An answer is needed....

[pretender]

On Saturday we bought some sausages, made by a gluten free sausage maker. Two hours after eating three of them I fell asleep, four hours after eating them I was sick three times. After this I suffered no coeliac symptoms whatsoever. Had a good nights sleep and back to normal. The sausages contained breadcrumbs and wheat flour. I have not eaten wheat/gluten for six years, why no coeliac symptoms?

[suemoly]

I would say that sickness and sleeping are symptoms of being coeliac?? or i am mistaken?? its not just visiting the toilet for me!!! just wondering why would you eat something with breadcrumbs and wheat in it anyway???

[pretender]

The sickness and sleeping are not common symptoms for me, quite the opposite. A caution we have learned is not to be complacent with brand names, even GF ones & always check ingredients, more so if you are very sensitive.

[pretender]

"made by a gluten free sausage maker." I didn't say they were gluten free, I do not eat gluten free food ie may contain 20ppm of gluten per kilo.

[Mia1057 in reply to pretender]

I am confused by your comment, I also do not eat anything that contains any gluten even 20ppm but I consider myself to be eating a gluten free diet, I just don't eat anything from the free from aisles and stick to only naturally occurring GF foods like meat, fish, veg, fruit, yogurt, rice, pulses and nuts. I check every label and certainly never eat anything containing wheat, barley, oats, rye, spelt etc . Certainly when I get glutened my symptoms are sometimes exactly as you described.

[Penel]

This is a bit confusing Pretender. If you do not eat food that may contain 20ppm of gluten, why would you eat food that obviously contains a lot of gluten?

As for coeliac symptoms, there are a lot of different symptoms possible and they seem to change over time, depending on how long you have been avoiding gluten, and on the amount consumed.

[pretender in reply to Penel]

We purchased a pack of sausages that were made by a company that also makes GF sausages( sausages without any gluten of gluten derivatives) we did not think that this firm also made normal sausages until we ate them and I was ill. Reading the ingredient list we saw breadcrumbs & wheat flour but it does not answer why no coeliac symptoms? for me days awake, constipation, hot flushes etc lesson learned 'always check ingredients even on products made by companies making foods for coeliacs.'

[Penel in reply to pretender]

Thanks Pretender, now I understand. Yes , you are right, you always have to read the ingredients beforehand, every time.

[kerrysilver]

You body got rid of the posin by being sick and repaired by sleeping. Therefor it was not nessacely for it to anything more.

[weee]

My symptoms of being 'Glutened' are being sick and sleeping. Unless the sausages say 'gluten free' I'd suspect they have gluten in them.. What a shame that you were so poorly...

[pretender in reply to weee]

I was only sick three times but fine after that, and thanks for your last comment

[Mango1]

I find it very interesting how differently we are affected by being 'glutened',. My first reaction

within half an hour would be tremendous stomach/bowel pains where I am doubled over until I start to empty my bowel. I am sweating and yet freezing cold until there is nothing left inside of me and then exhausted.

[barny]

my sytoms are pain and diarria all night but after that mussy head for 2days been celiec 2yrs now get well soon

[Hidden]

We are once again being conned by pretended. That is the confusing part.

[pretender in reply to Hidden]

Conned Roscoe? Two official diagnosis with a confirmation by a professor, you dispute this? My last endoscopy January 2011 showed a Marsh 0 just like the 2007 biopsies which means my gut is normal and has been on both occasions. Because I cannot tolerate the GF diet does not mean I am conning anyone. In June 2013 I was also formally diagnosed with a "Formaldehyde Allergy" which accounts for the urticaria and the intolerance to 'Hydroxypropylmethylcellulose' an ingredient in GF foods also 'Hypromellose' an ingredient in medications. 7 years to diagnose. I have 19 pages of my legal/medical history which includes TWO diagnosis and one HE Doesn't HAVE CD.

[pretender in reply to pretender]

PS. My endoscopy investigation showed "Reduced Folds, d2" which is a recognised CD marker.

[freelancer]

I'm not diagnosed coeliac but my gluten symptoms are primarily extreme sleepiness - crashing out for four hours at a time - and an inability to concentrate or think straight coupled with irrational anxiety for the next three days. Increasingly there's a bit of stomach stuff, but that never used to happen at all.

Could it not be that your guts have (partially) healed since the last time, changing the way your symptoms manifest?

[Angelbelle]

If I have been "glutened" acidentally I might add, within a very short space of time, I start yawning withhout stopping and need to lie down, 'cos then the pain starts followed a couple of hours later, by constant tarerips to the loo. Once bowels empty, back to normal.

[Hidden]

Now I really am confused. What was the meaning of the question? Where they gluten free or not? Are you saying we should read the labels or stop buying from premises that may have contamination. There must be a simple question in there. An answer is needed. What is the question?

[pretender]

Very simply Roscoe, here in the UK some companies produce GF foods so you get used to their name, on this occasion we did and then realised that they also make foods for normal people by being sick. Food for normal people in this case contained breadcrumbs and wheat flour, but because of the company name we took for granted they were alright for me. The question Roscoe was why after eating three of the sausages containing breadcrumbs and wheat flour was I only sick three times with no coeliac type symptoms to follow it? I am highly sensitive to wheat, bleed with rye & barley. I read on this site what little and how soon others suffer from wheat/gluten why not me? Or is my CD different?

[Hidden]

Ok. I am coeliac. Diagnosed by small bowel investigation and bloods. For 4 years they thought I was refractory because my villi never recovered during that period. Should I consume gluten I have absolutely no reaction except for a few days later I have mouth ulcers and scalp problems. Coeliacs in general have all different reactions. There is no set reaction. The big point is though that we all damage our villi when gluten is concerned. The second point is I never eat anything without checking the labels. And I mean never. All cd's are different.

[pretender]

Thank you Roscoe, we are all different but classed as the same. Some can tolerate low amounts of gluten (the accepted majority) while others tolerate none what so ever(exiled coeliacs). I was first diagnosed in 1955 before all the current tests and diet, capsule biopsy in 1962 gut normal back onto normal foods, 1992 endoscopy showed again a normal gut, 2007 endoscopy also showed a normal gut. The professor's endoscopy again showed a normal gut but reduced folds,d2. Also HLA-DQ2 positive. No question about being a coeliac even with it being a family heirloom. On most occasions we check every ingredient, right down to derivatives and those that produce formaldehyde (my allergy) but on this occasion we took the makers name to seriously, as safe

[Hidden in reply to pretender]

Hi Pretender. The statement we are all different but classed as the same is strange. If this was so there would be a cure for being a coeliac in a very short time. According to Dr Bob Anderson (a researcher for coeliac disease) the big problems are all the different peptides that coeliacs have. So it is difficult to find a cure. Many millions of dollars has already been spent to find a cure. I hiope that one day they will have an injection you can have so we can at least enjoy a Guiness or two.

[pretender in reply to Hidden]

Coeliac Disease is the name given to the condition that has so many variations with tolerance. for example the gluten free diet is the accepted treatment that actually contains what should be avoided, the majority can tolerate it and there is the minority that cannot . The research as I recall says that a wheat grain contains 2700 proteins, 90 can cause health issues but only 3 effect coeliac's. I maybe wrong on this. Will this cure, when it arrives cater for the majority or for all coeliac's? Then what happens to the coeliac organisations and the GF food industry?

[Hidden in reply to pretender]

Coeliac disease is an immune disease caused by gluten, a component of wheat, rye, barley and oats. When people with coeliac disease eat gluten, an inappropriate immune reaction causes inflammation, damage and flattening of the small bowel. This damage is called "villous atrophy". The only cure for all coeliacs is a total gluten free diet. As to what happens to coeliac societies and manufactures is irrelevant if a cure is found. But with all auto immune disease complaints a cure is complicated.

[pretender in reply to Hidden]

I have read all that stuff but...If gluten is causing these problems why does the treatment i e the Gluten-Free diet contain up to 20ppm of gluten per kilo of finished product. "The only cure for all coeliac's is a total gluten free diet", that is treatment not cure roscoe, but you are feeding gluten to coeliac's which does not make sense.

[Hidden in reply to pretender]

Sorry to butt in here folks but just to clarify a couple of points, 20ppm is a ratio and 20ppm in 1kg is 20mg

Also where Roscoe lives they have 5ppm as the maximum 'allowed' level of gluten and no wheat, oats rye or barley and wheat deriv's have to be labelled as exactly that.

In Australia and NZ malted cornflakes that are below codex are not considered as suitable for a gluten free diet and marmite is not classed as gluten free over there.

Coeliac in the UK are allowed to eat foods with gluten in them like cornflakes that are below codex and still say contains gluten on the allergy warning.

I don't make the rules on 'gluten free' I'm just a coeliac who is made ill by it including allowed levels in the UK.

[pretender in reply to Hidden]

Thank you jerry, long time no chat. The point is that although the condition is called Coeliac Disease the condition is treated differently in different countries and has different levels of tolerance. The term gluten free is misleading to those who come into contact with coeliac's, I class myself as being on a coeliac diet because I avoid anything from a gluten source which includes most of the Gluten Free foods available. Those who like me avoid all gluten containing products although classed as coeliac's belong nowhere in the coeliac world

[Hidden in reply to pretender]

Pretender I just do not know what to make of your last post. Coeliac disease is treated the same way all over the world. Do you mean by your last post that countries have different levels of tolerance that legislators make different rules to cater? The reason we have 5ppm and you have 20ppm is just what has been legislated. And are you so sure that your totally gluten free is really gluten free.

[Hidden in reply to Hidden]

Thanks Jerry this is what I have been on about. The difference is staggering between Australia and the UK. At least we know what we are eating. BTW thanks for clarifying the ratio.

[pretender in reply to Hidden]

That is the big issue with the UK, people do not know what they are eating and blame everything else other than the cause. 20ppm of gluten might be just to much for many coeliac's but because of the "GF" hype it is never considered as the culprit

[Hidden in reply to pretender]

That is your issue. What is interesting but the Coeliac Society of Australia and New Zealand have lobbied the FDA to lift the level to 20ppm. A safe level for coeliacs. We will see what happens.

[Hidden in reply to Hidden]

His Roscoe, even if the FDA do comply with the international level of gf at 20ppm, will food labelled as gluten free still have to be free of the forbidden grains? This I feel is a key point here.

Over here in the safe list of gf foods are some supermarket breakfast cereals that have malt added. And I can't see that happening over there.

Also 'pure' oats, over here Coeliac UK say that around 5% of coeliac cannot tolerate oats. According to the AU coeliac society around 25% of coeliac cannot tolerate 'pure' oats.

We can also get bread and flour on prescription that are made with codex wheat so again are you chaps going to want to eat this.

So in my opinion it's how codex is interpreted by individual coeliac societies that is the real issue.

[Hidden in reply to Hidden]

I agree entirely. We will still have the mandatory allergen statement.such as contains wheat, derived from barley and so on. We certainly would not allow codex as it would probably be over the allowed gluten level. I remember a few years ago being in the UK and a coeliac friend gave me a loaf of his coeliac bread on prescription. So light and fluffy but boy was I sick after. Found out later it was the codex.

[Lynilou]

They wouldn't be Deb and Andrews sausages by any chance? In a hurry I was just about to put their usual gf sausages in my basket, but thought I'd check and there on the label was wheat flour! Ouch! I've given up on sausage now, like Mia I stick to a naturally gf diet- and feel better for it! Sometimes as coeliac I have weird reactions which don't always follow a pattern if I think I've ingested gluten by accident, it's a matter of guess work and trying to eliminate the cause.

[pretender in reply to Lynilou]

Correct....we did the same. Will stick to a local supplier in future, Now seem to have IBS symptoms

[Hidden]

if you want sausages try the wide range available at Marks & Spencer. Their labelling always tells you if things are made in gf facilities as well as ingredients and have never had problems and am very sensitive.

[tmoxon]

The good little sausage company has just won the best taste test on Which for sausages and they are gluten free. I last bought them at Waitrose and they are lovely

[myrab]

I always use my local butcher, he only makes GF sausages and burgers for everyone to buy, so no risk of contamination using the mincer, try asking the high street butchers if they can supply them. At least I don't have to pay the hyped up charge they put on GF foods the supermarkets supplies.

[pretender]

Where I live local butchers are history, taken out by supermarkets. Going to stick to one up the m20 @ Dobbies garden centre where I can also eat safely

[Hidden]

In Australia the 2 largest supermarkets are total gluten free sausages. And a great variety too.

[Hidden]

A few years ago whilst on holiday I had what I thought was just a crab salad. When chatting afterwards I remarked that at home a crab salad for the price I paid would be tiny. I was then told that my crab had been 'extended' with ground up crackers! I was dreading the next few hours because I usually react within 5 hours of eating gluten. I didn't react except for becoming extremely tired. I was really confused. Not long after I had my annual review with my consultant and mentioned it to him. He reckoned that because I am such a 'good coeliac' and my guts are in pretty good shape that the crackers must have been a low gluten level and I had got away with it. But, he then went onto say that if I eat more then my gut damage would restart and I would suffer.....I found it really weird, I'm ill if I inhale flour or a spoon is put in the wrong thing....totally weird.