Still symptomatic 18 months later

hi all,

I was diagnosed coeliac a year and a bit ago (borderline bloods, but biopsy showed "sub total villous atrophy", which I assume means fairly conclusive).

I'm very VERY careful re gluten and am sure as I can be that I'm not getting cross-contaminated. I don't eat out, and take my own food to mates houses if eating at theirs.

I am lactose-free.

However, I reckon 50% of the time I still have symptoms (basically diarrhoea and stomach pain - enough to have to take imodium and buscopan, so probably 3 times a week). While this is 50% better than it was before diagnosis I'm struggling not to feel a bit disheartened.

I eat mainly whole foods, cook my own bread etc. There seems to be some definite triggers (lentils and pulses, which breaks my heart as I love them, I'm wondering also about cornflour but have yet to really put it to the test).

I've got an appointment with gastro consultant in a few days (annual check up thing, I think - though it might be due to pressure from the dietician at the hospital who I've seen a couple of times). Any suggestions as to what I should ask of him, how to go forward?

And can anyone reassure me that it's just taking time ?

[Penel]

Hi Tilly

Sorry to hear that you are stil having digestive problems. It may wel be that your insides are still healing, the length of time varies so much between individuals. Have a look on line for information about 'leaky gut' and how to repair it. Michael Mosley's latest book / website on improving gut bacteria might be helpful (The Clever Gut diet).

You could perhaps keep a food diary to see if you can pinpoint your triggers? Bear in mind that legumes and pulses can be difficult to digest for many people, not just coeliacs. It took a few years before I could tolerate legumes and pulses, just occasionally, after careful soaking etc.

You may just need to stick to a limited variety of safe foods for a while longer. You have seen some improvement, so hopefully this will continue.

I would also recommend reading Sarah Ballyntine's blog "The PaleoMom" which has advice on food.

thepaleomom.com/start-here/...

[pretender]

If you are still getting Coeliac symptoms then your diet cannot be right, check your level of sensitivity by doing an elimination diet to find out why the symptoms persist.

There many reasons for “ sub total villus atrophy” so worth googling to see what might fit your condition.

[Hil101]

I had continuing symptoms for some time after diagnosis and thought I would never get better. For me, dairy made me unwell but eggs made me far worse and it took several days to get better if I ate some. It took me ages to realise eggs were a problem. Malt vinegar also, tho coeliac uk at that time were assuring me it was gf (!). Apart from that, onions, leeks, peppers and un-degorged (salted then wiped) aubergines still cause me some discomfort if I eat any big quantities. Oh, and millet and oats - my body still registers both as gluten. After a period with no dairy products, I slowly became ok with them and can now eat cheese, milk etc normally. Best of luck - you should. Get there in the end.

[patricia1040]

One suggestion would be to get a food intolerance report which will show you the foods to avoid while your stomach heals Here in Canada the test is $325 through Dynacare

[Penel]

Just a thought about home-made bread: if you are using xanthan gum this may be causing problems. Even a small amount of xanthan gum can act as a laxative for a sensitive gut.

[Hidden]

hi all - thanks so much for the replies. It is unbelievably helpful to get others take on it all. Much appreciated.

I think I probably need to bite the bullet and take it back to more basics.

I don't THINK xanthum is the issue as the good days I have (which are VERY good ) I've always had the bread including xanthum. But I guess it may not be as simple as that...

I think I'll ask the consultant if they'll biopsy me again - it would be great just to know that the gut is healing, if not healed.

[Hidden]

Ok... alongside vague mutterings of refractory coeliac and larazotide or azathioprine (one of the two - i didn't take notes and it definitely had z's in it - am guessing more likely azathioprine ) consultant is sending me for more biopsies and raft of tests.

In the meantime I am back to total basics. Meat veg and fruit pretty much just to see if it helps. Can't jettison the coffee yet!. Wish me luck

Thanks again x

[Jacks]

Have you thought about FODMAPS? Helped me enormously when I was first diagnosed. Still have some bowel probs with some "healthy" foods.

[Hidden]

That's a good point Jacks. I did fodmaps for a year before diagnosis (when gp said I had ibs). I was so relieved it was just gluten I had to worry about or so I thought. Will dig out that old app

[virgolizzy]

Also when you go back to a basic diet to help heal your gut, you may find Enterosgel helps. I find it a godsend & hate being without it.

[Hidden]

Noticed someone followed this - thought it might be useful to report back. I ended up being diagnosed with bile acid malabsorption which is often linked to CD. Im on meds for it and it’s been life-changing. So don’t be fobbed off if your gut (ha) instinct is somethings not right. I got through 6 doctors insisting it was “just IBS” on top of coeliac til one referred me. Happy ending