1. Community
  2. Gut, bowel and stomach
  3. Coeliac Disease

when did you begin eating gluten free?

Posted , 4 users are following.

vicky40392
vicky40392

Hi,  sorry if this is long, I do tend to ramble on.  since my son was born a couple of years ago, I have been to several doctors appointments with depression, lethargy and several other symptoms, that had gotten to a point that I felt I couldn't cope anymore.  At first the doctor thought it was postnatal depression and then thyroid, but on my second blood test, when she tested for almost everthing she could, my blood test came back stongly for coeliac, and as always very low iron levels.  That was back in Febuary, four weeks ago at my endoscopy, on leaving, the nurse said the procedure had shown suggestions of coeliac and disease, they had taken biopsies, and not to start on a gluten free diet as other tests would need to be taken. As I was a bit out of it at the time due to the sedation, I forgot to ask what other tests they would be doing? could anyone let me know what they went through after the biopsy in regards to further tests.  I am feeling so low and desperate to start the diet, and wait eagerly for the post everyday.  I have to go in for surgery for another problem possibly at the end of June, and I am wondering if just to start now, as I really want to feel stronger for that.  Thank you for listening in advance.

1 like, 4 replies

4 Replies

  • aveline
    aveline vicky40392

    Posted

    I'd phone the office and see what they say.  As far as I knew, you'd be done now - my son has CD and like you his bloodwork was high but we kept him on gluten through the biopsy/endoscopy and even until we had results and it was confirmed. After the endoscopy/biopsies, though he didn't NEED it. And if they wanted genetic testing, you wouldn't need it either. I don't know of further testing that would necessitate gluten in your diet, but you should make sure before you stop, I guess.  You've come this far - you must be almost done if not totally...

    Good Luck!

  • tm62
    tm62 vicky40392

    Posted

    Hi Vicky the only reason i can think why they wouldnt want you to start the diet is if they thought the endoscope may have to be done again, which would be very unusual especially if they told you that they could see damaged in your stomach. I had my endoscope and started the diet the next day, they told me that I was normal when I left which confused me at the time, however I later found out that the biopsy revealed my gut was moderately to severely damaged.  I would give them a call to see if anyone can confirm your results to you over the phone as four weeks seems a long time to wait.

    The other tests we have such as blood tests for mineral and vitamins, dexa scan etc are all done once diagnosed so going on the diet should not make any difference to these as far as I am aware 

    Hope this helps 

  • jennifer92119
    jennifer92119 vicky40392

    Posted

    Hi there Vicky,  I had an endoscopy 2wks ago and even though the result isn't back yet the doctor advised starting a gluten free diet. In my case if she hadn't mentioned it, I wouldn't have begun it.

    Perhaps you should ring for clarification as I understood that the endoscopy/biopsy was the one that confirmed coeliac disease.

  • vicky40392
    vicky40392

    Posted

    Thank you all so much for your replies, It's great to speak to others who understand and can help.  
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.