I was wondering when you were diagnosed what were you told of the implications of not following a gf diet.

[dinger]

Was it made clear to you of the long term damage you could do to your gut. The risk of stomach or bowel cancer. Osteoporosis or the risk to your mental health.

[Mia1057]

Yes I had a great doctor who told me all the risks of not following a GF diet and said even if I didn't have a reaction to something that I ate that did contain gluten it would still be doing me damage.

[Hidden]

Yes and the coeliac society have also helped.

[dinger]

I was also made aware of the implications from my fantastic gastro consultant and gp. I was just wondering why people who have been diagnosed with coeliac disease decide that following a gf diet is not for them. Are they not made aware of what will eventually happen to them. It worries me that these people are being let down.

[pretender]

Not advised of any ill effects if I strayed from the GF diet also not told that the GF diet did not suit all coeliac's. This has caused years of doubt as to what the medical profession are advised and having been diagnosed in 1955 I came off the wheat free diet (as it was then) in 1962 only to be re-diagnosed in 2007 following chemical poisoning X 5. Surely if gluten has to be avoided then why are wheat derivatives used in GF foods? even low amounts may still cause damage as others state.

[weee]

Not particularly, my dietitian stressed how important it was to be gluten free but no one mentioned the 3 types of cancer, the osteoporosis and the anaemia I could be subject to, well maybe vaguely. I am a nurse though and was somewhat aware. Coeliac UK helped a lot in the early days.

[SilverDreamMachine]

This may have been done to death and if so apologies, but is there any clear evidence of CD causing various cancers etc.?

[Penel in reply to SilverDreamMachine]

I'm afraid there does seem to be a link. Have a look at the PubMed site which summarises scientific research.

This is one article. ncbi.nlm.nih.gov/pubmed/173...

[SilverDreamMachine]

Hi Penel, Thanks for the link. Like many clinical trails reaching unequivocal conclusions isn`t easy. I note they mention caveats and the base conclusion of their trail was, in my lay terms, `if` CD causes more risk of cancer, then an earlier diagnosis is likely to reduce that risk. Common sense if the risk is real.

My query is more about any hard evidence relating to the `risk` e.g. we now know that fags cause numerous serious health risks. I wonder if all cancer patients are routinely logged if they are diagnosed with CD and those that aren`t tested. In this way we`d build up a body of empirical evidence relating to any links between CD/Cancers, that would help inform future debates.

[vince]

I stick to the diet and four years in, still ill hair falls out, tired, i fall over, don't heal well and mental health has died. I read up myself about side effects and thought if i didn't stray i'd get well. I'm sure gps think i'm cheating. ow well maybe its my age.

[rollonsummerrunning in reply to vince]

Vince, it might be an idea to have your gp investigate the possibility of another auto immune disease? I suffered similar problems and was diagnosed with hypothyroidism, another auto immune related disease.

[Regalbirdy]

Vince

I hope you are able to read this post. I was still having problems with fatigue and balance after being on a GF diet for months. 

It turns out that dairy and soya foods are the causes.

Stupidly and despite knowing this, I ate some soya cheese the other day. About two hours later I was hit by serious fatigue. The following day I had balance issues as well.

Dairy also gives me dizziness and real fatigue problems. On top of that it causes brain fog and GI issues.

You may also wish to have your vitamin D and B12 levels checked. The GP found I was deficient in both - which didn't help either! (there is a suspected link between vitamin D deficiency and depression).

What I am saying is that you may want to investigate whether you have other food intolerances and vitamin imbalances in addition to gluten.

Hope this helps.

[vince]

no it was not made clear at all. I was told after second biopsy they would check me again next year to "see if i was cheating" bloody useless, I even filled in questionaire and told them of problems no reply, no surprise.