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Coeliac disease


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It appears that my 2.5 yr old son has Coeliac disease (biopsy on Sat), and my wife also thinks she might have it too...fortunately I don't match any of the symptoms.

 

So it seems very likely we'll be changing our family diet accordingly - what is it like living with family members with Coeliac disease? Any tips for helping the transition? Thanks.

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I was diagnosed 1.5 years ago, i thought it was going to be pretty tough but the transition to it was pretty good. I am constantly learning what works for me. Early on i was buying stuff from supermarkets that were labelled gf but soon realised that all of these packaged "foods" were no good. My body was still inflamed and was still not feeling that good.

I removed processed foods and stuck to fresh veg/meat/fruit.

Personal advice id say try and steer away from packaged foods, its all rubbish, sometimes it takes a little longer to make your own foods but will make your son/wife/yourself feel heaps better.

I only have difficulty finding things to eat when i go out or away. I usually prepare meals if i know this is going to be an issue.

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I havent found eliminating gluten to be that difficult to be honest. Once my mind set changed and I realized wheat and dairy is causing me harm - it was much easier to avoid. If I do have an occasional bite - a painful night with no to restless sleep puts me firmly back on track.

 

Meals have to cooked at home - all processed stuff goes out of window. Meat, veg, fruit, rice as the only grain. Now I dont even feel like eating any of the stuff which I thought I would miss a lot.

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Our son, now 16 was diagnosed at 20 months and his health improved dramatically almost immediately.

I would recommend to be good label and ingredient readers, as he will inevitably want to eat some processed foods.

Lots of processed foods that aren't labelled as gluten free are actually gluten free by ingredients(one tip to know is that glucose syrup derived from wheat is actually considered gluten free). Sometimes the gluten free label automatically means an expensive price.

Our family is largely gluten free in most meals, however we still eat normal bread whilst our son has his own gluten free. It works OK. We try not to flaunt that we are eating stuff wtih Gluten but there are some beautiful pastries out there

If he craves a Big Mac we have asked Maccas to give us the Big Mac without the bun and put the insides in between two Corn Thins

Large fast food companies have ingredient lists online or hotlines you can call whilst other places have ingredient lists in store

Kids parties can be tricky so we used to send his own lollies, check ahead with the host. Most people were super accommodating with a bit of warning

Watch for ingredients like Soy Sauce, Mayonnaise, Wheat starch in lollies, cornflour that has wheat flour in it, icing sugar, malt extract that contain wheat. There are alternative brands that are gluten free but people who cook for you (friends, grandparents) may not realise that these are sources of gluten.

Join the Coeliac Society at least for a short time. They have some great information and contacts that will get you feeling confident.

If you are still eating gluten products take care with cross contamination eg have designated slots on the toaster for gluten free, use fresh knives, chopping boards, cook gluten free meats on the BBQ separately to the others

Pray that your son enjoys rice! (although gluten free pasta is quite good)

We have found that it is increasingly easy to be gluten free as awareness grows but travelling and eating out is where you need to be most careful and prepared. if the waiters or owners of food outlets seem vague about gluten free stuff or ingredients we are really conservative on the food choices or go elsewhere.

Finally, despite the hassles of it all, it is a condition that is really easy to manage and the benefits to your son's health should be amazing.

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My wife was diagnosed about 7ish years ago. She was a lover of bread products and it nearly killed her ;). Around then in our town there were very few replacement options, even the supermarkets didn't have much. We ended up finding one bakery that made a pretty good gf bread, at least compared to others. Anyway, she was retested t 3 months confirming she was coeliac. We ended up buying a bread maker and making her own which was much better. She was retested after 12 months and they found she in fact wasn't coeliac. One of the worst years of her life ;), until she really got sick anyway.

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I havent found eliminating gluten to be that difficult to be honest. Once my mind set changed and I realized wheat and dairy is causing me harm - it was much easier to avoid. If I do have an occasional bite - a painful night with no to restless sleep puts me firmly back on track.

 

Meals have to cooked at home - all processed stuff goes out of window. Meat, veg, fruit, rice as the only grain. Now I dont even feel like eating any of the stuff which I thought I would miss a lot.

 

Interesting as these are my findings pretty much as well, and you solved something I had recently. I'm almost 8 weeks now without dairy and wheat, I had a few nights of bad sleep recently and couldn't figure out why, it wasn't work which is usually a trigger, however I did lapse with eating some crumbed fillets my wife prepared on those days using normal bread crumbs

 

I also found that there are some very good products to have, blue organic corn chips are my current addiction with a bit of hommus or salsa, I also found wheat and dairy free cookies that taste great, however I'm avoiding them as they are high in sugar until I drop a few more kgs

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I was diagnosed 1.5 years ago, i thought it was going to be pretty tough but the transition to it was pretty good. I am constantly learning what works for me. Early on i was buying stuff from supermarkets that were labelled gf but soon realised that all of these packaged "foods" were no good. My body was still inflamed and was still not feeling that good.

I removed processed foods and stuck to fresh veg/meat/fruit.

Personal advice id say try and steer away from packaged foods, its all rubbish, sometimes it takes a little longer to make your own foods but will make your son/wife/yourself feel heaps better.

I only have difficulty finding things to eat when i go out or away. I usually prepare meals if i know this is going to be an issue.

If it's not a rude question, would you be prepared to describe inflamed?
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If it's not a rude question, would you be prepared to describe inflamed?

 

Nah not a problem, I am 30 yrs old and have had a few major knee operations from sporting injuries when i was younger.

I could never run more than a couple of kms without my knee swelling up and becoming inflamed.I use to presume that this was due to my previous injuries. I would have to ice and not do any strenuous activity the next day or two . When i was diagnosed with Coeliac disease i cut out gluten but still had processed foods, after a while i was still lethargic and body didnt feel right, i was styill having to do a lot of recovery with my joints, especially the knee. Then i stopped all processed foods and just ate fresh veg/fruit and meats, made all my meals.

Call it a coincidence but since then i haven't had any problems with my joints since then. I have gone from running 3kms and icing for hours to avging 50 odd kms a week and not having one problem with me knee since.

My whole body feels 100% now.

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Our youngest was diagnosed with multiple food intolerances including gluten, meat , dairy and a very long list if foods.

 

We bought a thermamix and my wife became very good a baking GF stuff. My kids take their own stuff to parties and most parents have been very understanding. We never eat out as a family.

 

I , as it turned out, am also gluten intolerant. They said she gets it from one of us! I am Probably coecliac if tested but I went with the Drs advice and cut out gluten as a trial and my life literally changed I have used reflux meds for 10 years and had migraines 2-3 times a week since I can remember. 8 weeks off gluten no reflux and no headaches.

 

It's very easy to bd gluten free nowadays but be carefull with GF processed foods are just as bad as others. Full of rubbish without gluten.

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  • 5 years later...

Just reviving an old thread, due to an out of the blue diagnosis of coeliac disease. I'm still gathering info, but I don't personally know anyone that has it to ask them some more practical questions.

One question I have is how pedantic/careful people are (or have to be) regarding cross contamination. The position of Coeliac association, my dietitian, various blogs, etc make it sound as though even the slightest exposure is catastrophic. I was diagnosed by biopsy, but haven't actually had any adverse, acute symptoms at any point. I understand people avoiding even small exposure if they experience bad symptoms. That's not me, but I also don't want to jeopardise any intestinal healing.

Thanks.

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One of my daughter's friends parents has it.  She said she loves twisties, and will eat one, but will pay for it the next day.  My wife was pretty careful when she was misdiagnosed with it.  We did get the impression back then that there were people who treated it as seriously as cancer, and others who would do whatever they could to get away with as much as they can.  I think it's a "feeling out" what works for you, and what discomfort you're willing to accept.

Are you going through a testing period?  When my wife was diagnosed she had to change her diet and then was retested after I think 3 months.  I'd consider being pretty strict during that time.  That's when they said she definitely had it.  After a year they checked again and said she actually didn't.

Edited by goughy
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My sister-in-law has it. She's also lactose intolerant, so has issues with a lot of foods. She seems to be able to bend the rules now & then and get away with minimal problems. I think it may depend on how it affects you personally, eg everyone is different.

I had a hiatus hernia and an ulcer at one stage. Even the slightest bit of fat would give me gastric reflux and make me regurgitate anything in my stomach. I would still eat half a square of chocolate now and then, knowing what it would do, just because I missed the taste so much.

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10 minutes ago, goughy said:

One of my daughter's friends parents has it.  She said she loves twisties, and will eat one, but will pay for it the next day.  My wife was pretty careful when she was misdiagnosed with it.  We did get the impression back then that there were people who treated it as seriously as cancer, and others who would do whatever they could to get away with as much as they can.  I think it's a "feeling out" what works for you, and what discomfort you're willing to accept.

Are you going through a testing period?  When my wife was diagnosed she had to change her diet and then was retested after I think 3 months.  I'd consider being pretty strict during that time.  That's when they said she definitely had it.  After a year they checked again and said she actually didn't.

Mine was picked up somewhat inadvertently in an endoscopy, with biopsy showing atrophied villi. I've subsequently had blood tests to establish some baseline figures to check improvement against in the future. So, no testing to confirm diagnosis, as such.

Apart from low iron (which led to the endoscopy), I haven't had any real symptoms despite my heavily gluten-centric eating habits. In hindsight, I had some fatigue and the occasional bloated feeling, but nothing bad or anything that couldn't be attributed to some other cause. Certainly nothing like symptoms that some people describe.

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16 minutes ago, Ex-Hasbeen said:

My sister-in-law has it. She's also lactose intolerant, so has issues with a lot of foods. She seems to be able to bend the rules now & then and get away with minimal problems. I think it may depend on how it affects you personally, eg everyone is different.

That's encouraging. I haven't had any issues with any food, which is good. Strangely one of my concerns is that after following a GF diet for a while, I might actually start to get some of the more obvious reactions if I have any gluten.

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10 hours ago, Ex-Hasbeen said:

I would still eat half a square of chocolate now and then, knowing what it would do, just because I missed the taste so much.

Hence the avatar - "Don't make me run, I'm too full of chocolate" 🤣

I got tested for that and lactose intolerance a few weeks ago after having some gastric issues. Negative for both. But I still have issues with milk, whey protein and ice cream, so I use vegan alternatives.

Scottys sister is a coeliac, if they come over I usually clean the kitchen down between anything with gluten and what they eat. I've also made adjustments to some recipes (cheesecake) to use gluten free biscuts as a base. We try to serve as much GF as possible while they are here, it's just easier, and the choices are better now and nowhere near as expensive as they used to be.

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I was diagnosed as a toddler ~40 years ago. Was hard for my mum back then as Gluten free food wasn’t really a thing, especially in Tasmania. When I started eating solids, I was fed weetbix, Toast etc and ended up with severe malnutrition etc. I was in hospital in Tassie for a bit... where they were also feeding me food with gluten..... they couldn’t work out what was wrong. I spent 6 months in the Royal Children’s Hospital in Melbourne until I was diagnosed. 

 

As a kid, anything I ate with Gluten in it resulted in severe vomiting and diarrhoea. I still have memories of this. My mum pretty much baked everything ... kids birthday parties were prob where most of the mishaps occurred. 
 

As I got older, this reaction of vomiting etc disappeared and turned into dermatitis ... in my scalp.. face... ears.

 

Up until high school, I went home for lunch everyday from school so mum could oversee what I was eating. You couldn’t buy Gluten Free Bread in the 80s. 


I generally eat well but if I’m out with people or at peoples house for dinner I will eat what there is and then put up with days of tiredness and bloating.

 

There are so many options now with food, alcohol etc that it’s certainly a lot easier to live with.  
 

Edited by beginnergirl
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@beginnergirl, wow, that is a tough and traumatic way to find out you have the condition. There definitely seems to be a lot more food options/alternatives around now, than what there would have been years ago, so I'm grateful for that. 

@KieranRdoes your son have bad reactions if there is some cross contamination in his food, or is your vigilance as a precaution? As a parent, I would find managing a condition like this for my son very stressful, so well done to you.

The more I read I feel as though I'm getting off lightly, given my lack of any outward, obvious symptoms.

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On 11/09/2020 at 9:07 PM, bRace said:

 

@KieranRdoes your son have bad reactions if there is some cross contamination in his food, or is your vigilance as a precaution? As a parent, I would find managing a condition like this for my son very stressful, so well done to you.

 

Severe vomiting within 30 minutes generally. Followed by bloating.

i can confidently say we have never glutened him at home.  However it has happened when out on one or two occasions.  It can be stressful, and difficult, we live in Karratha so options for dining out for him are scarce which is a bummer so we don’t eat out much.  However when we go to Perth he loves it because gluten free options are everywhere.  We are members of coeliac Australia which is bloody awesome.

the education of the hospitality staff in Australia about coeliac disease is poor in our opinion.  I have had soo many arguments with restaurant managers etc who claim gluten-free but they are so poorly trained about cross contimination that they really have no idea.

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@KieranR I know the pain, when we catch up with family we prefer to eat out, understanding of what it is can be limited in normal establishments, and sometimes I think we almost have to book the vegetarian/vegan joint to get what we need, which no-one wants.

For those in Sydney - Restaurant 317 in Parramatta has piles of gluten free options and according to the future sister in law, also has separate areas for gluten free meal prep. We've all eaten there with no issues.

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