Gluten Free Guerrillas
8,426 members3,484 posts

How may coeliacs haven't gone GF because the fear of being glutened seems worse than the original symptoms?

I've had +ve bloods but still await biopsy results so am not "technically confirmed" cd. My issue is that I only have relatively mild reflux with no other recognisable cd symptoms.

Comments from some of those on a gf diet seem to indicate that being glutened is far worse than the original symptoms.

Has any one with cd [whether symptomatic or asymptomatic] not gone gf and remained relatively OK? Or do symptoms inevitably deteriorate without a gf diet?

14 Replies

For me there was no option. Long term consumption of gluten if you are gluen sensitive(irrespective of whether it is gluten intolerance, allergy or coeliac disease) will result in damage to your gut and longer term increase the risk of:

a) Bowel Cancer

b) Deficiency related illnesses

c) Other food allergies and intolerances (as damage ot villi in the gut will create increased risk of lactose issues and a leaky gut (caused by longer term damage) will increase the risk of developing additional food allergies and intolerances.

d) Other autoimmune conditions, such as Rheumatoid Arthritis

= more serious illness, less food choices, more suffering.

Just not worth it for the occasional feeling a bit "crappy"


1 like

How do you mean Lactose issues. Doctor rekons you have to have it diagnosed at birth to have lactose troubles.. That is when I said thought I was lactose intollerance and could I be tested. Was having abdominal probs, mouth ulcers etc., Heaps better on soya milk.


In coeliac disease, if gluten is consumed the body's immune system attacks the projections lining the gut (the villi) and this causes them to be damaged and be flattened preventing food from being absorbed properly. There are areas within the villi that produce lactase which is an enzyme that helps break down lactose, the milk sugar. With someone who has been freshly diagnosed (and still eating gluten), this damage can result in insufficient lactase being produced, giving rise to a lactose intolerance - undigested lactose passes into the gut which stimulates gut flora into producing toxins and some gets fermented. It is this reaction which causes some of the symptoms. In some people, permanent gut damage may have occurred resulting in a more permanent reaction to both gluten and lactose.

Lactose or milk protein issues can occur in coeliacs anyway - with the damage to the gut wall caused by gluten, undigested food molecules can cause a food intolerance or pass into the blood stream and result in a food allergy.

Some children can have lactose issues - but your doctor is incorrect as anyone with a leaky gut or genetic predisposition to food allergy can develop food reactions. This can be triggered by gut damage caused by a virus, use of certain medicines (aspirin family), excessive consumption of one food (particularly sugar) and even from eating certain foods (fresh pineapple and papaya can damage gut lining as they contain powerful enzymes).

If you find you are better on soya milk, carry on!!!


Sorry should have said that lactose intolerance is not uncommon in freshly diagnosed coeliacs because of lack of lactase; however many recover once on a gluten free diet as their gut recovers and can consume lactose.

However, a Swedish study trialled the introduction of milk into the guts of coeliacs and found 50% of those tested exhibited coeliac-like reactions. From a survey I am running currently on 25% of people who have responded so far with food-related illnesses say they have issues with milk (the highest). (please feel free to do the survey by the way!)


I agree Coeliac disease is not an allergy it is a very serious autoimmune disease and maybe' causing you lots of damage not just to your gut but to the rest of your body. I have osteoporosis and a range of autoimmune diseases. Don't take the chance. Being glutened is bad because once you get all the gluten out and your villi have got better then you are inflaming them all over again.

1 like

Hi Boxer, It is quite strange when a person first becomes aware that they are a coeliac. Especially if diagnosed as an adult. In many of us, the response from eating gluten has worsened from the time that we first found out that we had to avoid gluten. I for instance, believed that I had a wheat allergy. Wheat was the trigger that made me feel ill. Before being diagnosed as a coeliac - I went out of my way to avoid wheat but occasionally had rye and barley and of course didn't have a clue about dextrose and the fact that some gluten free foods do contain small amounts of wheat.

Once diagnosed - stupidly, I thought they surely must have it wrong. There is no-one in my family with coeliac disease - it is wheat that affects me! This was my biggest mistake and it was a hard one to learn. I purchased some rye bread and had a lovely cheese sandwich - an hour later it came back up again. A whole three months went by and I decided to have another slice of rye bread - this time not only did I bring it back up again, I carried on wretching for hour after hour and when I had finished found that my throat and uvula had been skinned. I was raw inside - I felt as though someone had taken a scourer and rubbed me until I bled. I discontinued eating rye, and barley .. and eventually oats too were off the menu. I joined this forum and began to learn as much as I could about what this disease is all about and what would happen if I ever ate any amount of gluten again. I suppose you could say that here - people offer advice that isn't available elsewhere. There are many food items that are listed as safe on coeliac food directories but they contain gluten and I learnt to avoid them. Since making sure that I avoid all possible foods with gluten in and trying my best to avoid any cross-contamination - not using the same knives/butter/chopping boards/t-towels, etc .. my health has improved beyond all measure. I would not ever knowingly risk making myself ill with even a pollen grain's worth of gluten. Added to this is the fact that gluten damages organs, bones, muscles, sinews and our very precious hearts and brains as well as making it ever more likely that we develop secondary autoimmune diseases, cancers, bone loss, memory impairment and allergies to other food groups.

If you have had initial positive results - then this is the time to begin cleansing your body of gluten and allowing yourself to begin healing.


Hi boxer I agree 100% with the above as it is your body that will suffer from ingesting gluten so it's not worth it.

The prospect of a gluten free diet is daunting but the harm you would be inflicting on your body is just not worth it and you would pay a heavy price in the future methinks, so my advice is embrace the diet and take it one step and one day at a time.


I'm certainly more sensitive to gluten now and will throw up for hours and have a tender tummy fro days if I eat gluten.. But its not the short term effects that worry me, and keep me GF, it's the long term effects. I have already been diagnosed with a degree of osteopenia so I want to prevent any worsening of that . I take calcium and Vit D and stay GF..



I had been firmly in doesn't make me ill anymore so why stick to it bracket...but what was happening to me was inward problems like severe anaemia.

There are lots of long term health problems that can come from eating gluten.

However much as I am sticking to my gf diet and feeling unwell I'm kind of stamping my feet like a two year old having a tantrum because someone won't cure me or tell me eating gluten wont be the death of me.


Gluten could very well be the death of you if you consume it as a coeliac.

Increased risk of bowel cancer and considerably increased risk of developing food allergies which are not "annoying" like food intolerances; with food allergies there is a progressive worsening if exposed to the allergen, leading to the risk of anaphylaxis. This can be deadly.

Not being negative, but there is a hidden payload with Coeliac Disease and every coeliac should understand the risk of continued consumption.

(not having a go, by the way, just stressing the point generally that this is serious).


It might also be worth looking at the article Robyn GFG nutritionist wrote about this last year


Ive always been ok with eating most things, even after biopsy confirmed CD in 2004 I carried on with a normal diet. Until early this year, since then Ive been admitted to hospital numerous times and have been really poorly, doctor said to try a GF diet, which I have and now if I eat the slightest thing It affects me alot. Doctor said this is definatly because I havent stuck to GF diet for years and now I have alot of aches and pains and may have caused other problems.. Definatly isnt worth it now that I think back! GF is 100% better as soon as biopsy confims.


I have been diagnosed for 8 yrz after being misdiagnosed for many years previous. Eating gluten is certainly not an option for my symptoms did get worse when accidently glutened and i now have to carry an epi pen as the result of anaphylaxis. Its not choice its à lifestyle. I do not understand any coeliac who knowingly eats gluten given the endescope result .


I've done some reading up on this and one of the problems apparently in around 50% of sufferers is that they can get cravings for the foods that make them ill. The cause is that most coeliacs will have a leaky gut, this allows food particles to enter the bloodstream.

Apparently some gluten and milk proteins can be broken down as part of the digestive process to create substances which behave similarly to endorphins - these being the natural "feel good" substances triggered by the body (and which opiate drugs mess with).

These food components called exorphins can latch onto endorphin receptors as they are similar to endorphins. The net result gives rise to a "feel good factor" and can lead to a mild addiction of sorts. Albeit not as severe as opiate drugs.

The cure is to give up the foods and in many people this gives bad withdrawal symptoms, they do pass and the issue goes away.

So whilst some people blame themselves (or are blamed by others) for being weak, it may be that they are suffering from this unusual "addiction".


You may also like...