Hi,
Basically it’s a question about blood tests for coeliac disease and how effect they are? My son had them in June and it came back that he could have coeliac disease and he’s been sent for an endoscopy but with Covid that isn’t likely to happen for ages. Just wondering if these blood tests are ever wrong or if the likely hood is that he has it?
Thanks
Natalie
Hi Natalie,Sorry to hear this. It is my understanding that if he had the IgA Tissue transglutaminase antibody (shortened to tTG) it is 95% correct. However, if he had Total immunoglobulin A (IgA), I do not know and hope someone else can help you.
X
Thank you for your reply. No idea 🤷🏼♀️ what he had. Just been suffering for years with mouth ulcers (he’s 16 now) and the consultant asked for the gp’s to do some blood tests then we had a call from the doctors to say the results suggest he may have coeliac disease but can’t say anymore without an endoscopy. Just wondering if it could be wrong as we have a long wait until we finally get that done
You are welcome. Oh dear - sounds very painful. My advice, which you don’t have to take obviously, is to ring your GP practice and ask for a print out of those results which will tell you which test he had.
Just requested them now, thank you for your reply again.
My pleasure. I’m in the same position as Westie1974, I had positive test in March, I became lactose intolerant as well. (I’d kept a food diary). I haven’t eaten gluten since due to COVID. Always happy to help. 😊
How are you feeling now - on the GF diet - compared to before? And did your GP recommend that you go GF, because of Covid and no endoscopies being performed then, or did you choose to do it yourself to avoid the inevitable waiting?
I decided myself as stomach was very unhappy, couldn’t tolerate lactose or fructose (sugars of fruit)
Hi Natalie.I was exactly in the same position as your son.The blood tests I had showed celiac serology and was referred for an endoscopy but was told due to Covid just to follow gluten free diet but was then told to reintroduce gluten as the endoscopy was going ahead.So you never know hopefully the endoscopy might go ahead quicker than you think.
I am surprised they are letting him wait so long for an endoscopy.
I heard during lockdown 1 of people who were strongly suspected to be coeliac - but due to Covid weren’t able to get an endoscopy - being told to stop eating gluten rather than wait very long for a test.
The amount of gluten you need to eat while you wait is not that much. From memory it’s 2 pieces of bread a day. So if you are worried, you could always give him less gluten at one mealtime.
July I was sent the letter saying he was on the waiting list. I have called the hospital in October & they said looking at the new year before he can be seen now. His blood tests I can remember the doctor saying were only slightly elevated that’s why I wondered if they can be wrong.
There are two things in line that will tell you / his doctor whether your son has a gluten intolerance / coeliac AI condition:
1. The endoscopy
2. A GF diet
Ideally in that order.
So even if the endoscopy comes back clear, it would be wise to then try a GF diet for as many months as are recommended to double check.
And if all of these things come back clear / show no gluten causation, the doctor will need to advise you what else could possibly be causing the ulcers. I’ve known some paeds doctors be so keen to rule the obvious things in/ out but they then don’t tell you what else could be causing the problem!
Low iron / B12 / high TSH (a thyroid hormone) results and/ other low vitamin results - leading to mouth ulcers etc. - can arise as a result of the body rejecting gluten and not being able to absorb vitamins well because of gluten in the stomach (put in layman’s terms) so it is really important to rule gluten in properly before ruling it out, and not just treat the symptoms, rather than the cause.
I have been through this with my son. He has an IgA deficiency which wasn’t tested for the first two times he had a coeliac test. Did your son’s doctor check his IgA levels? It was only when a gastroenterologist mentioned that the symptoms of gluten intolerance can be more severe / akin to those of coeliac that I tried putting my son on a GF diet - he is much younger than your son but also ate a lot of gluten. Like your son, he had mouth ulcers inside his mouth and sometimes angular chelitis outside his mouth. Plus a lot of other symptoms that we only put together as being relevant once they went away on the GF diet.
Hang in there!
Hi, from experience, if anything they are ineffective at times for picking up on coeliac for those who don't produce enough antibodies. If it's showing signs of coeliac, I'd take that as a given that it is. Difficult to know how to navigate the issue with endoscopies due to Covid. Horrible waiting time for him, but he would benefit from the endoscopy for diagnosis purposes. Talk to Ceoliac UK?
My grandson was told he was gluten intolerant but my daughter didn’t want him to have the camera down the through so she decided to take him private to a clinic and he saw a dietitian, they test your allergies etc by putting these things on your toes .. they gave him a diet sheet and he followed that strictly for two months then slowly introduced back some foods ,, ever since he has been fine , I think sometimes it’s our diets so they stripped him down to the bare essentials and he is good , so instead of waiting there are things you can do yourself like note things that he reacts to and eliminate it and hopefully you can succeed
Do you know what his result was? The tests aren't the most reliable, which is why they confirm with a biopsy. The higher the number on the test, the less likely it is to be wrong though. For example, they can diagnose on blood test alone if the result is >100, or with children some doctors will diagnose if the result is >70.
Waiting lists for biopsy were often around 6 months before Covid (depending on your health board), so I'd use that as your guide for how long you'll have to wait.
I’ve requested the results from my GP but I do remember him saying they should be less than 20 & he was 40 so only just above. He has a few of the symptoms but not many. He does eat an awful lot of gluten though! 😬
Everyone presents differently - my partner is the coeliac in our household, and he had no major symptoms before being tested, he just found pizza didn't agree with him. His GP didn't want to do the test based on his symptoms, but it turned out he was quite poorly and had just learned to function with it.
My partner finds mouth ulcers are a symptom of low B12 (not even deficient, just low in the range), so that might be worth supplementing. Your son's gastroenterologist will test vitamin D, B12, ferritin and folate before the biopsy, so you might be better waiting until after those tests though.
In terms of the coeliac test, they test tops out at 128, and I think a negative test is <11, borderline is 4-10, so it sounds like your son had a moderately positive test result.
Thank you for your reply. Is B12 something to do with folic acid? He was given folic acid tablets after the blood results also but his ulcers are worse than ever, struggles to eat some days.
No, Folic Acid is B9 I think, it would mean his folate was low (which is common with autoimmune disease).
If they tested B9, I'm guessing they tested B12 too - it's worth double checking. I find the levels the doctor considers deficient are too low for me to feel well though, so I tend to top up B12 if my test result is below about 350.
There's pretty much no risk of overdosing on B12, so it could be worth supplementing him anyway, just to see if it helps.
Extensive blood work is how my Celiac was detected, 10 years ago. I never had an endoscopy done, just went gluten free. Later, I diagnosed myself with the Celiac skin disorder, Dermatitis Herpetiformis, and went grain free. No biopsy done. My health has done a 180.
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