DH's family and Gluten

[PumpkinSpiceEverything]

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Need to rant somewhere that people might actually understand/sympathise. Husband has been on a trial elimination diet for gluten for about a week now, pending thyroid and other blood tests (good old NHS taking their sweet time) due to a variety of symptoms, ranging from digestive issues to chronic fatigue (and I mean like falling asleep at the wheel in the middle of the day for no reason tired). Long story short, we're visiting his family this weekend down south and they're not very receptive and think it's all a big trend/joke (did I mention he's had significant symptom improvement in just a week on this elimination diet?) and refuse to take it seriously so they're serving pasta and bread/sausage sandwiches for breakfast and we've been instructed to bring our own food.

AIBU to think it's totally rude for them to not take their son's health seriously? I mean, his father would rather (openly) take gout and high blood pressure medication every day instead of eat healthier and cut back on drinking, if that's any indication of their mindset. Apparently the Daily Fail also published a riveting article about the "trend" of being gluten free so that doesn't help, as they regard that newspaper (I use the term lightly) as fact. I was already prepared and have packed food, knowing them... but it still bugs the pants off of me.

If I were your DH I'd cancel the visit. He's in the middle of important diagnostic tests that are important to him and cost the NHS money.

Yes, they should be much more supportive. Do they understand the full extent of the physical issues? It must be incredibly frustrating.

I take it they've ruled out Coeliac (because you do have to keep eating gluten for the blood tests/endoscopy to give an accurate result)? The issues around gluten intolerance, as opposed to Coeliac is that there doesn't seem to be a scientific reason why people should be intolerant , Coeliacs excepted. I was certainly very sceptical at people who had randomly decided gluten was an issue - it did seem like it very suddenly became a fashionable problem to have. It's only relatively recently that people are accepting that there are significant numbers of people who clearly react badly to gluten but yet are not Coeliac - from what I've read, it's all very much a work in progress. Really interesting article here.

Don't bother going until your DH's tests are finished.

If he is being tested for Coeliac Disease it's very important that he is eating gluten for 6 weeks before the blood test. IF it's Coeliac then coming off gluten and then going back on again often exacerbates the symptoms. Many GPs get the advice wrong and suggest elimination to see if it helps first when it's the worst possible thing to do if coeliac disease is a possibility. Good luck.

People don't understand until it happens to them.

I wouldn't go. Being gluten intolerant is no joke, and if they are prepared to be so dismissive of it then they don't deserve your company.

Cancel the visit, citing health reasons. Or no reason at all.

Totally agree with NamelessWonder in that if DH is going to be tested for Coeliac he needs to be eating gluten for 6 weeks before the blood test unless this has changed recently.

If they have ruled out Coeliac and are seeing if eliminating gluten from his diet helps him, then I'd just try ignore DHs parents and do what you need to do. If that means it's easier to stay at home rather then have to pack and prepare all your own food there and be on the receiving end of dismissive and snidy comments, then I'd be tempted to put off the visit till he knows what his diet involves.

My mother wouldn't stop smoking in the house even though it nearly killed me several times (allergy).. among other fucked up things along the same lines. so fucking happy I don't live there any more

Some people are thoughtless and incredibly self involved. I wouldn't visit them if they're not going to take it seriously, it could even put your dh's head in a bit of a bad place having his family think he's overreacting / being stupid / worthy of a joke.

To be fair, gluten is in a lot of unexpected foods and I would not trust other people to be careful enough so I would bring my own food anyway. My best friend has coeliac and before her diagnosis, I had no idea how prevalent gluten is. You need to be really careful and bring your own food at this type of event. It's not just about bread and pasta but things like dressing etc. (and vast majority of people don't know that).

Your IL's sound very rude though so YANBU. But regardless of that you absolutely DO need to bring your own food.

Has the GP told to eliminate gluten?

Honestly, I bring my own food when visiting family. It's too easy for mistakes to be made if someone isn't completely up to speed with the dietary requirements because gluten lurks everywhere. I've been gluten free for 8 years, my family are supportive - they've seen the improvements, but even though they try really hard, I still have to have an eagle eye when I visit because it's just a totally different mind-set to get into and they will cross contaminate without meaning to.

Why is he cutting out gluten if he's due to go for tests ( for i assume coeliac?)

I feel your pain, my Dd is a coeliac has be diagnosed but still my Dh family think it's a fab, yes for some people who choose to go gf, but my Dd has no choice, the only good thing is that because people see it as a fab diet there is more available in the supermarkets which is a good thing.

But I'm sick of repeating myself to my Dh family, only this week we've been invited to a barbecue the in-laws are hosting, with the comment she can eat a burger in a bun, no she fucking can't unless the burger is gf and the bun is gf and the burger is not cross contaminated with the other burgers.
To which they said "oh does that mean she can't eat a burger bun then?"
"NO SHE FUCKING CAN'T"
"Oh ok, well we've got some fondant fancies she can have"
FOR THE LOVE OF GOD!!!!!! Is it really that hard to understand.

He's gone for yet another set of blood tests this week as the diagnosis is still inconclusive. Basically they can't figure out what's causing his health problems and the elimination diet is a suggestion that he's actually said "I hate to admit it but I do feel slightly better" in the week he's done it so far.

We're just taking anything we can to try and help him get better at the moment, even if it's just a suggested elimination diet.

If he is being tested for Coeliac Disease it's very important that he is eating gluten for 6 weeks before the blood test. IF it's Coeliac then coming off gluten and then going back on again often exacerbates the symptoms. Many GPs get the advice wrong and suggest elimination to see if it helps first when it's the worst possible thing to do if coeliac disease is a possibility. Good luck.

This with a million bells on. If it's helping he likely needs to go back onto gluten asap and get coeliac tests done in 4-6 weeks. I came off gluten at docs advice and then had tests done. I just learnt they are all invalid and need to be redone. Going back into it is awful.

If he needs to stay GF organise your own food if family don't/won't understand. It's much much easier. I have some family who understand and some who don't. I take my own food if visiting the ones who "think it's a fad and I'll be fine"

If the GP has asked him to cut it out then they should respect this. But I'd bring own food anyway. It's not easy for someone to understand.

But I must admit (looking as you DSIL) if your coeliac or properly diagnosed as guten intolerant one can't pick and chose later...... one is either intolerant or not. Being a bit bloated is not intolerant. I'm glad your DP is getting his digestive problems looked at properly, the amount of people who self diagnose alarms me, what if they miss something crucial! (Like my neighbour who thought he was gluten intolerant and turned out to be stomach cancer).

I have coeliac disease and despite the increase in awareness about it, my mother (a nurse) would go out of her way to try and kill me. My favourite example of this was when she told me not to bring my own food to a dinner party as she had especially made something for me. It was couscous. Then she threw a tantrum because I was ungrateful and didn't eat it. People are really weird about food.

If his blood tests are inconclusive he needs endoscopy and needs to keep eating gluten til diagnosed

The immune reaction caused by eating gluten is what's picked up in the blood tests.

He must be eating gluten for a good month before any tests can prove coeliac disease conclusively.

Just to clarify, he's not being tested for coeliac - he's being tested for a range of thyroid issues ATM that are all recommended to pursue a gluten free diet. I have a very close friend who has Hashimoto's and has had spectacular results from a gluten free diet in the holistic treatment of her health.

Luckily we have found a great doctor who does a lot more than "here's a prescription, see you in a month" but it can be tedious waiting for a diagnosis when one is difficult to find.

In terms of "digestive issues" think persistent vomiting, diarrhoea etc. Didn't want to be too TMI to start but also want to ward off anyone who thinks we're self-diagnosing for bloating

It's very rude. But if he's gone gluten free he needs to get used to bringing his own food if in any doubt. The relatives might feel a bit silly when he's sitting there eating food he's had to bring himself. The tricky part will be resisting all the 'Go on, one slice of toast won't kill you' comments.

And be really vigilant when reading labels. ANYTHING can have gluten in it, including oven chips, soy sauce, pre-packaged grated cheese...

Usually the first step is eating gluten - about 4 slices a day for 6 weeks and having a blood test. You're GP would readily do that if you can present symptoms.

Was the elimination diet recommended and being overseen by a doctor?

My 4 year old has similar issues.
She can't digest wheat.
She is not coeliac. Oats/barley don't affect her.
Most of my family are really good at checking and preparing food.

If we visit for a day, we usually take things with us. I wouldn't expect anyone to pay £3 for a small loaf to make her one sandwich!

My mum keeps a bag of free from pasta in her kitchen, as we eat there frequently.

I would cancel your visit. Or delay it until you get a diagnosis if possible.

Pumpkin I would rearrange the visit when you know what exclusions have to be made. I think the older generation just don't 'get' this food intolerances malarkey. I'm wheat free and dairy too (although goats milk ok) and I can almost see my mother rolling her eyes.

As an aside, does your DH take probiotics? I have found them hugely beneficial to my irritable gut, and hopefully they won't interfere with anything else going on. I take (often a small fistful!) of Biokult. They're brilliant and don't need refrigeration.