Hi, im suffering from really severe bloating. I look about 7/8 months pregnant all the time. Nothing helps. Im not constipated, quite the opposite. . I was diagnosed b12d in may 2017. Plus low/ normal vit d. Im taking d3, k2 and magnesium fir the low d and folic acid to aid the 12 weekly b12 injections plus spatone to try to raise my ferritin which was also low/normal.
The bloating is so bad its causing breathing difficulties and exacerbating low back pain.
Does anyone else suffer this horrendous bloating. I cant wear waisted clothing and I am extremely exhausted.
Could it be the d3 im taking increasing the calcium levels in my bloods?
Could it be a symptoms of b12d?
Or is it something more sinister like a tumour
Help?
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Debsaf
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Not sure if you've explored food intolerances but I was the same, my shape would change in minutes and I was so uncomfortable. I've cut out wheat - all gluten in fact, dairy and also onions and garlic (see FODMAP diet) and the bloating has virtually gone. However have you looked into thyroid problems as a possible pre-cursor to all your symptoms? If not go to Thyroid UK...and don't take any Dictorvtelling you your thyroid bloods are normal at face value! Good luck with it all.
For years I looked pregnant and suffered from IBS type symptoms then I gave up gluten and reduced dairy and sugar and the bloating went.
Have you been tested for Coeliac disease?
In UK, NICE guidelines mention that anyone with unexplained iron, B12 or folate deficiency should be tested for Coeliac disease.
Two first line tests are recommended for Coeliac disease.
1) tTG IgA
2) Total IgA
My experience is that in UK, the Total IgA test isn't always done but it's an important test because it shows which patients are IgA deficient. People who are IgA deficient need alternative tests for Coeliac disease.
Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. Makes it clear that people who are symptomatic for B12 deficiency should be given an Intrinsic Factor Antibody test and initial B12 treatment.
12 weekly B12 injections are typical of the standard UK B12 treatment regime.
Do you have neurological symptoms eg tingling, pins and needles, tinnitus, tremors, memory problems, balance issues plus other neuro symptoms?
If yes, then recommended treatment regime in UK is...
A B12 loading jab every other day for as long as symptoms continue to get better followed by jabs every 2 months. See BNF link and BSH Cobalamin and Folate Guidelines link above.
Unhappy with treatment (UK info)?
Letters to GPs about B12 deficiency
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
I too was diagnosed b12d in May. Huge battle with doc for more frequent injection
Does not agree symptoms are neurological, also that my b12 is now "fixed" after 6 loading in june/july and 3 maintenance 13th September 10weeks afrer loading coz I begged, end November 12 weeks and 5th jan (not due til 20thfeb) because I was in doc appointment stating bnf guidelines for neuro and while she refused more loading she wanted rid.
She was going to refer to neurologist but decided gastroenterologist for endiscopy as she now thinks I have celiac and not b12d. Had referral letter in January 40 weeks waiting list.!!!! Not given any test for celiac that you mention.
Back in beginning october she thought it may be ovarian cancer or infection causing bloating did tests ca125 and crp test, they came back normal.
I only ever felt benefit of injections after 5&6 loading. Felt really good. But have had No benefit from any maintenance ones.
They took bloods to apparently test intrinsic factor less than 20 hours after first loading injection. Needless to say the only result that returned was a b12 >1500 with recommendations that it is normal and adequate for two years.
So to answer your question, no I have not been tested for PA!
I recently joined the Pernicious Anaemia Society and am most of the way through Martin latest book. He did telephone me to thank me for joining and told me to go back to doc and demand a diagnosis using the PAS as support and print and provide her with up to date information on diagnosis and treatment from the PAS website. He also said to tell her she can ring him.
I have read much of the lovely links you gave me too and have penned a very long letter to doc but its unfinished and too long. Need to address that and Martin advice this week.
Many thanks for the huge effort you made I really appreciate it.
That happens to me. Ive been diary and soy free for over 5 years. It's not lactose intolerance, it's a protein intolerance. I have now gone gluten free in the last 5/6 months and feel fantastic as the gluten intolerance symptoms were very similar to b12 deficiency. It appears the majority of the breathless Ness was caused by the gluten in my case. Unfortunately all this was through hard work and self diagnosis as doctors seem to totally overlook how food intolerances affect bodies.
I very rarely eat bread and pasta maybe once a year. My bloating seems to be permanent and nothing in particular seems to trigger it. More like everything and nothing. Doesnt matter what I eat or drink or not I am bloated. And its getting worse. Have some diahrrea for past fw months which is unusual for me but no weight loss, quite the opposite.
I usually cook from scratch with fresh ingredients, never eat cereals, rarely bread, almost never pasta. However I will start to check my other ingredients just in case.
When my bloating was at its worst, I ended up doing an elimination diet - essential basics for 6 weeks then adding one of the fodmap items for a week, then a week back to basics, then another week on another fodmap item. The gut needs time to heal and the body takes at least 2 weeks t clear what's in the gut. When you're trying something, you should only try one new thing at a time so it's obvious what is/what is not helping.
I stopped eating gluten because of b12 like symptoms, not for the bloating.
Hope you find a system that will help you identify your issue(s).
Sorry I'm new to all this, half the stuff being said I really don't understand what's that what's this. I'd to skip last loading dose today go on Thursday instead. I constantly poop with IBS no weight loss, and so bloated it's disgusting and I suffer nausea 24/7
To be honest, the doctors will only treat what they can either physically see or results from blood tests and they only treat one thing at a time, they're not looking at the whole person. From personal experience, they totally ignore food as a problem. My bloating was from milk and soy protein (not lactose as this is the sugar from milk) but my fatigue came from gluten. My issues are intolerances rather than allergies and they don't show up on allergy testing. Unfortunately, it's a case of you having to find out what you're issues are as everyone is different. I am now stretching out my B12 injections as I don't think I'm actually B12 deficient - im thinking it was the gluten all along. However, I will be taking my time in stretching out my injection intervals just in case!
My advise - get your loading doses over with and see if there's any improvement, if not, try to see if you can work out if there is a food problem but remember, your gut takes at least a week to totally eliminate something. It took 2 months for me to see a big enough difference when I stopped eating gluten last year. It also requires a fair bit of planning, time and research.
I'm constantly bloated, and recently GP put me on iron tablets which gave me such an upset stomach and it blew up huge (it was low/normal) I also find b12 tablets give me terrible heart burn, think it's a gastric problem aggravated by the supplements we are low in the first place due to the gut possibly if that makes sense? X
My mother suffered from severe bloating for years, to the extent you describe. As well as having pernicious anaemia, she was hypothyroid. Neither was diagnosed or treated, although she frequently asked doctors for help. Eventually she was diagnosed, but it was far too late. She had brain injury from this and other sequelae. Finally I got her treated with dessicated pork thyroid, after my own doctor tested her T4 and T3 and found that she was not responding to thyroxin. This has made a huge difference. So I would say that it is important for you to get tested for t4 and t3.
You could try 3 months on a Probiotic, not sugared yoghurt forms that would feed any bloating but a good branded tablet or powder from a health store, ask the assistant for advice.You may find the bloating reduces in a week ,but continue the course.
Since you are gluten, dairy and sugar free already, maybe now what you need to do is balance your hormones. That’s usually the last link in the chain to getting well.
From what I understand estrogen is a cell proliferator. That means it multiplies the fat cells and they stay on your middle. This is estrogen dominance. Your probably progesterone deficient, like most of us.
I started using a product I purchase from Australia and stopped HRT (prometrium). It made from wild yams. It doesn’t have progesterone in it, but what it does have is diosgenin which, when you apply it, helps your body to make its own progesterone, and that helps balance the othe hormones, (estrogen, testosterone and your adrenal hormones).
The good news is your tummy should go away without any effort. It has helped me tremendously. It lifted me out of a depression. Progrestrrone I understand is your “Hapoy Hormone”. My husband loves the new “Me”!
its worth asking doc to test my hormones. which is in fact what I had originally thought last May when ifelt so ill and went to docs. I was discovered to be B12 deficient. when I asked doc to check hormnones she said that all it would tell us is that I was post menopausal so no point.
I seriously have lost all faith and trust in my GP
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting
NHS extremely unlikely to test antibodies or FT3 if TSH is in range.
"have penned a very long letter to doc but its unfinished and too long"
The person who runs B12 Deficiency Info website can be contacted by e-mail and may be able to assist with writing letters. See letter writing link further down this post for a template for writing about under treatment of B12 deficiency with neuro symptoms.
If you are in UK, my understanding is that letters to GP are filed with medical notes so are proof of issues raised. I'd suggest keeping own copy.
"I was in doc appointment stating bnf guidelines for neuro "
My experience was that GPs are more likely to take notice of information in letters as these are harder to ignore than things mentioned in discussion or on copies of documents handed over, which may get put on one side and forgotten about. I would add a warning that some GPs may be irritated by patients writing letters.
"She was going to refer to neurologist but decided gastroenterologist"
CKS link in my post above mentions that doctors should seek advice from a haematologist for person with b12 deficiency with neuro symptoms.
"Does not agree symptoms are neurological"
Symptoms such as tingling, pins and needles, tinnitus, tremors, memory issues, balance problems are normally considered to be neurological. Might be worth listing all your neuro symptoms in any letter you write. I gave my GPs a copy of PAS Symptoms Checklist with all my symptoms ticked.
Neuro Consequences of B12 Deficiency
Might be worth mentioning neuro consequences of under treatment of B12 deficiency in any letter as GP may be unaware of these.
Have you tried to see another GP if your current GP is denying you have neuro symptoms? Are you in a position to go privately although this is no guarantee of better treatment?
See HDA patient care trust link in my post above.
I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"
Family History
Is there a family history of auto-immune diseases eg PA, Coeliac disease, Thyroid disease, diabetes etc. If yes, is GP aware of family history?
Have you ever got a complete set of medical notes? Can be very interesting to see what GPs have written....
"took bloods to apparently test intrinsic factor less than 20 hours after first loading injection"
I thought medics are supposed to leave at least 48 hours after b12 injection before testing IFA (intrinsic Factor Antibody) and possibly longer. Perhaps PAS might know more?
There is a section on PAS website for Health Professionals. Your GP may be interested in fact that health professionals can join PAS as associate members for free.
I'd suggest putting any thyroid results on Thyroid UK forum on HU.
"Not given any test for celiac that you mention."
Hopefully the gastro specialist should consider possibility of Coeliac disease. Might be worth telling them you have not had any tests for Coeliac disease.
All the GP is going to test is your FSH, LH and prolactin. I know because I had my GP check mine, which showed that I am post menopausal.
So I went to a naturopath and had a full female panel done which included my thyroid as well. She used a saliva and blood test which is the best. I found out that my levels of estrogen and progesterone not what they should be., and that I have high cortisol.
Since I’m using the cream to help my body balance, I’m going to do a retest in a few months to see where I am.
Hi Debsaf , if you have not been tested for HPYLORI I would urge you to do so. These were the symptoms I was having along with the usual exhaustion, breathlessness etc. I was found to be b12, folate & vitD deficient and not celiac. ..No other tests until I googled the bruising & bleeding gums along with the b12d I had, which suggested Hpylori infection. My doctor wasn't interested in testing me for it but I persisted. Days later I received the call to come for treatment for positive HP. It's worth getting tested even just to rule it out as it is definitely one cause of b12d . Good luck
Thanks Sleepybunny , I am angry that I had to self diagnose Hpylori through finding out my leg bruising, bleeding gums & nosebleeds (all disregarded & not investigated) was thrombocytopenia . I had been complaining for around 3 years regarding stomach issues which was put down to IBS. I only discovered my deficiencies after my sister begged me to ask for a thyroid test, my exhaustion had always been put down to depression 👿. What makes it worse is the fact that my father died from stomach cancer !!
When you were tested for h-pylori, did you just have the breath test, or did you have a blood and breath test? I have had my breath tested only, which I hear, can be inaccurate. Thanks .
I was diagnosed through a blood test. 6 months later I had the breath test to see if it has been eradicated. Unfortunately the result was that I am " in the grey area between positive and negative" so I'm now waiting for an endoscopy 🤔
Hi there! I too suffered with painful bloating and looked very pregnant. I did remove gluten from my diet and it lessened. After several years I also removed dairy, sugar and vegetable oils which seemed to trigger the boating on few occasions. It's possible you're suffering with some kind of guy health problem. With an unhealthy gut, it's more difficult to absorb nutrients such as b12 and vitamin D, leading to those deficiencies. Have you been tested for celiac or tried a probiotoc/prebiotic regimen? I hope you start to feel better. That bloating is no joke!
You have had a lot of good advice and information to digest and keep you busy.
First and foremostly consult your local doctor and request a referal to gastroenterologist. I had similar problems which was due to chronic autoimmune gastritis and h.pylori a bacterial infection which needs antibiotic treatment. I would encourage you to get a diagnosis before doing anything else.
I find that OptiFibre, a plant based support for the colon is also extremely benificial, it can by sourced easily on the internet.
Today she took bloods to test h pylori and celiac and thyroid and parathyroid and hormones and intrinsic factor although I believe this will be skewed as I had an injections on 5th jan and took sublingual b12 and a bcimplex til 3rd feb. I told her she may have to diagnose as AbNegPA anyway
Agreed to every 4 weeks injectns tho so thats a small results
Hi Dabho. Just a quick thought...heliobactor pylori is usually tested via a breath test (or during an endoscopy), so won't have been tested via blood tests.
Your GP can do the breath test for you...and will need to be treated with double/triple antibiotics (depending on the regime used) if the test is positive, then re-test two to four weeks afterwards to ensure that the therapy is successful (if still present, repeat the eradication and re-test regime).
Note: PPI's (lanzoprazole etc.) can skew the test results - need to stop two weeks prior to test if you're on them).
Worth getting done because those with PA / B12 deficiency are more prone to infection with heliobactor...and it might just be responsible for your gastric symptoms (or some of them) and your B12 deficiency.
Hi Dabho. Good grief, forty weeks is an astonishing amount of time to wait for an endoscopy.
If certain symptoms are present (as I suspect may be the case for you), advice to medical professionals (in the UK) is to refer under the two-week referral scheme.
Might be worth asking your GP to arrange this for you (and perhaps should have done in the first place 😉).
And yes, urea breath test for heliobactor pylori is a fasting one (four hour fast prior to test), so if you go fasting then it might save another visit. Quick test so no reason why your GP can't do it there and then.
Thank you again for your information. I did say to her that I thought 40 weeks a long time. She then took bloods for tests I mentioned before which included h pylori and celiac.
Im sure she mentioned a possible referal to general medical assessment.
I have only been having injections every 12 weeks. Just persuaded doc for every 4 weeks starting last Wednesday. Couldn't persuade her for more. I'll keep trying though.
How did you get weekly? Are you in the UK
I'm only taking spatone liquid as my iron supplement.
Doc just taken bloods for many things including H pylori, thyroid, celiac and intrinsic factor.
I have heard about the apple cider vinegar. I may just have to give that a try.
Yes I’m in uk. My GP was great and agreed to inject weekly as I showed him the right treatment for PA. I had about 12-16 injections (1weekly) and then GP retired suddenly and new doc came in. He stopped so I had to buy from versandapo (German company online). I self inject 1 every 2 weeks and take 1 tablet 400ug Folic Acid daily.
After continuing 1 a week for a while I reduced and now I’m on regular 1 every 2 weeks injection.
B12 increases your metabolism and for me it really helped with bloating and general stomach discomfort. If I don’t inject after 2 weeks, in the 3rd week my symptoms return. I use Hydroxocobalamin.
You’ll be very lucky to get more than 2 monthly injection from gp.
I had to self inject but I don’t regret that at all. Injections are not expensive and I feel much better.
I have not been doing so great on the 12 weekly. I took lots information in to doc as she had been so adamant I didn't need any more than 12 weekly. She conceded that I could try more frequently but only as far as 4 weekly. I have only just had the first of that new regime. Previous injection was 7 weeks prior.
I have felt better since that injection but it was on Wednesday so I will monitor how long that lasts. I hope it will last the 4 weeks but if not I will mention it to her, again! I see her again on 7th march to get some results as mentioned.
I have everything from versandapo and medisave ready to self inject should I need to.
Thank you for telling me how your symptoms resemble mine and how you manage it.
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