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Pernicious Anaemia Society
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blood results Back after GF diet

After having to do two months of gluten-free diet I had my blood test done yesterday and my doctor had read them today and lucky I get to view them online I’ve booked to see my doctor but that’s not till Wednesday, his put down it’s borderline and no action is needed he didn’t even re test my b12 only iron, D , calcium , fbc etc

Here’s my results.

resultSerum adjusted calcium concentration;Serum ferritin level;Serum total 25-hydroxy vitamin D level;Full blood count;Erythrocyte sedimentation rate Report, Borderline, No Further Action (Patient Informed)

Full blood count

Serum total 25-hydroxy vitamin D level 58 nmol/L [50 - 150]

Total white blood count 9.4 10^9/L [4 - 11]

Haemoglobin concentration 13.5 g/dL [11.5 - 16.5]

Serum ferritin level 64 ng/ml [20 - 275]

Serum calcium level 2.21 mmol/L [2.2 - 2.6]

Serum adjusted calcium concentration

Serum albumin level 38 g/L [35 - 50]

Calcium adjusted level 2.25 mmol/l [2.2 - 2.6]

Monocyte count - observation 0.6 10^9/L [0.2 - 0.8]

Lymphocyte count 2.1 10^9/L [1 - 4.8]

Erythrocyte sedimentation rate 16 mm/hr [0 - 30]

Eosinophil count - observation 0.2 10^9/L [0 - 0.4]

Neutrophil count 6.4 10^9/L [2 - 8]

Mean cell volume 96 fL [76 - 96]

Platelet count - observation 247 10^9/L [150 - 450]

Mean cell haemoglobin level 32.1 pg [27 - 32]

Haematocrit 0.403 [0.37 - 0.47]

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36 Replies
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Hi mand82 are you still receiving treatment for your B12 deficiency and do you know what your Folate level is?

Do you feel better after your GF diet?

I'm not medically trained so cannot comment on your results but hopefully there are others on here who will be able to give you good advice.

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My gp didn’t test my b12 or my folate, and I’m not being treated for my b12 not since the loading doses back in February,

The gluten-free diet has made me feel much worse as I’ve eaten less food then I normally do as every vegan food I found always had wheat in it so ended up eating vegan cheese on gluten-free crackers and beans on gluten-free bread most days & vegan yoghurts, been so tired and body aches all the time and more migraines recently

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Oh dear that doesn't sound good. Being vegan may mean your having to have B12 injections for life. Surely your doctor should know this?

I'm sorry I cannot be more help.

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Will tell my doctor on Wednesday to do a b12 blood test to check it, I thought my vit D was a bit low esp when I take 20mg/800iug tablets for it along with food that has vit D in it and it was only 58 (50-150)

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NO VEGAN DIET unless you want to take B12 for life. If there's nothing wrong with your intrinsic factor you can take b12 by mouth, otherwise you will need to take sublingual or shots. The only place you can get b12 naturally is via animal products (which goes to show you God intended for you to use animal products) at least milk, cheese, eggs etc even if you don't eat meat. No B12 means death of your entire nervous system due to lack of Milan sheath. also, your blood will not mature and therefore low iron and even the ability for the blood to carry oxygen is hampered. Don't mess around with pernicious anemia which when it gets bad enough will cause subacute combined degeneration that will cause nerve damage or nerve death and even your death if not corrected. Again, make sure you take care of this. Take it from someone who has lived this hell and went through 5 doctors before someone would even test for it. I thought I had MS. major memory problems, list of symptoms to long to list. I even had major pain like laying in the snow and yet I was unable to inflict pain upon myself with my nails. Twitching and ticks. I rocked like a "retarded person" major stuttering, and couldn't even remember names of close friends and relatives. lost blocks of my life due to memory loss, vertigo, falling sensations, depression, muscle weakness, vision problems and the list goes on. UTI s because the bladder wasn't even strong enough to empty. Major irregular heart rhythms. Basically I nearly died before they figured out my problem. B12 is used as a placebo. Doctors rarely see major problems but must be informed. Take care and speak up for yourself. Make sure they rule out pernicious anemia.

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I always make sure I eat plenty of food fortified wit b12 & other vitamins & I will eat a product if it has milk or cheese it in if it comes to it but I don’t eat cheese or drink milk on its own only the vegan version & wont touch eggs or meat or fish

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I'm vegan and I have been since 1993. Your diet sounds very poor and you're not eating enough variety, especially vegetables. I have a very varied diet and I'm gluten-free vegan. It has helped me a lot and I supplement with B12

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It sounds like you need to overhaul your diet. Fruits and vegetables are naturally gluten free, so don't be afraid to add them to your diet. Quinoa is a seed that you can cook like rice and it is has a good amount of iron in it naturally. Almost every gluten free cookbook contains some vegan recipes, plus the internet is full of recipe sites. Try something you haven't tried before. You might find a new thing to love.

Try to avoid anything pre-packaged. Peanut and other nut butters are also good, gluten free sources of protein.

Are you currently supplementing B12? Most of the pre-packaged gluten free foods do not contain B12 and none of the naturally vegan foods (fruits, vegetables, and nuts) contain B12, so if you're trying to find out whether or not you have trouble absorbing the vitamin you will first need to make sure you are actually getting any in your food or supplements.

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I eat alpro soya products like milk and yoghurts that have iron, vit D, vit b12, vit b3 vit b2 also drink naked juice that has the same vits but also has vit c and e and one that has protein and I eat fortified cereal that has all the vits in as well as vegan cheese that has vit b12

I have to be careful of some nuts as they give me stomach trouble

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Totally correct, listen to Galixie

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With my Thyroid UK hat on I would suggest your Ferritin is too low. I see in an earlier post/thread you suffer Restless Leg Syndrome - which I am sure you know is connected to Low Iron. CTS - Carpal Tunnel Syndrome can be linked to Low Thyroid - so has that been ruled out ? VitD needs to be around 100 so I would take at least 5000 IU's along with VitK2 MK7 and Magnesium.

Healing the gut by being gluten free can take longer than two months :-)

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I have carpal tunnel on my right arm and cubital tunnel syndrome on my left arm which I’ve had surgery for and still have pain in both, I’ve been on vitamin D 800iu for over 2 years now was put on by my gp as they found out after a blood test I had vitamin D deficiency and put the tablets on my repeat, the gp only put me on gluten-free diet for this blood test so I had no gluten in my blood so he could test for absorption problems etc have no idea what he was trying to do but glad I can now eat all my vegan wheat food

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So have you had your thyroid checked ? It is advisable to have VitD re-tested. The amount of D3 prescribed will not fix a deficiency - please read my reply to you above.

Fixing the root cause could possibly save you an op on the other hand 😊

verywell.com/carpal-tunnel-...

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Don’t think I’ve had my thyroids checked before, will speak to my doctor on Wednesday about upping the dose of my vitamin D ,

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I think your GP will tell you to buy your own D3 from what I have read 😊 They are not expensive.

Docs rarely check the thyroid correctly - TSH - FT4 - FT3 and Thyroid anti -bodies TPO & Tg are the tests needed to diagnose. They will test just the TSH and if in range will declare you *normal*. Sadly not ....

Did you manage to read the link I posted above ?

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Just checked my previous blood results and haven’t had any TSH , yeah I’ve read the link my right hand was caused by a fall when I was 11 and has been ever aching since and I’ve had a steroid injection into the palm a few years back that helped for a while then it started off again the doctor said it was carpal tunnel then my left hand started hurting the same but got worse and was losing grip of things and had surgery on the elbow and found the that nerve thingy was inflamed so fixed it but still got pain and muscle wasting :(

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You have not been observing a gluten free diet since you eat fortified cereal, soya and if you have been having any processed foods or sauces etc they will have gluten or other proteins from grains. If you are a vegan you will be most likely be short of B12. Best eat liver once a week.

Grains include wheat barley oats rye soya rice millet sorghum and others.

800IU of D is meaningless...it is too small to matter.

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I was eating gluten free food but now eating normal vegan fortified food as the gluten-free diet is over can’t eat liver as liver is a animal and I’m a vegan

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My daughter uses the 'Garden of Life - Mykind Organics B12 Spray' (vegan methylcobalamin).

Unfortunately even us meat & liver-eaters can be low in B12 too. :(

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You need to take B12 if you are a vegan. B12 is life or death and you cannot get it naturally unless you eat some kind of animal products. eggs, milk, cheese if not meat. Again, this tells me God did not intend for people to be vegan. Sorry, don't mean to offend but what would you do if there were no vitamin supplements?

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I eat food that’s fortified with b12 & other vitamins

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what tests was GP doing that required you to go gluten free? - all the tests for gluten sensitivity that I am aware of need you to be eating gluten.

If you are eating less then the headaches could be migraines due to low blood sugars - particularly as it sounds as if you have seriously cut down on carbohydrates.

MCV and MCH are both high/top of range which could be suggestive of macrocytosis which is a classic symptom of B12 and folate deficiencies.

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I do suffer from chronic migraines but had been a bit worse when on the gluten-free diet probably due to eating less type of food & generally less food, the doctor wanted me to go gluten-free to see if there was absorption problem and thought eliminate gluten to focus better on the other stuff or something don’t really know how my doctor was thinking their a bit useless at my surgery, I noticed a few things on the test had stayed the same or gone down or gone up a bit doctor ordered Autoimmune profile , TG IgA along with fbc, esr, calcium , vitamin D & albumin & iron,

My last blood test was 1st June & was

Haemoglobin concentration 12.9 g/dL [11.5 - 16.5]

Total white blood count 7.8 10^9/L [4 - 11]

Platelet count - observation 273 10^9/L [150 - 450]

Full blood count

Serum ferritin level 10 ng/ml [20 - 275]

Serum vitamin B12 level 689 ng/L [180 - 914]

Serum folate level 10.2 ng/ml [2.7 - 34]

Mean cell volume 96 fL [76 - 96]

Monocyte count - observation 0.5 10^9/L [0.2 - 0.8]

Eosinophil count - observation 0.2 10^9/L [0 - 0.4]

Lymphocyte count 2.1 10^9/L [1 - 4.8]

Haematocrit 0.385 [0.37 - 0.47]

Mean cell haemoglobin level 32.1 pg [27 - 32]

Neutrophil count 5 10^9/L [2 - 8]

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thanks - think you need to point out to your GP that the experiment with gluten free is having other consequences for your health and suggest that it be stopped on those grounds.

doesn't look so far as if the experiment is having any appreciable results.

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I stopped the gluten-free diet as soon as I had the blood test as I only needed to be on the diet till the blood test, as soon as I had the blood I went straight to dominos and got myself a nice pizza I so missed that taste lol

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hope the pizza helped.

haven't been able to find anything on non-supplementation causes of raised B6 but have found a few bits on raised B6 and links to the sorts of neurological issues you are describing

ncbi.nlm.nih.gov/pubmed/187...

lpi.oregonstate.edu/mic/vit...

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Yeah the pizza helped so did the vegan hotdogs lol was good to eat normal food again so don’t want to go through that again,

I took a look at the links some interesting bits, I took a look at the food I usually buy & they don’t seem to have b6 in all alpro soya milk/yoghurts/custards I use only has these vitamins

vitamin D0.75 µg 15%*

vitamin B20.21 mg 15%*

vitamin B120.38 µg 15%*

calcium 120 mg

Exp naked juice smoothie that I sometimes get 450ml bottle

Niacin 9.2 mg (58% RI)

Vitamin B5 5.7 mg (95% RI)

Vitamin B6 1.1 mg (79% RI)

Vitamin B12 2.6 µg (105% RI)

Vitamin C 65 mg (81% RI)

Vitamin E 7.4 mg (62% RI)

Fibre

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sorry mand82 - just realised that I'd got confused over posts and meant to post the info on B6 on another post - doh! where someone had posted that they had high B6 levels

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That’s ok :)

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In additiin to tge other suggestions given, I would suggest you have a background infection. I personally believe the wbc count range is ridiculously wide. Mine over last 3 years had ranges from 7.7 to 9.5 while being b12 deficient. I was recently tested for h pylori and it was positive with wbc level of 9.2. Im not saying this is your issue but if you hurt all the time, its time for the doctor to start researching your symptoms.

Good luck.

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I always heard that people with weak immune systems etc had lower wbc like people with asthma etc but my wbc seems to be higher tho

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Hi,

Gambit62 mentioned the possibility of macrocytosis which can be associated with B12 and Folate deficiencies.

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

"Serum adjusted calcium concentration;Serum ferritin level;Serum total 25-hydroxy vitamin D level;Full blood count;Erythrocyte sedimentation rate Report, Borderline, No Further Action"

You mention a ferritin test above but there are no results. Have you had folate tested recently as well?

Low iron can lead to small red blood cells (Microcytosis) low b12 and low folate can lead to enlarged red blood cells (Macrocytosis).

A person who has both low iron and low B12 /low folate may appear to have a normal range MCV (mean cell volume) and MCH (Mean cell haemoglobin) on the Full Blood Count (FBC) because the effects of low iron on size of red blood cells may mask the effects of low B12/low folate.

A test called a blood smear or blood film may show both microcytic cells and macrocytic cells in someone who has both low iron and low B12/low folate.

labtestsonline.org.uk/under...

"I’m not being treated for my b12 not since the loading doses back in February,"

Is your GP planning to give you any more B12? Is he/she going to test your B12 levels again?

Do you have any neurological symptoms eg tingling, pins and needles, tinnitus, balance problems, memory issues plus other possible neuro symptoms?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

If yes to neuro symptoms, my understanding is that in UK, people with B12 deficiency with neuro symptoms are supposed to get loading injections every other day for as long as symptoms continue to get better (this could mean weeks even months of loading injections) then injections every 2 months regardless of the cause of B12 deficiency.

However I am not medically trained so I may have misunderstood the guidelines below.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

Risk factors for PA and B12 deficiency

It's possible to have more than one cause of b12 deficiency at the same time.

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

"doctor wanted me to go gluten-free to see if there was absorption problem"

"doctor ordered Autoimmune profile , TG IgA along with fbc"

I'm a bit confused....the GP suggested a gluten free diet but then ordered a TG IgA test. TG IgA test is a test for Coeliac disease eg transglutaminase antibody test.

Did GP also order a test for total IgA?

On Coeliac Uk website, I'm pretty sure it says a person needs to be eating plenty of gluten more than once a day for several weeks before a test for Coeliac disease.

coeliac.org.uk/coeliac-dise...

If a person has a test for Coeliac disease straight after a period of eating no gluten then their body may not be making enough antibodies to gluten to show up in the test.

Some people are IgA deficient. IgA is an immunoglobulin. A person who is IgA deficient may need alternative tests for Coeliac disease because their body may not make Coeliac antibodies that show up in transglutaminase (TG) test.

There is a helpline number on Coeliac UK website.

Coeliac disease can lead to B12 deficiency due to the effect it can have on the gut.

Link to NICE guidelines on Coeliac disease

nice.org.uk/guidance/ng20/c...

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My ferritin level 64 ng/ml [20 - 275],

After my loading doses I told the doctor I didn’t feel any different and when I had the blood test in June I told the current doctor I still don’t feel any better but feel a bit worse so he put me on a the gluten-free diet for 2 months to see if there was some kind of absorption problem but told me not to worry that I don’t have coeliac now I’ve had the current blood test just gotta see the doctor again to see what the doctor is gonna do now, the symptoms I have are migraines, backache, general aching all over, tintitus, balance problems like when I try put my slippers on or bottoms on I nearly fall over when lifting one foot up slightly so have to lean against a wall or sit down & misjudge distance of things like doorways thinking I’m quiet a bit away then ending up wacking into them , not sure if it’s my dyslexia or a symptom on this but I get confused at times forgetting dates or having trouble remembering someone’s name or if I’ve met that person before if I’ve not seen that person that much and get get stuck at simple words for a bit that take me a bit to remember and some times forgetting something I or someone said 2 mins ago , I got a fast resting heartbeat to 88-120 , I suffer from acid reflux , left leg painful at night with freezing cold stinging water feeling along the thigh, painful left arm, more breathless in the last few months but I suffer from asthma ,

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"but told me not to worry that I don’t have coeliac now I’ve had the current blood test"

What was the result of the TG IgA test?

coeliac.org.uk/coeliac-dise...

It is still possible to have Coeliac disease if TG IgA test is negative if a person has IgA deficiency. I think that's why NICE recommend having a test for total IgA as well as TG IgA if Coelaic disease is suspected as a possibility.

As I said above, having a TG IgA test (tissue transglutaminase antibody test) straight after a period of eating no gluten may mean the test results are not reliable.

How many weeks were left between starting eating gluten again and the TG IgA test?

I'd suggest contacting Coeliac UK helpline and asking about reliability of results of Coeliac test.

Coeliac UK helpline 0333 332 2033

Some of the symptoms you describe read like some of the neuro symptoms associated with B12 deficiency. See links to lists of B12 Deficiency Symptoms in my post above.

Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage including SACD (sub acute combined degeneration of the spinal cord).

Everybody's metabolism is different so even if a person is eating B12 fortified vegan foods that may not be enough B12 for them.

Some vegan sources of B12 eg algal products contain B12 analogues. These b12 analogues may show up in B12 tests but can not be used effectively by body.

Link about B12 and vegetarian/vegan diet

b12deficiency.info/vegetari...

In UK, my understanding is that a person who is symptomatic for B12 deficiency should be treated. It's even more urgent if that person has neuro symptoms.

I am not medically trained.

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The only blood results that came back were for vitamin D, fbc, calcium, ferritin & Erythrocyte sedimentation rate,

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Saw the doctor today he said the blood results are fine I mentioned the vitamin D and he said 58 is still fine and to just leave it like it is, he said there’s obviously something wrong if I’m still feeling really tired, aching etc and said there’s 3 options 1/ being I probably need to do more exercise ( have no idea how the hell that will help me) 2 / take one less tablet of my nortriptyline at night as that tablet causes drowsiness and there was a option 3 but I can’t remeber is but he went with option 2 for the moment and told me to only take one of my tablet instead of two for 1-2 weeks then see how it goes, I doubt it make any difference, he also asked me if I was still taking my b12 injections I was like wtf I was only given the loading doses back in feb then told to see what the blood results say before they decide, if he had bothered to check my record in front of him he would of known that his the second doctor that’s asked me that, he then told me that I probably hear from them about the injections in sept then , which I doubt the doctors at my surgery told a load of crap at times they never seem to get the facts straight etc even when it’s right in front of them 🙄

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