Ok so my 15 year old daughter had low b12 stores few years back and tested positive to parietal cell antibodies, was put on b12 loading injections then 3 monthly, we stopped injections 6 months ago on advice from pediatrician to monitor her b12 to try and confirm PA, retested twice 3 months apart and b12 held its own on 1st test and had actually increased on second test, she was also low on iron in the past, we stopped supplements of iron and iron stores and serum are now best ever been, my question is she suffers terribly when she consumes dairy or even too much food, shes in toilet, headaches and sometimes says light hurts her eyes, she has not been diagnosed lactose intolerant but has suffered since around year 5 with this stomach issue, can anyone relate or give me some advice for when we see doctor next for more bloods?
Want to hear from others with lactose... - Pernicious Anaemi...
Want to hear from others with lactose intolerant
The normal advice from the people on this group is to ignore the numbers and concentrate on the symptoms.
Did she have any symptoms of a B12 deficiency before the loading injections? Did they improve after the injections? Have they reappeared after the injections stopped?
The parietal cell antibody test is no longer recommended because too many people without PA are positive.
What were your daughter B12 numbers, before injections and the two since? The B12 test is neither precise, nor accurate, you can test the same sample twice and get numbers that differ by up to 20%. So if the two post-injections tests were similar it might not really mean that the level had gone up.
Have you had investigations for food intolerances - particularly gluten and FODMAPs - as well as dairy. The comment about 'too much food' causing problems sounds like me and FODMAPs. I can eat a normal portion of mushrooms, for example, but a thick mushroom soup will have me in the toilet eight hours later. It's the same with onions, and bread, and pulses, and some fruit.
Her last b12 had risen by at least hundred without injections, symptons before injections were mainly tiredness, headaches and at 1 point unsteady gate, she was also low at that point on iron which readings are good now, she seems good otherwise now , apart from the stomach issue, i will try find blood tests to post and i think on next appt take it up with doct, in the meantime im going to try the enzymes you can take for lactose prior to meals to see if any difference.
Hi,
Have you considered joining PAS?
They have some non UK members.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Overseas members can use the online contact form.
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
B12 Deficiency Info website
B12 Awareness (US website)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"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 with lots of case studies.
There are many possible causes of b12 deficiency besides PA.
Has GP considered diet?
Coeliac disease?
H Pylori infection?
Internal parasites such as fish tapeworm and Giardia Lamblia?
Crohn's disease and other gut conditions?
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
I wrote a very detailed reply on another forum thread which may have extra info
healthunlocked.com/pasoc/po...
More B12 info in pinned posts on this forum.
I am not medically trained.
Thankyou she has had the coleiac and the h pylori test both negative
In UK, patients with suspected Coeliac are supposed to have
1) tTG IgA test which looks for antibodies to gluten
2) Total IgA test which checks who has IgA deficiency
People with IgA deficiency need alternative tests for Coeliac.
Did she have both tests?
Another reason for a negative result in TTG IgA test is that patient was not eating enough gluten before the blood was collected.
Was she asked to eat plenty of gluten in more than one meal per day for several weeks before blood taken?
If she did not have both Coeliac tests and was not asked to eat plenty of gluten before blood taken then it's possible her test results are not reliable.
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Some H Pylori tests may not be reliable.
What type of test did she have?
patient.info/digestive-heal...
If she has gut issues has she been referred to a gastro enterologist?
Has she ever eaten raw or undercooked fish eg sushi, smoked salmon etc?
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Result for eosinophils can be found on Full Blood Count results (also known as Complete blood count).
Thankyou im not sure what tests she had, im in Australia, she doesnt eat seafood or sushi so i can rule that out, i will ask doct to further investigate and find out exactly which ones she had, i know the h polari test was a stool sample
Too be honest i think she should have been referred for an endoscopy but i think cause she young they trying to avoid it.
Lactose intolerance is associated with B12 deficiency, I have both and was lactose intolerant from around 7yrs. I've always wondered if the b12 deficiency came from lack of dairy
Yes her stomach issues started around 9 years old, she often complained wasnt till she hit early teens that the b12 was picked up, i breast fead her as baby and she was ok on normal formula but did suffer with colic, she ate like a bird as a toddler which concerned me so i kept her on formula till like 3 with other foods she would eat, so i knew she was getting all vitamins.
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