My 6 year old grandson has been tested for CD and was negative.My question is, just how reliable are these tests? On the one hand CUK says they are accurate but I have read that they only pick up about 66% of coeliacs?
So what to believe?
If he was an adult self-diagnosis would be appropriate, trying a strict GFD and see how your body responds but in children this is probably not the way to go.
Any advice please.
Hi Penelope2, that must be a worry. Is there coeliac in your family? Recently, I met a 4 year old with a new diagnosis of coeliac. It was quite hard won, but her maternal Uncle is coeliac and this helped to confirm the diagnosis. Now, they have 'buddied up', with Uncle giving them the benefit of his experience. I hope you get some answers.
That sounds like a great support system for the little one! Having someone experienced to guide them through the transition can make a huge difference. I hope Penelope2 finds the answers they need soon. For helpful gluten-free tips and dining options, check out glutenfreedine.com/.
Thanks Cseobilal. Helpful if you are in or visiting US.
What test has he had exactly?
I’m a Coeliac, 69yo diagnosed 13 years ago. My youngest grandson had stomach issues and had a test at 7 years old and as blood test results were so high they didn’t want to do a gastro test.
I would say that even as an adult, self diagnosis isn’t a great idea due to needing regular support if it is Coeliac Disease, but anyway, it’s possible your grandson could have had a false negative if it was a blood test and also if he’d been laying off gluten containing containing food for while.
Also further investigation could depend on how sympathetic/clued up his GP is. It took me over 40 years to find out what was wrong with me (gut related, there’s plenty wrong with me in other ways!) and my daughter had to absolutely insist my grandson had a Coeliac screen after over a years worth of blind alleys. Could be CD but he also could just have an intolerance to something.
Sorry to hear you’re no further with answers. The blood test is accurate in pointing to coeliac disease, but can be negative though rare. Was it the standard anti-TTG igA test? The anti-DGP antibodies test use to be used in pointing to CD in children. I don’t know whether this is still the case? If there is still suspicion of CD the gastroenterologist can go straight to gut biopsy.
Have you got a referral to a gastroenterologist? Assuming there are unresolved symptoms these need proper investigation and a diagnosis.
I re-read your last post. Im guessing a diagnosis of gastroenteritis was given initially? This is common and in children it can take a few hospital admissions with pain and vomiting episodes before FPIES is considered or an EGID (eosinophilic gastrointestinal disorder), for example - both allergic origin and rare that requires a knowledgeable gastroenterologist. I’m only mentioning these as there are many gastrointestinal diseases that should be ruled out.
Also, milk intolerance can be similar to gluten intolerance and cause villi blunting in children too, but usually outgrown unlike CD.
Also worth noting is that after weening and around age 5 there’s a possibility of primary lactose intolerance? Normal decline of the ability to digest milk sugar in the majority of the world’s population. Depending on genetics. Certainly consider secondary lactose intolerance too (as associated with CD and gastroenteritis).
Maybe consider the genetic test for Coeliac disease risk? Having one parent with CD would certainly increase the risk, but the genetic test can all but rule CD out. If the high risk alleles are present (DQ2, or DQ8. Newer one associated also is DQ7), then you can justify trialling a gluten elimination diet to see if this fixes things - try to get a dietitian guidance? Or at least the knowledge is there and you have justification to be monitored and periodically tested for CD? That way if it is triggered it is caught early and any complications avoided.
Hope you can figure it out and get an accurate diagnosis.
Quote from 2010 review, titled “Gluten-Sensitive Enteropathy (Celiac Disease): Controversies in Diagnosis and Classification” by Ensari, A.
“Serologic positivity usually correlates with the degree of mucosal damage, while minimal histologic lesion of intraepithelial lymphocytosis (IELosis) often presents with normal serologic findings. In parallel with this view, a previous study demonstrated that increasing titers of tTG predicted higher levels of villous flattening. Similar findings were observed in pediatric patients who had tTG levels above 100 units and showed advanced (Marsh type 3) lesions in their biopsy specimens. Taken together, these findings indicate that a negative serologic result is not sufficient to rule out GSE with a Marsh type 1 lesion.”
Full Paper link: doi.org/10.5858/134.6.826
Basically, in a symptomatic patient, with negative blood test, Coeliac disease CANNOT be ruled out without an intestinal biopsy.
The initial blood test will show a high level of antigliadin if you are producing a lot of these antibodies in response to gluten in your system. For this to happen, you have to be eating gluten, of course. It’s important to know if your nephew was eating enough gluten in the weeks before the test. Shockingly, many GPs don’t know this, but hopefully this wasn’t the case in your nephew’s experience.
Thank you all for your responses.He has now had a scan , nothing showed up, so now going down the 'functional pain' route. Apparently quite common in children. Lots of movicol, homeopath and reflexologist on board too. Off school all this week, he has missed so much school since Jan. The thinking behind this is stomach bug and norovirus on top has had negative effect on peristalsis??????
Who knows, certainly doctors have been little help. Thank goodness for Dr Google.
We will keep our fi gers crossed. It is really worrying to see him in so much pain.
”The thinking behind this is stomach bug and norovirus on top has had negative effect on peristalsis??????”
Certainly, can cause transient reduction in all the enzymes that digest carbohydrates (saccharidases, fructase (fructose), sucrase (sugar), and especially commonly lactase (lactose). Scan won’t show this unless biopsy taken to specifically measure the lactase etc. in the lab?
In case it’s helpful, Please see upto date scientific paper published in Nutrients (2022):
“Can Lactose Intolerance Be a Cause of Constipation? A Narrative Review”
🤗
Silent Coeliac Disease?
Diagnosed Coeliac & Confused
Coeliac Eliteism - who REALLY IS the most sensitive coeliac?
How long did it take for your coeliac blood tests to come back? 
