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

Lost / Confused / What do I do next?

Posted , 3 users are following.

sarah85ee
sarah85ee

My mum has Celiac disease (I'm possibly spelling it wrong) and has been gluten free for 10 years. After I had my daughter 2 years ago I noticed changes in my own body. I stopped breastfeeding a year ago and my periods have been very irregular. I have sudden adult acne. IBS symptoms, tired and headaches. I initially went to my Drs thinking it was hormone related. He checked for blood count / thyroid / diabetes / cholesterol and a few other things and they all came back fine. He said it was possibly my body adjusting since having a baby. I went back again after my symptoms got worse. I had morning sickness (feeling sick after breakfast and occasionally being sick) and all of the above. I was tested and told the same results. I asked if it could be Cealiac disease due to my family history.

I had a blood test that came back positive and a gut biopsy that came back negative. So I have been told to carry on eating gluten and have another test in 6 months.

I'm really confused and have been given no advice at all. It's making me feel anxious. I just want to give gluten up for a few months and see if it makes a difference to my body. Mainly the sickness each morning.

So I am not Cealiac. Is there such thing as a gluten intolerance? Has anyone been in my situation before? I'm not really interested in being diagnosed as something, I just want to feel good again.

Then in terms of gremoving gluten.....does anyone have a good resource (book/website) in where to start? I feel really uneducated. My mum lives 50 miles away, I can obviously ring her but it's best to educate myself.

Thanks in advance.

1 like, 3 replies

3 Replies

  • anthony10484
    anthony10484 sarah85ee

    Posted

    I can't really comment on the possibility of you having coeliac disease or any other form of gluten intolerance, you are best advised to listen to the professionals.  One thing I would say, though, is that you need to be eating gluten for six weeks before any test that you might be taking otherwise you will get a false response.

    The best place for information on CD is the Coeliac UK website.  If you join they provide an excellent food directory.

    I hope this helps.

    • sarah85ee
      sarah85ee anthony10484

      Posted

      Thanks for your response. I know what your saying regarding listening to the dr. They are professionals. It's just taken so long to get this far and I just want to start feeling good again.

      I asked the dr what he meant by 'blood test was positive for Cealiac and biopsy negative' he said its possibly early stages, so in 6 months may show more. Me and my husband want to start trying for another baby and I wanted to get my health incheck first.

      If I wasn't feeling sick or being sick each and every morning I think waiting 6 months would seem easier.

  • FA54321
    FA54321 sarah85ee

    Posted

    Hi Sarah,

    I had the opposite result to you, negative blood test but positive gut biopsy.  If they have advised you to have another test in 6 months, I would do precisely that. Whilst I cannot say you may have coeliac disease, what I will say is everyone's symptoms are different.  What you must do, (I know it's difficult - I've been there) is carry on eating gluten until you've had your other biopsy. The antibodies won't be present if you don't and you may get a false negative result. Is there a possibility, between your blood test and your biopsy, that you gave up eating gluten for a while? You need to eat it for at least 6 weeks on a daily basis in order to get the correct result.

    I'm sorry you are going through this, there are a lot of us on here that have gone through similar or worse and I sympathise totally.

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.