Please save me!

[AmeliaIvy]

Hi guys, I've recently been diagnosed with "non-celiac gluten sensitivity" and my doctors basically told me it's trial and error but I know most of the things I can't eat anyway... Last night I was bad, I had a subway sandwich and my stomach feels like it's literally ripping itself apart, I feel like I'm going to throw up. Don't get me wrong, I release a lot of "wind" so to speak (haha) but is there anything such as over the counter medication that would be able to help? Thanks guys x

[Penel]

You will need to give up wheat products along with rye and barley. Have a look on Coeliac UK for some help.

You could try drinking some peppermint tea to help your stomach recover. I have found that there's not much you can do, apart from drink water, and make sure you avoid the sandwiches next time.

[Jacks]

If you've NCGS you have to decide if the sandwich is worth the gut pain. Whilst the gluten won't make your body destroy its intestines (as in coeliac disease) it may bloat you causing the symptoms you describe especially if you gulp air at the same time. If I remember correctly those sandwiches are quite substantial.

[Regalbirdy]

Hi LaurCarnage,

Sorry to point out the obvious, but surely eating a subway sandwich after being diagnosed with NCGS is a recipe for disaster! Even if it was gluten-free, I suspect the risk of cross contamination would be quite high because of double dipping.

The best medicine (unfortunately for you) is almost certainly not to eat any gluten in the first place. However I guess it's a tad too late to tell you that on this occasion!

Re: things that help - the advice you are given on the Woman's Health site is probably as good as any - peppermint might give you a little relief. However I personally think that time, rest, plenty of fluids (and possibly a hot water bottle when things get really bad) is just as useful - that's been my experience anyway.

Ultimately, going 100% gluten-free has to be your choice; and trust me when I say that everyone here truly understands what a lifestyle change it is in the beginning. We've all been there! (and can help with any questions you may have!). So why do you think we choose to stick to being gluten free? Because in my opinion, feeling so much better is definitely a trade-off that's worthwhile.

Hopefully in a few days you'll be able to chalk this current episode up to experience. In the meantime, I hope you feel better soon.

Take Care.

[AmeliaIvy]

Thanks for your replies guys and I know it was a seriously bad move. I'm still suffering! Take care you lot.

[DigitalCoeliac in reply to AmeliaIvy]

Hey there,

Although I do agree with the advice above, just thought I'd give a little extra practical help by advising that you try taking Activated Charcoal from Holland and Barret, as this quickly helps sooth the gut when you've been glutened (see link below). Also try taking a digestive enzyme, that contains lots of peppermint oil that will help sooth your gut and sort out the bloating (see link below). Long-term, it's obviously not a good idea to keep eating gluten, but everyone's already told you this, and hopefully you'll follow thier good advice. Long-term it's also good to try to help your gut health by taking probiotics - try the ones Boots does - great for helping your gut continuously stay healthy - NOT a cure (none of them are), but helps nonetheless.

Activated Charcoal: hollandandbarrett.com/shop/...

Digestive Enzyme: hollandandbarrett.com/shop/...

Probiotics: boots.com/en/Boots-DIGESTIO...

--

Sam

[Stephpz in reply to DigitalCoeliac]

Yes medicinal charcoal if fab for sore tummies. Also yoghurt and probiotics. Hope you feel better soon.

[besshilldad]

I am not aware of anything. Best to keep away from all take away and fast food. Even some GF items can cause a reaction. See my post on Tesco sweet n sour. This site is good for advice. Rest and lots of water help, hope your better soon

[Frodo]

I just had a look on the internet as I was aware of a product that claims to help if you've been accidentally 'glutened' while eating out, and it turns out there is a range of products on (can I mention it?) amazon. You could have a look and read the reviews. One I've just looked at has good reviews, but the consensus seems to be these don't work for coeliac but work to an extent for non-coeliac gluten sensitivity - for occasional use if you've eaten out and think food may have been contaminated. One reviewer referred to the product 'taking the edge off' their symptoms. It looks like you can't just eat loads of gluten and rely on these to sort you out, indeed with regular long term use you may feel worse.

I'm just passing on what I've read out of interest, I'm not advising anyone that this is the way to go, nor have I tried any of these products myself.

[Ruthi]

I see no reason not to mention this product, since it is not a prescription medicine.

The product is called DPP IV (ie the roman numerals for 4), and there are a number of brands. It is an enzyme that breaks down the gluten.

You must take DPP IV before you eat the suspect food, and even then, if I were coeliac and not NCGS I wouldn't want to rely on it because clearly the gluten will be in your stomach for a while before the enzyme can get to it. But it is not sold as a magic cure, rather as insurance if you suspect that a meal may contain some hidden gluten. In no way is it a substitute for a GF diet.

I personally have found this product to be amazingly useful. I am gluten sensitive, and also get heartburn from many of the seeds of grass family plants including things like gluten free oats. If I take DPP IV I don't get the heartburn.

We know that all grass family seeds contain proteins that are closely related to gluten - known as gliadins if you want to read up. I am guessing that I am reacting to the gliadins, and that the DPP IV digests them as well. Whatever the reason, I am not knocking it!

[AmeliaIvy]

Got to say I'm overwhelmed with the responses but thank you guys, I'll have a look at the products you've suggested to me. It's just a massive life style change so getting used to it all.

[Venetia]

just be thankful it doesn't harm your gut in the same way as coeliac does (mind you do we really know this, its so newly accepted as a condition)

Avoiding gluten just makes me feel so much better that i avoid gluten like the plague, but I am Coeliac,

Many books in libraries, become an expert label reader, and naturally gluten free foods are probably best without all the additives.

[glutenfreemumuk]

Hi, I hope you feel better soon. My gasterenterologist mentioned that some NCGS patients can react more severely than coeliacs with digestive and ataxia and other symptoms to even trace amounts of gluten. Good luck with your gluten free diet and finding brands of gf food that are not contaminated /or full of chemicals and have low enough gluten <20ppm to suit you. Start carrying snacks which are gf with you so you don't make bad decisions when you're hungry and start with naturally gf food when you recover. All the best.

[AmeliaIvy]

I have the mother in law telling me normal, nom breaded meat, can have gluten in, is that true? It's sounds stupid I know but I cant wait to go shopping and check everything!

[Penel in reply to AmeliaIvy]

There are various sites giving lists of gluten free and gluten containing foods.

glutafin.co.uk/coeliac-stud...

It's best to cook from scratch whenever possible. Good luck!

[urbangirl]

I think I read somewhere that having Non coeliac gluten sensitivity could be the beginning of coeliac.

[corsaUMM]

I have to start eating Gluten again after three months because I have to have an endoscopy. I am scared stiff as to how to cope with eating gluten again, had a blip the other day after eating Pot Wedges was ill all next day.....brand was wheat coated . I was searching for the culprit. I could not believe they were coated. Will be more diligent in future.

I am that terrified it is making me depressed and paranoid.