I have a different take on super sensitive coeliac disease. Every organ of the body is damaged through digestion of gluten every single one including the brain. Although it may be the small intestine that is used for investigation purposes, from the duodenum through the jejunum and finally the ileum which may show varying signs of visible villous atrophy there will also be damage to other organs the largest and most visible being the skin. The skin gives the coeliac a chance to monitor the condition from the very worst which is recognised as a condition in its own right, namely Dermatitis Herpetiformis to varying states of eczema, dry patches, weeping patches, painful sore spot areas, itching without rash, rough patches of skin that occasionally itch, splitting skin, broken raw areas of skin that are slow or difficult to heal, bruising without reason. Your skin should be perfect, no matter what age you have attained. ... Then we can go on to aching of joints and limbs and bones all of which are easy to experience and feel even if we have no visible evidence to see of these particular experiences ...

So super sensitivity can have a wide range of conditions and responses from the body. Feeling extremely unwell over various means often for a lengthy period of time when ingesting, breathing in, or simply touching something that contains a minute (often unmeasurable quantities) of gluten or substance where a grain has been used in some way to manufacture either all or a part of a processed item.

How do you know if you are super sensitive? Well this is easy - (after a reasonable time on a gluten free diet usually 18 months to 2 years you should start to feel well) if you follow, what you consider to be a gluten free diet but still continue to be unwell in any form (regularly) whether it is internal as in volatile sickness, headache, so on and so forth or whether you have other noticeable medical conditions whether they are aches, pains, rashes, etc then in all probability you may be a super sensitive coeliac. So what can you do to make yourself well? Write down everything that you eat or come into contact with and re-think your diet. If when you have done this, you still do not see your health improve dramatically then it is time to look at other possibilities and ask for further testing - perhaps starting with dairy foods, checking on other grains and this needs to be done with the aid of a professional until between you, you can track down the culprit or culprits that your body opposes.

Hi Lynxcat.

Whilst agreeing with most of what you say I would like to point out the even after a very strict diet excluding all gluten it took 4 years for my villi to become workable. The explanation given was that I had been doing damage to my gut for 60 years so it took this long to heal. I now feel very well, still taking B12 Vitamin D and calcium tablets however.

Hi Roscoe, I am glad that you now feel well again. It is a lovely feeling!

I know that with some of us it does indeed take much, much longer to begin to get well again. Under these circumstances, it is difficult to be patient with ourselves. We all want to feel well again. Indeed, for those who have felt poorly for years - being well is just a distant memory. I think what I wanted to put over was that with quite a lot of coeliacs there will be other damage throughout their body and this cannot repair itself whilst gluten is being consumed. In some instances there may be other food items that are also causing problems but it is always wise to cut out all of the gluten before looking for things like dairy, etc.

I remember reading a while back that there were coeliacs that had not had any gluten for years and had endoscopies to find that they had extremely damaged villi and after further exploration it was found that their diet contained fair amounts of soya. The piece explained that soya in the East is eaten in its fermented form and never eaten as a vegetable. I can remember trying the green beans that were frozen and sat next to the peas in the supermarket. I was disappointed with their flavour - but now I am glad that I didn't go back for a second packet.

Hiya...
I would be coeliac b entirely. .I didn't get symptoms leading up to diagnosis I just lost a shed load of weight but not through sickness or diarrhoea.
I had complete villi atrophy.
Now if I eat something that has gluten in accidentally I get gut rot!

My take on a super sensitive is nothing to do with villi damage/flattened it is the amout of gluten/gliadin that is required to cause a reaction, a reaction that has led to a coeliac diagnosis.
It is a well thought out idea and well written but does not address a coeliac who has avoided all known gluten yet after 4 years has a Marsh 0 biopsy an AGA of 42 being equal to 9 months on a gluten free diet. This indicates that gluten/gliadin is still being ingested to cause a reaction with no indication that villi is not affected.
Some coeliac's do not get the urge to visit the loo often but can go the other way with severe constipation.
Remember everyone is different which is not taken into account when a gluten free diet is advised.

Hi Folks, does it really matter what a coelac who is not very sensitive thinks about ''allowed'' levels of gluten?

And what is in codex wheat, malted breakfast cereals that are below codex with contains barley and gluten in the allergy box? Even Coeliac UK admit that not all coeliac can tolerate malted breakfast cereals or oat gluten. And why is this? because the gluten makes them ill.

What those who are super sensitive have to understand is that it must be very difficult for coeliac who are not that sensitive as they have to rely on those magic words on food packaging ''Gluten free'' Because they are not made ill by traces of gluten or allowed levels of gluten.

Gluten is toxic to ALL coeliac regardless of how sensitive they appear to it and it must be hard being on a ''strict'' gf diet that contains too much gluten for some other coeliac. So being a super sensitive coeliac is whoosh way above the heads of some not so sensitive coeliac, so who cares what they speculate.

So I think that super sensitive coeliac have to be sensitive to the not so sensitive coeliac and vice versa and respect each others needs.

That's my 2p's worth.
Jerry

Hi Jerry, you make a very good point that just because a 'not so sensitive' coeliac shows no reaction to low levels of gluten that can be in so called 'gluten free' foods the chances are that the damage casued inside is the same. This is obvious due to the fact the Coeliac B in the above piece has total gut flattening even without the usual symptoms.

So I have to ask whey the heck Coeliac UK advocate foods being labelled gluten free to still contain gluten - however small the amount ?

The debate rages on.

Hi

I've just been reading this post today and completely agree with you about coeliac UK. I've been trying to raise this with them they keep giving the same useless answer. I've been ill from products listed in the book. Coeliacs should completely avoid anything containing BARLEY MALT EXTRACT.

Your 2p worth?

"Gluten is toxic to ALL coeliac regardless of how sensitive they appear to it and it must be hard being on a ''strict'' gf diet that contains too much gluten for some other coeliac. So being a super sensitive coeliac is whoosh way above the heads of some not so sensitive coeliac, so who cares what they speculate. "
If gluten is toxic to all Coeliac's why do they feed Toxin's to Coeliac's? The Gluten-free diet being the reccommended treatment for the condition? Which has contained 200ppm now 20ppm.
As stated previously from correspondence from the very person who made up this legislation, "However, such considerations can never preclude individual reactions" which sums up the market for feeding the condition only for those who can tolerate it, not for all coeliac's.
My concern Jerry is that for me and others like me we have to not only read labels we also have to know where idividual ingredients are sourced to have a varied diet in line with normal people or other coeliacs who show little interest in those with the same diagnosis but are not able to tolerate what they can.
You never say where and how you had a super sensitive coeliac diagnosis?

Now how was I diagnosed as a super sensitive coeliac. I ate wholefoods before being diagnosed and a couple of days after diagnosis I went to GF food demo and the food was so processed it reminded me of ultra refined Mr Kipling cakes and was far to refined and sickly for my taste buds so I ate naturally gf foods and my anaemia went and I felt great after 2 months I had a follow up biopsy which showed that my villi had fully recovered as had my iron levels.

Being a single dad it was hard work and I started getting food on prescription but soon went down hill health wise was given immodium by my GP and my iron levels dropped the diagnosis IBS. So I reverted to my naturally gf diet and the IBS went and my iron levels rocketed. This confused me as I felt like some sort of freak who was made ill by food clearly listed in Coeliac UK food handbook so I abandoned their food list and stopped getting ill. My gastro told me that some coeliac were more sensitive than others and that I was obviously very sensitive to gluten.

Now in Australia I can everything clearly labelled as gf as they have more robust standards than us and they even give advice to super sensitive coeliac who can not tolerate their 5ppm with no wheat oats barley or rye and in Australia I am an ordinary coeliac.

So I see myself as a coeliac who is just sensitive to all gluten regardless of whether it's below codex or not. And I use the term super sensitive amongst other coeliac to indicate that I can not tolerate the gluten in codex wheat barley malt or oat gluten.

As for allowed levels of gluten in gf food I assume that's because of processed foods and the inability to test for no gluten.

"Now in Australia I can everything clearly labelled as gf as they have more robust standards than us and they even give advice to super sensitive coeliac who can not tolerate their 5ppm with no wheat oats barley or rye and in Australia I am an ordinary coeliac."
From what I am reading Jerry you can tolerate 5ppm? which is the Australian standard.
"And I use the term super sensitive amongst other coeliac to indicate that I can not tolerate the gluten in codex wheat barley malt or oat gluten", yet you can tolerate 5ppm what would you call a coeliac with a zero gluten threshold? Hypersensitive?.
Surely if an allergen causes adverse reactions in individuals the allergen should be delared on the label should it not? or does the money market dictate the law?

Thanks for your responses. They are very interesting. I do feel however that some of you have missed some of the key point I was making so I've clarified these below.

At diagnosis people are advised to go on a gluten free diet, which at present does include 'gluten free' food at 20ppm. Hopefully at this time they will also have a series of standard blood tests carried out.

But, if not, and there is no dramatic improvement to well being after following the diet then the next stage usually involves blood tests to check vitamin levels and tests for other autoimmune diseases.

It's a fact that if you have damaged villi you will NOT be able to correctly absorb nutrients from foods you have been eating and are likely to be deficient in essential vitamins which will cause lots of problems from the minor to the extreme. You may suffer severe neurological symptoms that take some time to diagnose as they may not be quickly associated with the vitamin deficiency.

I'm well aware of the fact that gluten can impact various areas of the body, in fact I mention gluten ataxia, but I do not agree that "there will also be damage to other organs the largest and most visible being the skin". I concur there will be damage to cells throughout the body.

People can experience skin problems due to a variety of conditions, including DH, but just because you are diagnosed Coeliac does not mean that any skin problem you experience is due to gluten. You should always get any condition checked by a doctor and, if severe enough, get referred to a specialist.

"How do you know if you are super sensitive? Well this is easy..."
If I've understood correctly what you are saying is that if someone has followed a gluten free diet for upto 2 yrs and continues to feel unwell and presents with other medical symptoms then "in all probability you may be super sensitive".

I'm alarmed at this. It's then suggested, that at this late stage, the Coeliac starts to write down everything they eat or come into contact with and rethink their diet. This strikes me as a being back to front.

In the early days of diagnosis is makes absolute sense to keep a food diary and note down every instant when you experience, what may be typical 'glutened' symptoms for you. You should also have been advised to avoid lactose as this is very hard for the flattened villi to process and you should recover quicker without the body having to deal with this.

As the villi start to heal all manner of non processed, non gluten foods, which you haven't experienced problems with before, can start to be an issue. Sugar can cause lots of unpleasant stomach symptoms. Before diagnosis when you ate sugary foods or certain types of vegetables they passed fairly quickly across the flattened villi and weren't an issue. Now, with the healing villi starting to work as intended gastric issues may occur.

Your gastric doc may suggest that you try a FODMAP diet. This is basically an exclusion diet which takes known problem foods from your diet. You then introduce them back one at a time and note whether you experience a problem. Onions, garlic, pulses and various vegetables fall into the FODMAP bucket. It's advisable to have the support of a dietician when attempting this diet but many NHS dieticians are now being trained to offer support for this.

In addition many people may have continuing ongoing stomach/gastric problems despite following a gluten free diet and these could be caused be a variety of other important conditions, separate from gluten, that need a proper diagnosis and may be a further endoscopy/biopsy e.g. atrophic, autoimmune gastritis, diverticular disease, NETs, ulcers.

Not to mention a host of other conditions which could be making somebody feel unwell despite sticking to a gluten free diet, e.g. thyroid disorder, pernicious anaemia. endometriosis, gall stones or even ovarian cancer in women (a key symptom of which is persistant bloating). If we were all to follow your advice such other serious conditions would be missed because people would simply blame it on 'minute traces of gluten getting into their system'.

My original post was saying that regardless of whether you are an (A) or (B) coeliac the fact that you are 'OBVIOUSLY REACTIVE' to gluten does not necessarily mean that you are experiencing more damage than someone who does not react in an obvious manner. I take issue with the term 'super sensitive'. It's like saying 'my dad's bigger than your dad' and all it does is muddy the discussion.

Nothing moves on and everyone goes in circles. I am fed up coping with the question 'are you a very sensitive coeliac' when I ask the restaurant how they handle the cross contamination issues'. No I'm a Coeliac full stop.

It's like pregnancy, you either are or you aren't, there's no 'little bit coeliac'.

Many of you seem to have jumped on the 'red herring' about allowed levels of gluten in gluten free foods, or whether people are eating codex wheat starch or not. Take that out of the equation.

Having eating very small quantities of processed foods pre diagnosis I had no desire to fill up with cakes from the free-from aisle. So I choose to purchase very few products that are labelled specifically 'gluten free and stick to naturally gluten free diet. I also read every product label very carefully.

If you are a coeliac who experiences a very obvious reaction to small quantities of gluten in processed foods then don't eat them! Just as some coeliacs decide to use health & beauty products which don't contain any ingredients derived from wheat based grains, it's down to personal choice.

It is totally irrelevant whether you are an obviously reactive coeliac or non reactive coeliac. All Coeliacs are the same. Every person diagnosed with Coeliacs has the potential to experience damage to their body cells when ingesting gluten.

My original point is that the term 'super sensitive' is not valid. It implies to me that you are in some way being damaged by small amounts of gluten because you experience a reaction but, the non super sensitive coeliac is ok eating 'gluten free foods' with the current 20ppm, Sometimes super sensitive coeliacs say they react to airborne gluten e.g. 'I cycled through a wheat field and felt ill'.

If you feel strongly that you are being damaged by foods labelled 'gluten free' then give them a wide berth but don't think your experience is extraordinary to that of any other coeliac.

This devisive discussion simply draws attention and energy away from coeliacs actually coming together to share advice and tips and demand that supermarkets and venues do more to provide naturally gluten free items.

Playing devil's advocate, is a Coeliac who at diagnosis chose to abstain from codex wheat starch, gluten free oats, barley malt cereal, barley malt vinegar and who does not have an obvious reaction to their gluten free diet, actually a super sensitive coeliac who doesn't know it, because they have abstained from these foods, or are just a Coeliac?

Would we, rather than banging on about levels of sensitivity in fact be better versed writing to our MP's for better gluten free labelling, chatting positively to our local restaurant and educating them so we can confidently eat there, getting our GP's to pop up posters re coeliac disease so some of the undiagnosed get spotted and start taking responsibility for our health ourselves.

"I'm alarmed at this. It's then suggested, that at this late stage, the Coeliac starts to write down everything they eat or come into contact with and rethink their diet. This strikes me as a being back to front. "
You do not seem to be grasping the responses you are being given, Why would a coeliac react to the gluten free diet? because of the ingredients! one being gluten and usual source being wheat. Why after 4 years would I write down what I am consuming? because bloods show gliadin still getting into me, why/how? also because I want to know why I am ill, easy. So I can exclude it. In my case it also indicated a Formaldehyde Allergy. FODMAPS includes many formaldehyde producing foods.My villi are normal....
"Its like pregnancy, you either are or arn't, etc" which indicates a lack of knowledge as your staement shows that you believe every pregnancy is the same...ask the ladies if they are, the same applies to this condition.
Yes the diagnosis is the same Coeliac Disease, ask your consultant why they consider you have Coeliac Disease, mine is HLA-DQ2positive and reduced folds, d2 a coeliac endoscopy marker.

MedicalSceptic a very interesting blog post on a topic that is often under discussed. Good to see some lively debates. If only some Doctors would do more research into this in future.

Not just doctors Fiona Professors as well in fact all Healthcare Professionals need to review that we are not all the same

And who advises the govt, Dr's, dieticians and coeliac? Coeliac UK and they seem to think that codex is fine for ALL coeliac contrary to what other continents say.

I am not a member of Coeliac UK as I can not tolerate the gluten in some gf food so why should I support and organisation that acts as if I don't exist when I'm a UK diagnosed coeliac, So I see them as being deeply divisive amongst coeliac as those who are happy with eating wheat, oats and barley products that are below codex feel threatened by the ones who can not tolerate allowed levels of gluten. And coeliac who have to use the term super sensitive feel threatened by being made ill with low levels of gluten in gf foods.

And if a so say super sensitive coeliac made a blog saying ''I'm a coeliac on a strict gf diet but I eat special wheat oats and barley, yeh right'' they'd be up in arms and say this was offensive and that ''we'' should all stick together.

Well I wish thinkfree luck and hope that they grow with the support of coeliac who simply can not tolerate gluten. Please see: think-free.uphero.com/

This organisation has been started by a member of GFG and I take my hat off to you.

The question has been asked :
"And who advises the govt, Dr's, dieticians and coeliac? Coeliac UK and they seem to think that codex is fine for ALL coeliac contrary to what other continents say".
The answer is:
The European Food Safety Authority who have a panel of experts who provide Scientific Opinions to the Panel. (If you google European Food Safety Authority and put gluten in the search box, you can form your own opinions of the scientific opinions based on your own experiences) These then become EU Law, the one on gluten free labelling was devised by Ariane Vander-Strappen of the EU. This is passed to the Food Standards Agency UK law who then pass it onto Coeliac UK Coeliac UK advises the NHS. etc etc.
I am not a member of Coeliac UK and I cannot tolerate gluten of any shape form or quantity.
There is no allowance for a diagnosed coeliac who cannot tolerate any gluten whatsoever.

Very interesting debate to which I can add another angle. I have been diagnosed for 9 years afrer a lifetime of misdiagnoses. I follow a strict gf diet however due to misinformation I injested gluten and suffered anaphylic shock which resulted in hospital admission and emergency adrenilin. I now carry epi pen. I know very quickly if i have eaten gluten an also euffer the typical symptoms......but i can eat rice crispies with no effect and clear blood tests.

Anaphylactic shock is normally related to an Allergic reaction not Coeliac Disease, have you been tested for IgE for gluten or wheat? or a skin prick test.
As I get Allergic reactions I would be concerned if you have high blood pressure rather than low blood pressure, if your blood pressure is high (mine is) an Epipen when used raises the blood pressure so you would be in a very dangerous condition.
I would be inclined to follow up the reason for an Epipen and the anaphylatic shock and your BP.

I understand where you are coming from however i am without doubt ceoliac confirmed with both bloods and endescope. Gluten is the confirmed ingredient for anaphylaxis too having eaten in controlled hospital conditions. My blood pressure is normal. Well aware of effects of adrenlin and not much fun

Hi EMcd, I have raised this previously without any response. I have Food exercise induced Allergic reactions with gluten with blood pressure up to 210/108. I have carried out my own skin prick test using acquired glute and had a reaction but when GP informed all he said was that I might have an anaphylactic shock.....no thought of referral.
After 7 years I find I have a Formaldehyde Allergy so now looking for any link as my CD went into remission for 45 years.
Did black out at the dentist over adrenalin

That's interesting EMcd. We had some earlier discussions on here re anaphylaxis which we hadn't come across before.

I think that sometime we are so busy saying that CD is an AI disease and not an allergy that it's easy to overlook that a severe allergic reaction to wheat/gluten, requiring an epi pen, is a reality for some.

glutenfreeguerrillas.health...

Thanx for the link i missed that conversation will go back to it now. I appreciate your comments too. X n