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Gluten free - fad or not?

(39 Posts)
Charlieismydarlin Fri 19-Aug-16 14:34:07

I gave up wheat a few years ago. I'm not coeliac but feel a million times better without it. (Not IBS issues but rosacea, fatigue, sinusitis).

Anyway, of course I'm told by medical types that it's all a coincidence yadda yadda. I suspect they see me as a middle class first world type. I don't really care as I have avoided major sinus surgery!

Online, there is a shed load of research either way. I was told there is no evidence for NCGS but I think there is.

Anyway, now one of my DDs is having terrible stomach pains and we are ruling out coeliac. I'm thinking of drastically reducing gluten (once gluten test done) and just letting her have it at parties or play dates or treats.

Medical folk raise eyebrows at this.

Is there any consensus?

I'm rather cynical about NHS advice to be honest. I feel they take forever to catch up on growing research.

Summerholsdoingmyheadin Fri 19-Aug-16 14:37:13

Unless you have a genuine gluten allergy/ intolerance/ coeliac disease then you are just one of those faddy people who give people with genuine medical reasons to avoid gluten a bad name. It's just a pseudo effect unless you have a genuine medical reason to not eat gluten.

Summerholsdoingmyheadin Fri 19-Aug-16 14:43:22

And by saying you will let your daughter eat gluten at parties etc you sound like one of them people who say they can't eat gluten and have separate meals prepared and then happily scoff big slabs of cake. It makes life more difficult for people who really can't eat gluten as people don't take them seriously.

Charlieismydarlin Fri 19-Aug-16 14:49:37

Why summer? I don't even plan to tell anyone what I'm doing on the basis that kids can eat as they like out the house.

I dont really accept that I make life harder for coeliacs by choosing not to eat gluten. Firstly, I keep it to myself unless asked and secondly, I don't ever slip up.

What is genuine intolerance though? I don't have anything diagnosed - but I have a number of issues when i consume it. I don't need anyone to tell me that isn't the case - my face erupts in rosacea pustules!

Summerholsdoingmyheadin Fri 19-Aug-16 14:58:49

Well if you think what you are doing is okay without question then why start a thread asking about it? If you have genuine health problems from eating gluten you would avoid it 100% for both you and your child (if she is going to be gluten free too). I have a child with genuine wheat allergy, even a few crumbs could mean he needs to use an epi pen and be rushed to hospital but of course lots of restaurants are casual about wheat allergy because you get lots of idiots who ask for special meals to be made and then eat cake off the normal menu because they like cake so will just have a bit.

Charlieismydarlin Fri 19-Aug-16 15:25:22

Because I think there is probably a number of people better off eating less wheat or very little.

Which, as you say, is a totally different kettle of fish to the understandably difficult situation you are in.

You sound very angry.

Summerholsdoingmyheadin Fri 19-Aug-16 16:14:59

Yes, I am angry. Angry that all these faddy types who follow fashionable eating trends make life harder for people with actual food issues. Being genuinely gluten free is really hard especially when you want to eat out and the restaurant doesn't take you seriously because so many faddy types come in and order gluten free and then eat gluten anyway.
Do you avoid all gluten? Vinegar kn chips, separate toaster, separate butter, careful about cross contamination etc? If you are not avoiding those things then you are not 100% gluten free and should still have the symptoms that you think are gluten related, otherwise gluten is not the issue.

FeedMeAndTellMeImPretty Fri 19-Aug-16 16:34:20

'Faddy' GF people have undoubtedly made life EASIER for coeliacs by increasing the demand for GF goods at supermarkets and restaurants.

Yes there will always be some eyebrow raising about intolerances because some people take the piss, but you don't have to be coeliac to have reactions to gluten, so avoiding overly processed foods in favour of meat and vegetables etc has to be a good thing.

My DP is GF as he has an autoimmune condition that can flare up when he eats it causing him huge pain and as well as weeks on high strength medication. Even without this effect some short term discomfort and dizziness is enough to swear him off bread & cakes for life.

For someone who loves food, to cut out a massive proportion of the foods you enjoy is a big sacrifice and people don't just do it on a whim, it's because they feel better without it. I certainly couldn't do it, even though Iv'e been advised that it would be beneficial for my own long-term health problems.

If I did I certainly wouldn't be happy about coeliacs making out that it was somehow detrimental to them because I don't need an epi-pen, there are all sorts of allergic reactions, some stronger than others so trying to win allergic top trumps is a bit pointless.

Summerholsdoingmyheadin Fri 19-Aug-16 16:41:25

Yes, faddy eaters have made availability of gluten free foods more available in shops but they create more scepticism in general. Scepticism means people not understanding how serious consumption of the wrong foods is for some people.

Coeliacs don't generally need an epi pen. Somebody who is allergic to wheat (like my DS) might need an epi pen. HTH.

sunnydayinmay Fri 19-Aug-16 16:49:55

I also think you should thank the "faddy" gluten avoiders for making it far easier to find gluten free food in shops, restaurants etc.

I am not coeliac, but gluten makes me swell up and double over with pain within 20 minutes of eating it. This includes crumbs in the butter dish, barley in crisps etc. No official diagnosis, although my GP said it will probably have a name within ten years or so.

If something makes you feel ill when you eat it, then don't eat it! Goes for your children as well.

Summerholsdoingmyheadin Fri 19-Aug-16 17:04:18

If something makes you feel ill when you eat it, then don't eat it! Goes for your children as well

I agree with that. But OP is happy romper her daughter eat gluten foods at parties etc so it is either: her daughter doesn't really get ill from eating The foods in which case it is a total fad or she does get ill and OP doesn't care that she is ill because a bit of cake at a party is worth the illness. I don't know which it is.
But eating out is made More difficult by faddy eaters who don't stick to a fully gluten free diet as it leads to gluten avoidance being taken less seriously. Should I be thankful to faddy eaters that restaurants don't take cross contamination seriously because some gluten avoiders eat cake anyway?

Monkeyinshoes Fri 19-Aug-16 17:14:59

I had various health problems that I didn't realise were connected at first (digestive issues, chronic anal fissures, recurring mouth ulcers, swollen painful bleeding gums despite no signs of infection). After months of dreading going to the loo, and GP unable to explain it or do much to help, I found an RCT that concluded such problems may be caused by an undiagnosed food intolerance.

At first I went dairy free, no change. Then I went gluten free. My digestive and loo issues stopped and the mouth problems did too. I kept this up for five months and then thought maybe it was a coincidence. So I ate gluten containing foods again...soon I had a mouthful of ulcers, gums swelling up and bleeding from my arse. I went to the doctors and told them all this and was sent for blood tests, incl coeliac test. Despite eating gluten for a miserable six weeks before testing, the test was negative.

When the results came back the doctor said I could be intolerant but not coeliac and I should go gluten free again and see if my problems resolve, if they do then I have my answer. I went 100% gluten free again, that was eight months ago and I've not had a problem since.

Autoimmune conditions run in my family so maybe that's connected. Maybe I'm IgA deficient and got a false neg on the coeliac test. I don't know. All I know is I feel so much better and I wouldn't eat gluten again (not even a little bit) even if you paid me.

Summerholsdoingmyheadin Fri 19-Aug-16 18:08:32

monkey you clearly have genuine significant health issues with gluten and I don't blame you for staying gluten free despite what the test results say. You are not a gluten faddy person because you wouldn't eat a bit of cake at a party or in a restaurant because you know the consequences would be severe. I don't think people need a confirmed diagnosis to say that they have gluten allergy/ coeliac/ intolerance but I don't think that those that eat just a bit of gluten actually have genuine issues because like your experience shows, you can't eat just a little bit and be okay.

ItchyFeet16 Fri 19-Aug-16 18:19:19

My DD has NCGS, been gluten free for over 2 years. All her ailments cleared up within less than a week of going gluten free. In addition to reflux (it took her 2+ hours to go to sleep), stomach cramps, nausea and much more she had started losing hair. She still has the bald patch (about size of 5 p coin) but nothing lost since. She tested negative for celiac but IgE levels were off the scale.

I succumbed for her birthday party and let her have a regular cake and she spent the last 30 minutes stuck in the loo so never again. It does occasionally get her down but we all eat gluten free dinners (amazingly easy once in the habit), she has gluten free pasta - so good these days you can't taste the difference and rolls we keep in the freezer. I'm sure there are friends/family who are skeptical of it but it has to be done.

Please don't let your child eat gluten at parties etc. If they have coeliac/an intolerance, they may find that after a while without it, if they have it again the reaction will be severe.

I'm coeliac. Before diagnosis, I'd be in a lot of pain and discomfort and poorly after gluten, but because I didn't know any better, I was eating it a lot (which is also why I'm now very deficient in iron, B12 and folate). Once diagnosed, I cut it out completely - and the first time I got accidentally glutened, I genuinely thought I was dying. The pain and vomiting and rash and headache made me feel so poorly. If it's for health reasons, go 100%.

I don't get angry at people who are gluten free because they feel better for being gluten free, but when people claim to be coeliac/intolerant/gluten free but will then have vinegar on their chips, or eat sausages/cake etc, it makes other people think that gluten free is just a fad and trivialises what the rest of us go through with having to be so careful not just to avoid accidental glutening but cross-contamination too.

People who say they're doing it to lose weight get a big eye roll from me. It doesn't work because gf substitutes are chock full of sugar anyway. I am grateful to the faddy GFers because of the improved availability of gluten free foods (Tesco have an amazing range now which makes me very happy!), but when you hear someone in a restaurant asking for the gluten free menu, reading it and then saying "Actually I'll have fish and chips/steak pie/pizza", it's a little grating.

If your daughter is young enough for you to make food decisions for her, please don't go down the route of occasional gluten, for her sake.

Monkeyinshoes Fri 19-Aug-16 18:29:32

Yes, I should have ended that post by saying from my experience I can see the case for NCGS or being gluten free despite a neg test. However if you do have issues with it you should cut it out completely.

Oliversmumsarmy Fri 19-Aug-16 18:31:47

I am not coeliac but ever since I can remember I have had dreadful eczema and what can only be described as a thick crust of cradle cap on my scalp.

Took a holiday to the USA where the bread was inedible because of the amount of sugar in it to realise my skin issues could be related to my diet. In the space of 3 weeks without wheat or dairy I had a clear scalp and clear itch free skin. Doctor thinks it is rubbish and I should just eat wheat and dairy and he would prescribe a cream to deal with the rash etc. The same creams and shit that I have rubbed on myself virtually nightly for as long as I can remember which didn't cure it then so why does he think it is going to cure it now.

FaithAscending Fri 19-Aug-16 18:34:29

To answer your question: fad or not? It's actually both!

Loads of people are on faddy GF diets because it's the 'in' thing. They are the people who insist on a GF meal in a restaurant then are seen sneaking garlic bread hmm

I believe I have NCGS. I have bad IBS and going GF has made a huge difference to my symptoms. I've had a gluten challenge with biopsy that was negative but I know gluten (and excess lactose) cause my issues.

The problem with going GF but then having it as a 'treat' is that as Ovaries says, you adjust to GF life and then you can react more severely. For me it's the difference between a. Always eating wheat - constant bloating with irregular bowels, and b. Severe bloating, trapped wind, nausea and usually TMI? very loose stools. I know if I've been 'glutened' within a couple of hours now. Your DD might end up associating parties with feeling ill! I'm not saying don't ditch the gluten, we eat way too much in a Western diet but think carefully about how you approach it.

Charlieismydarlin Fri 19-Aug-16 18:38:51

But summer the crux of my argument is that for non coeliacs, I feel there must be a gluten tipping point whereby a little is ok (say soup made with a stock cube) whereas more than this is problematic. This is very different to coeliac.

You call it faddy. I call it anything from intolerance to sensitivities.

The main reason I want my kids to eat "normally" when out is that I strongly suspect they are only intolerant, meaning small amounts are ok. I also suspect if they completely avoid gluten, they will grow up utterly intolerant to any amount and might not thank me for that.

I appreciate people like me make people cross. But, like a PP said, I think there will be a proper diagnosis at some point for people like me. Who may even choose to eat the odd by of cake and have a sore tummy. (Not my choice but perfectly valid).

We can't all eat foods that don't agree with us solely to avoid upsetting true coeliacs! That would be an odd result but I think is what is suggested here?

Anyway - thanks to everyone for their stories. Do you all have enlightened GPs?

I am amazed by the number of kids with chronic tummy problems, who test negative for coeliac and it is never suggested there could be a gluten intolerance.

Veterinari Fri 19-Aug-16 18:43:57

Factually Summer you're incorrect. I'm coeliac (diagnosed by biopsy and bloods) but have relatively mild symptoms - I can share a toaster, eat vinegar on chips etc and not necessarily have an immediate problem (though I recognise it's not good for my longterm health)

There isn't a clear hierarchy of gluten sensitivity - the lines are blurrier than you seem to think and someone like the OP without a diagnosed disorder may well have more severe symptoms than me even though I have a diagnosed auto immune disorder.

Restaurants aren't sloppy with cross contamination because people WA cake - they're sloppy because they're poorly trained and don't understand the consequences.

Charlie I believe the amount of processed wheat in our diets has increased beyond all recognition over the past 50 years and some people are going to struggle to adapt to this diet when it's not what we've evolved to consume. Coeliac disease is more prevalent in Northern Europeans because we're adapted for a Scandinavia hunter gatherer diet not a middle eastern or Mediterranean agrarian diet. Dietary differences are a genuine issues (e.g, lactose in Asian populations not adapted to dairy) and I don't see why the sudden shift to gluten products wouldn't create similar sensitivities - I suspect the science just hasn't caught up yet

Natsku Fri 19-Aug-16 19:08:42

Both. Some people go gluten free as its a fad and others because they genuinely feel better without it. I believe the evidence for NCGS is mounting so probably won't be long before there's a proper diagnosis.

I have coeliac disease, as does my mother and DD. The faddy people have helped increase availability and I've had no trouble in restaurants but I live in Finland which understands coeliac disease better.

Also vinegar is allowed by the latest guidelines. Wheat starch too.

Vinegar is allowed by the latest guidelines.

Not sure what you mean by this?

Natsku Fri 19-Aug-16 20:36:55

Someone said coeliacs can't have vinegar but they should be able to as the levels of malt in the amounts used makes it lower than the 20ppm that is the legal definition for gluten free. Soy sauce is OK too.

I can't sad very bad reaction to malt vinegar. I miss salt and vinegar chippy chips!

Natsku Fri 19-Aug-16 21:30:18

Yeah some people are more sensitive than others, some can't have pure oats for instance. I'm lucky to not be too sensitive, never actually had any symptoms before diagnosis.

I miss vinegar chips too though, they don't do chips right in Finland.

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