I have suffered with Vitamin D Deficiency and Anaemia many times in the last ten years.
Gastric problems have always been part of my chronic health experience even before I got the answer about why they could be happening was likely to be EDS.
I have been suffering with IBS Constipation , difficulty swallowing and Muscle spasms in the gut for decades. I had several emergency admittances to hospital because of lack of movement in my intestines but with no explanation for the blockage by the time I saw a Consultant.
Obviously , I now know that this was caused by quite a common intestinal issue for EDS warriors called , Pseudo Bowel Obstruction Syndrome. I doubt that it will ever be added to my medical history though as there is only one Neuro Gastroenterologist in the UK , and my local services will never fnd a visit to see them.
I also had my Gall Bladder removed in 2014 despite having a good diet and being severely underweight ( it took a year before a Doctor was convinced my gall bladder was at fault for my infections and pain as I wasn't the right "type"to have gallstones). When removed ,however, they noted that it was saggy and full of stones,our nasty EDS tissue at work again!
I realised that along with my gut dysmotility and recurrent SIBO like infections that I was likely to be suffering from regular vitamin deficiency and adapted my diet and began to take supplements on top of a basic vitamin and mineral complex daily ( based on my own research of current studies for EDS and Fibro). In truth , I should not have vitamin deficiencies unless I cannot absorb nutrients properly in the gut.
Now , I have been found to be severely deficient in Vitamin B 12 , Iron and Vitamin D and will be tested for Intrinsic Factor tomorrow to check for Pernicious Anaemia or Vitamin B12 Deficiency Anaemia.
I have had yet another to and fro debate with my GP today because as ever they wanted to use supplements before injections until the results are through despite being informed that I have been supplementing for years and my Neuro symptoms have increased. I have yet to go the next round with the doctor about having an Iron injection instead of supplements which will be the next battle when the results come back.
So , I am asking for the help of either EDS Professionals and Patients
What have been your experiences with Gastro problems and vitamin deficiencies?
Have you got Pernicious Anaemia , or do you know how common it is for EDS patients?
Do you know what the most successful treatment is for EDS patients with nutrient malabsorption or Pernicious Anaemia?
Are there any other tests that I can ask my GP for to prove I have malabsorption linked to EDS , as it has never shown up in tests I have had before ?
Thank you for your help , I hope I will get some answers here that can help us all , and I will post again in the future with my experience of this and what I found to be successful in case it helps others.
Take care and enjoy the silver linings you find each day, no matter how thin they may be.
Bee xx
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Thank you so much for answering GiGi .Your experience is definitely helpful and relevant , it's the mixed experiences of Patients that really build up the pattern .
As you know yourself , because certain genes are related to connective tissue production or dysfunction , different people in a family can have many different Chronic diseases or multiple conditions that link to those faulty genes.
If you are really unlucky , like me , you seem to end up developing all the illnesses from both sides of your family and have a syndrome or disease for every letter of the alphabet , except for Q .
It was the reason I argued to get the Vitamin D test that I am meant to have each year but they keep trying to refuse , as I know there is the possibility that it is malabsorption of the gut ( similar to that seen in IBD , Coeliac and Ulcerative colitis ) because if my years of deficiencies despite a very well created Diet and Supplement plan.
If I am still deficient in Vitamin D as well as Iron and B12 I have better evidence to prove the malabsorption problem is happening even if it isn't Pernicious Anaemia.
I do take probiotics , and have a few spoons of probiotic live natural yoghurt with my medications , it definitely helps reduce the gastric reflux and IBS bloating . I was hoping it would also be helping me absorb the supplements but it looks like I am low on luck as ever when it comes to the hand I've been dealt in the game of Health Poker.
Oh well , keeps me on my toes . Take care and thanks for your reply , Bee x
Hi, sorry you are having so much to deal with. Just as a note, I don't have EDS. I have a long family history of PA and B12D of some kind, probably cellular/functional/genetic as it doesn't tend to get picked up until progressed to PA. Anyway, I just wanted to say (in case you get a picky doctor) that you are being tested for Intrinsic Factor antibodies, not Intrinsic Factor (which they don't do anymore - complicated and expensive) and also that a negative IFab test does not rule out PA as approx 30-50% will be negative even with PA. A +ve is usually diagnostic. You could ask for MMA, homocysteine, serum gastrin, GPC ab if needed. It can be hard to get a diagnosis and as you've been taking supplements that may well skew results. I am in the same situation, that isn't meant as a criticism. The Pernicious Anaemia Society (or PA forum on here) will be able to help if you are struggling. Hopefully as you are low in spite of supplementing, your IFab will be +ve and you will get a proper course of injections. Are you gluten/dairy/corn free? I am sure you've seen Heidi Collins for EDS Conference ehlers-danlos.com/wp-conten....
B12 important in POTS as is magnesium (which I use on skin, to avoid gut issues). Best wishes
Yes , I had the tests this morning .It only said Intrinsic Factor on the envelope but that will probably stand for the IF antibody test .
They didn't give me any advice about stopping taking medications , as they should if they want accurate tests , but luckily , the years of experience navigating the health system made me check for myself and I stopped last week.
Of course , that's made my neuro symptoms even worse.
As it is both my Iron and B12 were both in the severe deficiency range despite my diet and carefully taking supplements with values of 200% - 300% RDV each day , with the right meals to get the most absorption.
Thank you so much about the handy tip about the test accuracy. I will definitely discuss this with the GP I usually use .
I haven't seen the Heidi Collins clip so I will watch it today , again thanks so much.
They tested for autoantibodies, full blood again, folate, and coeliac for the fourth time!!!
The fact that I keep getting malabsorption issues with no coeliac or Crohn's should have made them consider PA or malabsorption from other connective tissue disorders.
Unfortunately , I had slipped back into the usual GP Practice nightmare with this situation because the original blood count tests were not looked at by the GP whom ordered and so two other Practice doctors were dealing with it , with no experience of rarer Chronic conditions . And just trying to follow the protocol for a standard patient not one with pre-existing conditions.
Drives me nuts , it only takes a minute to read a Patients Medical History Summary and I have made sure mine is up to date , if they did that and just googled the conditions they don't know about it would save me a lot of time and stress having to explain why I need things .
After the years getting each part of my Chronic Illness issues , I'm not surprised that this could be the same battle too. Especially if the lab do what they often do and ask for a new blood sample , as I did manage to get my first B12 jab just after the tests.
By this morning I could hardly walk or speak clearly and my joints were wobbling precariously to pop out of place.
I only had a very nasty hip sublux/ dislocation about a month ago which I have just got over the muscle and ligament strains from , I can do without anymore.
If you are on the PA forum yourself , I'm sure you will see me popping up there too soon . I wonder whether Health Unlocked give awards for the amount of forums people have to be members of , I seem to be collecting conditions like daisies at the moment , I must be in the running for a medal by now!
Take care and any more info would be greatly appreciated , Bee xx
Something that you will know .Did you experience a big change in weight and were fat collected on your body when you originally suffered with PA?
Did you also get chest pains and numb arms and legs?
I put on over one and a half stone in about 5 weeks with no change in my diet , and I'd actually been doing more activity.
The weight totally deposited as fat building up on my stomach and chest and upper back.
I also seemed to be loosing size in the muscles on my arms and legs .
I had put this , and my increase in Autonomic symptoms , to a possible flare in my Dysautonomia , of course I know now that Vitamin B 12 deficiency can cause lots of Neuro and Cardiac symptoms alone.
Does make you wonder why Doctors do not regularly test for Vitamin deficiency issues in people with Chronic illnesses whose symptoms suddenly get worse , when it is a well established fact that most Chronic Illnesses cause vitamin depletion even if you don't have absorption problems.
Hi Bee, sorry for delay and for any confusion caused. I don't have PA, or at least if I do I don't yet know about it! Dad and I have been taking increasingly large amounts orally/sublingually for most of our adult lives in an attempt to hold back the tide - not working as well as it was, so trying to get more testing. Looks genetic so awaiting referral. His mother, her mother, sister and brother and their mother all did. A recently bought book suggests that the change to DNA methylation as a result of insufficient B12/folate predisposes us to autoimmunity and PA further down the line. B12 metabolism is particularly strongly genetic. I also have vitiligo (linked to B12 as is hyperpigmentation), fibro, raynaud's, SFN.
Anyway, to try to answer! No, I don't think I put on weight. I had been gaining (likely poor thyroid hormone levels which may also be due to the lack of B12 according to the book), then lost a lot as not absorbing anything much, then put most back on as I got the absorption under better control. Dr Chandy, who wrote this particular book, suggests on his website that high levels of homocysteine may be held in the fat cells and can cause lumpy skin. My understanding is that B12 deficiency can cause muscle loss as can lack of vit D, no doubt others too. I started using a predigested amino acid supplement as well as vits and minerals while I tried to work out what was going on. Chest pains and numb arms and legs - absolutely. It was increase of area of numbness after 20+ years that got me a referral to neurology and a small fibre neuropathy diagnosis last year.
Like you I wish that doctors would test for deficiencies, or consider depletion due to prescribed medication, but they rarely do and don't get the training to do so. In some ways, I wish they would rely less on the tests and more on the symptoms but as you have obviously experienced too, they don't always do that either.
I'm pleased we'll see you on the PA forum - lots of lovely helpful people there. It is slightly more weighted towards PA than B12D and other causes which is perhaps a pity, but I am a PAS life member and very glad to be one. You haven't said how low you tested and how much you were supplementing pre-injection. Unless you are vegan with a nitrous oxide habit it is unlikely that you have causes that you can fix without supplementing long term and as you have neuro issues you should get every other day injections until you cease to feel benefit. Clearly you do not want them to test your serum B12 now you are injecting as it will be high but gives you no idea if it is getting into cells - only your symptoms reducing can tell you that. (Bear in mind, as I'm sure you know, that as nerves start to repair you may feel worse rather than better to begin with). As you have low B12 you may not need to check homocysteine/MMA - they are more used for those with obvious symptoms but 'insufficiently low' serum B12 as additional markers of cellular deficiency, but taking folate or B12 will start to reduce them so they may be less helpful. I'm glad you knew to stop things for testing, but some affect on a longer basis. B12 testing is less than perfect in a number of respects and your level may well be even lower than the test showed. Any hints from your MCV/RDW etc? Not easy to read when you have both iron and B12 deficiencies - I'm in the same situation. My folate was high, which I gather can be because you aren't breaking it down due to lack of B12, and it lowered nicely to mid range when I started a small amount of methylfolate with my methylcobablamin. I got some clear benefits with methylfolate. You may not, of course, but don't assume all is ok if your folate is high, especially if you either weren't supplementing or were supplementing folic rather than folate. Depends where your particular absorption and/or metabolism issue(s) are.
Unfortunately, coeliac testing is a whole other minefield. It isn't accurate enough to assume that you are not coeliac (either from blood or biopsy) and certainly can't rule out some other kind of gluten disorder. It is sadly very likely that gluten will prove to be an issue for you, even just in exacerbating the autoimmune response. I was lucky in some ways - I quit gluten in 2017 due to reflux and got an obvious and unexpected benefit so will never eat it again. Better again when I ditched dairy and again when I stopped all grains (corns and oats and rice were especially problematic for me). There are private tests available for whilst still eating gluten or full genetic testing once off, but both were financially prohibitive for me, and to be honest I'm not overly fussed. I know it doesn't suit me, so I don't eat it. My neuro fortunately thinks that gluten contributes to neuro issues, although he said not all neuros do.
Hope something in that epic makes some sense! Not at my best - partner has Covid and I'm not properly back to my 'normal' after having it 3 months ago. I knew it hit B12/folate so doubled intake and added adenosyl and hydroxo to be on the safe side, but still got back some symptoms that the methylfolate fixed in 2019. Huh.
Thank you for your help. It made perfect sense and I'm impressed by it and really appreciate your help , especially as you will be feeling run down after COVID and possibly more Fatigued keeping an eye on your patient.
I've joined the PAS group , and you may notice I've put up a post already .
I'm pretty sure whether it's is Pernicious Anaemia or B12D from malabsorption it's going to be yet another life long thing to have to maintain so you will see me pop up their like a badly nourished penny too!
My results were B 12 94 ( range 150-900)
Ferritin 8 ( range 15-300)
My platelets had gone up again to 443 ( upper level should be 400)
MCV 115 ( range 80-100) with MCH right on the top number of its range.
They only did the folate test this morning with the intrinsic test.
They mucked up the first Vitamin D test but I know from the symptoms I have been having , and the times I had D deficiency before it is deficient again.
My knees and hips are more bandy , bendy and trying to sublux with any movement .
I wish I hadn't worn navy palazzo pants and a Breton striped top today as , even with my sticks , I'm sure I had all of the appearance of a drunken Russian sailor ,' erlie in the morning!"
I'm not sure if the homocysteine test was one she did today but I will definitely request it now I know it would be useful to be done.
Like you , I have been trying to hold off the inevitable , and trying to reduce the chance of vitamin and mineral deficiency that is common with EDS and Fibro ( and can add to our symptoms) but it certainly doesn't seem to be enough to try oral nutrition anymore.
My supplements for all the big vitamins B 12 , D , C, E , B6 and for iron and magnesium were between 150-250% RDV. Plus I have a very nutrient rich diet and take my supplements with the right foods for the most absorption.
As an EDS sufferer , I know that it is better to eat Animal Collagens as we have difficulty processing enough collagen as it is and animal is converted more efficiently than vegetable , sometimes a health issue dictates your diet , not your preferences as my friends vegan daughter discovered ( whom also has EDS) . Her injuries and dislocations have reduced by 70% after returning to eating eggs and fish.
I eat lots of oily fish and shellfish , eggs , lactofree dairy, chicken, turkey , lean pork or ham occasionally , one lean rare steak a week , sometimes offal , beans , pulses , lots of green veg , mushrooms , probiotic live yoghurt , oats , nuts and seeds and a really diverse group of fruit and veggies. Little sugar , virtually no processed food , no artificial sweeteners. Very little in white carbs ( the occasional piece of homemade cake , sourdough bread or white spuds with skin on) , and the majority of my food is homemade.
I know I also suffer from low Vitamin A because it is one of the causes of my Dry Eye Syndrome , and I have to use a vitamin A gel on my eyelids to get them to produce the oils that they should.
Looking forward to the results on Friday and the next injection ( if you know what I mean!) Take care and thanks again , Bee xx
Had to chuckle at the drunken sailor....No doubt about your B12 deficiency then! And that ferritin is horrible. Thanks for the vit A tip - I take it, but haven't tried applying it, so will give it a go. Sounds like you have a plan and have plenty of knowledge already, which we need, let's face it. RDVs aren't always so helpful when we have absorption issues and can be really inadequate. I'm taking 2000iu vit D in summer and 4000iu in winter to maintain a good level and it varies hugely from one person to another, so all you can do is test, supplement, test. At least that one is relatively cheap and easy to do at home. I take 5000mcg daily of B12, in divided doses. Be a bit cautious with too much B6 as it can cause neuropathy in deficiency and excess. That is the only one my neuro was concerned about but lab refused to do his requested test so we are waiting for results of a second attempt. I only take a small amount and it is P5P so I doubt is a problem (which is supposed to happen predominantly with pyridoxine). Unlikely about homocysteine - it needs to be kept on ice and processed fast and they don't usually do it unless your B12 is 'borderline' but symptomatic, and yours is way below. It is possible to have B12 deficiency at any level of serum B12, which is where these extra tests come in handy if you can get anyone to do them. Make sure you get a copy of your results (as if you didn't) and good luck xx
Always do get my results , it is the only way you can see that they haven't missed anything.
Plus , I've learnt , again from trial and error , that you can often be right on the border with a blood test and they just say normal on the phone.
If you know it's borderline you can usually take steps to change the Self Care and avoid things getting worse.
Another thing the doctors don't think about with a normal comment , they could save themselves a lot of extra work by spending an extra couple of minutes giving some advice when things are low or quite high.
If they could learn to be preventative with Diabetes and Cholesterol tests I don't understand why they don't realise that they could prevent a lot of illnesses by advising people on other nutrients too. Part of the problem is they often seem to forget how important deficiency can be in the progress of diseases.
I take 3000iu in Summer ( part in a multivit and part separate with my fattiest meal of the day for better absorption). Like you I take ,4000iu in Winter.
I am taking methyl cobalamin separate from my multivit amount and away from vitamin C , close to your number.
I take an easily digestible form of iron because of my constipation issues with the same dose as is usually prescribed and at the same time as vitamin C.
I also take extra Magnesium , K2, and Omega 3.
Thanks for the tip on B6 .
It's funny the "6's" are all things to be careful of.
If you have inflammation problems and swelling joints you should keep away from Omega 6 as it has an inflammatory effect on the body and can make joint pain and neuropathy worse. My physio actually told me to avoid it. I use a pure Omega 3 .
I also take one capsule of Turmeric a day for IBS relief and probiotic yoghurt .
Good luck and the best health you can have , Bee x
I've recently been dx'd with EDS - don't know which subtype yet - which certainly answers many Qs re my many health issues experienced over at least 30yrs.
I was dx'd with 'probable' PA about 15y ago on the grounds that my serum B12 was below range, I have macrocytes (rbcs >100 units) and I always test +++ for gastric parietal cell antibodies. I am -ve for IF ones (a +ve result would have earned me a defo PA dx). Functional IF and GPC are both needed for vit B12 absorption.
I have never been anaemic (ie having a low blood haemoglobin), which is not unusual for those with PA, I believe. My RDW is always at the lowest end of normal (~12) which means that my rbcs are not being replaced often enough. Perhaps this explains why my Hb is in normal range, but may not function well?? This is in keeping with my abnormally low reticulocyte level (33, [42-126]), as retics are newly formed rbcs.
My vit D was also low and my GP prescribes an oral supplement. I think this reflects poor gut absorption, even though vit D is also produced from sun exposure.
Thankfully, I have an excellent GP who prescribes B12 injections every 10wks, after the loading dose given over one week. Do I feel any better just after the dose - unfortunately not! My GP did think investigation of bone marrow function might be appropriate, but this was refused by the consultant haematologist at our local hospital. 🤷♀️🤷♀️🤷♀️
I also post on the PA site from time to time and they are indeed a lovely bunch, as Bookish said earlier. They thought further investigation of possible under medication of B12 was necessary, but my GP disagreed.
BTW, I have similar IBS/gut issues to you. I was dx'd with IBS many years ago by a consultant gastro, given Mebeverine and left to get on with it. It turned out that I'm allergic to Mebeverine, so that was that. My weight fluctuates quite widely, but I don't know why.
Please feel free to pose any other Qs - I'll try my best to help.
No delay at all , and no need to apologise it's very kind of you to reply.
I'm very annoyed by your rejection for a bone marrow test by the Consultant, had your figures improved enough to make them believe it wasn't important and that it must still be B12 Deficiency alone?
Your GP can actually do a bone marrow fluid sample themselves and send it for labs , but they may not feel able to do so.
Interested by your time on a loading dose.
Is that a yearly thing?
My loading dose is going to be three doses a week over three weeks and then depending on my Intrinsic Factor results a dose every 2 or 3 months a year.
Do you know which type of B 12 injection you are getting?
Because I have intolerances , and suspected MCAS , I know I can't tolerate cyanocobalamin ( I got another reply from someone also saying this wasn't the best).
I made sure I was getting the naturally derived Hydroxocobalamin.
There are also a couple of other options of types of B12 injection if you aren't responding well to the one you get.
Are you also taking a standard daily dose of B12?
I used to take Mebeverine years ago for gynae pain , interestingly I did not suffer from the pain of IBS until after I stopped it . I take Buscopan now for IBS , and one ( not the recommended two) Turmeric capsule a day and probiotic live yoghurt through the day and the pain us not as bad as before. The biggest help to that was my change in diet and then the nerve part of it was improved by taking a medication to treat my Dysautonomia.
If you really feel that your symptoms are still not being improved it is worth pushing for more tests , not just for PA or B 12 deficiency, but also as some other people suggested to me on the PAS forum , adrenal , thyroid and other hormone tests.
I would definitely consider checking which B12 injection type you are getting though , it could just be you need a change in type to feel the benefits.
FYI, my vit B12 regimen:Hydroxocobalamin 1mg/1ml solution for injection ampoules - 1 ampoule - 1mg to be given by intramuscular injection every 10 weeks.
I do have a good GP! My rheumy thinks I may have MCAS issues. I hope this will be investigated when I - eventually - get an appt at the Genetics/ EDS clinic at our regional hospital (I was investigated by them for many yrs for an 'unusual muscle disease' - but they never considered EDS, even though they noted that I was hypermobile!).
Adrenal, thyroid, HPA axis problems have all been investigated over the years. May I ask which medication you take for dysautonomia, as I 've also been dx'd with this.
To my understanding, it's standard to have a loading dose of B12 injections over one week ( to build up your depleted bodily store) and then to have an injection every 10 or 12 weeks for life. If your IF and/or GPC antibodies are +ve they will remain so, despite medication (with some fluctuations, due to lab measurements more than anything!). You will achieve your systemic load of B12 from the intra muscular injection (which bypasses the gut and goes systemic immediately, hence absorption - or not - via the gut doesn't matter).
Have you considered that you may have B12/absorption problems and may also be losing rbcs, perhaps via a bleed in the gut? Hence you would have some of the blood features of PA and also that of simple anaemia (ie loss of iron)??
No thank you , that's interesting.I'm pretty sure I have malabsorption in the gut because I have other deficiencies now and have done in the past , but nobody has taken the time , or thought about checking it once they found I didn't have Coeliac or U. Colitis.
I am pretty sure both my Neuro and Physical gastric issues are linked to the EDS from my research.
All the elements fit the pattern with EDS and Dysautonomia with possible MCAS.
Unfortunately we have no units or experienced EDS Specialists in Wales. My only hope to get an answer on MCAS is if the genetics service choose to test for it when I visit or recommend that I am referred for it. Doctors will not refer anyone out of Wales for treatment unless the service is free . It is the fault of devolution and breaking up the Health Service . The regional post code lottery for care.
That's probably also why they use different loading times and time between injections too.
My Dysautonomia is like POTS but is actually caused by a genetic nerve fault , it's called Sinus Node Reentrant Tachycardia. I used the usual Dysautonomia help at first , moving slower , drinking water before moving or after standing , more salt , compression clothes , only gentle activity. No bending to the floor or standing still too long and raised legs as I sit.
It wasn't enough for me so they put me on Ivabradine .
This was not great alone as it gave me hypotension then my tachycardia got worse when my heart tried to correct it. It appeared to me that the EDS connection to less strength in muscles and viens could also be a factor and as things got worse I was put on Midodrine Hydrochloride as well.
That has made a big difference to my quality of life.
I'm still having problems but I do have less pain , migraines , dizzy spells , faints and seizures. I do think they need to really connect the dots if all your illnesses before you get Dysautonomia under control .
If other illnesses aren't well managed it increases Autonomic problems it's not just a heart problem but is often treated as such .
It's a neuro problem but neurologists don't ever seem to have any interest or experience treating it.
It also makes a big difference to which medications will help or make your Dysautonomia much worse if they don't find out the underlying causes of it. The worst thing done for me was giving me Beta blockers because I had hypotension but a high heart rate , not a blood pressure problem.
Thanks again for your reply , I was probably avoiding the idea of a bleed in the gut or cancer , really , which is a family issue but they have checked for it many times before . I will discuss things further with my more knowledgeable GP.
many drs in the uk dont even know what eds is . Ive been fighting for years to even get the hypamobility taken seriuuosly let alone the stumoch issues ive had. Now diagnosed with ostio. Drs dont wanna engage about EDS. IM SICK OF FIGHTING TO BE HEARD. Orry bout caps locks
I have diagnoses of both Pernicious Anaemia and hEDS though the hEDS almost certainly came from my mum’s side of the family and the PA probably my dad’s, so I might have just been unlucky. 😭
Having said that, my bloods suggested either a) an early stage of classic PA plus skewed B12 levels coming from oral supplements and/or b) functional B12 deficiency. That, plus my reaction to folic acid, prompted me get my MTHFR tested and from the reading I’ve done, that does show a potential link between the two. MTHFR mutation has been suggested in peer reviewed scientific literature as involved in both hEDS and functional B12 deficiency. If you’re interested I can try and dig out some links. But unfortunately there’s a lot of crap written about MTHFR plus many doctors are sceptical, so you have to be discerning in your reading.
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