Hi I am new to this site but have coeliac disease, despite being GF for over 2.5 years I still don't feel very well. I have been tested for various other conditions and all tests have come back as normal. The symptoms I have are headaches, hair loss, feeling unbalanced, slight tingling in hands and feet and lethargy. I don't have all of the symptoms all of the time and sometimes I have periods where I feel as though I have been drugged and find it difficult to concentrate and have conversations. My vit b12 results in January were 393 and the hospital informs me that anyone between 180 - 1030 is normal. I am just wondering whether anyone has had these higher results and still been diagnosed with Vit B deficiency. The GP is sending me back to the immunology consultant for one final check and then suggested that I go on anti depressants if they cant find anything. Also should i have fasted before the blood test for this? Any help would be gratefully appreciated
Could I have Vit b12 def: Hi I am new... - Pernicious Anaemi...
Pernicious Anaemia Society
Your result is definitely low (I was deficient at 310). There are other tests you could have done - Active B12, MMA or Homocysteine. I would start by asking your Consultant for these tests, you never know, he might agree!
To have them done at St Thomas' in London, you need a referral letter from your GP and you have to pay for the tests. The Active B12 test is £18, the MMA test is £96 and the Homocysteine test is £40. I believe they automatically do the MMA test if your Active B12 is in the grey area. You can post the blood samples for Active B12 and MMA, but if you wanted Homocysteine too you have to go there. Best to phone up Denise Oblein and ask her for info:
Some info on the tests:
With Coeliac Disease you are probably also low on iron/ferritin, folate and vitamin D. Has your doctor tested these things?
Copper deficiency also has similar symptoms to B12 deficiency and is linked to Coeliac Disease:
Finally a link to all things B12:
Hampster hi, I'm so impressed with your knowledge, and the support you give everyone..thanks for being there x
Hi Hamster1, thank you very much for your response, and for the information you have provided. I have learned so much from the other Health unlocked Coeliac site and someone suggested this one.
After reading some of the symptoms of Vitb deficiency I don't have all of them, for example loss of appetite. My headaches are the worst as I feel sick with them and they last for days, once they come on I feel totally miserable.
I haven't been tested for vit d as I asked about this last time. I have been tested for folate and ferritin but all i got was a letter saying normal so don't know what the results are.
I only found out I had CD by accident when going for allergy tests at the immunology clinic and they have done a lot of tests on me for the allergy I get and found nothing! I am not sure how long I will need to wait for my appointment but I will ask about the tests you have suggested and see if they are willing to do them.
The other thing I wondered about was starting to take supplements myself to see if it made any difference, I found these amazon.co.uk/gp/product/B00... and wondered whether this would be a good idea after my appointment if the doctor isn't willing to test any further. I will ask about the letter to the London hospital first.
I think the sticking point will be that they will consider my result of 393 high as I watched a BBC inside out youtube video last night of a Dr Chandy who was in Durham and he was treating patients who were under 300 and was considered to be treating people who didn't need the Vit b yet his patients had fantastic results.
It seems that with all of these autoimmune conditions that the Drs do the basic tests and that is all they are willing to do, someone else said that the thyroid test is far from perfect and some people don't get diagnosed with the condition.
Thanks again for your help
Most people don't have all the symptoms, I certainly didn't. But the ones you mention do sound like B12 deficiency to me. Migraines with nausea, sickness and upset tummy are very familiar to me, and I could do nothing but go to bed and wait for them to pass. They are much more infrequent now I'm on B12, I'm down to about one a month, usually first week of my cycle. But I was low range on lots of things - B12, folate, iron, vit D, zinc, copper, magnesium. These are the one's I know about so far. I was only "officially" deficient in folate and zinc, but I need to sort them all out to get well. I tested negative for Coeliac but went gluten free anyway which has really helped. Not interested in further testing, I'm happy to stay gluten free. I also have a thyroid condition - Graves - which doesn't help matters.
I suspect you will be low range on folate, this is linked to migraine and I've been told is now being added to some migraine medications. So the first thing you need to do is get copies of all your blood test results, going back as far as you can - at least back to when your CD was diagnosed. Doctors are only interested in us being in the lab range, they don't mind if we're even one small point from the bottom - that would be "normal" to them.
If your doctor won't test vitamin D you can easily do it yourself, here is a not too expensive one I found, I'm sure there are others:
Just make sure you're well hydrated before the test, I've just done one this morning myself for something else, spent over an hour trying to get enough blood from my finger into the little tube, lol! If it comes back low, speak to the doctor first and see if he'll test your calcium, because low vit D can be due to malabsorption, or it can be a sign of a parathyroid issue (in this case calcium would be high).
The supplement you have found is a good one, but I wouldn't start taking it whilst you are still trying to get a diagnosis. It is much better to have the Active B12 and other tests first if you can, any supplements will completely skew the results. I forgot to mention the Pernicious Anaemia antibody tests you could ask your Consultant to do as well:
-Anti Intrinsic Factor
Just stress that you are symptomatic of B12 deficiency, and since you already have one autoimmune condition (CD) you want to make sure you haven't also got PA. You can test negative for these antibodies and still have PA, but it is helpful to have them done in case you test positive, if you know what I mean.
So my advice is 1) get those test results with ranges 2) please don't supplement yet 3) get some more tests to investigate B12 deficiency, even if you just get Active B12 for £18. If you contact Denise Oblein at St Thomas' she sends you some info on the test to give to your GP, so that the GP will write the referral letter. The sample can be posted if you don't live near London.
I am not very medically knowledgeable, however I suffered the same symptoms, hair loss, tingling in hands, loss of concentration, feeling unbalanced and generally unwell. My Dr diagnosed me as B12 deficient and started me on the injections straight away, I was lucky I had full support from my GP Practice. It sounds to me like you have the same symptoms I suffered. Once the injections started my symptoms improved within a few weeks, and I only suffer tingling in my hands a week or two before my next injection is due. I wish you well and hope you are able to get the medication you well deserve. It certainly changed my life for the better.
Thank you for your help Siang, at the moment I am really just clutching at straws as I don't know whether it is Vit B deficiency all I know is that I thought that once the coeliac disease was diagnosed I would start to feel well but it will be 3 years in March since diagnosis and I don't feel any better. Thank you very much for your kindness
I am proof that you can have a higher level of b12 and still be deficient, my gp b12 serum was similar to yours mine was 363. I went and ignored gp and had the test done for active b12 and it was very low 19 (range 35-165 ) so the blood test from gp is unreliable, have you had your folate tested??
Best of luck and proove gp wrong , go and get test for active b12 test for st thomas gsts kingspath. speak to denise obline
Much love and you will improve
Hi Jo thanks for writing, yes yours is similar to mine, did you have headaches? What I am trying to find out is how similar peoples symptoms are for instance my unbalanced feeling seems to be more on my right side, the pins and needles aren't that severe, only a slight feeling. The drugged feeling is not always there. The hair loss I have had for a number of years and remember taking up a bag of hair to one GP about 7/9 years ago, on my last app I just took a photo of how much hair I lose when i shampoo. With Coeliac disease there are about 300 symptoms and I didn't have the more obvious ones so i am wondering whether it is similar with the Vit B deficiency.
I have also read online that the normal test they give you for the deficiency can depend on what you have eaten before the test which isn't very reliable. Thanks again for your advice, I am hoping that the immunology app will be soon and if I don't get anywhere with that I will do what you have done and get the test at St Thomas's
Just wanted to add that I also have a weak right side, one of my first symptoms was that my right hand went numb. It also affects my right leg, I notice it a lot when I'm driving the car. And I can't sleep on my right side at night. The left is not as bad but I do notice it sometimes, for example if I'm on the phone for a long time my left hand starts to numb and my fingers tingle. Hair loss is definitely a B12 thing, but it can also be due to thyroid issues or I think low iron as well? Have you had your thyroid checked? H x
Hi Hamster1 yes that is a good way of explaining it, I am afraid that sometimes I am not very good at describing the symptoms, I am right handed and drink a lot ( mainly tea) and found last week I was having to hold my cup with both hands as the right hand felt weak.
Yes I have had my thyroid checked twice I think now, both normal results. The test I had was apparently a serum TSH level ( range between 0.5 and 4.7) with my test coming back as 2.3.
I also had an incident in March 2012 when both of my legs completely cramped up and was unable to move at all, I was on the stairs. It really scared me as I thought that if it had happened when driving I could have had an accident. I take a small dose of Dapsone for the dermatitis herpetiformis and didn't know whether this had something to do with it, I asked the dermatologist and immunologist and they didn't know of anyone who had suffered this, since then I do get the odd cramps in my legs but nothing anywhere like as severe.
I rang the immunology dept yesterday after your post to ask about my iron and ferritin results but they told me that they couldn't give these over the phone, I mentioned that the GP had referred my again and they have made an appointment for the 24th October, I have asked them to send the blood results in a letter before the appointment as I find that when you are in the surgery for about 10 mins its very difficult to get things across and easy to go off on a tangent, if I have the results first at least I can advise that they are low etc. if they are.
Last night and today I feel ok, this is the first time in months, I have no idea why but I feel so much brighter and able to do things, I could even do some exercise, if it was Vit B def would I have days where I do feel better. My hands ( mainly right) still have a sensation in them, It has highlighted that I need to sort things out so that I do feel like this the majority of the time as my life would be so much better.
Thanks again for all of your helpful advice
It is normal to have good days and bad days, I don't really know why. What you're saying is very familiar to me, before my treatment I would routinely smash things when unloading the dishwasher because I just couldn't hold on to them. I also had to pour the kettle with 2 hands, I even found wiping down a worktop difficult/painful. The moral of the story - don't do any housework!!! Good luck with the appointment. H x
Thanks very much for your help Hampster x
My toes go numb whilst sleeping, but I always thought that the tingling I get in my left hand was due to Carpal Tunnel, had both hands operated on in 87, so unsure if it's the carpal tunnel or fact I'm B12 deficient ? My brain fog is dreadful, is it B12 or fact I have R.A.? Infact had an appt I made only yesterday to have b12 jab, and forgot to go today....ugh....but I also suffer with Fatigue, I can't pinpoint it to B 12, or RA, probably both cause it, that much I know......my hair loss is a lot, I usually have a thick hair, but it feels thin at the mo....hoping to see GP and talk further, more tests etc....on top of all this, I have other disorders as I've mentioned on here, so I don't know if I'm coming or going, and struggle to pinpoint what's causing what.......Hamspter regards the Gastritis I have, over Easter is was admitted to hosp with Gastritis episode and they removed 3 litres of Bile....I thought Bile was Acid? Where did all that come from? Also under the Gastro team about low Serum Ferritin, that in its self makes me feel tired and weak, so many symptoms, so many health issues, I feel Bombarded with ill health.......had enough
Sounds really tough Jill, I can't even imagine. I know very little about the stomach, but found this link on bile gastritis, is this what you had?
Consultants never said 'Bile' Gastritis, just said gastritis....but after what has happened to me and what I've read on the subject! seems it must be Bile G......I'm awaiting answers soon....have to say, it's very scary....it's linked to stomach Cancer....not saying il end up with that, but when the stomach lining gets damaged, well let's not talk about that.....x
Sounds to me like they need to communicate with you a bit better, I know from the PAS forum that they often recommend getting a copy of the actual hospital pathology report, because that will tell you exactly what was found rather than the truncated version that the GP gets. You've got a lot of complex issues going on that are outside of my experience. I would really recommend joining PAS and posting your full story on the forum, there's so much experience over there of the sorts of issues you have - gall bladder removal, gastritis etc. etc. Here is a link to the forum:
Hi Jill60 so sorry to hear that you are feeling down, I am new to this forum so don't know whether you are diagnosed with Vit B deficiency. I did exactly the same thing as you the other day I made an appointment with GP and spent a considerable amount of time typing up my symptoms and preparing what I was going to say and then forgot about the appointment!
Hope when you go and get your injections and see your GP that you get listened to and get the help you need, I think that the health service would save a considerable amount of money if they listened to the patients more instead of simply doing a lot of basic tests which aren't reliable in the first place anyway. Good luck x
Yips, that's me to a T, also had Gall Bladder removed approx 4years ago.....then lucky ole me gets gastritis lol ty for your support x
Thanks for replies...sadly my G astro team at the hosp are a bit slack! Where as the Spine Surgeon is great......
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