good and bad patches during recovery?

hi there - I've been 5 months GF since CD diagnosis back in August.

Up until christmas I've been feeling great, really much much better (it took 3 months to start to feel better). But I definitely got glutened a couple of times over christmas (one I can blame a certain supermarket for, the next my own stupidity... :D ) - felt a bit rough but nothing too drastic.

Now 2-3 weeks later I've had a week or so of awful symptoms, which show no signs of reducing. I should take out shares in Immodium. My question is, is this a delayed result of the gluten incidents (I'm fairly sure i've not had any since), or just part of the rollercoaster of recovery (I'd been symptomatic for a couple of decades so assume there's a fair bit of recovering to do).

I know I will just have to sit through it, but am curious as to whether others recovery was up and down?

thanks all x

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  • I've been gluten free for about 4 years but had to go back onto eating gluten 2 years ago for my diagnosis. I think I became more sensitive to gluten after coming off it the first time because when I went back onto it, I felt worse than ever. Since then it has taken months to feel better. I'm still on a ferrous fumerate dose for my low ferritin levels and probably will be for a very long time! I know you say you haven't been glutened but I've found, I've become so sensitive that I can't even bake with wheat flour for the children as it gets in the air and then I feel ill. If I eat out at friends, even when they are careful, I can get glutened. My friend opened up a tin of beans and afterwards I noticed the top was full of flour from being in her store cupboard so I had to open up another tin! It is really easy to get glutened without knowing. Hope you start to heal soon.

  • "Experience is a hard teacher, it gives you the test first and the lesson afterwards".

    I was diagnosed nearly 5 years ago, and went through a similar period afterwards. Through later reading I found out that once gluten free other things 'can' cause problems such as dairy, processed sugars and other additives, maybe because the villi are recovering and able to better absorb nutrients again. Some advice I have seen since advise avoiding dairy for the first three months, and introducing it slowly as the ability to process lactose is one of the first things to go and one of the last to return (I still cannot have dairy). Also, when newly diagnosed the temptation is to shop the 'Free From' aisle in Supermarkets (me too). Big mistake, there is little goodness in those things, and endless amounts of rubbish. If you are having issues it can be difficult tracking down the causes, but through experience and education it is possible to improve slowly. I would advise eating natural foods, fresh vegetables, cook any fruits eaten until the stomach settles (except bananas, though only eat them when brown spots appear on the skin) and a good bone broth for a couple of days will help settle a stomach. If the problem persists then it may be worth looking at specific diets aimed at addressing it such as SCD, GAPS or FODMAP. But work through your doctor and dietician first before going it alone. Good Luck.

  • Hi Tillyxx, firstly don't always blame gluten, everyone gets an upset stomach sometimes and there is the 'barking cough' virus that the queen has had and this virus can also cause gastroenteritis. I know as I've had the bug and it hit my guts.

    Another thing to bear in mind is that all coeliac are different with differing levels of sensitivity and on a recent post one member said how as well as being able to tolerate malted cereals they could tolerate real ale. We have other members who have a reaction to wheat derivatives like maltodextrin. (What interests me about maltodextrin/artificial sugars is that IBS sufferers are aware that artificial sugars can act like laxative in some)

    I get ill if I eat Branston pickle which contains malted barley but is below 20ppm so I avoid it and its these foods with 'allowed' levels of gluten that cause problems for a minority of coeliac. So we have to be very aware of what we are really eating and as you've been diagnosed a few months now I'd look at how certain foods,like malt, oats and codex wheat starch, affect you.

    BronB makes some very good points about cross contamination and one of my pet hates is supermarket conveyor belts as sometimes they are covered in goodness knows what, so I always use a self service till where I scan my things and choose which till I use.

    In answer to your question my recovery went really well as I avoided all gluten and made all my food from scratch but being a single dad with a full time job I tried prescription bread (it was 200ppm then) and I went down with IBS /anaemia and I got that on prescription. So I was very confused but now I avoid codex wheat, all barley products including malt vinegar and I avoid oats. And I feel fantastic for it and others are always commenting on how healthy I look.

    With an upset stomach it is a good idea to avoid lactose until it settles down and there is a simple hydrogen breath test that your Dr can arrange to see if you are lactose intolerant.

    So you have to find out what works for you and good luck its a steep learning curve for many of us.

  • by the way i could weep with envy at the notion of being able to tolerate a pint of real ale :( :( it's the only thing I can't quite find a substitute for.... I am trying to love a pint of cider but it's not doing it for me, and i can't get my head around sitting in a pub without a pint in front of me... :D

    (i am aware in the grand scheme of losses in life this is a small one but still...)

  • thanks for the answers - much appreciated, this coeliac world occasionally feels a lonely one ;).

    I've been lactose-free since the diagnosis (I don't find this particularly hard to do, so it made sense to do it to cover all bases) and have avoided oats in any form, and make all food from scratch (with the odd very occasional lapse - which I probably need to resist...).

    I'm pretty sure this isn't a bug (tho it did cross my mind) - the particular symptoms I get are so very specific and recognisable. The good news is that my gut feels normal this morning for the first time in 10 days - a real joy.

    I do think you are all right and it's part of learning how my body reacts to things - I guess in a year or so it will feel there is a pattern to it all, hopefully.

    thanks again x

  • A couple of things worth knowing about if you are lactose intolerant is that yogurt matured for 24 hours is virtually lactose free, I use the lakeland yogurt maker made with about 1/2 cup longley farm yogurt as a starter, and that morrisons extra mature cheddar with 'nil' carbohydrate sugars is also virtually lactose free. I can tolerate both even though I cannot tolerate dairy normally.

  • I have also heard that hard cheese and greek yogurt are both more tolerable for people that are lactose intolerant.

  • Make sure your toothpaste chewing gum shampoo and any medications you take are gluten free also. Sorbitol is a sweetener used in some gums and it can be from wheat.

  • Whoever mentioned coming off codex wheat starch, anything with malt barley etcetera - I agree. My daughter is highly sensitive to tiny traces of any gluten since being diagnosed. Eg even though some cereals have very low levels of barley malt extract in them which are suitable for coeliacs - we don't touch them as they set her off. She still gets a "bubbly tummy" regularly in the week so my next port of call is to try cutting out maltodextrin.... I have spoken to the dieticians at Coeliac UK and they said some people are just ultra sensitive. Oh and try avoiding all oats even if they say gf oat or gf oat flour.

  • I was just about to reply, when I saw the above post which has already mentioned it! When I was first diagnosed 8 years ago I was given bread on prescription, which contained codex wheat starch. It took me a couple of years to realise that, just maybe, this was what was affecting me, and I didn't really start to feel that much better until I stopped eating anything with codex wheat starch in it, even though blood tests showed I was better in that my vitamin levels came back to normal. I can never really understand why they have to use it as it must be highly processed. Clearly it's fine for some people, but not for me. I also agree with the above about oats and oat flour. Sometimes there has to be a lot of trial and error, but I understand that coeliacs are quite likely to be reacting to more than one thing in their diet.

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