Gluten free holiday

[tetloww]

Just an update am now on my 2 nod holiday of doing wheat and gluten free. July was just a week so didn't bring anything with me but got by ok. This time 2 weeks and brought 12 ciabattas 2 loaves and 6 wraps. All going well and can't do enough for me. Club sandwich had with the bread. Chicken souvlaki had with the wrap and every morning ciabatta with the bacon and poached egg. 8 months on it now consultant still won't give me the diagnosis and says I need to eat wheat for at least 4 months well we all know what he can do!! Dr supporting me and keeping regular checks on my bloods as well as arguing with consultant. But saying that I'm much much better and feeling human again and getting easier by the week. Consultant is a joke and wanting to see me every 6 months just to ask me to eat wheat (pfft) and wanting bloods every 3/4 WEEKS!! Again(pfft). Your posts on here have been so helpful and hope my posts do the same for other. Happy gluten free xx

[barryd]

You need to be eating wheat for the tests to show properly. I would be inclined to listen to the consultant rather than your Dr.

[tetloww in reply to barryd]

I seriously would not get past a week without being on the floor or A/E. Even now any slip and I'm lying flat on the floor with pain. My b12 dropped so dramatically that I know have to have injections for the rest of my life and my folate levels plummet when not on folic acid. 4 months is a very long time just to prove that I am wheat intolerance and no way am I going back to lying on the floor in work in pain. Embarrassing

[SilverDreamMachine]

Hi Tetloww,

Sympathise with your predicament, even though I am asymptomatic!

Stick to your guns and be your best own advocate and give a hug to your GP. Together you'll get there!

[physiogirl]

Do what's right for you. I succumbed and went through 2 wks of gluten which was he'll. To me this meant a diagnosis and gave me more self confidence. I'm glad you've got the confidence I didn't have.

[PoDundee]

I wouldn't be able to do one day with gluten. I was glutened on Friday at a restaurant and still feel ill. Do what's best for your health. A diagnosis is not vital. A healthy body is. Take care.

[tetloww]

I have had all test for inflammatory bowel Crohn's disease ( that's is in our immediate family) and all ok. There isn't much left for them to rule out other than celiac but the consultant at the moment won't budge. He has made lots of mistakes over the past 2 years with me ( didn't do biopsies when I first had gastoscopy and colonoscopy and tried to put me in sleeping tablets when I told him the pain woke me up in the night. No sleeping tablet would have kept me asleep with the pain I had. So hence my self diagnosis and no trust in my consultant. Iron levels are being monitored but now my only worry is as seen on here calcium levels and dexa scans that I will have to fight for. Joints do hurt ( knees mostly) and I have cervical spondylitis. Will be back to gp in next few weeks after next blood test to discuss this. Thanks all for support. Tough going but really getting there x

[Thurgolady]

could you get the gliadin antibodies done on the new test for gluten ataxia (is it tga? cant remember just now) just so that its on your records that you have a gluten sensitivity - what sort doesnt really matter! But other than that keep gluten free as its obviously making you feel better and my own experience is that you improve more and more over time as your vitamins and minerals get absorbed better and so deficiencies are sorted etc.

And enjoy the holiday!

Gill

[tetloww]

Because I didn't get to see the consultant for over a year after I started with my problems due to other things going on I had already started cutting out many foods. So when they went to do the blood test for celiac I wasn't eating enough wheat. I was diagnosed IBS when I was 18. Gp now thinking this was a misdiagnosis and for 30 years I've been eating what I want and it has now caught up with me. No denying how well I feel now being totally off wheat n gluten for 8 months. I've always had tummy problems and milk issues. But always seem to have got under control until 3 years ago. Passed from pillow to post for the first year. I think the blood test u mean is an expensive one where u don't have to be eating it ? But not wildly given. I did do an internet test and it came back with wheat. Oats. Barley. Milk and some other things it said I was intolerant to. Unpaid for the rest and heard good and bad review on it but to me it makes sence xx