Gluten Free - educate me?

[hidinginthenightgarden]

I'm unsure exactly how badly people are effected by gluten. I am guessing it is a scale like peanuts but also thought it was an intolerance not an ellergy.
I had had two very conflicting experiences lately with gluten free people.
First was in a cafe when the lady in fromt said that the panini grill wasn't gluten free because the two panini grills were next to each other on the same grill and would contaminate eachother. She also complained that they touched the normal bread and then her tea cup without washing hands. Didn't question this at all.
DD had a friend over for tea who is gluten free. Her mum says she is fine with chicken nuggets but the two types we have in our freezer (and the local cafe) all had gluten in them.

So is this a scale and some people will suffer from a trace and other if they eat a sandwich? Realistically I thought you would have to actually ingest some gluten for it to be a problem but maybe not?
I genuinely want to knwo by the way, I am not being goady. This appreas to be increasingly popular amongst DDs friends so would like to be more educated so I didn't have to rely on kids information.

I have coeliac disease and am very sensitive to gluten. It is not an allergy, but an autoimmune disease. It is diagnosed by a blood test to measure anti-gliadin antibodies AND biopsies of your intestines, as coeliac disease flattens the villi and causes nutrient deficiencies. While some people do react more badly than others, there are quite a few people out there that choose to embrace a gluten-free diet unnecessarily. (It’s become trendy) If your DD’s friend is eating regular chicken nuggets, she can’t possibly have coeliac disease. (I would be doubled over in pain and running to the loo within 20 mins.)

Yes. There is coeliac disease and there are people with other conditions such as IBS. Coeliacs (and some people with IBS) have to be very careful with cross contamination, whereas others can tolerate a small amount (it varies person o person).

I avoid gluten just because it makes me bloated and uncomfortable and gives me horrible wind. Sometimes I eat a cake if it looks particularly delicious.

A slight intolerance is very different to coeliac disease.

I have an autoimmune thyroid disease and my consultant recommends avoiding gluten. When I do eat gluten, I become very fatigued, sluggish, extremely bloated and my mood drops.
When I don't eat gluten, I don't get bloated, have more energy, good mood and my thyroid performs better (better blood test results)
So whilst I don't have coeliacs, I have a sensitivity so I avoid gluten. Although trace amounts probably wouldn't bother me and I think some people get away with eating some gluten. Unless you have coeliacs of course.

I really find it hard when people say they are gluten free and then order the cheesecake for pudding.

A totally gluten free diet is the only thing you can do to manage coeliac disease and it’s harder to do than most people think. It requires planning and lots of missing out. If you don’t have coeliac disease then you don’t medically need to be gluten free. Obviously people have intolerances but there is a vast difference between an intolerance and an autoimmune disease.

How is it different to an coeliac disease though? The symptoms for some are exactly the same.

In an autoimmune disease the body attacks itself leading to malnutrition, increased risk of bowel cancer.

My DD has just been diagnosed with coeliac.
Non contamination is huge!

She may not get a tummy ache, some people never get any. My DD will be fine but then one day on the floor screaming in pain.

It isn't just about symptoms right away, there are many other problems caused by just contamination alone. Osteoporosis, infertility, nerve damage and rare but also can be linked to bowel cancer. I doubt any mother would risk that for a 'cheat meal'

Dd has her own toaster, her own bread board and so on.

The trend has absolutely pissed all over coeliacs and their safety. People now do not take it seriously. When you are watching your 12 year old writhe about in pain it is easy to take seriously.

Well Dd has coeliac disease, it’s not an allergy or an intolerance but actually an autoimmune disease. People with it will have different symptoms, some vomit, diahorrhea, some no symptoms.

Dd tends to feel very hot, very faint, talks gibberish, acts like she’s drunk, collapses on the floor and makes no sense. Her symptoms come on about 24 hours after eating any gluten and last a few hours. It can be quite scary.

She has a friend who will be wiped out for 3 weeks if he eats gluten by accident.

One crumb is as bad as a slice of bread. So cross contamination a big issue. She has her own toaster, cutlery, etc. Own butter. She has got as good as me about quizzing cafe staff about wipe down procedures before they prepare her anything.

So morrisons do a gluten free pizza at the pizza counter but it’s no good because they stick the ladle in the pizza sauce, swirl it on a normal pizza base for someone previously, then put the ladle back in the sauce and now the sauce isn’t gluten free anymore as the ladle had touched the pizza base.

If she was to continue eating gluten it raises her risk of bowel cancer. This is why it’s important for coeliacs to not eat gluten even if they don’t get symptoms. She struggles to absorb vitamins as her villi were/are flattened so is anemic, vit d deficiency. But as she remains gluten free her villi should improve.

Also a lot of coeliacs have a poorly functioning spleen so pick up infections more so are entitled to flu jabs. It also affects bone density so dexa bone scans.

I have no idea why this woman says her Dd can eat nuggets with gluten in.
I suspect she is following a fad diet for no reason.

The woman in the cafe was correct about the grill.

@OnlyToWin I just meant in terms of symptoms. Some people seem to think an intolerance or sensitivity is less painful than coeliac disease. Of course it is on a scale, but it can be ghastly. Especially as it often applies to multiple foods.

See what you mean. Sorry I misunderstood the question.

@vivalebeaver - interesting about the bone scans - have never been offered those.

Bit cheeky of me to jump in, just wanted to use it as an opportunity to explain about other conditions connected to gluten too.

I'm with everyone who has suffered a crippling attack (or 1000!) I also suspect there are a large number of people with undiagnosed coeliac disease as often people cut it out before the GP will test, so it is unreliable.

There is a huge problem with shops describing things as GF when they really aren't.

It really bugs me that a lot of establishments now ask if it's an allergy or an intolerance if you order anything gluten free. If you're coeliac it's neither but I'm not sure that going into the specifics of auto immune conditions is particularly helpful so I normally just say it's an allergy, as i want them to take allergy levels of care with my food preparation.

Some areas do the dexa scan for all coeliacs once they reach a certain age, others only offer it if you start getting fractures. Dd has never had one.

She was severely malnourished when she was diagnosed. She’d been wasting away infront of us but had a six month wait for an appt. she actually skipped the queue as we couldn’t wake her one morning and she was rushed in. I’d spent the previous week ringing every hospital in a 100 mile radius trying to get her seen, I’d rung my GP up and said she would be dead before she seen. At the hospital they said she was 24-48 hours away from dying. They kept quizzing me if she was bulimic or anorexic. She weighed 40kg at 17yo and as tall as me.

DD is coeliac. She once touched some gluten to her lips and she wasn’t right for 6 weeks after.
Cross contamination is a huge issue.

A family member (aged 7) has coeliac disease. They live in a completely gluten free house. No one brings in any foods which contain gluten.

She is very, very sensitive to any trace of gluten. The family use toiletries which are gluten free.

I would not have known just how serious this is if not for spending time with the family and eating with them at home and in restaurants.

It's a horrible disease and I think that it's not widely understood just how dangerous it can be.

Thanks ladies. This makes it so much clearer.
I appreciate your time.

A friend of mine has coeliacs & his is so bad his daughter can't even have Play Doh in the house.

My dad has coeliac disease. He can't eat any gluten, uses a seperate toaster etc. He can eat stuff prepared in a factory containing gluten- bit others can't. We can eat normal bread etc.

In my job we have kids that are gluten light (i.e we need seperate bread, biscuits etc) but traces are ok. We have some that need food cooked seperately.

Gluten is in all sorts of unexpected things- like smarties (at least at one point, I haven't checked in a while).

To grossly over simplify for @hidinginthenightgarden - theres several groups

1. People diagnosed with coeliac disease. They will avoid all gluten at all times for any reason at all, and will be very worried about cross contamination. The short term symptoms range from immediate and severe to more general and taking place over days.

However they ALL get serious long term health damage from eating gluten.

1. People who are non coeliac gluten intolerant . Many have lots of allergies or other anti immune conditions. Most of them will avoid all gluten at all times, but they are less worried about cross contamination, usually because one crumb in the butter won’t make them ill.

They often get the same short term symptoms( doubled up in pain, running to The loo) but don’t get the long term health damage if the eat gluten.

1. People who choose to eat a low ish gluten diet because it makes them feel better physically or psychologically. So they might eat cake today because they had eggs for breakfast, but not cake tomorrow because they had toast.

For them it’s more of a dietary preference than a dietary requirement.

1. People who don’t even know what gluten is or what food it’s in but think they are being cool and trendy. “ My kid is gluten free but has no problem with regular chicken in breadcrumbs “ would come into this group.

Along with the people who are not gluten free but pinch all the gluten free food from buffets “because they have always wanted to try it”. Many of them believe that a GF cake is in some mysterious way more “healthy “. It’s not , unless you are intolerant to gluten. It’s just less tasty, a weird texture , half the size and twice the price.

It’s very hard for people in groups 1&2 to get confused why people in groups 3&4. I am often seen as being difficulty because I can’t ( rather than won’t ) eat gluten. I’m given lectures on how cutting out a food group is unhealthy ( gluten isn’t a food group ).

I’m told that someone they know is GF and eats cake, so why can’t I ?

I avoid going out for meals as it’s so very difficult. Even places that advertise GF food sometimes mean “ we take all the items containing gluten off the plate”. So you end up with half the meal and it’s dry and tasteless.

I dread going to weddings as all the GF food disappears off the buffet very quickly ( meat fish chicken cheese ) and you are often left with rice and lettuce. It’s even worse for coeliacs as there’s a high risk of contamination.

I have a sweet tooth and it’s very very rare to get a Gf dessert, even though we can eat fruit, cream, chocolate, eggs, (most) yoghurt, meringue, ice cream . Every bloody thing is in pastry.

Once at a very posh wedding ( sit down meal ) I was actually brought an apple as desert. Just an apple on a plate. Everyone else at the table was like as they tucked into their choice of half a dozen delicious cakes.

A small number of the general public seem to think we have these medical conditions on purpose to Make their life difficult so they feel justified in being rude to us as we are ‘weirdos’. It’s very upsetting.

My SIL doesn’t eat gluten (by choice) and goes on about what she can eat and ‘she’s fine’. It’s not the same thing!

@Double3xposure have you ever seen the #fruitisnotapudding tag on twitter at Xmas for people at Xmas meals?

Once at a very posh wedding ( sit down meal ) I was actually, brought an apple as desert

I went to a wedding where I had fruit for both starter and dessert, although to be fair it did consist of melon AND orange

Dd (5) has coeliac. She is even sensitive to airborne gluten such as flour particles in a bakery and gluten passed on from the lips of a kiss. She reacts badly to gluten and as pp said comes across as drunk or 'spiked' eyes roll, sweats, vomits, semi conscious. Often she will have a rectal prolapse which requires emergency care. We are very much on edge when it comes to cross contamination.

As a coeliac, I get irritated at restaurants when staff mention “gluten intolerance”. The burning, bleeding ulceration I get from my mouth to my anus is not an “intolerance”. It is my body trying to kill me.
When I was diagnosed with Coeliac Disease, it was virtually unheard of. Now more and more people are being diagnosed as genuine Coeliacs and others are avoiding gluten, it is easier to find gluten-free products like stock cubes and soy sauce, so life is a lot easier. (Yay!!!)
Because I wasn’t diagnosed until I was well into adulthood, I never learned to like foods made from cereals. I don’t eat breads or pastas, etc. Never liked them, so don’t buy the GF alternatives. I also don’t buy GF biscuits or cakes, etc. If I could eat an almond croissant without suffering, I would die happy. (It’s been close to thirty years, but that’s what I think I miss...)