Finally a gp that gets on with it

as some may know I have not been diagnosed as having coeliacs and probably never will. 3and half years in with major symptoms after being passed from pillar to post I have finally got a gp that is prepared to do the relevant tests. Been watching my bloods now for the last year. B12 steady now with 12 weekly injections. Folate has now been proven that I can't go past 6 months without having to go back on the tablets so has now been decided that I will now do the 4 months then go on maintenance dose. Have just had my vit d checked after going to my dr and moaning about joint pain and she was shocked that I hadn't already had it checked. And yes I'm on the meds starting today as it is too low. Not seein consultant until end of May who all he says when I see him is that I have to eat wheat and gluten to be able to diagnose me. Well I know my answer to that NO. Doing well wheat n gluten free now for over a year but must admit this last month has not been good due to low folate and vit d levels and a mysterious pain attack. The only thing I added to my diet the last couple of months is tesco sour cream/chives. Garlic/onion dip and tsaziki. 2/3 times a week max but it does seem to have hit me like a ton of bricks. My b12 although still in range has plummeted more than ever. So if anyone can give me an idea on these dips I would gladly love to hear it x

5 Replies

  • Some people who are coeliac/gluten intolerant also react to dairy products. Also there might be hidden gluten in the dips, or something in the ingredients not easily recognised as gluten?

  • I went gluten free nearly two years ago (negative blood test for coeliac, but all the symptoms and family members have it) anyway, found I was still having issues occasionally, narrowed it down to cucumber and melon. Thought it was a bit weird, a friend did some research and it turns out they are from the same food family / have the same enzyme - I can't quite remember. Anyway, Tsaziki has cucumber in, which is why I can't eat it.

  • Hi tetloww, many things could be affecting you and I agree about lactose but it could be something else like the rapeseed oil in the dips. I was in my local whole food shop and it was close to lunch time so I was hungry and I bought some Tartex organic mushroom pate which's gluten free and went home and had some on toast for lunch and it was lovely but later it was like I'd had a very powerful laxative. I thought it might be just an upset stomach and had some more the next day and the same thing happened. The pate had palm oil in it and I have found that many foods with palm oil in them act like a laxative for me. And I avoid many foods that contain oils and I get the same with Tahini, a sesame seed spread I actually really like it but it does not like me!

    So as well as avoiding gluten we have to find what other foods disagree with us, I have read that many coeliac do not absorb fat well so this would exacerbate a reaction. And going back to lactose, lactate the enzyme that breaks down lactose is produced at the tips of our villi so if the villi has not recovered then the gut cannot break down lactose properly. So it could be well worth you avoiding lactose especially for a while.

    Stating the obvious you do need to find the cause of your B12 deficiency as the injections are only a treatment but not a cure, our bodies need folic acid to help absorb iron so it is important that you have a full blood screen checking your vitamin, mineral levels and take supplements for all deficiencies, the chances are that you will also be low in vitamin D because of the time of year.

    I'd also talk to your GP about your reluctance to go on a gluten challenge and take it from there.

    And I hope that you get things sorted and feel better soon.

  • Thanks all. I do have dairy issues. But as long as I spread it out during the week I'm normally ok. The dips were the only new thing in my diet over the last year and because I was having the I cut down in the other dairy. It seemed to take about 2 weeks to bring the symptoms out tho. So this has confused me and didn't realise it was them causing the problem for another week. It took 10 days of not eating the dips for me to feel better again. As for other intolerances I had a hair strand test the other year. That did show cows milk. Certain seeds. Tea ! And lettuce! Wheat oats and some ransoms I was shocked. Again wheat and oats are the ones I totally avoid but the others I seem to tolerate slightly but do try and avoid if possible. As for my bloods Jerry B12. Folate and vit d are all being controlled with medical intervention. I am wondering what the consultant will have to say about that. I have had all the procedures to rule out bowel cancer Crohn's disease inflammatory bowel. X

  • I also hope you get sorted out very soon....but....most of us older coeliacs took years and years to get diagnosed.....I just went back and back and back to speak to my doctor always keeping notes....but not showing my doc all the notes, as did not want to sound too over the top...but then once I got to see a specialist....I did give them all the info to work with....and even now....Yes I agree you may be sensitive to other food ranges...and I can see that myself, fat is a problem, (plus lots of foods) as I see the next time I visit the loo.....Floaty poos (whoops sorry) but yes it happens to the best of us....Keep with it...and maybe, chat to your Doctor, on the merits.. would he expect his loved ones to suffer the way you are???? and does he not owe it to you, as your GP to get the very best care for you......BUT...I'm afraid you may have to go down the Eating Gluten Trail.....I'm afraid....Even suggesting....Yes suggesting that they hospitalise you while they introduce Gluten to your diet..(and let hospital staff witness how you are with Gluten and how quick it makes you ill ).I have heard of it happening....Oh well....Take Care....

    please dont think Im over the top with my remarks....its Just I do know how hard and long it took me to get diagnosed....but once I'd decided it was Food that made me ill....I stopped eating, for six weeks, except for a Biscuit with a Cup of Tea....But when I had my biopsy it did show the damage done to the Villi....

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