Can anyone advise me who I should be referred to based on the following. Hematologist or gastroenterolist?
My levels were low but I have been supplementing for months and they are now over 1000 but as soon as I stop taking the B12 I feel bad again. I have parietal cell anti bodies and I get very bloated after eating lactose and wheat so I thought these problems may need a gastroenterolist
I also have a lot of numbness in my arms and legs which I read needed a hematologist .
The NICE guidelines - cks.nice.org.uk/anaemia-b12... - say...
"Seek urgent advice from a haematologist if the person has neurological symptoms"
And
"Refer to a gastroenterologist if:
The person has pernicious anaemia and gastrointestinal symptoms"
So you really need both.
That's what I was thinking, but from what my doctor says, it seems I can only be referred to one at a time.
Well, that sounds like nonsense. However....
If you've got anti-gastric parietal cell antibodies that could explain your GI symptoms.
GPCs do two things - they produce Intrinsic Factor, necessary for proper absorbtion of B12 - and they produce hydrochloric acid, essential for proper digestion of foods, especially protein. Gastric atrophy (caused by your immune system killing off the GPCs) can cause low levels of HCl (hypochlorhydria) which can cause IBS-like symptoms.
At first I thought I was lactose intolerant, but it soon became obvious that I wasn't (I knew I didn't have coeliac's disease from a previous gastroscopy). My gastroenterologist was certain it was due to Neuroendocrine Tumours (NETs) - but all the tests for NETs, except for biopsies, were negative.
Finally I decided to try and fix the hypochlorhydria. First I drank about 50ml of lime juice with each meal - which worked somewhat. Then I switched to Betaine HCl (with pepsin) and my GI symptoms have disappeared.
So, if you have to choose one I'd pick the haematologist. The neurological damage can be fixed if caught early enough, so that's what I'd attack first.
But I'd also try Betaine HCL (I buy Swanson's from Amazon) and nag the doctor about getting a gastroscopy to check for stomach cancer (a possible product of gastric atrophy).
Here's a really nice presentation on gastric atrophy - itr8.com/hosted/cnets/ottaw...
Thanks for this very informative post, I have wondered about low acid being a problem before.
My tests don't show a problem with Intrinsic Factor, and I don't know how reliable it is but I did a test with some Ph paper and that said my acid levels were fine.
Maybe I should try the Betaine HCL to see if it works.
Both the GPC and IF antibody tests can give false negatives (and false positive). It is possible that your anti-GPC test gave a false positive. However, combined with the low B12 it's much more likely that it was a true positive and that you do have PA.
That's assuming no other possible causes for the low B12 - things like veganism, taking Proton Pump Inhibitors or gastric surgery.
I'm not sure how one would test their stomach pH with an indicator paper (throw up on an empty stomach and check the emesis?) What pH did it show?
One home test is to dissolve half a teaspoon of sodium bicarbonate (baking soda) in a glass of water and drink it first thing in the morning. If there is acid in the stomach then this will react with the carbonate to produce carbon dioxide - which you will release as burps.
If you don't have several burps (one or two may be due to swallowed air while drinking) in a few minutes then it's likely to be because you have little/no acid in the stomach.
I forgot to say, the ph strips said I was a 9 earlier today and now it's a 6.
9 is unbelievably high unless you've just had a nice refreshing glass of ammonia. 6 is about what one would expect with achlorhydria. Normal people should be between 4 and 1.
I forgot to mention -
Don't worry a lot about possible stomach cancer. The carcinoid tumors they talk about are the old name for Neuroendocrine Tumours (NETs).
When the doc first suggested I may have NETs I did a lot of research and found that the 5-year survival rate for people with NETs was actually higher than for those without them. I guess that they have more rigorous health checks than is the norm.
My doc described these tumors as 'indolent'. Most of the time they just sit there doing nothing and just need the odd check to make sure they're still behaving.
But it's still worth getting a gastroscopy so they can check for signs of NETs, gastric atrophy and coeliac's disease.
"My tests don't show a problem with Intrinsic Factor"
It is still possible to have PA (Pernicious Anaemia) even if IFA (Intrinsic factor antibody) tests are negative. I think this is called Antibody Negative PA and is mentioned in the "BCSH Cobalamin and Folate Guidelines" IFA tests are not always reliable and I have read can give both false positive and false negative results.
Just to say that I went to a gastroenterologist with similar tummy symptoms to you. I was prescribed something useless, which made not a scrap of difference. I kept asking for a stomach acid test and he replied that there was no point, because as a P.A. patient I should assume that I have either low or no stomach acid(hence those awful tummy symptoms) I asked about treatment, and was told that there is none . I have tackled it myself, and find that taking a water-based probiotic has helped enormously. (called Symprove) Now fine on a half dose. I avoid white flour also.
My visit to an haemotologist was also fruitless and depressing. My feet were completely numb A wasted £160 My G.P.wouldn't refer me as my 150 B12 serum was considered O.K. So Many of us feel that we are on our own. Well you are not if you are in the P.A.S. !
Really upset and frustrated following a hematologist appointment--any ideas? 
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