hi as many of you know i was diagnoised in dec 2012 since then lost nearly 4st and am always tired not seen dietician yet

i have a fairly good idea of what i can eat my doc wont send me for blood test till summer as the results won,t show difiency during lack of sunshine, but i am having to have an afternoon kip everyday does anyone else suffer like this:? i,m the only coeliac at our surgery and feel they are just guessing at things.

10 Replies

  • Hi dobido,

    I get a lot of fatigue as part of my coeliac symptoms, although I think this is gradually improving over time. I was diagnosed officially in November 2012 - so I am only a few weeks ahead of you in getting sorted out.

    My doctors have been pretty good overall. What I have found with doctors is that you have to ask and ask again sometimes and I have on occasion booked to see a different doctor in my practice to get a second opinion when I haven't agreed with what the first one said. You didn't say what the blood tests were for? If it is any help I had to ask three different doctors on four different occasions before they would sort out my B12 levels and I had to prove to them that taking B12 in tablet form was having no effect.

    As soon as the last GP relented and started me on a course of B12 injections, my fatigue symptoms improved overnight. A B12 blood test may be worth pushing for, because absorption of B12 in the gut is seriously impaired until the gut heals. Because my level was only a fraction below average at the point of diagnosis, the GP wanted to let it resolve itself. A nurse friend of mine gave me the courage to keep pushing for the injections because of the absorption issue. There are three types of anaemia overall - B12, Folic acid and Iron. It sounds possible you could have one of these if you are needing a sleep the afternoon. I went through a stage many years ago when I needed to sleep in an afternoon as well. On that occasion it was iron anaemia.

    More recently I have started to suspect that eating dairy products will bring on my fatigue symptoms as well. Within 10 minutes of eating some camembert last week, my fatigue symptoms were back and it felt rather similar to being glutened. The dietician gave me the okay to eat dairy products knowing I had a lactose intolerance. She thought it would just give me a dodgy tummy, it seems I get rather more than this!

    By the way if you've not seen a dietician yet, make sure you are eating enough calcium and getting plenty of vitamin D. If the doctors have not already sent you for a bone density scan (DEXA) at the local hospital, encourage them to do this referral ASAP. I am now on prescribed calcium supplements because this routine check showed that my bone density was not as good as it should be.

    Hope this helps you - good luck.

  • Ps - get the GP to do a blood test to check your thyroid levels as well. There is a known link between coeliac disease and thyroid issues. I believe Thyroid problems can make you feel pretty rough.

  • I too was diagnosed in Dec 2012 via blood tests and biopsy. Despite starting a GF diet in January (we were away with friends for Xmas/New Year) I am not really feeling any better, tired, lethargic etc (you all know how it feels). My doctor unfortunately was not particularly forthcoming with regard to follow ups so about 3 weeks ago (after extensive googling for info) I went in armed with NICE guidelines and other info and insisted politely that I wanted follow up blood tests and a DEXA scan to which she agreed.

    I had some blood tests done in October 2012 at which time my thyroid levels were fine but the latest ones (despite my GF diet) are now "cause for concern" and have to be redone in 3 months and to add to that I have just received a call from my surgery to say my Vitamin D is now deficient and I need supplements.

    Why is my body falling apart on my GF diet??????????????

  • thanx Tiggykanga i did have my dexa scan which was fine appartently there is no point doing blood test for vit d in the winter as your levels are always lower got to wait till sun is shining i,m fed up of asking and getting nowhere wish i,d never been diagoised in the first place. i just want to start feeling better its affecting my mood which is affecting my whole life

  • There is a point to having a vit d test - yes it might be 'low' because it's winter, but it's also possible that it might be below the insufficient level (mine was!). My rheumatologist said he had seen patients with severe joint pain come dancing into the clinic three months later after taking supplements. I can't say it did that for me, but it certainly brought my levels back into the normal zone.

    How about other blood tests? I was also very anaemic, again improving with supplements.

  • my gp isn,t prepared to arrange any blood test but i am the only coeliac at the surgery so i don,t think they know or want to know about it i feel i,m wasting my time not theres

  • Fiona had a link on here at one time with the blood tests we should all be asking for plus the nice/NHS guidelines for the management of coeliac disease. If you private message her or the admins I am sure they will give you the details and you can take them along to the surgery to help you get what you need. I hope you feel better soon.

  • I still take adcal-d3 16 months after told I was coeliac...my d3 was very very and I was tired all the time, I would cry for no reason and I felt sad all the time my calcium was low as well...now both levels are normal I have lots of energy and feel happy most of the time...My doc takes bloods every three months to make sure my levels are ok.......but I've not last any weight....even though I live on fish/meat salad.....

    Janie x

  • Living in Preston they will check your D levels at any time of year....the sun hardly shines here; most if the 'normal' folks are deficient in D as standard

  • Saying that there is no point testing vitamin D levels until summer in my opinion is very wrong. That's like saying don't test for iron anaemia until you start taking iron tablets - of course the level is going to be better. It does sound like your doctors are a bit ill informed.

    If you have been diagnosed as a coeliac they have an obligation to do all the blood tests - and as soon as possible.

    Ever thought about changing your GP to a more understanding one?

    Don't give up - that is the worst thing you can do. It is your health and you need help. Trust me it is worth fighting for. Ever thought about going talking to PALS (the patient liaison service). I have found them to be quite useful in the past.

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