After being diagnosed with coeliac disease in March this year, I immediately eliminated gluten and have now been gf for 5 months. It's not been that easy, especially on a recent holiday when it was somewhat spoilt by the daily search for gf food (have learnt my lesson to go prepared and stay in an apartment rather than a hotel!), however, I've been managing okay and have stuck to it 100%. I don't really have many symptoms, so can't say I feel any better or different really, other than the bitter taste in my mouth which I had for months and is now much better, thank god.
However, what I am concerned about, and would like to ask others about, is that now I seem to have become sensitive to even the tiniest amount of gluten. Whereas in my previous 'gluten-full' life, I hardly had any symptoms, last Saturday I had a terrible reaction (chronic diarrhea, feeling sick, and later collapsed) after eating a gf pizza, and I have previously eaten the exact same pizza twice previously since being diagnosed with no problems whatsoever.
Is this normal?
Someone suggested that it's actually better to be exposed to tiny amounts of gluten to avoid becoming hypersensitive, although I know that goes against all the rules of having to stick to a 100% gf diet.
Thanks in advance for any feedback!
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Slov1
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Hi Slov1 , I'm sorry that you were ill on holiday but you've nothing to be concerned about because this is normal to have a bad reaction to gluten since going GF. It's why so many people find doing a gluten challenge so hard after going gluten free before being diagnosed.
As for eating small amounts of gluten so it has less impact, this is not a good idea with a toxin as even small amounts are toxic. Either you are on a gluten free diet or you're not because if you eat small amounts your are still ingesting gluten...
I go self catering and then I can eat what I want when I want so to me it's worth it to stay healthy.
It is difficult being coeliac as our concern over food prepared by others is a very real fear of being made ill and this is whoosh way above most peoples heads, sorry to remember this is a natural emotion driven by self preservation. It is tough sometimes and we've all had similar experiences, so you are not alone.
Sorry to hear about your gf pizza experience, as Jerry has said, you tend to become more sensitive to gluten after you have cut it out. I also find that some of the additives in gf pizza (and other ready made foods) can give me digestive problems.
You could theoretically desensitise yourself to any poison by regularly ingesting a low dose, but in view of the damage that gluten can cause, it would be a really bad idea.
Good luck with the gluten free diet, hopefully it will get easier as you get more and more used to it.
As above but I am concerned about your unusual collapse episode which may need further investigation - I am wondering about a possible anaphylactic reaction in the absence of any more details?
Usually thay can use this method for different allergens to figure out what's causing the reaction. At a hospital setting. Like "don't eat x for two weeks. Then eat it. If you feel any better during those two weeks, and then worse.."
Yes, I've been warned this can happen. Your body loses the enzymes it had that helped you to digest it, and you become intolerant.
Although I did warn someone about this once, and got a telling off from someone on the site, so I should caveat it that I have only been told this via several different people (some I think are reliable sources), and I don't have any links to medical studies to prove this is a risk.
Enzymes may be affected by old age and various illnesses, changing your diet will only affect the amount of enzymes you produce. We all produce the enzymes needed to break down gluten but it’s a long chain molecule, so doesn’t get broken down much and most of it passes out of the body intact. Although it can also pass through the gut wall it doesn’t affect most people.
A further complication is that some people are affected by the fructans content of wheat and other high FODMAP foods, which mimic the effects of gluten intolerance. Nothing to do with enzymes as far as I know.
My husband isn’t Coeliac but eats gluten free at home with me to avoid any possibility of cross contamination. This means that he only eats gluten intermittently and is absolutely fine with it. It seems more likely to me that only someone with an existing sensitivity would have problems with gluten.
Thanks to all those who have taken the time to respond with such kind and encouraging words. I am, and will, stick to being gf, however, it's still hard to come to terms with, since I've gone from having a 'normal' (whatever that is!) life, to being gf, feeling hard done-by when shopping and wanting to eat out, and having symptoms which I never had previously when I ate gluten. I know that long term it makes sense, as there can be a lot of possible complications, but sometimes I find myself thinking maybe I was better off not knowing, as I was prior to the diagnosis, since people who drink heavily and smoke also put themselves at potential risk on a daily basis. But, oh well, I guess this is just one of those things that life throws at us, and we have to just get on with it.
I totally get what you are saying. My son was recently diagnosed and he was completely asymptomatic so could eat whatever he wanted with no ill effect whatsoever. However, when the results of his biopsy came back, they showed significant internal damage (Marsh 3c). So although it may have seemed that it was better off not knowing because his life has suddenly had to change in so many respects, in fact I'm so glad that we do now know because there was so much going on inside that could have caused him really serious health issues down the line.
Hi Slov1, when going on holiday, we always go half board as long as it’s buffet food.
You can always get lots of Gluten free foods as there’s always a lot of variety, the travel company always inform the hotel and the airline we travel on. I did find on my last holiday you can buy a gluten free brownie on the air plain but you are very limited so I always take something on board. Like Jerry said, self catering is good as well.
Jerry is right never attempt to eat any gluten at all even the slightest amount, I have suffered from coeliac disease for 20 years. Once a Gluten sufferer alway a gluten sufferer
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