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ADVICE PLEASE

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becks1981
becks1981

Hello I went to the doctors for a medication review for another illness I have and I happened to mention that I was very tired. The doctors said I should have a blood test. 2 days later the results came back and I was low on B12 and folate and the test should be repeated in 2 weeks. I went back for the test and the nurse said I was being tested for Celiac, I didn't know this. I already cut down on gluten intake because I get stomach ache and very bloated, I also suffer with constipation. I don't appear to have any other symptoms apart from these. I had a call from the doctors yesterday to say the results from the celiac test have come back and we want you to eat gluten everyday for 6 weeks and then come back for another test. Is this normal, can you have celiac disease with only some of the symptoms, I really don't want to have celiac disease I already have enough illnesses.

0 likes, 5 replies

5 Replies

  • moh9929
    moh9929 becks1981

    Posted

    Hi Becks, you have low B12, folate, stomach ache, bloating and constipation, tiredness which can all be attribute to coeliac as I recently have had similar symptoms and diagnosed with coeliac. Nevertheless no two people are the same and symptoms can vary so assume you have it just yet. I would say to you knowledge is power. Get checked out and do all the necessary tests and go from there. If you are confirmed positive as coeliac it's not as bad as you think. I've been gf for about 2 months now and am improving slowly. Best of luck

  • FA54321
    FA54321 becks1981

    Posted

    Hi Becks,

    I know what you mean, I too have other chronic health issues and have Coeliac disease as well.  I’m afraid your doctor is correct, you must eat gluten every day for at least 6 weeks prior to testing for Coeliac disease. Gluten needs to be present in your diet in order for the autoimmune response to be detected. Also, even if you don’t get a positive result with a blood test, you can get what is known as a false negative result (which I also had) and you need an endoscopy where they take biopsies at the same time, this is what shows you if you really do have Coeliac disease.  Eating gluten until these tests are completed is the only way and there are no short-cuts but if you have it, it’s best to get an official diagnosis because if you continue to eat gluten you can make yourself very ill and run the risk of having other health complications, for example, anaemia, osteoporosis or cancer and even other autoimmune diseases (I have a thyroid disease, which is another autoimmune disease). 

    Being diagnosed isn’t really the end of the world and there are many of us that are coping with it.  Once you get to grips with the diet, things will settle down and there’s lots of help to be had.  You usually get to see a gastroenterologist once a year to get checked out (blood tests etc.) and once every 3-5 years you get a DEXA scan to check your bones (I found out I had osteopenia, which is the precursor to osteoporosis) so they will monitor your vitamin D levels as well.

    It took a long while for me to feel better as I was really ill pre-diagnosis,  once the villi started to heal I responded much better to my thyroid medication as I was absorbing it, prior to this, I wasn’t absorbing medication properly or indeed anything I ate, and had malnutrition, so you can see, it’s really important to get a proper diagnosis.

    Let us know how you get on; I wish you well. 

  • becks1981
    becks1981

    Posted

    I am taking other medication for bipolar and fibromyalgia. I have been very unwell for all of this year with both these conditions, now you have mentioned that you didn't absorb your medication, maybe I am not absorbing mine. Thank you for your replies I am new to this and I didn't even know I was getting tested for celiac...........

    • FA54321
      FA54321 becks1981

      Posted

      Yes, when I mentioned to my doctor that my thyroid had improved since I took gluten out of my diet, she said it wouldn’t be that, it would be because I was absorbing my medication better. (I am now on a lower dosage). Also, I’m on amitriptyline for nerve pain, and at the time experienced severe trembling. It was only recently when I tried to reduce the dosage, that I put 2 and 2 together because I was experiencing bad withdrawal from it and had to go back to my higher dose, so it’s definitely worth considering that you may not be absorbing yours too.

      Hope me this helps you.

      P.S. I also suffer with fibromyalgia. 

  • becks1981
    becks1981

    Posted

    Thanks for your replies speaking to others does help especially when this was so unexpected. Today was my first day of eating more gluten. I wasn't told how much I need to eat each day and with me already having cut a lot of it out of my diet i don't know what to eat. I have had 3 slices of bread today and I feel terrible, bloated, tired, and very irritable. Would 3 slices of bread be enough or should I eat something else for my tea that has gluten in it. I don't want to go through this for 6 weeks and then find out I didn't eat enough gluten for the test to be accurate

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