All Katymac's health crap in one place

[KatyMac]

OK

I saw a Gastro guy tonight who:

Doesn't think I should be Gluten free

Isn't worried about my folic acid or B12

Wants to do a CAT scan of my tummy as although there is nothing significant my symptoms don't add up

Thinks the chemicals in food (esp Gluten free food) are intrinsically bad

My GP thinks:
# Non-coeliac gluten intolerance
# I need loads of Folic Acid & maybe B12 as it's a bit borderline & it won't hurt

My Ulcer consultant think:
# I just get ulcers
# get on with it

I'm just pissed off (especially as the Gastro guy poked my tummy and now it really hurts)

[candycoatedwaterdrops]

Is he (gastro) not suggesting a colonoscopy?

[notapizzaeater]

Has any one stuck cameras up and down ?

[RockinD]

The secret of being gluten free is not to try and duplicate a 'normal' diet. I buy organic gluten free pasta and I buy gluten free cereal. Probably less intrinsically bad chemicals in those than in bought bread or cakes.

Lots of people without a coeliac diagnosis feel better if they are gluten free and there are advantages to it anyway if you have auto immune disease.

Your folate needs to be at least mid range and your B12 above 500.

[KatyMac]

I had a colonoscopy & biopsies in 2011

I had a biopsy on my mouth ulcer last month

My diet is so controlled atm it's stupid

[WaveorCheep]

I agree with Rockin - have you looked at paleo/primal?

[KatyMac]

B12 level 151

Folate was 2.2

[grimbletart]

Katy - I wouldn't presume to guess what is wrong but repeat from other thread that your folate is really low and am with your GP over taking folic acid.

[candycoatedwaterdrops]

Is it IBS and Fibro you have been dxed with?

[candycoatedwaterdrops]

Oh and have you had your vitamin D levels checked?

[KatyMac]

Umm CFS, Fibro & IBS

Vit D - not sure I have my blood tests here - would it be called Vit D?

I agree about the Folic Acid btw grimbletart - but I don't know where to start with suppliments tbh (Holland & Barrett here I come - I guess)

[grimbletart]

Your GP can give you folic acid on prescription Katy. I imagine he/she could do the same with some of the others as well.

[MrsPinotGrigio]

Katy if your B12 is borderline, you might benefit from injections but some drs are reluctant to give them as you will be on them 3 monthly for life. My B12 was borderline & I have injections cos my Crohns is in the area B12 is absorbed so I'll never absorb enough from my diet. I would have the CT scan - that's how they diagnosed my Crohns after cameras up & down, several ultrasounds, x rays and a barium meal and enema - yes I've had the works & seen my insides on many different screens. Take care & good luck.

Oh and for the mouth ulcers a friend recommended Tincture of Propolis - you can get it online from Beelief & apparantly it's really good & all natural.

[mercibucket]

ouch
that b12 is really really low
i have read about people who buy their own b12 injections, maybe someone on here will know more

[mercibucket]

www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Symptoms.aspx

i bet a lot of your cfs and fibro symptoms are on that list

uk has very low idea of 'normal' b12. as you have symptoms, see if they go away with b12 injections. get your b12 over 500 before you decide if the injections make a difference

[mercibucket]

have you ever posted your results on the pernicious anaemia websites eg on healthunlocked? i think thats where i read about people buying b12 ampoules. they know a lot about folate and b12 levels.

[KatyMac]

I've been on healthunlocked & posted

this is interesting too

[KatyMac]

I think I have two choices

Re-talk to my GP about B12 deficiency or self medicate

[mercibucket]

your gp sounds like they will support you with folates/b12. you can always top up the nhs supplements anyway

i am v optimistic you will see a big change in how you feel once levels are high in range

[KatyMac]

Yes but he thinks I should buy supplements whcih if what I have read is correct won't do me any good

I either need injections or the spray - so i think the spray might be the way to self-medicate

[mercibucket]

oh!!
so he thinks you need them but wont prescribe? grrrrr
yes, just buy what you need. one of the pa websites will advise i am sure. apparently the folates is important to get b12 levels up?

well worth the money. annoying and wrong headed that gp wont prescribe tho

[KatyMac]

Well 'it's only a supplement, so it's an extra'

Should I wait for the CT scan or just go ahead & buy the spray & some folic acid - this is what I am thinking

On health unlocked there is a lady to ring at Guys but it seems a bit cheeky just to phone her because someone on a website said it was fine too well mannered for my own good

[mercibucket]

will the results of the ct scan change depending on b12 levels? i would guess not? dont know for sure tho.

i would just start supplementing tbh. sounds like you have felt crap for long enough

[KatyMac]

I suppose it depend on how long getting the scan takes

IBS type symptoms take a good while to clear up if they are caused by the PA & if it's bowel damage that is causing the PA then it won't be affected

I think

[KatyMac]

this is interesting

[mercibucket]

oh Katy!
sorry, i did laugh that you forgot starting the thread
but to have been suffering all these years
and your mum has pa!
i am really sad you have not been treated earlier