Gluten! I never thought this could be it!

I am 43 and just discovered that I have gluten intolerance! Years and years of suffering, and being misdiagnosed with IBS. Totally shocked to know that all the symptoms I was having, which I thought its maybe me, all were related to Gluten! Anxiety, depression, stomach ache, stomach bloating, feeling tired and foggy all the time. Christ why doctors can't see this? Its a crime! Really sad that I had to suffer for long time, before I read on the internet and went myself to a private clinic and had food intolerance test!

11 Replies

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  • Hi James12345, been there, know exactly what you're feeling! It passes. Then it may be replaced with a certain anger/frustration at the food industry. Why are so many of our foods processed, and why are they processed with ridiculous additives (I can't count the number of times my non-coeliac friends have been shocked when I've told them what has 'added gluten' in it...). Most of us are totally unaware of what we put into our mouths, believing that if the food is sold in a supermarket it must be safe... Try to focus on the fact that you have now discovered what has been making you unwell and that you can finally start the journey toward getting better, healthier and leading a happier life. Good luck with it all! And this is a great place to ask questions, and to share experiences, I've been helped so much here. :)

  • Thank you very much Lexy, what made me really sad and angry is that I described everything to my GP and he didn't have a clue. He though I was imagining it, and been on IBS tablets for long time with no luck! Thanks again!

  • If it's any comfort, I was 44 when I realised. Only found out because my son went back on gluten for coeliac tests and my IBS worsened hugely. Up till then we'd all been semi gluten free

    I agree about the Drs bit. Some are supportive, others are determined to not believe NCGI exists. Do what is right for you.

  • Same here diagnosed with IBS aged 18. I'm now 48 and just got myself sorted been wheat and gluten free now for 8 months. Major problems started 3 years ago and passed from pillow to post and consultant won't diagnose celiac unless I eat wheat and gluten for 4 months. Not going to do this as I would be on the floor within the week. Dr supporting within reason. Milk intolerance all my life but only come to light when cutting wheat and gluten out too so care on the dairy now as well. Good luck go with how you feel and am sure u will be fine

  • Hi ,

    It was as though I was reading something I had written myself! I have suffered for years with bloating etc. docs said IBS. I have Ben diagnosed with Hashimotos

    3 years ago but had it for at least 10 years before that. Doc wouldn't prescribe & it took going to see a private endo to get treatment! My gut probs had got worse and worse and I began to itch like crazy with spots all over my back. I had celiac test negative, so I decided to give up gluten & lactose anyway. I have been gf for 8 months & feel much much better I would never go back! Early on I went back to docs & told him he said we will do another test book one in. I asked how long I should eat wheat & he said a week! Obviously this was negative. The endo said you can have full blown celiac that doesn't show with blood test anyway, I cannot believe how much better I feel. No puffy face or achy body, more energy & my body feels calm. Good luck to you & hope that you keep improving all the time.

  • Hi,

    I know exactly how you felt, it is really frustrating, specially to live everyday with a stomach ache, feeling foggy, the anxiety etc... I found that when I was abroad and I got an advice to visit a food allergy clinic, and the result came with few positives Gluten, Cow milk, and dairy products, peanuts, Banana. I recommend you if you still having any kind of stomach discomfort to take pills for candida. I was told by the doctor that gluten intolerance encourage sometimes Candida infestation. There are lots of natural remedies for that, like Dida and renew life candigone.

    I wish you luck!

  • Hi James, many of us feel the same and this is sadly because the symptoms of an undiagnosed coeliac are very like stress symptoms, I was even given vallium at one stage! fortunately I didn't like them.

    The main thing is you have been diagnosed and now you're "in the system" so you will be referred for dexa bone scans and regular blood tests.

    Being diagnosed is a shock to us and you want to take it one day/meal at a time and soon it will be second nature, you will also go through various emotions and all of us have one thing in common and that is we fear being made ill by food prepared by others, this is not neurosis it is self preservation.

    I wrote my story, please see:

    withoutgluten.co.uk/case-st...

    And good luck to you and you're bang in the right place for a moan or for info.

    Jerry

    PS if anyone would like their story on the web site then please send me a message.

  • I'm the same I'm 49 years old and 10 years ago I had bowel cancer. So I assumed that the problems I had were from this but it's only in the last few months that I was told the same thing as you.

  • I found out that there are no such thing IBS, IBS is a reaction of something related to food allergy or intolerance! I recommend all to do full food intolerance test, you will be shocked but it makes sense when you find out that all the things you didn't like when you were young are the ones you have intolerance for.

  • This story rings a bell, I had problem ( mild at first) since around the age of 16. In out out to see docs over the years but no help. Last couple of years it got worse so more tablets and some tests but no show for coeliac so went down the line that it may be intolerance within a few days felt better than for years. Been gf free for about 18 months now and much better for it. One set back for a few months of late seemed to be getting some of the old problems back, found out the gf bread did not agree with me. Don't know if it was the yeast in it or something else but ok now this really is a case of trial and error so good luck and welcome to your new world. Many very helpfull people on here to point you in the right way

    Mike

  • Hi we have just gone through the same thing with my daughter, diagnosed with IBS, ME as teenager, then I discovered i have CD, she has been for CD blood and biopsy tests and despite having the same symptoms as me they have all come back negative, also seen neurologist as our symptoms are neurological and they thought she may have MS. Our GP is fairly good but the gastro wasn't, insisted it was IBS. We complained to the hospital in order to help others who may not get good advice from the hospital department. I took a lot of information to the meeting about NCGS and the gastro did say she would look into this more and bring it to the attention of her colleagues. Her thoughts ( excuses) were that restricting my daughters diet without proof of CD was not a good idea and that it could cause her to be deficient in vitamins and minerals. Daughter went GF at Christmas and is so much better, before this she was struggling to cope.

    Glad that you have found what is wrong with you and hopefully it will make a big difference in your life.

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