Gluten Free Guerrillas

Suffering :(

Hi All,

I've had a really odd weekend where I had a horrible migraine and could barely stay awake, I slept for over 40 of the 48 hours. Followed by a rotten week of suffering upset (really awful) stomach, bloating to the point where I feel like I'm going to burst, and so fatigued.

In Spring 2013 I had a scan, an endoscopy & a colonoscopy - not my first I might add, but after paying to see a nutritionist we figured out that gluten is my trigger (or at least of them!), so back on it before having tests I felt rotten, tests/biopsies etc showed nothing, other than a hiatus hernia, and gallstones. My consultant concluded that it must be intolerance rather than coeliac. That's fine, GF diet for me then. I've since had my gallbladder removed and that's got rid of those pains.

Anyway, I've been GF since then, with the odd lapse in frustration, but have been GF for 6 months+ For the last 3 weeks I've been on a very healthy, practically vegan diet. Then came Friday, very hungry and emotional I had a doner kebab! :O WITHOUT THE PITTA I might add. Not ever been a problem before, but I'm now wondering if that could be the culprit?

Either way, I think IF this was a gluten reaction my reactions to it are getting more extreme each time. I mean, being practically passed out for 2 days really isn't ideal! My doctor just said it must be flu...

I've had no help with being GF at all, other than the initial nutritionist that paid for, and I cannot afford to do that again. I really think there might be more to this than gluten but I don't know how to keep on approaching the doctors, they seem to find ways to fob me off all the time, IBS, stress etc etc.

Can anyone give me any kind of advice on what to ask them? or how to get some help with all this?

I'm sick of never having any energy and looking pregnant! I'm so uncomfortable and it's so hard to make people understand how bad it makes you feel when you look fine from the outside (well, apart from the "pregnant" belly!)


8 Replies

Hi jennaling,

Sorry to hear you have been feeling so unwell.

Last time I got glutened (at the beginning of February), I didn't return to what I feel was relatively normal health for about 10 days. It did feel like flu for the first 48-72 hours; and is something I never used to get in the early days of being GF.

Well done for managing to be gluten-free for six months with no lapses. Unfortunately, the longer you are gluten-free, the worse the reaction is likely to be when you get glutened - which it sounds like you probably have been. I think of it as a trade-off for feeling better the rest of the time - so worth it IMO. It also has the side effect of encouraging more GF vigilance!

Takeaway foods are a veritable minefield for someone on a GF diet. They often contain hidden sources of gluten. I guess the kebab is something you have to chalk up to experience. Mistakes happen, you just try your best to keep them to a minimum.

As for the tiredness, have you been checked for anaemia lately? there are three types of anaemia: Iron, folate and B12. The last is especially relevant if you have been following an almost vegan diet. Vegans have to be very careful about getting enough B12. Are you a vegetarian? Because it also applies to veggies as well. It's also made worse if you've had IBS symptoms for a long time, because the body often doesn't have time to absorb it properly from your food sources.

Vitamin D deficiency also causes fatigue. As someone who is GF, you should be consciously ensuring that you are getting plenty of calcium into your diet. Calcium and vitamin D go hand in hand for bone health (osteoporosis prevention is important).

As for GPs, I've found that as a gluten sensitive, you have to learn to negotiate and haggle nicely with them - or you get fobbed off. Most of the time this requires one to have done their homework first; and if that doesn't work, I found getting a second opinion with a different GP to be most helpful. If at first you don't succeed.... Find someone different who is willing to listen!

1 like

Hi Regalbirdy,

Thank you for you're lovely reply! Some great points on there.

Completely agree, takeaways are a real minefield! A good friend of mine has been confirmed Coeliac for over 10 years, he tends to guide me through, however on this occasion he was fine and really wasn't, which is why I questioned whether it was even that. I guess I will never know, but your experience of being glutened leads me to believe it probably was gluten.

I did wonder about anaemia, I was veggie about 10 years ago and if I remember rightly it did affect me back then. I only eat seafood 2-3 times a week now, less and less actually, so you might be on to something there. As for the calcium, again, yes, the only dairy I used to have was a few cups of tea, which I've now knocked on the head because I'm uncertain if I also have a dairy issue.

I was confirmed vit D deficient a while back and do have tablets for that, but I'm pretty rubbish at remembering the, plus I'm a great believer that you should get everything you need from your food....but either I'm not absorbing things properly or I'm still not eating the right things, or at least not enough of them. If I'm calcium deficient too then that would reduce absorption of some vitamins....argh....You have to become you're own nutritionist with all this don't you?!

I think I need to make a list and go to my GP! I have one doctor at my practice who will actually listen, so will try him first.

I'm very strict with my food anyway, I cook everything fresh (no ready meals etc) anyway, so I guess it is just a case of watching out, or avoiding completely, the dreaded takeaways!

Jen :)


Hi Jen,

You're right - you do almost have to become your own nutritionist. You may also have further intolerances which are causing the bloating. Hopefully others will be able to offer you more suggestions about this.

Good luck!

1 like

Hi Jennaling

Sorry to hear about your reaction to food. As Regalbirdy has said, once you go gf your reaction to being glutened can become very strong. After 10 years of being gf my reactions to being glutened do not last as long as they used to, hopefully this means my body has healed and is better able to fight off the effects.

Apart from sorting out any possible deficiencies, it might be worth taking some strong probiotics to help repair your gut, at least for a while. If you are keen to get all your nutrients from food you could have a look at fermented products.

Also remember that vits like vit D are fat soluble, so you may need some natural, minimally processed fat in your diet, perhaps olive oil or coconut oil.

Unfortunately you do need to become your own nutritionist. Thankfully there are sites like this one with a lot of helpful people.

Good luck with sorting it all out.

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My guess is that you are also intolerant to other stuff, since you don't have dairy do you eat a lot of soya? Then if you gut is still inflammed, which it will be for some time, you may find that you can't have other food groups for a while too, like too much roughage, any of the mightshade family eg tomatoes, aubergines, peppers, potatoes etc etc. It is a slow process to work it all out & all you can do is listen to your body & yes become your own best nutritionalist!. Have a look on a website run by Micki Rose purehealth & her other related sites, there is quite a wee bit of free info on there which you may find really useful.

Also did your

TTGA blood test come up negative or positive? if it was positive & then you had no villi damage surely they would diagnose NCGS which is still an auto immune problem which should ensure that the other support services Ie Dietician & annual blood tests, densa scan etc should still kick in? If it was negative, your GP if he/she was any good, would still ensure that you have your blood tests for your vitamin/iron levels etc......but there again, we all know how difficult it is to get a good GP who really 'gets it'! Good luck & remember, listening to your own body is paramount.


I'm not sure doner kebabs are gluten free at all. Most of the references online say they're made with breadcrumbs in, so you probably got a big hit of gluten out of nowhere, which might explain the severe symptoms.


Thank you for all your replies :) Things got better over the weekend thankfully but then today again I've been struck with an awful upset tummy!!! Didn't even have that much yesterday, all GF of course, the only thing someone has mentioned is maybe it was the very ripe banana?! I never normally eat bananas that aren't green/yellow but I was hungry and this one had quite a lot of brown spots, has anyone else heard of this? or suffer with bananas?!

I'm so sick of this now, I really need to make that appointment with the doctors but they're never much help at all!


Hi Jen, I've been diagnosed intolerant to loads of things, gluten dairy eggs, and even GINGER, not just annoying but really confusing! But I've been following the deliciously ella blog, and I have felt so WELL on her food, no bloating, loads more energy, better skin, nails, hair, everything. Try it for two days, I promise you'll feel better. And the brownies are amazing! Mary x And stay away from the kebabs!


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