Not diagnosed as coeliac but feel as if I am!

[Cairnperson]

Eight years ago I had toxic liver following does of penicillin for infected dermatitis. The consultant who saw me was concerned about some of my symptoms and did blood test for coeliac which was positive. So had endoscopy and that did not show that I was coeliac. However, the consultant felt that it would help me to a avoid gluten and so I have done so ever since. It relieved many of the symptoms that I had by not eating wheat gluten though did not eliminate completely. However, because I do not get prescriptions for bread etc I find foods expensive. Am not sure why gluten free bread has to be so dear and the nicest one have found is Sainsburys seeded loaf which is not as dear as some.

However I also suffer from reflux/hiatus hernia and so the seeds in the bread can cause me pain at times so end up having toasted cardboard (well it may well be!). I get a bit fed up that I cannot have sandwiches for a snack as the bread you get crumbles.

I am always looking for wheat/gluten free foods and even my dog eats wheat free as much as possible!

So I hope although I am not coeliac you do not mind me joining the forum.

Incidentally when I was a child I always looked like an Oxfam advert with big tummy and the teachers once asked my mother to attend as they did not think I was being fed properly! I also had no enamel on my teeth and they broke easily so had them out in late teens and have dentures since. This history is what made consultant think I had been coeliac and puberty had changed it and then after the menopause I started having symptoms. Not convinced about the change part though as often had stomach problems.

[Regalbirdy]

Hi Cairnperson,

Thanks for posting and sharing your story. Welcome!

Your story has some echoes of my own experiences. I also have tooth problems (but not as bad as yours), and can now look back to childhood and make sense of stuff that wasn't identified at the time.

However unlike you I do now have a diagnosis of Coeliac Disease - albeit relatively recently, towards the end of last year.

I hear what you're saying about the bread - it is expensive if you have to buy it. Making your own with a breadmaker probably works out a lot more cost-effective - have you tried this option? There are loads of GF recipes floating around, both on this forum and the wider Internet. You can put exactly what you like and what suits you in it!

[poing]

To be honest I don't know why the presence of antibodies isn't diagnostic for coeliac disease. In most other autoimmune conditions, it would be, especially when combined with a history and symptoms suggestive of the condition.

The "gold standard" of biopsy isn't all it is cracked up to be... it is possible for the disease only to affect some parts of the digestive system, and to miss out the parts that were biopsied. I wonder which parts of the digestive system are most likely to be affected, and whether it can only affect bits of the small intestine that are beyond the reach of the gastroscope?

I guess the consultant that told you to avoid gluten thinks you probably are coeliac! I wonder if you can find an enlightened GP or consultant to make an official diagnosis without insisting that you get a positive biopsy? There is a new guidance for diagnosing children on the basis of blood tests alone.

I don't want to get your hopes up, because it might go nowhere, but I think that if it were me, I would give at least ask to have coeliac added to my records.

[Cairnperson]

The consultant I saw was very good and understanding. He did say I could not be classed as coeliac due to negative gastroscopy. I would like to have seen him again.

However. Since then when I retired I moved to a totally different part of country and the GPs I now see are not as interested. I used to see a one GP practice but now where I am there are 16! So though I try and see one particular one it is not always possible. I am presently seeing a gastro consultant about heartburn problems and am due for a endoscope shortly (yuk) but that is not related to the gluten etc and as due not eat wheat/gluten would not show anyway.

Hve often thought about making own bread but do not have a large work area in my kitchen but still thinking about it.

[zoombie]

Hello Cairnperson. Have you tried the DS Range of Gluten Free bread and rolls. I know I get my bread on prescription but I like white bread now and again and I usually go for this one and I get the DS ciabatta rolls - these make a lovely bacon sarni!

[Cairnperson]

Yes, the DS ciabatta rols are good and like you say make a great bacon buttie! Not tat I ave bacon often as it gives me heartburn!

The gastroscopy only showed up what I Lread knew that I hard reflux and hiatus hernia. Gve me some stronger Proton Pump Inhibitors but they are not suiting me.