I have recently discovered this forum and have found the discussions both helpful and informative. Many contributors use the effect of eating gluten to conclude that this or that food isn`t doing them any good. Perfectly acceptable as the body is communicating its message that gluten is harmful. My issue is that I am asymptomatic and therefore feel perfectly healthy if I eat gluten. However I know (from a biopsy) that my small intestine doesn`t like it. The temptation for me is that I may be able to eat say oats or barley malt extract without any adverse effect on my intestine. I have three questions I`d appreciate any comments on or links to answers:
1. Does anyone know of any research that confirms, one way or another, the effect on asymptomatic coeliacs if they eat this type of food (e.g. oats, plain crisps)?
2. Also are there any other asymptomatic coeliacs out there wondering the same thing and can add to a debate?
3. Finally my consultant can`t explain why some coeliacs are asymptomatic and others not. Does anyone know why this is the case?
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SilverDreamMachine
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Like you I would describe myself as asymptomatic and have been gf for only about 6 weeks once I'd received my biopsy confirmation.
I too find this forum useful and informative but find it hard to relate to some of the comments from people who seem to be very sensitive. I've wondered how many visitors to this site are also asymptomatic but do not feel able to contribute or even simply stop visiting the site because they are unable to relate to descriptions of extreme adverse reactions?
I'll give you my answers to your questions as best I can but I'm certain there are others more knowledgeable than I.
I don't know of any research into effects on asymptomatic or even symptomatic coeliacs The only comment that recurs on different threads is that damage can be silent [to villi] and that's something that can only be answered by regular and [expensive] gut biopsies. So in the absence of any symptoms which can be seen to be improving, asymptomatics just don't know. This is where I struggle to get my head around the whole issue.
Like you I've had no clarification about why some people are asymptomatic and others not other than the standard "Well all people react differently". I'm really not knocking the system or consultants or dietitians for this response - they just don't know. I straight out asked "How do I monitor myself when I have no symptoms?". The almost apologetic reply was " Yes it is difficult".
Whilst I can empathise with ultra sensitive coeliacs who evidently suffer more than you or I it would be interesting to find out how many others there are like us.
I was diagnosed 22 years ago, and apart from the very occasional minor 'icky tummy' remain, fortunately, asymptomatic. So when reading this forum have been surprised at other Coeliac's extreme reaction to apparently minuscule amounts of gluten, as I am able to eat 'free from' foods as well as oats with no problem at all. After my initial diagnostic biopsy confirming CD I have had two further biopsies, which were reported as normal, so it would appear there was no harm done in spite of eating oats etc. As you can imagine I was very interested to see that there are others like me who experience few if any symptoms of being 'glutened'. However, I do stick to my GF diet as prior to my diagnosis I felt very unwell indeed and don't want to risk feeling like that again!
I too have very few Gastro symptoms and it was only after 2 years yo-yo'ing backwards and forwards to the doctors complaining of having no energy that I was diagnosed. I did then make a link to some bloating but nothing alarming like some others on GFG.
I stick to the diet now and have steered clear of Oats too as I don't know what effect it's having on the inside. It was interesting to read Adnil's post that after eating Oats a further biopsy showed no issues! I wonder if this would be the same for all asymptomatic sufferers?
Thanks to Adnil and ianwoowoo - and to SilverDreamMachine for starting the question. I was beginning to wonder whether it was just me! I can also recognise the comment that although generally asymptomatic, once diagnosed and gf I started to think about symptoms and question whether the extra trip to the loo was really down to that curry last night or feeling tired was due that final pint of beer.
So far [6 weeks gf] I've not had any severe reactions to being glutened so I guess I'm doing something right. I'm avoiding the obvious and reading labels and have my own toaster but I've no idea if the Codex is affecting my villi or if I'm inadvertently eating something wrong but not reacting.
But I guess I am grateful that I'm not super sensitive and will carry on the diet.
Thanks so much for raising this useful question about asymptomatic coeliacs. Often when newbie coeliacs join this forum they are keen to discuss their problems and understandably assume that the issues they are experiencing are all down to being glutened, as they begin to find their way on their gluten free journey. Therefore there can often be a lot of questions about food and illness that dominate threads on this forum, as it often does on many other coeliac forums. Sometimes there is tendency to blame everything on gluten - yet many coeliacs actually have problems with FODMAPs, gluten free grains, lactose, dairy, sugars, high fibre products etc.
There are also a number of established long term coeliacs who have taken a route of zero gluten for their health issues and adopted a naturally gluten free diet and shunned eating out or processed foods. They have found this the best approach for them over time. So I can understand that it can be hard for asymptomatic coeliacs to find a place between these two 'camps'. As Boxer says such discussions can be off putting for asymptomatic coeliacs who don't appear to get instant reactions if they are glutened. They can feel isolated and like they don't fit the traditional 'coeliac' model.
Background:
I thought it would be useful for you to know that we have raised this topic before and that I myself am an asymptomatic coeliac. One of the reasons I founded Gluten Free Guerrillas was that I had never heard of coeliac disease before I was diagnosed and was stunned by the 'usual coeliac symptoms' which didn't fit myself. I heeded my Doctor's advice after my diagnosis and got my sister to get tested and she was also confirmed as a coeliac - despite us having similar genes but very different symptoms. I went to the Doctor's as I was tired all the time, the tube journey to and from work was a chance for me to get at least another 45 mins sleep each way. I had recurrent eczema, psoriasis, yeast infections and generally caught every cold or illness going. The main reason I visited the Doctor was because I had nausea every morning - like jet lag crossed with sea sickness and I felt dizzy, as if the floor was shifting from under me. I simply thought I had an inner eat infection. But I had no bowel problems, no bloating and indeed loved my pints of Guinness. Being diagnosed was a shock and changed that small enjoyment. My sister had regular headaches, was diagnosed with juvenile arthritis out of the blue in her 20s, had recurrent urinary track infections, tonsillitis at least twice a year, lost her voice for 6 mths, was tired all the time, gained weight and couldn't lose it, we were beginning to think of her as a walking hypochondriac as she caught one cold after the other.
Yet what we both had in common at diagnosis like so many other 'silent' coeliacs was: severe iron and vitamin D deficiency, low B12 and low calcium - all of which are alerts to Doctors to consider coeliac disease. Unfortunately for my sister as she was a true lover of gluten - despite being diagnosed at a younger age than myself she had higher ttg anti-body levels and was diagnosed a year later with Hashimotos Thyroid as well. Sadly it seemed the coeliac damage had trigger the 2nd auto-immune disease in her.
My view:
My personal view is that it's divisive to the coeliac community to discuss terms like 'super sensitive coeliac' or 'silent' coeliac as they are crude descriptions. Yet I am aware that members on our site like to use them. They can begin to make being a coeliac sound like some X-Factor style competition in which each coeliac has to trump the other with their symptoms and woes. The bottom line is that ALL coeliacs experience villi and stomach damage if they ingest gluten whether they are aware of it and experience glutening symptoms or not. What should also be remembered is that for many of us asymptomatic coeliacs we do experience symptoms if we digest gluten - they are just more subtle than some other coeliacs. For example think back to your health problems, mood levels or energy before diagnosis. Now think back to a time when you know you ate something with gluten in after diagnosis - how did you feel? Did you get a flare up of some of these old symptoms? I know in myself that the longer I avoid gluten the more severe my reactions to it becomes, but they tend to mimic old complaints I had before i.e. eczema flare ups, extreme hangover style tiredness, mood swings. Often it's only with hindsight that you can begin to join the dots.
In terms of your questions:
1. Does anyone know of any research that confirms, one way or another, the effect on asymptomatic coeliacs if they eat this type of food (e.g. oats, plain crisps)?
We've seen a variety of links that confirm that asymptomatic coeliacs will experience villi damage due to gluten just as coeliacs who experience immediate reactions would. We've also seen some research before - although couldn't locate it at the moment, that links asymptomatic symptoms with severe villious atrophy at diagnosis. Perhaps this is due to not feeling severely unwell and continuing to go undiagnosed for longer than some other coeliacs who experience obvious symptoms.
Here are some research links on this topic that you may find interesting:
Should Patients With Asymptomatic Celiac Disease Forgo Gluten?
These are only a small a selection of the many research papers on this topic.
2. Also are there any other asymptomatic coeliacs out there wondering the same thing and can add to a debate?
It is frustrating that so little is discussed by coeliac societies around the world about asymptomatic coeliacs. However, this is largely for PR reasons - as it would be hard to gain press coverage if the message was people had an auto-immune disease that could lead to many dangerous cancers in the first few years, but that didn't normally kill you itself and which didn't have any clear symptoms. In fact the common symptom of coeliac disease time and time again across research papers and polls is that 'extreme tiredness' is cited as a common symptom. However, this is also a symptom of many other auto-immune diseases. Given that the general message from worldwide coeliac societies is that 1% of people are diagnosed with coeliac disease yet at least 75% have it but are unaware of it we'd love to see childhood screening, (as they do in Italy), better diagnosis, (as in Sweden) and for coeliac blood tests to be as common as popping into your local pharmacy for a diabetes blood test. Perhaps then we would be able to screen and diagnose more asymptomatic people earlier and prevent them experiencing permanent health damage, other auto-immune diseases, ill health and associated coeliac cancers. Then if there are more people diagnosed there would be a greater demand for the GF lifestyle and provision e.g. so taking a long train journey won't require packing a bag full of GF food. Instead saying you're a coeliac may one day be as normal and well understood as saying you're a vegetarian.
Codex wheat starch:
This can cause problems for some coeliacs. For coeliacs that get severe reactions to gluten they report that codex products can make them feel ill and experience glutened symptoms and bowel problems. In truth I've generally avoided these products just to be on the safe side. I also avoid oats again to be safe as even GF oats contain avenin a protein which is very similar to the proteins in other 'gluten' containing grains. Health advice is that coeliacs should only eat a small amount of GF oats a day and be monitored (i.e. via ttg blood tests) after to assess if they have responded badly to the oats. In theory this sounds find but in the cash strapped NHS trying to get your GP to monitor this is hard.
In reality I avoid oats, codex wheat starch, barley malt, malt vinegar, any products made on line containing wheat and any items labelled 'no gluten containing ingredients' (try looking that up on the FSA website and you will what a nonsence non legal label that is!). Why do I do this despite not having obvious glutening symptoms? Perhaps I'm too logical. But for me I don't see the point in taking the risk of eating things derived from gluten or processed on a line with gluten as there is a risk they will damage me. I'm pretty an all or nothing person - so sticking to the GF diet I do as fully as possible and I grill every food manager nicely with 101 questions when I eat out, and cultivate local food places so they see the repeat custom from their efforts and that coeliacs can enhance their business.
Keeping up the GF diet can be especially hard for asymptomatic coeliacs as there's no obvious reward / punishment for straying off the gluten free wagon. Apart from the logical side of your head that tells you it's damaging your body. Really all you can do is stick to the diet as best you can in the belief that although you don't experience the dramatic glutening symptoms that some other coeliacs may upon ingesting gluten, you are giving your body the best chance of recovery and a healthy lifestyle. The risk of infertility, osteoporosis, other auto-immune diseases, numerous cancers alone should help to be a reminder on days when it seems hard work for little reward that it's worth continuing.
And of course a regular yearly check up with your GP/ Hospital Gastro will give you some reassurance as to your vitamin / mineral levels and ttg anti-bodies to gluten i.e. that will help you assess that you're sticking to the diet and not taking any gluten in via hidden forms.
3. Finally my consultant can`t explain why some coeliacs are asymptomatic and others not. Does anyone know why this is the case?
We don't know why this is the case but have a strong hunch that it's largely due to so little research being done in this area. You see, children often present with 'classic' coeliac symptoms yet there is a gap where people in their 30s and beyond often aren't picked up until they present to their Doctor with tiredness and anemia which the Doctor can't solve via normal routes. As research in this area and in gluten sensitivity, (the assumed forerunner to coeliac disease), emerges we hope that more may be done to shed light on this. It's rather like us generally all wanting to know when we developed coeliac disease. Doctors can't answer this either. Maybe we had it as a child yet got used to our subtle symptoms and normalised them? Maybe we developed it as adults after a stressful incident, glandular fever, severe stomach bug - who knows? The more of us that ask these questions of our health teams the better. It may make them stop and think and help them remember that not all coeliacs present with 'coeliac' written across their foreheads with a fanfare and fairy lights pointing to the diagnosis. Instead some of us just felt - not right and didn't know why.
You are not alone. And there's lots of us on this forum. So please feel free to keep discussing this topic.
We've also posted about this on our facebook page. Disturbingly many coeliacs have no health check and a lot are continuing to eat gluten as they don't get symptoms: facebook.com/glutenfreeguer...
Hi Fiona, firstly many many thanks for your comprehensive reply. I`ve followed the links and found them really helpful, particularly the facebook blog. May I pick your brain a little more? I have a few follow up questions:
1. My understanding of asymptomatic coeliacs is that they do not have ANY symptoms if they eat gluten. This includes the more normal gut problems and tiredness. Is this correct?(You mentioned prior to diagnosis you experienced tiredness and asked me to think back to health issues prior to diagnosis. I haven`t felt any different pre and post a GF diet. I`m a very active person and would, I believe, have been able to identify an improvement in my overall health (if there was one) once I`d started eating GF food.) [By the way I was diagnosised due to low B12, which strangely is still low after 4 years on a GF diet]
2. You mentioned ttg blood tests. Is this test the same as an endomysial antibody test? I`ve googled both, but end up reading medical jargon that confusing.
3. Some of the asymptomatic contributors to the links say they eat oats and have check ups every year to monitor their intestine and use this to judge whether they should continue. Is this seen as a relatively risk free way of eating oats? (I had a negative endomysial antibody test last May and oats are (presently) a significant part of my diet.)
p.s. I didn`t know you are the person responsible for launching GFG. Well done! A really useful source of information and network of like minded people.
1. My understanding of asymptomatic coeliacs is that they do not have ANY symptoms if they eat gluten. This includes the more normal gut problems and tiredness. Is this correct?(You mentioned prior to diagnosis you experienced tiredness and asked me to think back to health issues prior to diagnosis. I haven`t felt any different pre and post a GF diet. I`m a very active person and would, I believe, have been able to identify an improvement in my overall health (if there was one) once I`d started eating GF food.) [By the way I was diagnosised due to low B12, which strangely is still low after 4 years on a GF diet]
This is probably a bit like which came first the chicken or the egg. From all that I have read online over the years in trying to understand coeliac disease and searching for answers to questions doctors can't answer I would say this varies but that all asymptomatic coeliacs will have some symptoms i.e. your low B12 is a symptom - just not one you probably recognised the warning signs of until you had a blood test. You see we often normalise symptoms. It maybe that you didn't feel as tired as some coeliacs do but you had other health problems which you though were minor. When you were diagnosed were your anti-body levels high or mid range? It also partly depends on how many years you have gone undiagnosed for i.e. the longer it is often the more wide ranging the symptoms. Although as I mentioned I have read research that says that asymptomatic coeliacs can strangely have the worst villi damage, I know my gastro told me he knew I had it without waiting for the biopsy results as the villi damage was so visible. But like you I would never had thought I was a typical coeliac. Yet other coeliacs who have severe classic symptoms often have no visible villi damage until they get their full biopsy results.
You may also find our YouTube channel useful as I've included lots of videos I have found interesting about understanding coeliac disease:
2. You mentioned ttg blood tests. Is this test the same as an endomysial antibody test? I`ve googled both, but end up reading medical jargon that confusing.
The common blood tests for coeliac disease are below as they give the fullest picture of whether someone is reacting to gluten (i.e. gliadin):
> A tissue transglutaminase (IgA tTG),
> IgA endomysial antibody (IgA EMA),
> IgA antigliadin antibody (IgA AGA), and IgG antigliadin antibody (IgG AGA).
Most commonly used are these two:
IgA tTG and IgA EMA, they are considered the best for diagnostic accuracy. Sometimes Patients with an IgA deficiency may have falsely negative IgA assays so in that case the IgG test is often used.
Commonly when you have follow up blood tests annually at with yr GP/ Gastro then often they'll just focus on the tissue transglutaminase (IgA tTG) test to monitor anti-body levels to gluten to ensure everyone that is a coeliac is complying with a coeliac diet. Best practice also includes them testing an initial DEXA bone scan then yearly blood tests for for Vitamin D, B12, iron, folic acide, folate + thyroid function tests to ensure that people with coeliac disease do not have issues with these.
3. Some of the asymptomatic contributors to the links say they eat oats and have check ups every year to monitor their intestine and use this to judge whether they should continue. Is this seen as a relatively risk free way of eating oats? (I had a negative endomysial antibody test last May and oats are (presently) a significant part of my diet.)
It's really down to individual choice after consultation with a good gastro doctor and dietitian. Personally given avenin is so similar to many of the gluten proteins I chose to avoid it at diagnosis and have continued to as I don't want to risk feeling ill - especially given that I have other health issues which have arisen since being diagnosed coeliac (which aren't always naturally associated with coeliac disease but which I suspect are a result of my immune system struggling with coeliac disease for a number of years. After all research has shown that CD can effect every cell in the body - so often many coeliacs can feel worse after going gluten free before they feel better as the body takes time to adjust).
It's always good to have regular yearly check ups. I've seen conflicting research online over the years on this. One school believes that any gluten entering the diet would show up in blood test results. However, another stresses that it only shows up gluten that has been eaten within 6 weeks of having the blood test. Another mentions that there can be villi damage occurring without an alert on the blood tests. For example 3 years into being GF my blood test antibodies were 0. Yet when I had the capsule camera pill for ongoing problems it showed significant areas of the villi that were still damaged. Really it's best to discuss the dilemma of oats with your doctor. At my last coeliac clinic visit the nurse admitted to me she wouldn't recommend oats again as she had to one coeliac who'd then been sent dashing for the loo and been v ill. Yet what happens to asympotmatic coeliacs ?
p.s. I didn`t know you are the person responsible for launching GFG. Well done! A really useful source of information and network of like minded people.
Ta SDM - I have a small ego - maybe I need to shout about it more. Currently recovering from a large slipped disc (since september) and trying to dodge having a spinal fusion op so not as active in life or online as I'd like to be
Thanks Fiona. Very interesting and the more I read the more convinced I am that the medics only know the tip of the iceberg when it comes to understanding why villi are damaged.
In answer to your question: "When you were diagnosed were your anti-body levels high or mid range?" They were "strongly positive", and my biopsy results showed "evidence of raised intraepithelial lymphocytes, crypt hyperplasie and partial villous atrophy." So not sure why my villi were not flattened?
Thanks again and hope you manage to avoid the fusion op!
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