Still getting symptons

Hi all am fairly new to this (diagnosed about 4 months) and on a gluten free diet. Am getting bowel problems similar to when I was eating gluten that seem to have started over last two weeks. Am trying to avoid cross contamination although I live with others who are on a normal diet I am really careful to re wash items I use. I seem to have a lot of acid indegestion and in my bowel. Is this normal and how long before it stops as it is worrying me? My Gp should be my first call but unfortunately she's as new to this as I am and I'm losing confidence in her.

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  • Hi Easiand, firstly I'm sorry that you are still having issues with your gf diet. Now firstly do you eat malted breakfast cereals that are listed as suitable for coeliac? because many coeliac cannot tolerate malt regardless of the level (me included) if you are I'd avoid them and then if you are still having issues if you get codex wheat starch products on prescription switch to the wheat free varieties.

    Next if symptoms still persist I would then try avoiding milk and use a lactose free milk as many coeliac are temporarily intolerant to lactose, this is because the enzyme that breaks lactose down, lactate is produced at the tips of our villi.

    Then I would go on an elimiation diet based on foods like rice or potatoes with veg and keep a food diary and introduce foods so that you can monitor their effect on your body, this might sound a bit like hard work but if you're suffering and this works then it's well worth the effort.

    I would also see a dietician and I hope that you start to feel better soon.

  • hi hope you feel better soon i was diagnosed 18months ago and had to stop eating dairy butter and also cart tolarate coffie brings on the runs eggs make me feel sick too i think u have to find wots good so best luck

  • Thanks Jerry/Barny I will try the elimination diet. I suppose I have been fairly naive about this thinking the gluten free diet would solve my problem and I'd just get back to normal after. I had severe symptoms for about 2 years before diagnosis and don't know how long I've carried the disease before as I've always been very underweight whatever I eat. My doctor was very surprised by the result of my blood test (which was just a general test) despite the fact that I had been to her for many years for stomach problems. I suppose the damage that's done has taken some time and will take some time to heal.

    I'm please I found this site as I have learnt more about cd than I could have ever learnt from my gp or hospital. Thanks

  • Just thought I'd mention this. Went to see my gp today as am feeling pretty washed out and as I need to have my iron checked. I mentioned the problems I'd been having and the advice given on this forum. She told me that she didn't see any reason why I should have a lactose intollerence and that once I started on a gluton free diet my intestines should return to normal within a couple of months. Now to be fair she isn't a specialist but surely a gp should have a basic knowledge of all diseases and certainly shouldn't be that wrong! Have decided I have completely lost confidence in her and will now just rely on my dietician and hospital doctor and of course this site

  • Hi Easiland

    I never fail to be shocked at the level of ignorance of some of the GP's. Granted they can't know about every condiion, but you'd think if you were still having issues & you brought up this suggestion re lactose, she'd admit she wasn't sure & look it up & then she'd learn something new about the condition! Definitely follow Jerry & Barneys advice. Hopefully once you find out what's still irritating you & give it up, you'll be further along the road to recovery & then after you've given your body a year or so to heal properly, you may then want to try reintroducing those non gluten things to see if you can then tolerate them. The hard work & effort will definitely be worth it & have faith in your instincts & listen to your body & you will get there. Good luck.

  • Hi Easiland, sorry to hear you are still struggling, I think everyone is different and you just have to keep eliminating items for at least a week or two then reintroducing them until you find the culprits.

    I can eat cheese but not whole milk or cream. I buy lacto free semi skimmed milk and use lacto free spreads, that seems to help a lot. Of course eating out is difficult as most cafes use full fat milk in tea or coffee!

    I have struggled on and off for years now with various foods, but things have improved over time. Your GP needs educating I think...The latest theory appears to be that your body can think some foods contain gluten even when they don't and go into attack mode, this theory is still in the investigation stage but it would explain why I for instance can eat something one week and be violently ill the following time.

    I find I can eat fish/meat/fruit/veg in unlimited amounts without causing any symptoms. Anything else I have to be careful of as so many processed foods have hidden gluten. It took me months to realise reading all the info on the labels was essential, I discovered that after getting glutened by some oven chips, and found they had added wheat flour to make them crispier...

    Some yoghurts I am fine with as well as GF breads and rolls, though I don't actually think my body likes them much as sometimes I need acidophilus to settle my tummy down.

    Talking about that I would recommend it to try, it does seem to keep the gassy effect under control!

    Good luck with getting used to this, you have found the right place for help, it does get easier I promise..

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