2 months post diagnosis and going GF, tummy still not right. What's my next step?

I was diagnosed after an endoscopy two months ago and the dr said my intestines were severely damaged. I've been gluten free for the last two months. I have been eating free from foods as I'm not a fan of processed food anyway and can see from reading here there is a fair amount of controversy regarding ingredients. I'm also not eating oats.

However, my tummy still really isn't right and at times is worse. I've yet to have my dietitians appointment.

I'm thinking I've two next courses of action. I could change my wooden cooking utensils or get myself a separate chopping board or butter which I haven't done so far. I am careful re crumbs but they may well sneak in The other thing I thought of was the lactose issue. Should I cut this out and see what happens?

Which would people recommend trying first or is it worth doing them together? Or, are there other courses of action people could recommend?

The tummy issues aren't painful but I would like to see an impact from all my denial!! Thank you!`1

5 Replies

  • Hi Galey, you definitely want to have your own butter/spread it would also help to have your own wooden utensils and it's a really good idea to have your own toaster and if possible preparation area in the kitchen.

    What I would do is when you're not feeling hungry or anxious, is to do an appraisal of your kitchen for possible cross contamination issues and this is something that you have to take responsibility for as it is you who is affected. But your family will want to help you get better.

    As for main meals it is very easy to cook a main meal for all the family that is gluten free so you can all enjoy a nutritious meal.

    Now if your intestines are badly damaged you might want to check out refractory coeliac disease and here's past posts on here about it:


    And good luck and I hope that you start to feel well soon.

  • Hi galey,

    It sounds like you've really done your research - and done a good job!

    You're right to be concerned about cross contamination, it could very well hold back your recovery.

    You're also right about the possibility of having a lactose intolerance - 20% of all Coeliac's are lactose intolerant at the point of diagnosis.

    If I was you I would do both. However if you do decide to give up dairy products, please DO ensure that you have a good alternative source of calcium and vitamin D in your diet. Osteoporosis is a real risk if you don't.

    Recovery takes time - I am still making adjustments over 18 months on from my diagnosis. The latest thing I have discovered is that too high a dose of magnesium in your supplement regime gives you the s**ts! Ahh well...at least it isn't gluten!

    Good luck - and hope you can figure it out.

  • If your GI specialist said that your intestines are severely damaged, may take more than two months to heal completely. Is your stomach consistently painful, or just after food? Could be a dairy intolerance or something like that. Why don't you try an elimination diet, or at least keep a diary of food/drink and any symptoms/adverse reactions and see if you can identify anything. Your dietician would ask you to do this for at least a week before seeing them, or giving you a diet plan anyway. Hope this helps!

  • Hi! Sounds like you're doing well so far. I was told that recovery takes 1-2yrs and not to expect too much too soon. The repair process to the gut will take time. Part of the enteric nervous system, the gut has the same number of neurones (nerve cells) than the spinal cord and it is often referred to as the gut brain. Here is some more information which I've just found myself. psychologyofeating.com/brai...

    Nerves take a long time to heal, they only regenerate at a rate of 2mm per month!

    On the functional side I've been following a whole foods plant based diet which is gluten and diary free. I ensure I gain all the nutrients I need through seeds, nuts, sprouted legumes, fruit and vegetables. The only supplement I take is vit B12. This really suits me as I also have IBS but it's right for everyone. It's time and trying things, one at a time, which will tell you what's right for you.

    All the best

  • Thanks for the info, I think I was expecting too much too soon. I noticed immediate impact from going gf but that seemed to wear off and I felt a bit disheartened, perhaps I need to be more realistic. Thank you for the link to the brain/stomach thing, that was really interesting. Just need to keep plodding away I think, though the novelty is now wearing off now and I'm starting to feeling like an alcoholic or just given up smoker staring lovingly through the bakery window!

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