I have just been told that my blood test has shown a ‘weak positive’ for coeliac disease. The test says:
! Tissu transglutaminase IgA lev - (CHEN) - 167.7 CU
Endomysial antibody IgA level (CHEN) - weak positive
I’ve now been referred for an endoscopy. From what the GP said it appears I may be the first of her referrals to come back not negative so she was reading from her guidelines.
Can anyone explain what this actually means and does it mean I am definite coeliac or it’s still just a slight possibility? All information will be gratefully received.
Thanks
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isalou
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My Tissu transglutaminase IgA lev was measured in U/mL where the range was 0.10 - 3.5 U/mL. My result at 43 being > 10x range was automatically positive.
Different labs have different equipment and different ranges....so impossible to get any answers when googling.
I was dx in Nov 2020 and have done quite a lot of reading - apparently the blood tests are not always accurate, so a weakly positive blood test can prove negative at biopsy. Unfortunately, you've just got to wait, which is really cr@ppy.
If not already done, ask your GP for blood test for Iron, Folate, Calcium, B12 and Vit D - no sense in waiting the 6 weeks until after biopsy.
The GP called yesterday with the results of the initial bloods and then got me in for the extra bloods you mention so that’s good. I will just wait patiently now for the next stage.
My take on gluten is, if in doubt, try going gluten free and see how you feel. If you feel better having removed it you have your answer. If you want to double test introduce it back and see what happens. I've never been tested but felt significantly better when I went gluten free, and then really noticed when I introduced it back (by mistake I might add). It really sucks going gluten free but in my case it was worth it. Now I am so used to it I don't even really miss it that much.
I had tests due to one minor niggling issue. I don’t have many ‘traditional’ coeliac symptoms. So, as understand it, this could be slightly dangerous route to take as my bloating maybe something else so I won’t feel better however I might have coeliac disease and continue to do more damage to myself. I hear what you are saying however I think it will be much safer to do this under the guidance of an expert.
Question and answer section on coeliac disease test, anti tissue transglutaminase igA can be weak positive or negative in people with coeliac that are also igA deficient. The EMA antibody then tested for. If positive likely have coeliac disease. Your GP right to refer you for endoscopy as that’s the gold standard for definite diagnoses. You likely have coeliac disease or at high risk of it developing.
You do right to get diagnosed officially before changing your diet. And if your symptoms are bearable eat as much gluten foods as you can before the endoscopy you want it to be accurate.
Hope you get a clear answer.
If you don’t mind me asking, do you have any gut symptoms?
Personally, my gut symptoms are bloating and distension. I’ve been gluten free for over 10years. Done a gluten challenge a few years ago which was hard going after not eating gluten, negative coeliac blood test but went back gluten free because felt better not eating wheat barley rye and intolerance testing showed igG antibodies to gluten (gliadin) as well as milk and egg. Since found out have allergy to milk (igE) which gave me an answer I was looking for. I’m a scientist and meticulously trialed different dietary approaches paleo, low FODMAP etc. I’m currently on my second gluten challenge to rule out coeliac disease once and for all.
You do right to find out if it’s coeliac disease for certain in order to protect your health in the future. Undiagnosed coeliac can lead to health complications.
Think of the weak positive antibodies as a blessing and a curse. You likely have coeliac disease and have the opportunity to protect your health sooner rather than later.
Thank you so much. Originally I went to the Doctor as I have bloating. I am almost 50 and have been suffering with bloating for some time now. Last year I was sent for an ultrasound scan which was clear and no more was done. More recently the bloating seems to get worse overnight whereas previously it used to improve by the morning. Having read an article about ovarian cancer I thought I should speak to doctor again. Fortunately the blood test for ovarian cancer appears ok but she also tested for coeliac hence I’m now where I am. So, although it’s the bloating which had prompted me I have had IBS for years & have learnt to live with it.
Therefore, yes I have got gut problems but I’m definitely not underweight, in fact I’ve out on weight over the past couple of years. To be honest I had no understanding of what coeliac really was until the call from the doctor on Monday making me do some quick research.
Thanks again for your reply. Good luck with your gluten challenge.
(The link you posted didn’t work for me by the way)
I put on a bit of weight in the 6 months prior to diagnosis - I think it was my body's way of trying to get more nutrients. If I didn't eat every few hours I'd get 'hangry'.
Thanks. Sorry link didn’t work. It’s labtestsonline dot org dot uk if put into google. Then search coeliac.
Hope you get a definite answer. Let us know how it goes.
I struggled to gain weight so the opposite lol. Though doing the gluten challenge and eating wheat biscuits have gained a couple pounds! I normally follow a low carb lifestyle so probably the increase in carbohydrates.
I've found labtestsonline really useful too. Wow...weetabix - that is very impressive. You must feel incredibly cr@ppy. I hope that you get an answer - good luck, and I wish you well.
I tested negative for coeliac in 2007 (tested due to Hashi's dx, not because of gut symptoms), had an endoscope in 2010, although that was due to severe reflux, it didn't show anything. Positive Nov 2020.
Have you seen the Sheffield University/Coeliac UK video where they are talking about how they have seen similar brain impact in coeliac and gluten intolerance?
Thanks. Your timeline in health is interesting and I wish you well also.Ive heard about Hashimotos, and coeliac disease going hand in hand. Pernicious anaemia too (which my grandmother had).
I wonder if it takes quite a while before enough damage is done that leads to high enough antibodies show up to lead to diagnosis?
Crappy yes lol. I wonder why I decided to do a gluten challenge again!?My moods lol. I get the hangry. Fed up of the bloating and ibs. And had two mouth sores that haven’t had in years plus a couple of migraines. I’m definitely sensitive to gluten containing foods.
Thanks for sharing. I immediately looked up the Sheffield University on Coeliac UK. It’s interesting the gluten sensitivity spectrum of disorders isn’t it? I was aware of the coeliac research centre there. They’re the ones who have discovered the igG6 antibody for gluten intolerance and the brain in coeliacs and non-coeliac gluten sensitivity. Really interesting thanks.
I had a lot of migraines, sometimes daily for the 1st couple of years after Hashi's ,,,,,,, as meds were increased they stopped, none with coeliac. I did have signs of early dementia with coeliac which I believe was result of- vit D, B12, Iron and folate were either deficient or close as.
Mouth sores.........Iron deficient? or allergy to wheat? Have you had FBC and Ferritin checked?
I have noticed that the past few days I have stopped getting hangry, which is great because I found it annoying let alone the poor people around me😖
Many thanks. Lol to hangry if I don’t eat I’m terrible mood.
I had FBC and thyroid checked. GP said ok but TSH borderline high and T4 normal. Didn’t seem bothered.
Iron ok but borderline for B12 folate. Suggested supplement.
This was done 2 weeks into eating gluten again after years gluten free (not strict about cross contamination though!). the nurse taking the blood seemed concerned about thyroid too. I have to take iron supplement for heavy periods (I’m 39) and seem to always lack energy and mental fatigue.
Started taking b complex a month ago and it’s helped my energy and focus a lot I have to say. But I don’t know whether it’s that or giving up cows milk too as tested positive for milk allergy igE after years of mild symptoms including ibs constipation. Partly why thought best to do another gluten challenge. In case the dairy all along and not the wheat.
Which makes me wonder now about wheat allergy as you mention.
I’m allergic to egg yolk too ok if it’s baked and well cooked though. It’s related to my asthma.
I’m definitely sensitive to wheat barley rye foods though. So will definitely be going gluten free again as soon as!
"I had FBC and thyroid checked. GP said ok but TSH borderline high and T4 normal. Didn’t seem bothered." Have you looked at the actual results yourself, or just trusting your GP? GP's idea's of borderline high TSH or normal T4 can vary wildly. A good GP should re-test in 3 months, and go from there.
From what you have said I'm guessing that your GP just looked at your FBC ie MCV at high end of range indicates either Folate or B12 deficient so advise patient to supplement (fair enough if you don't have PA). I think Iron is a bit more difficult - Haemoglobin will mostly be within range, unless Ferritin is completely depleted - doesn't mean you don't need more iron.
I think the big advantages to being dx coeliac as opposed to gluten sensitive/intolerant are 1. You won't be tempted at all, and 2. The British Society of Gastroenterologists recommend the following annual blood tests;-
full blood count,
ferritin,
serum folate,
vitamin B12,
calcium,
alkaline phosphatase
associated autoimmune conditions (thyroid-stimulating hormone and thyroid hormone(s),
and serum glucose),146 147
liver disease (aspartate aminotransferase/alanine aminotransferase)40 and
dietary adherence (anti-TG2 or EMA/DGP), although the sensitivity and specificity of the latter cannot substitute for structured dietary interview.
Many thanks 🙂 helpful info. and sounds about right regards FBC.
My TSH was 5.1 and T4 was 14.
From what I’ve researched and you’ve said im a little concerned and especially given some of the symptoms of hypothyroidism. But normal weight low bmi (tho gained a few pounds since eating wheat).
GP basically said fine and that was it. Wasn’t impressed to be honest because I said maternal grandmother had to have B12 shots.
But given the COVID situation, I feel reluctant to push further. apart from coeliac disease blood test.
Totally agree with the advantages you list and why I want to know for certain.
I would definitely ask for TFT re-test in 3 months - maybe it will right itself ( that happens ) - if it goes the wrong way you are going to feel it - you are probably already feeling it - it creeps up slowly.
I put on about 2st during the time that my levo was being increased (too slowly, but what did I know)- lost it over the next couple of years and BMI is slap bang in the middle again. My daughter lost a lot of weight prior to Hashi's dx - it's quite common for the thyroid to have a fit or 2 before it gives up the ghost.
I think I'd try and speak to a different GP next time. Not impressed either. I know the PA test isn't reliable, but either test or prescribe, or at least test again to see if recommended supplements are being absorbed. As far as underactive thyroid is concerned I think the biggest reason for keeping an eye on it is cholesterol - I don't think there is any excuse for not doing so.
My B12 was 284 (range 211-911) so..... low. but in range. Folate 2.3 (range 3.4 -12.2), the GP that I spoke to didn't suggest testing for PA but prescribed B12 jabs 1 every 3 wks for 3 months, then every 12 weeks going forward - also folic acid for 2 months. I'm due to get re-tested next week, and will then get myself a B-Complex because I expect Folate will be just in range. If they decide that they want to stop my jabs there will be a discussion.
My vit D was 22-GP initially suggested that I supplement with 1,000iu😂. We then spoke bout Nice guidelines, and I was prescribed 40,000iu per wk for 7 wks. Iron has been put on repeat - not looking forward to taking that for a long period.
Godd luck with your coeliac test, and let us know how you fare. The British Society of Gastroenterologists have guidelines re diagnostic/management coeliac:-
Many thanks to you.I will follow up with different GP regards Thyroid, see how coeliac blood test goes first.
You’re right I never really considered thyroid as an issue but now I’m concerned. Thanks for the info. You said your daughter lost a lot of weight before diagnosed. I have struggled with my weight to put it on healthily. I was underweight a couple years ago without trying but put it down to the stress of doing a postgraduate degree. The mental fatigue was bad then too. Thyroid could explain a few symptoms if it’s that. And being gluten free for years but gradually getting more fatigued, menstrual problems. But the B complex liquid seems to be really helping.
I was just re reading your reply and this stood out if you don’t mind me asking you what you meant by keeping an eye on cholesterol in relation to thyroid health?
“As far as underactive thyroid is concerned I think the biggest reason for keeping an eye on it is cholesterol - I don't think there is any excuse for not doing so.”
It’s small dense particle LDL need to worry about which too much sugar causes. High total cholesterol is healthy the older we get as long as the ratio is high HDL and large particle LDL.
This review of research was very interesting on cholesterol and heart health in the British Medical Journal,
‘Lack of an association or an inverse association between low-density-lipoprotein cholesterol and mortality in the elderly: a systematic review’ BMJ 2016.
I think the point I was trying to make is don't let them put you on statins without checking thyroid function. Cholesterol rises with underactive thyroid - probably something to do with metabolism and everything slowing down - although I could be totally wrong.
Interesting would make sense to do with metabolism 👍 .
Gluten challenge going ok but the longer the more I think the gluten having an affect on me. Feeling blarr 🥴 lol thanks for asking hope you’re doing ok
My gut is sooo much better thank you. I got my vits/mins re-tested this week and they're all unexpectedly really good so I can stop the heavy supplements (iron tablets..urgh) and move onto low dose more natural kinder supplements - and maybe even stop in a few months.😀
Hi isalou, My advice would be to continue eating gluten until all the blood tests, endoscopies etc have been completed and the results found because stopping gluten too soon can have a profound effect on the outcome of any tests. My symptoms began with skin problems, my son's began with bowel problems, we are all different, if you prove to be Coeliac encourage close family to get tested also. Good luck. Take care and keep safe. Ruth
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