years I have been mostly gluten free (not barley or rye free) although, I have not been avoiding gluten fastidiously.  Nevertheless, I do still suffer from lower abdominal pain, bloating and lower back ache and this is becoming more frequent, with back ache now becoming the predominant symptom, that radiates up to my neck. 

Over christmas I decided to put gluten firmly back into my diet in order to run an anti-body test about 8 weeks later and thereby confirm or otherwise whether I am coeliac! The results of the test came out as positive for IgA (not out of range) negative for all other markers, but positive at 12 U/ml for Anti-deamidated Gliadin IgA.  I am hoping to have a biopsy to help confirm.

However, my question is, is this likely to be a strong confirmation of coeliac disease, or could there be some other explanation such NCGS? The reason I ask, is because whilst putting the gluten back into my diet I did not suffer unduly in classical terms ie bloat/pain etc, and the back ache of which I am now suffering more of, was about the same as it is now, as I have once again removed gluten. What I do find is that legumes seem to exacerbate both stomach ache, bloating and  backache symptoms such as lentils, beans etc, whilst the gluten containing grains do not obviously seem to.

 I think I am likely to be suffering from some form of gut linked inflammation that could be triggering the back ache, bloat, but is this likely to be due to coeliac disease or some other GI related problem, such as leaky gut.

Does anyone know or have any experience of these types of symptoms in this context and could shed some light on this for me?

Also, if I work towards mending my "leaky gut" with a gluten-free diet and add supportive supplements will this be a wise thing to do and is it likely to reduce the symptoms I now suffer.  Any thoughts and insights will be gratefully received. 

[Scott Adams]

The positive Anti-deamidated Gliadin IgA result (12 U/ml) suggests possible celiac disease, but it is not definitive on its own, as this marker can also be elevated in other conditions or even in non-coeliac gluten sensitivity (NCGS). Do you know if they also ran a tTg-Iga test? This is the definitive test for celiac disease. The absence of classical symptoms like significant bloating or pain upon gluten reintroduction, along with your history of IBS and sensitivity to legumes, complicates the picture (legumes can be cross-contaminated with wheat). While celiac disease remains a possibility, other conditions like NCGS, leaky gut, or additional food intolerances could also explain your symptoms.

A biopsy would provide more conclusive evidence for celiac disease, but for that you need to be eating lots of gluten daily in the weeks leading up to the endoscopy. In the meantime, adopting a gluten-free diet and supporting gut health with supplements (e.g., probiotics, L-glutamine) may help reduce inflammation and symptoms, but it’s important to consult a healthcare professional to tailor your approach and rule out other underlying issues.

This article might be helpful. It breaks down each type of 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.

 

 

[cristiana]

Hi @Heather Hill

Welcome to the forum.

What I do find is that legumes seem to exacerbate both stomach ache, bloating and  backache symptoms such as lentils, beans etc, whilst the gluten containing grains do not obviously seem to.

I definitely found lentils and other legumes caused me similar symptoms to you in the early days adopting a gluten free diet.  I think my gut was so sore, all that fibre really hurt it.   Also, oats had the same effect, yet before my diagnosis and going gluten free I could eat them for England.  Thankfully, some years later, I am eating pure oats (ones kept free from contamination with gluten) without issues, but even for a while I couldn't eat those.

It is good you are having the biopsy.  Let us know how you get on.

Oh - and one other thing.  If you are taking iron supplements, that can cause bloating and digestive issues.  

Cristiana

[Heather Hill]

Many thanks for your responses, much appreciated.  The tests did include tTg IgA and all the other markers mentioned.  I also had sufficient total IgA so if I'm reading the Mayo clinic thing correctly, I didn't really need the anti-deaminated gliadin marker?

So, if I am reading the information correctly do I conclude that as all the other markers including tTg IgA and DGP IgG and tTg IgG and EMA IgA are all negative, then the positive result for the immune response to gliadin, on it's own, is more likely to suggest some other problem in the gut rather than Coeliac disease?

Until I have a view from the medics (NHS UK) then I think I will concentrate on trying to lower chronic inflammation and mend leaky gut, using L glutamine and maybe collagen powder.

Thank you for your help so far.  I will get back in touch once I have a response, which sadly can take quite a long time.

 

Kindest

Heather Hill 

[cristiana]

Hello @Heather Hill

You are most welcome.  As a longstanding member and now mod of the forum, I am ashamed to say I find numbers and figures very confusing, so I rarely stray into the realms of explaining markers. (I've self-diagnosed myself with dyscalculia!)  So I will leave that to @Scott Adams or another person.

However as a British person myself I quite understand that the process with the NHS can take rather a long time.  But just as you made a concerted effort to eat gluten before your blood test, I'd advise doing the same with eating gluten before a biopsy, in order to show if you are reacting to gluten.  It might be worth contacting the hospital or your GPs secretary to find out if they know what the current waiting time is.

Here is a page from Coeliac UK about the current NHS recommendations.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/#:~:text=If you remove or reduce,least six weeks before testing.

Cristiana

 

Edited March 6 by cristiana