Could this be a reaction to gluten?

I tested negative for coeliac in 2009, but was still advised by an endocrinologist to be gluten free. I never felt any different doing this, but as he was Head of Department, no-one on his staff would contradict him, spo I’m sort of stuck with it.

As I am not apparently coeliac, I don’t stick to it absolutely, but eat home made bread and cake from time to time, usually without any reaction. Bought bread and cakes give me eczema within about half an hour of eating, so I dumped them years ago.

Recently, I had a longer gap than usual between eating bread and then had a shopping crisis, which resulted in me taking my husband’s home made bread to work three days running, for my lunch. There followed three days of stomach cramps and constipation, followed by eight hours of severe diarrhea.

I then went another eight days without eating bread, but had a sandwich last night. Within an hour I had stomach cramps and constipation again (wanted to go but couldn’t). It’s the same today, but I fear that I know how it will end up.

Is it possible that this could be a reaction to gluten?

10 Replies

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  • PS my stomach is swollen and hard like a football.

  • Have woken up this morning with swollen lips.

  • Sounds familiar - constipation followed by diarrhea - bloated - eczema. All my endless tests came back as negative, I was ill for weeks and then got brain fog a visit to A&E etc, etc Tests tests examinations scans all negative. Then I stopped eating bread within a few days brain fog went. About 1 week toilet habits got better - I then went totally GF and within 2 weeks I improved again more energy no sleeping in the day etc - i am no longer interested in the actual "you have it or not" diagnosis I listen to what my body is telling me. 99% of doctors are ignorant so your wasting your time seeing them. My advice try GF for 2 weeks. Beware hidden G in normal foods though - Good luck

  • I've chose not to be tested. Although my doctor has put on record my gluten intolerance but I do not wish for testing as do not want suffer the symptoms for the period prior. But I do still have to have the yearly blood test. I suffered for all my life and was thought just to be a poorly child. I,ve bee GF since last October... All these symptoms that you have described have more or less disappeared ..unless I accidentally get glutoned. Which can happen when eating out. I now have a soft tummy(not a hard football bloated one) and I don't need to be near a toilet all the time. I'm well and have a new lease of life. I suffered many symptoms in my life including Infertility, and have had to have a Bowel resection also I have suffered a stroke. So point is regardless of diagnose I would avoid gluten if it makes you ill. Life me me is great without it.

  • Sorry ansteynomad meant to have said good luck and hope you get yourself better.

  • Hi Ansteynomad,

    The answer is - yes it's possible. The medical community are still waking up to the fact that you don't have to be a Coeliac to have a sensitivity to gluten. It seems that your endocrinologist may have already recognised this.

    For example, gluten can cause problems with your thyroid (autoimmune thyroid disease), your skin (dermatitis herpetiformis) and your brain (gluten ataxia) etc.

    As you're not strictly gluten-free at the moment I would suggest going back to your GP for further tests because you're definitely reacting to something. Do be aware that to be retested for Coeliac disease, it would require you to be eating gluten foods every day for at least six weeks (ie. those containing wheat, barley and rye). Those 6 weeks might settle the debate for you one way or the other!

    I suspect that I was a Coeliac for many years before I was diagnosed - even though I had none of the classic gut symptoms for at least the first 15 years of that time. When I did have issues, I put it down to a lactose intolerance. Sometimes the sensitivity shows up in different ways, such as fatigue and/or anaemia, for example. It was mentioning my fatigue to my GP that led to a diagnosis.

    Good luck!

  • 23 years ago I was diagnosed with IBS and perscribed daily tablets. I put up with it until 5 years ago when in desperation I had a course of colonic irrigation. (Worked wonders), the therapist suggested cutting out wheat. The change was incredible - no morning horrendous stomach cramps, swollen abdomen and constipation. I now avoid wheat like the plague but once in a while a decide to have a wheat day if it's a special occurrence, knowing full well the pain that will follow. I've never been tested and don't need to be - if I avoid wheat I feel great, eat it and I'll regret it for 24-48 hours!

  • It is a well known fact that the longer you stay off of a food that you are intolerant to the worse the reaction will be when you attempt to re-introduce it, which seems to be what has happened to you. I would ditch it for good if I were you as, although my tests also came back negative a few years ago, my reaction to gluten is similar to yours.

    Good luck with it.

    Moggie x

  • Thanks everyone. I have just turned down a slice of the very nice coffee and walnut cake in the kitchen at work.

  • I used to think I was Gluten intolerant. Then I discovered it was only commercialy grown flour/wheat with all the pesticides and chemicals. I eat organic wheat without ANY symptoms....

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