Does a Coeliac have to have the GF (gluten free diet) ?

[pretender]

Does a Coeliac have to have the GF (gluten free diet) ? or can they make decisions on what they can tolerate.

[Mazz]

if you think you are having trouble with gluten, you do need to cut it out of your diet, I was told I could not eat wheat, Oats, Rye, Barley and Codex wheat, I have to read the Allergy advise label of everything I buy as food and drink. I have also found out I am affected by fructose, so any diet product ie diet coke, diet lemonade make me feel poorly.

[Mazz]

so you need to buy "Free From" products

[pretender]

Have you thought about Aspartame? Mazz?

[ThatPandaGirl]

Yes a coeliac HAS to have a completely gluten free diet at all times. Whether or not you feel you may be able to 'tolerate' some gluten, the internal damage is still being done if any gluten is ingested at all.

[pretender in reply to ThatPandaGirl]

"Yes a coeliac HAS to have a completely gluten free diet at all times. Whether or not you feel you may be able to 'tolerate' some gluten" how can it be claimed to be 'completely gluten free' when gluten free foods contain gluten? please explain!

[Lynxcat]

Firstly, anyone experiencing problems with their digestive system and possibly with eating foods containing gluten or wheat, etc should visit the doctor - find out whether they are either suffering from coeliac disease, gluten sensitivity or other type of allergy. (I believe that you said in an earlier post that you were a coeliac - if I am wrong about this - I apologise. If indeed you are a coeliac and therefore extremely sensitive to gluten in any form then I will offer advice below.)

If you are either coeliac, gluten intolerant or suffer from dermatitis herpetiformis then all gluten should be removed from the diet even tiny amounts that cause no apparent tummy upsets are still ill-advised to consume. For one thing gluten (for those who are affected by it) doesn't just cause problems with the small intestine it also is problematic to other organs of the body, including the skin. Those who are really gluten sensitive (and I use the term loosely to cover a broad spectrum of illnesses) on exposure to gluten, may experience joint pains, pains in the jaw, soreness of the scalp, dryness of the skin, haemorrhoids, oedema - especially in the lower legs and ankles, dry/split heels, sore elbows, aching or sore knees, pains in the shins, dry eyes, sore eyes, ulcers and blood blisters in the mouth and on the tongue, unexplained aches and pains in the shoulders - middle back and lower back, bruising anywhere on the body, heartburn, indigestion, persistent headaches ... and so the list goes on.

We are all different. What we experience and feel when we have gluten is individual but the fact is, it causes damages to those who cannot process it which, if we do not address may lead to other serious illnesses some of which are autoimmune (where the body attacks itself) others are often milder complications. No one wants, wishes or enjoys being poorly, so best advice really is to avoid all gluten forevermore.

[pretender]

I have yet to have explained to me why being diagnosed as a coeliac after dieting a number of years and a biopsy I can eat normal foods for many many years until an event which then causes an allergy with many implications and it does appear not to be gluten related as a current biopsy shows complete gut recovery but continuing symptoms prior to diagnosis.

[Lynxcat in reply to pretender]

I am not sure if I understand what you are saying here. Do you mean that firstly you were diagnosed as a coeliac and therefore went gluten free for several years and then you were advised that you were wrongly diagnosed as a coeliac and therefore you could eat anything?

If you were indeed wrongly diagnosed but have similar symptoms it may suggest that you could be suffering with something else. Perhaps you could return to your doctor and ask for a full spectrum of allergy tests. This helps to rule out those things that do not affect you and allow for more understanding of how your diet could be amended to help to alleviate some of your symptoms.

Have you ever checked out the SCD site? There are a few interesting things on there:

scdlifestyle.com/

scdlifestyle.com/2012/04/ho...

There is also another site which might also be of interest to you:

natural-health-information-...

It is quite easy for a person to develop health problems or allergies throughout there life time which are unusual and seemingly different to others and this is probably because of how people have evolved. Evolution has cut corners in modifying our bodies in many areas and we have had to pay a heavy price for upright walking, larger brains, looking straight forwards and so forth. I remember being so very surprised twenty years or so ago when someone I knew advised that their child had to have an operation because they had infected gills. This was the first time that I found out that indeed man has dormant gills near to the ears - covered over with skin and usually no problem at all. Our early ancestors had extremely long guts until they learnt the skills of both hunting meat and making fires then our gut shrank dramatically for man no longer required such length for digesting poor quality food.

There are so many theorists today but one thing that has regularly been highlighted for over thirty years are problems acquired with regular consumption of sugars. If you have never read it then a blog by Sarah Wilson is quite interesting - she claims to have completely cut sugar out of her diet and advises of the benefits of doing so:

sarahwilson.com.au/frequent...

[pretender]

Hi Lynxcat, yes I was diagnosed as a 6 year old and went on the wheat free diet (gluten not known then). a capsule biopsy aged 13 said I never had it. Aged 43 endoscopy performed nothing found. So after a further 14 years IgA positive and Biopsy = active CD. Total 45 years normal foods. 2007 GF diet = ill health, 2008 GF/WF diet still ill, Aged 61 IgA=negative, IgG = megative ttg = 0.9.. Allergy clinic tests negative, IgE negative for wheat, Aged 62 endoscopy = Marsh 0 biopsy = gut normal, AGA = 42 HLA-DQ2 positive (40% population is DQ2).

Aged 63 react to meds and GF/WF food ingredients Aspartame these indicate a "Formaldehyde Allergy" which so far by todays criteria for a coeliac does not fit.

[barny]

hiya i was diagnoised at 66 three years ago how they foud out i had runs for 12months lost weight so went to docs had biopsey and was told no gluton at all never had it be 4 and now aviod gluton at all costs goodluck

[pretender]

Having trained many times as a First Aider it is the medical history you are taught to find out first. In my case a diagnosis of Coeliac Disease at the age of 6 was in that medical history also the fact that at 13 by biopsy it was considered incorrect clinical judgement, a Coeliac diagnosis was not missed only the Healthcare Practitioners who should have read those notes from 1962 whenever I complained of stomach problems, also medical history.

As for the chemical poisoning I find it surprising how the onset of Coeliac diagnosis takes place 1st poisoning =mood swings, 2nd Atrial Fibrilation & COPD 3rd weight loss not until the 5th was investigation carried out and dietary process started. It is not known what triggers the disease, "Professor Ciclitira". The only relevance I can see is Reduced folds,d2 that have any bearing on CD.

14 years for your diagnosis has no bearing on the 45 years of mine even working with flour in kitchens, now noterated in the house.

The other issue being the chemicals used, the main having an ingredient called Bodoxin which contains Hemiformal a Formaldehyde Donor not picked up by HSE or Guy's Hospital poisons unit.

When we get answer's Jerry we can cater for them once a patient complains of continued ill health investigation should not stop because of one diagnosis as is my case, as for support no-one has said that I may have any underlying condition or even looked.

[poing]

Hi pretender,

I think the presence of AGA is significant... if levels are very high, then it means your body is creating a lot of antibodies to gluten. If you generate a lot of AGA, then you are having a systemic inflammatory reaction, which will change your body chemistry in all sorts of ways, and have a lot of negative effects.

Yet at this point you will not necessarily have any of the villous atrophy associated with coeliac disease. Villous atrophy is caused by auto-antibodies... the EMA and TTG antibodies are antibodies against specific gut enzymes. The damage being done will depend on the types of antibodies being generated.

Children aren't born with coeliac disease, they go on to develop it because of as yet unknown environmental factors. I think the first stage is when the immune reaction against gluten starts to get out of control and the immune system is in a chronically active state. Eventually, in susceptible people, the immune system starts cross reacting and the result is autoimmunity. Only at that point can you be diagnosed with coealic disease.

Coeliac disease is just one aspect of gluten sensitivity. There is a whole spectrum of diseases known to be caused by or associated with the consumption of gluten. Unfortunately there are no established tests for most of the other aspects. I think it's a big mistake to think that just because you don't have one of the gluten diseases - coeliac disease - that you are okay to eat gluten.

The human body is amazingly resiliant most of the time and can put up with a lot of things. I think ill health is the result of multiple different things loading our bodies until eventually something has to break. A chemical poisoning would be a fairly big straw that broke the camels back and leads to onset of illness. If you are pre-disposed to having a problem with gluten, then it wouldn't surprise me that your problem appeared or re-appeared after something like that, because of the huge physical stress it created.

[pretender in reply to poing]

Hi Poing, very interesting even more so if you add in other chemical factors that were evident at the same time as the Hemiformal, the formaldehyde donor.

Other chemicals involved were 2-Aminoethanol & 2-Butoxyethanol both irritate the lungs and gut so using all three in vast quantities over a five day period five times in one year?

[TraceyFairclough]

Wow! I found this thread very interesting...

I was diagnosed at the age of 6. I was seriously ill with a bloody desease (Hyreditary spereycytosis) so I had to have my spleen removed which in turn gives me a lower immune system.. Since you say children are not born a Coeliac then I think HS must of caused it with me. Also after once on the GF diet I became well and had no more hosipital stays.. seem to remember spending half my childhood in hospital not being able to hold anything in for very long. At the age of 22 I began to eat normally again due to moving in with my now husband. It was too difficult and too expensive to make seperate meals so I took a chance and didnt notice a single side effect!

15 years on I couldn't walk very far as my hips were in so much pain. I also suffered with really bad pains in my wrists and could barely push a door open. 3 years of hell and i eventually went back to the doctors and was re tested for CD. The result was given to me there and then, I was shocked!! It was then I was told you never grow out of it and that it is a life long desease ;(

Now im 45 and generally stick to the diet although I sometimes cant face the hassle in a restaurant trying to explain so I try to choose things that I hope are safe. I never get tummy upset so in a way its too easy for me to do that.

I once ate a slice of the wrong bread by mistake (homemade got mixed up) and I thought I was going to die!! I was in incredible pain, sweating and throwing up for hours, so that was a shocking reminder for me.

Recently I suffered with strange fibrulations in my heart for about a week, after reading this thread I now think it must of been something to do with C/D.

God its amazing how many way in which it can effect us.

[Hidden]

Hi all.

I find the reference to the fact that children aren't born with coeliac disease interesting . I was of the opinion from my reading that people are born with a genetic predisposition to develop coeliac disease.

They inherit a particular genetic make-up (HLA type), with the genes DQ2 and DQ8 being identified as the ‘coeliac genes’. Environmental factors also play a big role.

In many cases, the condition will not have been diagnosed in other generations; however, a first-degree relative of a person with coeliac disease has about a 10 per cent chance of also having the condition.

I am the first diagnosed of my family however medical records of my late mother and sister would lead me to belive they could have been coeliacs as well.

Can anyone let me know if I am on the mark or way off course.

Thanks

[pretender]

My natural father died from Non-Hogdgkinsons lymphoma (as I understand it can come from untreated CD) His brother has CD and his brother's daughter has CD. My natural fathers son has CD and I have CD, my natural sister fails CD tests but is gluten intolerant while her two sons have CD. My two daughters have not said if they have it or not. On this basis in 2007 I was again tested for CD which was positive. Yes I am HLA-DQ2 positive but so is 40% of the nation.

[Hidden in reply to pretender]

And DQ8 ?

[pretender]

As I understand it DQ2 is the more common HLA, not looked at the DQ8 or DQ2+DQ8 as they do not afftect my condition. Having communicated with the Australian Coeliac Disease Society there are cases where coeliac's diagnosed as children have gone in to remission for many years only to have it triggered later in life, it appears I am one of these. (no comment from CUK).