Last Autumn, I had some blood tests done, one of which was a coeliac panel. I was not prepared and had not eaten any gluten for months. This test came back as tTGa 3.3. A negative test.
Two weeks ago, I had another coeliac panel done, and this time I had been eating rye and barley which I tolerate reasonably well. This time it tTGa came back as 0.5, which although just within range, is significantly diminished since the previous test. Does this warrant further investigation? My GP says I do not have coeliac disease on the basis of this second test. What do I do know?
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BabsyWabsy
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I think it probably depends on how long you had been eating the barley and rye, prior to getting your coeliac ttg test. In the UK, I believe it is recommended that you eat gluten for at least once a day for six weeks prior to testing.
It could also be that you do not have coeliac disease, but perhaps have a non-Coeliac gluten intolerance instead.
there are a growing number of people, myself included, who are not coeliacs but are sensitive/intolerant of wheat. My understanding is that this is because wheat has been breed to such an extent that it no longer bears any resemblance to the grains we ate even 70 years ago and is no longer recognised by are bodies as food. The wheat my neighbour grows is only a foot high! I have read of several farmers who could no longer eat grain so experimented with growing and grinding ancient grain for themselves and had no problems digesting it. Not all progress is good progress. One of the few grains not played with has been oats and I can eat oats, fortunately thay grow well in cold damp climates like Scotland and the north of England 😉. Fun fact.. oats don’t need the tonnes of fertiliser that wheat does. What’s not to like about them?
Thanks Arthrath, you are right. Wheat has been modified to allow for the quicker fermentation process of the Chorleywood bread making method (early 60's) which compressed the manufacturing time from several hours to about 45 minutes. It is a strange coincidence that so many people of my generation have got similar gut issues. As it happens, my acute issues started in 2014 after a bout of noro virus due to raw oyster, and shortly afterwards, a 6 week period as interim quality manager in a large bakery. This involved tasting every single product from the previous 24 hours production, so doughnuts, pies, baguettes, bread rolls for breakfast at 8.0 am every day. Combine this with working in the factory where wheat dust was circulating in the air, and we have a perfect storm. Breathing in an allergen is a very effective way of creating an allergic response. My official diagnosis was IBS, then wheat allergy, then microscopic colitis. All three of these are sometimes found to be misdiagnosed coeliac. I'm fine with oats, as long as they are uncontaminated by wheat. Same for barley. I have a good friend who grows malting barley commercially, I have no issues with it. The reason for my post was my first coeliac panel was unexpected, I was not eating gluten. My level was tested as 3.3.tTg Because of this, I asked for a retest so that I could load up with gluten. The retest came in a 0.5 tTg which is the bottom end of normal ranges. Which to me suggest some correlation between gluten consumed and the second test result.
Thanks Regalbirdy. After an unexpected test in September, I made an effort to try and consume gluten twice a day, having requested a retest. Due to circumstances beyond my control, the repeat sample was not taken until 30th Jan. Admittedly, I occasionally lapsed, I got so fed up of rye crispbreads. But my point is, at the first test, I was gluten free, at the second one, I was not gluten free and there appears to me to be significant differences between the test results. I don't think the GP looked at the previous test.
If you know that you benefit from going gluten free, then eat a gluten free diet. After all, this is the same main treatment for those who have Coeliac Disease!
And you have done it the correct way around by taking formal medical advice first. It’s now your choice.
Please read up to ensure that you know how to correctly balance your vitamin and mineral needs though. Gluten free foods aren’t supplemented in the same way as gluten foods.
Thanks RB. I think I will do some research, get my ducks in a row and open yet another conversation with the GP, who has been very good. I have even seen him in person a couple of times!
Glad to hear you got through the challenge and tested for Coeliac Disease again. Your GP is correct that Coeliac unlikely with those numbers, especially it going down after eating gluten containing food.
Assuming that you tolerate barley and rye and have no coeliac symptoms then it likely your wheat allergy is the issue.
If you do have symptoms still it might be worth a genetic test to rule the possibility of coeliac in or out. Also to determine your risk?
That’s what I’m waiting on still. I did a gluten challenge (dietician advised) and igA ttg only slightly went up from 3.1 to 3.4. As I was suffering terrible coeliac like symptoms especially sickness and diarrhoea I was told it wasn’t conclusive and could stop eating gluten if I felt better.
I’ve been researching the scientific literature regarding the genes associated with coeliac. What’s very interesting is the majority with coeliac and those at high risk of developing it have DQ2.5. Lower risk with DQ8 and DQ2.2.
I also read some research about the different gluten peptides involved in coeliac immunity relating to the different genes. It’s quite complicated reading but the nerd finds it fascinating 🧐. If you’re interested I will find the references and link them?
You might be interested to know that apparently the toxic gluten peptides involved for someone with say DQ2.5 compared to DQ2.2 and DQ8 varies. Also the latest research is also focusing on Amylase Trypsin Inhibitors and they’re role in intestinal inflammation as well as extra intestinal inflammation particularly non coeliac wheat intolerance - another possibility.
ATIs have the most bioactivity in wheat, followed by rye and barley grains, followed by soya, buckwheat etc, with about 20% the bioactivity of wheat, followed by oats (10%), followed by gluten free corn, rice, potatoes (2% bioactivity or less).
From my understanding according to one set of bio research - to date - wheat only derived gluten peptides may be toxic for some coeliacs - DQ2.2 if I recall correctly. And if I recall correctly DQ8 related gluten peptides - to date - are wheat and rye. DQ2.5 a lot of peptides toxic from wheat barley rye. Also oats potentially. There’s fascinating research being done regards this and there’s still a lot to be researched. Like the alpha gliadins, and especially the most toxic gluten peptide labelled 33mer is derived from the D genome of modern hexaploid bread wheat.
Sorry if this is a long reply!
I wonder did you completely avoid wheat and just have rye and barley on the gluten challenge? The other thing that comes to mind is whether it was sufficient exposure to gluten peptides for accurate coeliac testing as barley and rye contain a lot less toxic gluten peptides compared to wheat. As well as what mentioned above re the different genes associated with different gluten peptides.
I hope that makes sense!
But at the end of the day if you feel better wheat and or gluten free then that’s the answer!
Thankyou Researchfan, I was hoping one of you really knowledgeable people would respond. Goodness me it is complicated. I stuck to rye and barley, but may not have consumed enough given that it is less potent than wheat. Any wheat or wheat derivative makes me very unwell. Spelt was OK, but now I get bloated. What I would like to know is why, when I had been gluten free, was my September result so much higher than my February result when I know I had been consuming gluten? I have another appt on 9th March to discuss, because although both results are 'normal', there is a big difference. Would I be right in expecting the February result to be higher than the September one or lower? I do enjoy a comprehensive response, so don't worry about it being long. It is very much appreciated. I am trying to understand what is going on. I have had three diagnoses over a few years, IBS, wheat allergy and microscopic colitis, all of which can be misdiagnosed coeliac, for which I have many typical symptoms. So, it is possible that I may be reacting to a specific peptide or gliadin? I have not knowingly consumed modern bread wheat for years, but had a severe reaction to a supposedly gluten free meal in a restaurant back on September 22nd, but that was a week after the initial test, so no explanation there. Meanwhile, I will continue to eat (more) rye and barley on the off chance that I am offered further testing or a referral. I am sure my GP thinks I am barking, either mad, or up the wrong tree! I also wonder, if I was a man, if I would not have needed to be so persistent. I was first offered a coeliac panel in 2017, but by that time, I hadn't been eating wheat for months because I worked out by a process of elimination that, was causing a problem, so declined it. Six years later we are no further forward.
Glad you’ve got a follow up appointment. Don’t worry what your GP thinks, your health’s important and I’m sure they don’t think you’re mad! I use to worry like that but luckily the GP I last had an appointment with was young, interested and reassuring. Yes I’ve thought in the past where blokes get treated better!
Regarding your blood test result after the challenge compared to before, that’s interesting and I agree that I would have expected the value to stay the same or rise. I read that the performance of the test is dependent on the level of damage in the gut. So your test suggests very little gut damage. I would suggest that your gut health improved between testing but I’m no expert. Ive also read that in mild coeliac disease the test can be less accurate.
May also be worth noting that while the anti ttg antibodies are sensitive and specific to help diagnose coeliac disease they can appear in non coeliac conditions that affect mucosa (IBD, type 1 diabetes, rheumatoid arthritis joint mucosa, milk-protein induced enteropathy). Microscopic colitis is an IBD? Might even be possible the gut infection caused gut damage which raised the anti ttg antibodies but transiently. A gastroenterologist would be able to answer this for certain!
I still wouldn’t rule coeliac disease out as a possibility, unless negative for associated genes, and especially given the fact that wheat makes you ill.
Have you igE antibodies to wheat suggestive of allergy?
Then there’s Wheat only peptides not rye or barley that affect coeliac disease patients carrying the DQ2.2 (rarer) gene that’s classed as lower risk for developing coeliac.
Thanks again Researchfan, you are a mine of information. Yes, microscopic colitis is the most benign of the inflammatory bowel diseases. (!)It is not listed as one of my long term conditions because the practice only monitors these: 'Asthma, COPD, Diabetes, Pre-Diabetes and heart disease, including Hypertension.' Therefore, there is no process to review people with gut issues, which in my age group is incredibly common. Last week, I had an asthma review with the most senior practice nurse and while we were chatting, I asked her about my coeliac results. She said she knew nothing about coeliac disease. It was one of the other practice nurses who started the coeliac ball rolling, but then took a blood sample, knowing I had not been eating gluten. I am beginning to think that a referral might be the best option. No, I haven't had igE antibodies tested, the diagnosis was made after trial and error by me. That might be another thing to ask for. I really appreciate your input.
If you click Food Issues on the left menu, there’s wheat allergy and intolerance information/case studies.
If you can get a blood test for specific igE wheat antibodies it might be useful. If positive showing sensitisation to wheat, and with your history/own work of trial and error reactions to wheat, would confirm the allergy.
If negative it doesn’t rule out allergic disease. It just rules out an immediate type reaction and risk of severe reaction. Delayed type non igE hypersensitivity or cell-mediated reaction then a possibility. Elimination and reintroduction diet confirms this type of allergy. Which you’ve done already. Coeliac disease is also named a delayed type 4 hypersensitivity, if I recall correctly.
The fact you have asthma may also be a clue! As that increases risk for food allergies later in life.
Personally I had severe asthma diagnosed as a child, exercise induced. It got better in my 20s, but the digestive issues started. I would need a time machine to prove it but thats when I changed my diet. I went wheat/gluten free before I knew about coeliac disease to help the bloating etc.
A few years ago I paid for an igE test with York and it was positive for wheat. My GP accepted it and said no point them repeating the test. However it could be resolved allergy from childhood. I was allergic to milk and eggs (would vomit). I only know now that my asthma may have possibly been a wheat allergy. When I was little I was fussy and refused to eat bread believe it or not.
Keep following your gut instinct, no pun intended, in order to get the answers you want. I think on a deep down level we know. There’s so much information and research ongoing re coeliac and the gluten related disorders wheat allergy, coeliac disease, non-coeliac wheat/gluten sensitivity. Hopefully the health service catches up with the science.
My general blood results are really good, because I am aware of my rapid transit and take appropriate supplements, as well as eating a good diet, so do not have the typical deficiencies you might see in someone with coeliac disease.
I’m not going to give scientific quotes, however I had a fair few blood tests that revealed nothing over a 10 year period. I finally had an endoscopy which showed Villi damage. I think I read recently that the need for an endoscopy may be scrapped and that they’ll act on bloods - don’t quote me on that, but if you’re doing a gluten challenge I think you’d need to consume more than you did prior to this blood test. I also found GP’s were generally poor in diagnosing Coeliac disease or ignorant of it. Just my tuppence worth. Been diagnosed 10 years now and it’s likely I’ve had it most of my life and I’m 67 now.
Thanks Happerstad, that is really helpful. I have heard they are trying to do away with invasive testing. (Too expensive?)That could mean even fewer people have an accurate dx. My GP practice is poor on any gut issues. I may ask for a referal.
the endoscopy takes a biopsy and that will show yes or no the best thing is to ask your doctor and they will explain it to you. Blood tests on there own are no good. good luck. Oh how I know is , My wife has been coeliac for many years and we have to have two toasters because if a piece of normal bread is in one side of the toaster and coeliac in the other side it may be ok the first time but next time the coeliac bread can get contaminated even frying things be carful not to use the same fryer for both normal and coeliac food good luck Tom
Oh, I understand what you are on about now. I have a doc appointment on 8th March, expecting to be referred for an endoscopy. We also have his and hers toaster, and butter. When I cook, it is always gluten free.
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