diagnosed with coeliac disease 18 months ago kept to very good gf diet . Now in hospital with colitis /

[lessan]

Got to have further tests to confirm if this is colitis or chrohns, do you think this is quite common & will diet help with preventing flare ups

[Hidden]

Hi lessan, this must be very disheartening for you so I am sorry. I also believe that this is quite common and I believe that the longer coeliac eats gluten before diagnosis the more damage that is done by our own immune system and if our immune system attacks our villi then it is logical that it will cause inflammation in the colon. If you google you will find that there is a link with crohns and coeliac and microscopic colitis and coeliac. The most important thing is to try not to worry or blame your diet as stress makes colitis worse so in my opinion the most important fact here is that you are in the system and the NHS is amazing once you're in the system and they are on the case with your symptoms, a really good source of further info would be a crohns/colitis forum where this question regularly comes up.

With colitis they usually give the patient a low level steroids to strengthen the colon so it is very treatable and combined with a healthy gf diet can kept in check.

Please see:

sciencedaily.com/releases/2...

There is also a link with microscopic colitis and coeliac here's a link:

sklad.cumc.columbia.edu/cel...

Around 12 years ago my gut specialist wanted to admit me for further investigations as I went anaemic and they suspected internal bleeding. I stopped taking painkillers that I was given after a knee operation and my iron levels rocketed so I didn't have to have the investigation and they assume that i have microscopic colitis and I just avoid astringents like aspirin and alcohol and my blood levels are so good that I am a blood donor and am thinking about donating platelets one a month, so this speaks for itself.

I was really surprised that many people develop colitis after giving up smoking so this may also interest you:

patient.co.uk/forums/discus...

(I put the wrong link up first LOL)

Lastly good luck and try not to worry,

Jerry

[edev]

Thank you Jerry for this very useful information. I see you also have a website so will have a look there as well.

I've been gluten free for 2 years and still have symptoms along with anaemia, my haemoglobin went as low as 4 so I had transfusions to get it back to 12. Last December I went back down to 8 so will have to discuss further tests with my GP.

Emily

[Hidden in reply to edev]

Hi Emily, not all coeliac respond to a 'gluten free' diet because they have a reaction to the traces of gluten in them, like codex wheat products which are below 20ppm. And not all coeliac can tolerate 'pure' oats or the supermarket breakfast cereals that are coated with barley malt but below the codex limit of 20ppm. So if you eat these I'd avoid them for a while and if you still have anaemia then look at wheat deriv's which are highly processed and well within codex but some coeliac have a reaction to them it's mostly maltodextrin and dextrose and artificial sugars.

And with other coeliac it takes a few years for their villi to recover and there are those who have refractory CD.

So I hope that you feel better soon as it must be tiring still being ill 2 years after diagnosis, I'm good at stating the obvious me LOL.

Jerry

[lessan]

Thank u so much Jerry I am still in hospital & am going to look these up now. I must mention that my consultant has been fantastic, because I let it get so bad my body was going into shock I couldn't stand or lift my head. Came in for sigmoidoscopy & he admitted me there & then, he still keeps popping out of clinic to keep a check on me :-))

[Hidden in reply to lessan]

Well I feel for you and am sure that all members of GFG do, at least you're in good hands and having a positive attitude to the specialist helps as they respond to positive feedback.

I hope that you're out of hospital real soon and do let us know the outcome of your tests,

And best wishes from me and all GFG members.

Jerry

[Grew]

I am currently going through the same thing. All of a sudden, I look 8 mths. Can't touch stomach or small intestine area due to pressure and pain. Blood test normal, ultrasound normal, I go today to see gasto doc regarding colitis or what have you. But recently went oninimal foods diet, only had aloe Vera on empty

stomach, then plant protein with Ultraclear Plus PH drink for

breakfast along with b12/folate, Absorbaid enzymes ( with meals) Adreno Lyph 80, and started feeling great. I had to cut dairy, corn, (kept Cannyon bake house 7 grain bread), white meat, veges, (no starch veges), fruit, berries, green tea, salads. Now great but am still going to doctor and find out if there is damage. I'm real good for a while, then I become lax because it's all so hard to keep up and I wind up in the same predicament. The Ultraclear is amazing though to help bounce back.