Totally confused.

[Cardlady]

Hi

I am new to all this and very confused. I was told I had CD and went on a GF diet. The improvement was unbelievable. I also have an intolerance to beef and milk. As I was still having problems with my joints, foggy brain etc it was decided I would see the "specialist". He decided that after my blood tests I had CD, most definately!!!!! Then I was told to go back on normal foods for 6 weeks and i would go in to have an endoscopy. It was 6 weeks of hell, lots of it spent in bed as you can imagine. I went into hospital and discovered I was to have both an endoscopy and colonoscopy. Couldn't wait to get it all over with and sure that it would all be worthwhile. How wrong was I. Everything clear and the biopsy that was taken is ok. So now he says its IBS. I dont have any IBS symptoms, I know I don't. I don't want to have Cd but if I follow the CD diet and ensure I dont eat the beef, or mik I just feel so much better. I am so confused and at the end of my tether. Story told - can anyone shed any light for me. I feel so terribly depressed by it all.

[FionaGFG Administrator]

Cardlady - you are not alone. Some people have had up to 4 or so endoscopies before they eventually take it from the right bit of the duodenum where the damage is. Another interesting point that is widely becoming accepted in the medical community is that the diagnosis of coeliac is by blood test + biopsy which shows completely flattened villi. Now - if you're villi aren't flattened does that mean you don't have CD? Well according to UK & many other countries - yes it means you aren't a Coeliac. However, researchers abroad have been looking at what leads to coeliac disease. Does it suddenly pop up & your villi are flattened? Nope - as many of us know we had wierd and wonderful signs for years and then one day a lovely Dr joined the dots and we got diagnosed. So often what comes before is gluten sensitivity which can include many of the symptoms you've mentioned. This is still a debated area - in some medical circles coeliac disease is seen as the end stage of gluten sensitivity.

So it's hard to know what to do. On the one hard if you've identified what's causing a problem it's tempting to cut those foods out. On the other you need to bear in mind that a gluten free diet is not necessarily healthy unless you are a coeliac as you'll miss out on a lot of vitamins + nutrients. So i'd recommend you ask your Dr for further allergy/ intolerance tests related to food & to see a dietitian. There is something called the FODMAP diet that Kings College London have done work on (based on Australia's research) which identifies complex carbs, sugars, fruit that is hard for many people to digest. Only a qualified food health practitioner can guide you through a food diary on this diet to see if it's any of these trigger foods (which includes gluten). This is a diet which is often being recommended for Coeliacs & IBS patients so what i'm really saying is that the end result - ie you remove the bad foods & feel better - could be the end result. But only do so with medical advice/ support.

Here's some useful links:

online.wsj.com/article/SB10...

onlinelibrary.wiley.com/doi...

fodmap.com/

[beckyf]

yes - we found the DNA test useful as well - though we had to pay for it privately & send sample to lab in USA. It has been accepted by NHS consultant here though......