Gluten free journey

For those who have not read my previous posts here's a synopsis of my story and where I'm at.

Back in sept last year I started to get pins and needles in my feet everyday (still happening), oct I lost sensation in top of my right thigh for a day and when it came back it was tingling/nipping type nerve pain which I still have but some days I hardly notice it/others it's very sore. Went to physio - no help. Around Christmas I thought I'd trapped a nerve in my upper back as started getting tingling in the back of my head into left side of my face and lost muscle control down my right arm (it comes and goes - not there all the time - unpredictable). This is the point I went back to gp and asked them to check if I were anaemic. Bloods came back normal mid jan. But I was still getting worst - now my head felt like something was crawling inside - worst than the tingling- was put on a beta blocker and bloods checked again - this time including b12. End of jan found out I had b12 deficiency (183). I didn't appreciate the possible significance of a b12 deficiency and was actually told in my late teens/mb early 20s I had a slight deficiency but wasn't offered any treatment- so this mb a over a decade to 15years I've had this! Whilst this is all going on my stomach is in agony and I'm struggling to eat. In the month of feb I lose 2stone in weight (go from 10and a half to 8and a half stone). Im on omeperazole and its put up from 40mg to 60mg. Then I'm taken off it to prepare for scope biopsies and put on ranitidine instead (this is the point I lose most weight) After 10days and a hospital visit I'm put back on omeperazole 80mg!! Slowly begin to eat (not much) but every time I eat feel worst (sickness/more dizzy/balance issues which I meant to say I also have). Get scope done- gastritis in stomach, esophagus clear, negative for h pilori and inconclusive for celiac (which is not surprising as not had gluten on at least one meal for last 6weeks). ct scan of head is clear and Mri results due next week.

So that's most of the medical history.

Today I saw my gp (first time I've managed in 5weeks to get an appointment with the gp I initially saw about this and got the ball rolling). Went over where I'm at and said I'd been contemplating topping up b12 myself. Now I don't trust many docs but I trust her. The neurologist advice was not to top up anymore b12 just now. And I've bought supplements (the melt under tongue ones) but I've held off taken them. The reason why is if it is a malabsorption issue it could easily be other vitamins/minerals that I'm missing and I'm now thinking that I also need to tackle why I'm not absorbing them.

My gp took blood today and is testing my thyroid, my b12 level and the intrinsic level, vitamin D, calcium and she's repeating the celiac blood test and full blood count. She's going to contact a gastric doc she knows to get more info and go over my case (with my permission) She said she's been reading up about it herself. I feel that's a break through.

4days ago I cut gluten out. Touch wood, today is the best I've felt in months (not normal but definitely improved). I've ate 4slices of bacon and two decent cut slices of cheddar cheese this morning without feeling/being sick and my stomach isn't too sore. I've also managed to cut down to 40mg of omeperazole- I'm aiming for 20mg by the end of this week - and hopefully in a few weeks off it altogether. After reading a post this morning it could be just as likely that my stomach acid is low rather than high - so definitely want to get off the acid suppressor. The reason I cut gluten out was not just because of the possibility of celiac (although this highlighted it to me) but I didn't realise how bad gluten is for you.

I don't know yet if today is a one off I will update and will also let you know about my other vitamin deficiencies if any. I just wanted to post because I almost got myself hung up on getting more b12 injections out with the 6loading then every 3 months (which I appreciate I might yet need). But it was stopping me from seeing the bigger picture - that and the fatigue and brain fog! Today I feel I've had the chance to have a bit of clarity. I've order a book, I think it's called against all grain (will check if anyone's interested) and it has gluten free recipes (I think it's free of other things as well as it follows a Palio diet) but the girl who wrote it suffered for years with several auto immune disorders and has turned her life around. Book not arrived yet but will let you know how I get on with it.

Just feel it's time for me to try and take back some control. No doubt there will be lows along the way but need to do something to help myself. I've not written of the b12 supplements but gonn give the gluten free a chance first and wait for test results.

Wondering if anyone else is already on or tried the path I'm trying?

7 Replies

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  • Hi,

    I've no problem with gluten, but just wanted to wish you good luck and glad you have what seems a good GP, willing to take your symptoms seriously, hope all goes well,

    Kind regards,

    Marre.

    PS worth having serum folate and ferritin (+iron storage) tested if you are having bloods taken anyway.

  • I was B12 deficient and coeliac blood test negative but decided to rule out gluten and noticed improvement but can't be sure if B12 injection or gluten free related or both. Trying to stick to paleo diet.

  • Am on Paleo and Gluten Free as much as I can as it definitely makes a difference, also quite dairy intolerant - if I do have something with gluten in I'm up all night with joint pains, mostly around rib cage and lower back, I have two B12 injections per week and it's definitely helped settle my whole gastric system down :-)

  • What a journey you've been on, and I can't believe they a) left you with a B12 deficiency years ago then gave you Omeprazole when they know you have a B12 deficiency now. I will never understand the medical mindset! But I thought you might want to check out the videos of Alessio Fasano. You can find them on Youtube. He is the founding father, as it were, of coeliac disease and he knows all there is to know at the cutting edge of research on gluten. He also has a book, which I have on order, about coeliac and gluten disorders and you'll find it far better than any of the populist titles. His is 'proper science' and not food fad fashion! Incidentally, he is very funny and entertaining and not at all boring, so the videos are well worth a watch, and it helps to counteract all the nonsense you read and see about gluten.

    I've been tested for coeliac disease and found wanting, i.e. negative, but I haven't yet picked up the courage to try gluten free and see if it helps. Good luck with your journey.

  • Day 6 of gluten free. Energy levels definitely up. Still experiencing the weird nerve crawling down the left side of my body - esp my head, neck and arm. Also meant to mention that my left pupil is smaller than my right (esp noticeable first thing in the morning) anyone else experienced this? I'm on beta blockers and I wondered if it was due to them? Should get Mri (head) results, b12 level and intrinsic level, calcium, vitamin D and full blood count back a week today. So I'm going to continue gluten free and if no further forward by next wed will start supplementing b12 myself. Down to 20mg of omeperazole- hope to be off it by next week.

    Also for the last few weeks the skin on my neck shoulder and scalp it red, under skin like spots - only where my hair touches. Is it possible to develop an allergy to your own hair?!

  • Day 20 of the gluten free journey. Had a little set back just over a week ago (not related) slipped and fell - head took the impact and had a trip to a and e bruised, cut face, black eye and concussion! Back on track now. Results showed I also lack vitamin D - surprise surprise! Now have supplements for this too. Been referred back to gastro as inconclusive for Coeliac but looking more and more likely. I'm now completely off omeperazole, touch wood no migraine despite having a period this week (sorry for tmi but usually worst at this time). Very little tingling - still tiring easily but can actually do stuff now! Instead of struggling to lift my head of the pillow! Still wake up with pins and needles in feet when I first step on them out of bed and one pupil still bigger than other first thing (then equal out). But all in all getting there. B12 level after loading dose (taken 6 weeks after last dose) went from 183 to 1800. Get my next dose in May so I'm thinking it's probably enough. I do crave and miss 'real' bread and lots of other things you don't realise gluten is in but the benefits are far out weighing this! I highly recommend anyone that has b12 and vitamin D deficiency and any kind of pain/upset stomach, or reflux like symptoms that they give gluten free a try. Still got a long way to go as might be asked to go back on gluten for 6weeks to retest to get a conclusive diagnosis but will wait to see what gastro says first. X

  • Also meant to add that I have had no beta blockers either for 3 weeks now

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