Got a letter from my gastro today to say that my biopsy's have come back negative - which is great but not so great is that the coeliac biopsy also came back negative. I was not expecting this to come back positive as. like the adrenal tests the NHS do, it is a black or white test so will not pick up any signs of gluten intollerence, you have to have full blown coeliac disease or it will be negative. Yes I have gut inflamation (a classic sign of gluten intollerance) and other gluten related symptoms but as far as the NHS goes I do not have a problem - nothing new there then.
Just got to be grateful that all other biopsy's where negative as my day died of bowl cancer at quite an early age.
Will be disappearing off the site early next week for a while as I am due my long awaited cyst/ovary removal operation and after reading a few posts on here regarding recovery problems I must say I am not looking forward to it at all.
Moggie x
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Moggie
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I do not know too much about your specific problems Moggie but am very pleased for you that you received good news from your testing.
I'm sending you all best wishes for your forthcoming operation and recovery.We will be thinking of you and shall look forward to seeing you back here again XX
My main problem was low vitamins (B12, VitD, Iron & Ferritn) so my endo sent me to the gastro who then gave me the ultimate camera experience (one up and one down).
Her letter did puzzle me with one thing - apparently I have hypoferritinaemia, a very posh word for low ferritin BUT when I went to her I had stopped my iron supplements two days before because of an awful metallic taste in my mouth. She said I had done the right thing and that it was the supplements that were causing it and that my levels where now fine at 67. But now she has advised me to DOUBLE my supplements (which I have gone back on as I want to get my ferritin level a little higher and will stop when the metallic taste re-appears). Any suggestions - do I ignore her instruction or try doubling my dose?
Well yay about the results being negative but *sigh* about the usual NHS approach of negative= no problem. Sorry you're struggling Moggie. You're gone gluten free if I remember correctly. How long ago did you start?
I shall be thinking of you next week and sending "heal fast" vibes. Hope it all goes well and especially hope it's not as bad you are fearing.
Haven't gone gluten free yet but getting there, have decided to easy myself in gentle and I dont think my girls will appreciate not being able to cook me this or that because of the gluten eliment. So my freezer is full of gluten free home made meals, plus some ordinary ones, which should stop them moaning to much as I'll be relying on them to feed me.
Thanks for your kind words and your "fast healing" vibes will be very welcome.
Thanks Hampster - what is nitrous oxide? and also have you ever heard of hypoferritinaemia (which is low ferritin without anemia) as someone yesterday suggested it could possible have something to do with pernicious anemia.
But my anaesthetist is a real lovely guy Rod and if it wasn't for him refusing to operate on me due to my "unstable thyroid condition" I would not have had almost a year of tests done, seen an endo and a gastro or feel as well as I do today. He certainly cause a domino effect in my case and I am grateful for it.
He even told me he would not be giving my pain medication to me in the usual way as he did not think my adrenal could handle it - how many doctors do we know that admit the connection between adrenal and thyroid problems - but would be giving it through an epidural and this was before my low cortisol result.
Will talk to him about it but will also be thanking him for what he has done for me.
I saw him a couple of weeks after my brothers sudden death and this was another reason he cancelled the op as he said I needed time to recover from the shock - a real nice guy and certainly seems to know his job.
I remember now! Yes - I was most impressed by your reports of him. Feel sure he would understand the issues far better than almost any other medic mentioned here.
Because it will inactivate all your B12. Which is OK if your digestive system is healthy and you can replenish your B12 stores quickly. If you have trouble metabolising B12 then not a good idea.
Don't know about the ferritin thing, although it is really common around PA forums for people to have low everything (B12, folate and iron) without having any signs of actual anaemia.
Nitrous oxide is a gas commonly used in anaesthetic. Entonox (gas and air/ laughing gas) which we all have during labour is 50% nitrous oxide 50% oxygen. In my opinion it's one of the reasons why so many of us have our deficiency revealed after childbirth, because we've just inactivated what little B12 we have in our bodies. A healthy person can replenish this, someone with an undiagnosed deficiency cannot. Midwives are also at risk incidentally, and anyone else routinely hanging around labour wards. They have scavenging systems in place to minimise this risk but still, I think it's worth bearing in mind if that is your profession and you feel unwell. Also we are now getting cases of people with B12 deficiency induced by recreational use of laughing gas - I think it's called whippets?
I digress! Here is the thread on the PA forum re Nitrous Oxide:
Thanks Hampster - they were around the 250 mark and after supplementing went up to the 500's and are now around 600 although I haven't supplemented for ages but they have still increased slightly.
Think I may need to check these levels soon because I went on the gas and air when I was having my colonoscopy (is that how you spell it).
In what way? My appetite totally went for a week or so and I have had the runs (sorry couldn't think of another way to put that) on and off since. It feels like my digestive system just didn't like it and has taken time to recover (I also had a camera down the throat).
Prob fine, but maybe a good time to have the Active B12 test if you feel worse after this coming op. I wouldn't bother with Serum B12.
Personally, I would never have NO. After my first child I cried for 4 days solid, they were so alarmed they wouldn't let me leave the hospital. I had severe baby blues, cried at the slightest thing for weeks afterwards. Had NO again for my second child, but not for very long as he flew out quickly. It was 2 years after that that I was first diagnosed.
hi there moggie , so glad that at least most of the results were negative [ positive to you ] ..... just remember that there are a lot of us on this site that are sending out good-super-positive vibes and hugs for you===== YOU WILL NEVER BE ALONE ===== just keep us updated with your full recovery we will be thinking of you [ just think of all them cyber hugs ] ......LoL alan xxxx
Good Luck Moggie. I await your next news with interest. Request hads been sent for camera "up and down" for me but not heard anything yet. Caring messages received from Paul Robinson.
Can I just say thank you to everyone who has wished me well for my op tomorrow, I really do appreciate all your kind thoughts and I know they will help me through this difficult time.
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Gluten, CFS, Thyroid Dilemna
I volunteered to come off Liothyronine - the price is too high. Pharma companies are highway robbers.
ANTIBODIES RESULT.
Should i have gastroscopy and colonoscopy? What value will they add, given poor standard of NHS 'treatment'?
GP is doing Coeliac Test - is it true that you need to be eating gluten for at least 6 weeks before testing?
