What next

I have received confirmation from the consultant that endoscopy confirms celiac disease and follow up is in a years time. Referred to dietician which has about a 2 month waiting time. However I have cut gluten out for a month now and although gut is calmer I still feel tired and not full of beans. I also think I may be diary intolerant as had a couple of bad episodes eating cream over Christmas. After asking my doctor for follow up checks for iron levels...i have the same symptoms I had over 2 years ago when I had anaemia and low ferritin levels... he has advised to wait 5 weeks to get them done. Has this happened to anyone else and should I just go get them done earlier?

17 Replies

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  • Hi,

    Go ahead and get those bloods done asap. What will be gained by waiting 5 weeks? Nothing!!

    You are a newly diagnosed Coeliac who is likely to have multiple vitamin and mineral deficiencies- and you need to know what they are so you can potentially start treatments.

    Aftercare following diagnosis is so important and in my own experience didn't happen until I fought for it. This smacks of the B12 issue I had (and mentioned to you in another post a couple of weeks ago).

    At the very least, find out when you last had these tests done and get the numbers for them, so that you can make your own assessment of your current health situation.

    Are you based in the UK?

    Btw, around 20% of Coeliacs are dairy intolerant on diagnosis. Many can try re-introducing dairy after 12 months or so and will be fine. Sadly I'm not one of them 🙁.

  • Hi thank you for your great messages and support...really helpful. Have booked bloods and bone scan. I can see things won't happen unless you make them.

  • Lack of b12 for me was the start of finding out that i was in fact coeliac. The stomach cant absorb/ convert the vits and mins from the food you give it. i have personally found that prescribed medication didnt work as effectively as it should have done prior to diagnosis too.

    Try to get as full a blood test as possible to find out what is going on. Also would recommend not taking any supplements prior to test as it can alter results.

  • Thank you for your message. Everyone's support on here is a great help. I agree with the don't take any supplements because the last time I had some bloods done I was not feeling great so was taking supplements and iron tablets which distorted everything. Not this time...

  • It's the casein protein in dairy. Very similar to gluten.

    Celiac is usually both gluten and dairy free.

  • I wholeheartedly agree with the above comments - get the blood tests done now before taking the supplements so you know what your levels are, B12 very important to get along with vit d as a minimum. It's worth noting that with b12 a further test is handy which measures the active b12, which is the actual amount your body is utilising but this one is normally done privately, may well be worth getting if you can. You should also be getting a referral for a densa bone scan, so nag your gp to chase that up if you don't hear anything fairly soon. Don't worry too much in the delay in seeing your dietician, just stay with your gluten free diet, eat loads of fresh veg & fruit alng with fish & meat & for the time being cut out the dairy, or at least see if the lactose free dairy is better for you whilst your villi heal. Also be very careful about cross contamination. Be a little bit careful with the freefrom foods on offer, a lot of people can't tolerate them, but you are your own best doctor by listening to what your own body is telling you. Have a look at the coeliac website for the uk as lots of info on there for the newbies which can be really helpful. Good luck in your journey in getting your health back & you will have lows whilst you adjust to the loss of certain foods, but keep hold of the fact that you will be gettng & feeling better.

  • Thank you for such an informative and positive message. Everyone on here is so helpful it really is so supportive. Have got a bone scan booked and bloods so hopefully moving forward. I agree with your comment 're free from foods as get on with some but not others so trial and error I think.

  • Hi I was diagnosed Coeliac in May and have also had some illness after eating cream so have learned a lot reading these posts. Thank you. I can seem to eat a little cream but if I overdo it I feel terrible. It is dawning on me that I must be very careful and eat lightly and well in order to feel well. Thanks again for all your knowledge which is invaluable. Diane

  • I didn't feel truly 'full of beans' until I started taking multivitamins with iron. Made all the difference for me. As for the cream, I find that my belly is generally a bit naffed when I take the mickey with naughty foods, which I do a lot. I would also recommend acidophilus tablets from Holland and Barret . They do cost a bit, but really helps our messed up bellies to cope with shitty foods, quite literally.

  • Thanks for that I am going to get some multi vits as think I need a boost or something. Blood tests have come back ok for iron etc but still feel great. Also seeing dietician in a couple of weeks so hope to get some more answers.

  • Hi,

    Glad your iron levels were fine. Multivitamin is definitely a good idea.

    Did they test your vitamin D levels? It took them nearly 6 months following my diagnosis to get around to testing mine (way too long in hindsight imo!). I kept being fobbed off with various excuses such as it's winter etc. Finally when they did, they discovered that I was severely Vit D deficient due to my being a Coeliac. A referral to a hospital endocrinologist ensued and eventually I was treated.

    Please don't wait as long as I did....!

    The test is NOT as routinely done as a full blood count (FBC). HOWEVER, as a newly diagnosed Coeliac you are very justified in asking to be tested.

    I had to work these things out for myself over many months. I really hope that you fare better. Please have the courage to politely push for the help you need. I hope this helps.

    Take care.

    R. B.

  • Thanks for that. Consultant tested for Vitamin D and Thyroid, but never heard results so probably should check, but assume should be ok or would hear, but you never know. I am starting to slowly improve very slowly. Stomach is certainly calmer, but seem to have two steps forward one back. Dairy is definitely causing issues , so I know now to avoid this...yogurts and cream especially. Milk doesnt seem to have an effect. Thanks for your support.

  • Your 'two steps forward, one step back' echoes with me - I felt the same at the time.

    Do check Vit D. Ideally it should be in the 60+ range (but less than 100 - Vit D is toxic in high amounts). Although GP's will tell you that 30 nmol/L and over is okay and doesn't need treatment by them. However even according to NHS's own guidelines, anything less than 50 nmol/L is classed as 'insufficiency'.

    Go figure!

    R.B. x

  • Go to your doctor and get all the extra tests booked. At the very least it'll be a weight off your mind.

    You need to allow your gut to recover from the damage that's occurred as a result of eating gluten- you're probably deficient in a couple of vitamins and minerals as a result, which will result in your exhaustion- especially if iron deficiency is one of them.

    In the meantime, try to eat a good, healthy balanced diet, including good sources of non-dairy calcium if you choose to limit the amount of dairy you eat- maybe look out for a fortified gluten free bread, or dark green leafy veg- fish with the bones still in (like canned sardines) are also excellent if you can stomach them! You'll probably also feel better once you get your iron levels up. One thing I learnt from my dietician was that vitamin C massively helps with iron absorbtion (this is something you'll struggle with whilst your gut repairs) so try to have, say, a glass of orange juice or something with your food. If your tastebuds and moral/ethical/religious guidelines allow it, animal iron (from meat) is also much easier to absorb than plant iron (from vegetables)

  • What were your iron levels? My ferritin level was 11 when I was feeling my worst. One dr said anything over 13 is normal and another Dr said it should be over 100. I didn't start to feel better until my ferritin levels were over 70!

  • My ferritin levels were low about 2 years ago and i was told 'that's nothing' which now I know is not the case. Just had bloods done and all ok.

  • Hello Di64. Having Coeliac disease myself I can only advise as to what could help you. I was diagnosed 10 years ago after being ill for 12 years. I remember it took longer then a few weeks of giving up Gluten from my diet to get back to full health. I was suffering with anemia for years and felt so ill before I had my biopsy. The dietitian asked me to join the Coeliac Society which i found very helpful. Please give yourself a few more weeks on the gluten free diet.

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