New doctor, old ignorance

[Wagonwheel]

Told new GP I have a clinical diagnosis of PA but would like to get to the bottom of gastric issues, diarrhoea for 15 years or more, as I think they may be related.

He stated its very unlikely I have PA and that a level of 150 is not that low, the lower limit being 198 and that he would have just treated with tablets. I said I was very ill and it took a long time to recover, I'm still recovering, he said ah well if you have symptoms then thats different.

He asked why I inject so frequently, somewhat derisive, I said because it enables me to live my life relatively normally and if I don't symptoms come back and I don't want to be bed ridden again. He stated my B12 levels are now really high to which I said the serum levels are but my active levels of B12 have never been tested.

He quickly gave me two pots for stool samples and told me to arrange a blood test whilst saying again its very unlikely you have PA but diarrhoea for 15 years needs investigating.

I take one of each of the following daily and wondering if I should refrain until blood test on Monday? Multivitamin/mineral, Vit D with calcium and magnesium and glucosamine1, had my weekly B12 jab Friday (yesterday).

I really don't want to see him again, but even getting an appointment to see a gp at my practice is a herculean effort these days.

[fbirder]

Two possible causes of your diarrhoea -

A lack of stomach acid caused by autoimmune gastritis (the root cause of PA). This can lead to bacterial overgrowth which can cause diarrhoea - emedicine.medscape.com/arti...

Magnesium supplements are great laxatives and can cause diarrhoea (certainly did with me).

[Wagonwheel in reply to fbirder]

Thanks Fbirder, I only just started taking vit d/magnesium/calcium pills a few days ago, prior to that I just took vit D..

Thinking autoimmune gastritis will this show up in stool samples?

[Gambit62 Administrator in reply to Wagonwheel]

gastritis won't but it can give clues as to what is going on with bacteria etc in the gut.

Wonder if your GP is confusing macrocytic anaemia and PA. Doesn't exactly fill you with a great deal of confidence.

[Wagonwheel in reply to Gambit62]

Thanks Gambit62, I certainly didn’t feel so, no, just have to see what happens.

[Sleepybunny]

Hi,

"He asked why I inject so frequently, somewhat derisive,"

If my GP was like that I'd ask GP how far I should allow myself to deteriorate before self injecting

1) to the point my eyelids start flickering

2) to the point tinnitus starts again

3) to the point I start getting muscle twitches

4) to the point I start getting periodic limb movements

5) to the point I get pins and needle sin my spine

6) to the point my mental health takes a nose dive

etc

In my case symptoms return within a few days of an injection.

"but diarrhoea for 15 years needs investigating"

Were you ever checked for Coeliac disease?

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

I'm not medically trained.

[Wagonwheel in reply to Sleepybunny]

Thank you Sleepybunny. I was caught off guard, as I often am in these situations.

Good idea to list returning symptoms, will be prepared next time.

I’m trying weekly jab regime but have noticed loss of strength in legs when running, sore mouth and irritability.

Not checked for coeliac will await results and ask for it along with gastritis.

[HowNowWhatNow in reply to Wagonwheel]

Yes - I was going to ask about coeliac. To be completist about it, ask to be checked for an IG(A) deficiency at the same time too. If you have one, a coeliac test will

show as negative even if you are coeliac.

This happened to my child. But the NHS doesn’t appear to allow for this.

[Wagonwheel in reply to HowNowWhatNow]

Thank you Geogeor!

[Sleepybunny in reply to HowNowWhatNow]

Hi Geogeor,

I hope you and your child have now had the guidance you need about Coeliac.

NHS should allow for possibility of people being IgA deficient.

Total IgA test, which checks for IgA deficiency, is recommended in NICE guidelines on Coeliac disease (see NICE link in my post above).

People with suspected Coeliac should have tTG IgA which checks for an antibody to gluten and the Total IgA test. If Coeliac type symptoms continue despite negative results they should be referred to a gastro enterologist.

Patients who are IgA deficient should have alternative tests for Coeliac. See NICE and Coeliac UK links in my other post.

I think the problem is that some GPs are only referring to local guidelines on diagnosis rather than also referring to national guidelines such as NICE.

[HowNowWhatNow in reply to Sleepybunny]

Thanks Sleepybunny! You know your stuff - are you a doctor?

My child had two coeliac tests - one commissioned by GP, one by a children’s hospital (by a nutritionist) and neither came with an IG(A) test.

[HowNowWhatNow in reply to HowNowWhatNow]

And the possibility of a gastroenterologist was never raised for us.

Even after 3 years of diarrhea, tummy pains etc.

I eventually went to one privately, but even this private referral was disputed by my GP, who didn’t want to make it.

[Sleepybunny in reply to HowNowWhatNow]

I am so sorry to read that your child has had such a hard time.

In past I requested referrals in brief, polite letters to GP along with evidence that supported the request eg symptoms, test results, family history, personal medical history, extracts from UK medical articles/documents etc.

In UK, letters to GP are supposed to be filed with medical records so hopefully are less likely to be ignored than requests made verbally.

GPs don't always respond positively to parents who express concerns about their children.

See blog post below about parents of children with PA.

martynhooper.com/2017/07/21...

[HowNowWhatNow in reply to Sleepybunny]

Oh thank you. I did all of that.

And when I offered to my GP that I show him my typed-up notes of my child’s symptoms for the last 6 months - as a sample of his most recent problems (since said kid had seen a paediatrician), that the referral would be based upon, GP said, “these notes are subjective views, they are not objective facts” and refused to read them.

After this experience, I refused to ever see that particular GP again. Inner-city GP surgeries are not for the faint or even tough-hearted, I have discovered!

[HowNowWhatNow in reply to HowNowWhatNow]

I now see the part where you say you aren’t medically trained!

[Sleepybunny in reply to HowNowWhatNow]

No, I'm not a doctor, just someone who was very ill for many years and had to turn medical detective to find out what was wrong with me.

I ended up reading so many articles/documents that some of the info stuck in my mind. Also wanted to help others avoid the very difficult experiences I had and to have the info to get the treatment they needed.

Sorry to read that neither GP or hospital commissioned Total IgA test, just don't understand that.; again probably restricted by local guidelines or funding issues.

Coeliac UK website is very helpful and their advice line is friendly.

coeliac.org.uk/home/

[pitney]

I was tested for Coeliac and told that everything was fine but decided to go Glutton Free anyway and see what happened, well surprise surprise the unexplained diarrhoea I had had for years suddenly improved drastically, might be worth a try if your GP does not come up with anything else

[Wagonwheel in reply to pitney]

Thank you that’s interesting, will review once I’ve had results

[Sleepybunny in reply to pitney]

Hi,

Same for me; IBS disappeared.

tTG Coeliac test was negative but not tested for Total IgA at the time so wonder if I am Coeliac. I used to get allergic lumps near my spine when eating lots of gluten.

A private Total IgA test a few years later did not show IgA deficiency.

More than one person close to me has had togo gluten free; also lacto free.

Wagonwheel just wondered if you had looked into dairy/lacto intolerance?

[Wagonwheel in reply to Sleepybunny]

I did when the diarrhoea started over 15 years ago, swapped milk/diary for soy but unfortunately had a much worse, explosive reaction to soya milk and products so deduced I wasn’t lactose intolerant.

[pitney in reply to Sleepybunny]

Thanks for that info Sleepybunny useful to know

[TFH1]

Just following this thread - I have PA, Coeliacs and Type 1 Diabetes. I also have had chronic diarrhoea for most of my life. Going gluten free helped but didn't solve the problem as effectively as I might have hoped and with my recent diagnosis of PA I have wondered if it is to do with a lack of stomach acid. Recently I have begun to make my own (non dairy) milk kefir at home and have found enormous benefit from this to my digestion which improved overnight. I'm not diarrhoea free 100% of the time, but vastly improved and have also noticed that anxiety has greatly diminished - bringing to life for me the link between the microbiome and mental health. Shop bought kefir does not have the same effect (something to do with it being pastuerised and then bacteria added afterwards I believe) but grains are easy to come by. For those on Facebook there is a group called UK Fermenting Friends and here people share their spare grains for the price of an SAE as well as offer advice on all the different aspects of home fermenting. Happy to chat about this more if anyone is interested.

[Wagonwheel in reply to TFH1]

Thats super interesting thank you TFH1!