New to gluten free - thoughts so far

Hi

I have been GF for 4 weeks, the decision made after reading the post you know you are a celiac when...

I wasn't convinced it would work for me but hey nothing else had so nothing to lose.

My medical history is removal of gall bladder and left adrenal gland, asthma, hay fever, high blood pressure and sleep apnoea, and hard to forget 20 years of indigestion / reflux. At Christmas I was taking 80mg of omeprazole to try to quieten a mild dose of gastritis. Also severe cramp in calf muscles and chest muscles.

After a few days of GF I felt more with it in the mornings, that dragged through a hedge backwards feeling had gone, so had the sensitivity around my abdomen. After 3 days of severe pain I realised that rice too was off the menu

I started reading food labels - oh dear - 100% oats but also contains barley, rye and nuts, obviously 99.9% oats doesn't have the same ring but surely false labeling? Chardonnay - I thought was made from grapes but I was wrong - milk and eggs are also involved - I don't react to either but still put the wine back - it just didn't seem right. Those handy packs of chopped onion - off the list too as they contain gluten.

How am I feeling? Well GP has send me for blood tests, ultrasound, chest xray and urine samples so far all clear though redoing bloods as they were borderline. I am feeling a lot better - cleaned the house yesterday - husband has been doing most of it for the last 4 years so for me a big step forward.

Both my son (12 years old) and husband understand the pros and cons of starting gluten again to get a diagnosis. My son favours the get diagnosed approach as he feels I am giving up a lot when it might be something else in the food causing the problem and my husband feels anything is worthwhile that prevents pain.

Me - I don't know and can see both sides of the argument.

What have I learnt so far - manufacturers are not always honest with their claims, eating out is limited and brown sauce is full of gluten.

Will be interesting to see how I feel in another 4 weeks.

Also a big thank you to everyone who has contributed to this site - your help and words of wisdom have been invaluable.

7 Replies

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  • Good luck on your gluten-free journey.

    I loved reading about your experiences and had a little laugh at the getting out of bed feeling like you've been dragged through a hedge backwards comment - I can identify with that one all right!

    Please consider having further GP/medical support (even if you don't go after a formal diagnosis) because the gluten-free diet does have some drawbacks. It is more difficult to get all the right nutrients you need for a start. I understand that diagnosed coeliac's should be having annual blood tests to check their vitamin levels etc, although I haven't been able to test this for myself yet.

    Watch your calcium levels!! Wheatflour is fortified, gluten-free flour is not. Also ensure that you get enough B12, Vitamin D, folic acid and Iron as well.

  • When I first went gluten free I had no idea what I was doing........it does get easier, just stop all processed foods...go with meat, fish veg and fruit.....and work from that....there's still lots of lovely things you can have.......you just have to read all labels and get wise on the additives that contain hidden gluten. More natural you eat the better you feel.......get your doctor to check your blood, low calcium and D3 can leave you feeling very tired, muscle cramps and pins and needles.....B12 is another..... Thyroid as well is another that needs checking.....

    On the plus side once I went gluten free no more heartburn and acid and no more low down gripping tummy ache....hope all goes well x

    Janie

  • I agree janie, by eating a natural diet at first, if you feel better you can reintroduce other things gradually if you want to. I am trying to avoid all processed food and I find I feel much better when I do.

  • Thank you to both of you, I have started on a multivitamin and I am due to see my GP at the end of the month. I am tending to getting the test if only to get a definitive answer to the last 5 years of unwellness but I am going to discuss whether she would make the diagnosis based on exclusion and history alone. Any idea on how long it takes to get the gluten fully out of your system? As I've only been at this for four weeks for you think a few heavy days of gluten would be enough for the blood test?

  • I think you are supposed to eat gluten for 6 weeks for the test to be accurate. I ate a tonne of pasta the night before mine and felt really ill but the result was negative :/

  • And did the negative result make it tougher to stick to a GF diet - I'm wary of a negative result shaking my resolve. This is the longest I've stuck rigidly to any form of diet - even when throwing up continually when pregnant I still forced food down - for me its been a form of addiction. Now though the GF diet seems to have taken all the cravings away.

  • Like you cott97 I have never been officially diagnosed.

    10 years ago I was diagnosed with IBS. I didn't believe it at the time and still don't. 10 years of really severe constipation/diarrhoea. I'd even tried gluten free before, but didn't make a very good job of it - I avoided the obvious things but didn't really read all the labels. I saw some improvement, but the small amounts of gluten I was unwittingly eating meant I still suffered. I'd also tried lactose free with similar minor improvements. I really did not know what the problem was. My GP refused allergy tests 'because I had IBS'.

    In 2008 I met family that I had never known (I was adopted). A half brother's daughter has had Coelics since birth. A full sister has undiagnosed gluten issues - then again she has lots of issues, so I didn't take it too seriously.

    About 3 years ago my half brother was diagnosed with Coeliacs. He's 8 years older than me. That was the push that made me give up gluten properly. Like you I wasn't sure it would work. It wasn't easy. In fact I felt worse for 3 months. I felt sick, had headaches and had the most peculiar feeling in my bowel - a bit like I was being hoovered out!

    I have stuck with it though and made plenty of mistakes. I've found that I now react severely to any gluten - much more severely than before. I also react to lactose. With time however, these reactions are getting less severe. My 'output' used to range from black to yellow over the week - now it is mostly 'normal', whereas before it never was.

    For months I mostly ate just meat and mash, mainly because I didn't react to it and quite frankly I had been exhausted for years and couldn't face cooking. More recently I have been making more effort cooking from scratch. To help me, I bought a stand mixer, an electric multifunction rice cooker/steamer/slow cooker and a soup/sauce maker. Of course you can manage without them but I don't feel well enough to spend half my life in the kitchen. At the moment I am loving the soup maker - just throw in the vegetables and 30 mins later a perfect smooth soup! It avoids having to buy the supermarket stuff when you are never entirely sure what's in it.

    My GP is not being particularly supportive. When I told her that I was on a gluten free diet, the results and the reasons I had done it, all she could say was 'you know it's for life' as if I were doing for fashion reasons!

    Basically, listen to your body. If it makes you feel better then it is right for you, despite what the experts may say!

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