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Is it worth it?

Posted , 2 users are following.

Jellyncustard13
Jellyncustard13

I have been very unwell with diverticula flare ups lately, but now seem to have them under control. ( all quite new to me )

Now my Dr tells me that she is concerned that my coeliac levels are steadily rising. ( I've had a number of blood tests recently, but nothing to do with coeliac) I said I,ve been down this route a couple of years ago, ending up with a camera test, which said stomach was 'patchy' but not enough to be classed as coeliac.  Dr asked me if I had given up gluten before test,..yes I had, then when appointment was received, it said to make sure and eat a normal gluten diet, which I did for a week or so. She now believes i have had a false negative result because of not eating enough gluten previous to test. ( I wasn't told to ) My blood test count leading up to this was 95. Letter from consultants thought this was quite high......I have only seen this letter now two years later.

She is now concerned that I now show 15 I said it did'nt seem much, she said I should show under 5 .

Dr then suggested I do all tests again but make sure and pack in the gluten ! 

As I am also now I'll with acid reflux my question is ...is it worth it to get a prescription for bread, can anyone tell me how much in money terms you are allowed each month? I am 67 so don't pay for prescriptions, and I am not particularly well off.  Hate the thought of going through it all again.  Would appreciate comments / advice.  Thanks a lot.

1 like, 5 replies

5 Replies

  • marg04364
    marg04364 Jellyncustard13

    Posted

    Hi  Sorry you have not had any replies in 6 months and wonder if you went through with the tests again. You would need to be eating gluten (like about 4 slices bread a day)  for 6 weeks before an endoscopy.
    • Jellyncustard13
      Jellyncustard13 marg04364

      Posted

      Thanks Marg, I haven 't gone down the road of endoscopy again. Have been fairly ok just sticking to a no gluten diet, I experience mild pain most days, but as yet nothing I can't cope with, so intend to continue as best I can fingers crossed. Thanks for your interest and time.
    • marg04364
      marg04364 Jellyncustard13

      Posted

      It seems to be for many people it takes years for them to be diagnosed. I believe symptoms get worse over time. Some people just go gluten free because they feel better on the diet but it may not be coeliac if you are still getting pain etc. It could be IBS which is due to another molecule called fructan which is in wheat, rye and barley but also in other foods (onion, garlic, leeks). If IBS then you may also need to restrict fructose (apples, pears, mango, watermelon, honey), lactose (milk, yoghurt, icecream, custard, ricotta and cottage cheese), GOS (some legumes, lentils, chickpeas) and polyols (sorbitol, mannitol, apple, apricot, nectarine, peach, plum and pear). You may not have to be so strict on this diet as with the gluten diet.  It might be worth a trial.
    • Jellyncustard13
      Jellyncustard13 marg04364

      Posted

      Oh my goodness Marg you have practically listed all food that I eat and love!  I am waiting for a ct scan which consultant thinks may show scarring from dv flare ups which could account for this daily pain I experience. Again fingers crossed. ..thanks for your advice, I shall try harder with my gluten free diet as I do go off the rails from time to time.
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