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ytt

new diagnosis, celiac at nearly 18

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ytt

DD has had terrible tummy issues for the last few years, I finally asked for a blood test for celiac - never thought to ask before as we have no family history. Her bloods came sky high so due to covid and no testing we went gluten free for 6 weeks and had a blood test that saw the results drop dramatically but still way high.

DD ate gluten for 6 weeks and had an endoscope. After the op the gastro said she had a lot of inflammation in her lower bowl. We have to wait for another week before we see gastro as she only visits here once a week and cancelled our appointment on Saturday. I was getting blood tests GP ordered and I asked if DD's gastro sent any results and he said yes, DD has celiac.

I'm blown away that someone at nearly 18 can get this diagnosis. Can celiac be brought on my medication reactions? DD is on a lot of psychiatric meds.

Anyway I'm pretty good with cross contamination and reading labels and cooking from scratch. Now we are in full blown celiac mode has anyone got any hot tips for a household with one celiac and not others? I know I need a new toaster just for her and when trailing I found it hard making sure I stirred the gluten free option with the gluten free spoon etc. Do people have colour coded spoons and chopping boards? What about food storage?  DD will have her own butter  for toast etc but I also need to make sure butter used in cooking isn't contaminated. 

I bake cakes etc and have done cakes for a friend who one crumb will put her in hospital so when I baked her cake I would close the kitchen, double wash anything I would use and only use new packets of everything like butter etc. This is possible for a one off but not an every day occurance.

Any help would be appreciated. I understand I need a letter from gastro to join the celiac society

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chicken_bits

My dad was 40 when he was diagnosed. His only obvious symptom was low iron.

No need to colour code spoons, chopping boards etc. Just make sure they're cleaned in between uses. Just as you would with raw meat.

Thankfully, there are plenty of GF options out there now and people are far more aware of it than they were 20 years ago.

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blimkybill

I am glad she has a diagnosis as this is a step in the path to better health.

In terms of age of diagnosis... it can be any time. My DDs partner is likely coeliac but won't eat gluten for definitive testing (blood test indicated likely) . He is super sensitive though now. He didn't start working it out till 24 ( after some years of symptoms), it was my DD who helped him figure it out. 

Anyway I actually wonder whether you would be better off going gluten free within the household. 

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ytt
5 minutes ago, blimkybill said:

I am glad she has a diagnosis as this is a step in the path to better health.

In terms of age of diagnosis... it can be any time. My DDs partner is likely coeliac but won't eat gluten for definitive testing (blood test indicated likely) . He is super sensitive though now. He didn't start working it out till 24 ( after some years of symptoms), it was my DD who helped him figure it out. 

Anyway I actually wonder whether you would be better off going gluten free within the household. 

Dh has had gastric symptoms since youth when he nearly died from salmonella. He has had endoscopies and  colonoscopies many times since we've been together and they have found nothing (though not sure he was tested for celiac). DS (nearly 21) has had some tummy issues all his life,  he has bad skin reactions and bad airborne allergies . He has a referral for blood test due to DD's issues but he refuses to get tested because  he said GF pasta tasted like sh*t - not that he has had it lol. He loves pasta and tonight I did gluten free and he liked it so once step closer for him to be tested. Gosh I wish someone brought this up 20 years ago :(

Dh is on a keto diet and for the first time his tummy issues have resolved (basically gluten free). Whilst he won't eat gluten to be tested he now thinks he may be celiac and is happy to go gluten free.

So I'm the only one with no issues with food and I'm happy to go gluten free at our house and sneak gluten in outside however going 100% gluten free in our house I can't guarantee. 

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ytt
18 minutes ago, chicken_bits said:

My dad was 40 when he was diagnosed. His only obvious symptom was low iron.

No need to colour code spoons, chopping boards etc. Just make sure they're cleaned in between uses. Just as you would with raw meat.

Thankfully, there are plenty of GF options out there now and people are far more aware of it than they were 20 years ago.

Low iron isn't an issue in our household as we have haemochromatosis which is a build up of iron. DH and I are carriers and DS is full blown, DD is a carrier. As carriers we have high but not super high iron.

I'm struggling with having multiple meals on the go and not using the same utensils. I only have a few spoons and wonder if it would be easier to colour code to stop me cross contaminating. After a lifetime of cooking some habits are hard to break  

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FeralZombieMum

This is hopefully good news! I am actually so happy it's come back positive - could be the reasons she's been struggling mentally. You've mentioned she has thyroid issues - have they ruled out these being an autoimmune disease too? Autoimmune diseases can cluster. Get that checked out.

Those with the gene can get coeliac disease at any point in their life.

In order to support your DD - I would make the household gluten free - aim to have no gluten options, until she's on the mend - just to ensure the temptation is removed for her, and she doesn't sneak in normal food.

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mylittlemen

You can be diagnosed coeliac at any age - the gene can “switch on” at any point. They don’t know what triggers it but there is some research to suggest it might be because of other medical events such as pregnancy or heavy antibiotic use it or something else. My son was 2 when he was diagnosed which is far more unusual we are told than being diagnosed when you are older. In his case, he had salmonella as a baby so maybe that was it but who knows. 
 

we have a mostly GF kitchen so he doesn’t feel like he is missing out on treats etc but he is only 8 now. We do have normal bread for the rest of us though. We have his own toaster and use toaster bags when we travel for him. We were told to get rid of all old wooden spoons and chopping boards and switch to plastic as you can clean it properly. You do need to watch out when you eat out. Something might be called GF but cooked in the same deep fryer as the schnitzels which means it is no longer safe for a coeliac. So you have to get used to asking a million questions!

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mylittlemen

Also, we do colour code to avoid slip ups and mistakes.   Having a BBQ mat or cooking the GF BBQ stuff in alfoil is a good idea too. You really do need to be strict to avoid cross contamination 

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Prancer is coming
Posted (edited)

Whilst is it overwhelming in the beginning, lots of positives come from diagnosis.  Hopefully she will start to feel better, and that feeling will motivate her to stay gluten free.

 

My DD is 13, was diagnosed at 7 and has had symptoms since being a toddler.  She was pretty sick with practically no iron when he finally got the diagnosis after a solid 6 months of doctors and tests.

 

We are not a gluten free household.  I have another child with food allergies and it is just too limiting to cut more stuff out of a limited diet.  We eat the same meals with variations, such as gf spaghetti sauce with a gluten and gluten free pasta, and meat and vegetables with a gluten meat like a schnitzel for us on the bottom shelf and a gf meat on the top shelf.  So not really that much more work.  We make sure we have lots of snack food for DD so she is not tempted with our stuff or feels like she is missing out.  And we know we can’t have malteasers in the house as they are too tempting for her!  I am generally keen to cut processed foods, but let that go a bit with the gf diet.

 

We did start different coloured utensils.  We don’t really bother anymore as we use a hot anti bacterial wash on the dishwasher.  We don’t use wooden utensils though, hard to get those clean.  Definitely get more utensils.  If in doubt when cooking, grab a clean one.  We have about 4 pairs of tongs!  We just take care when in the kitchen thst we don’t cook  with flour right next to where she is cooking or her food is.  She has her own toaster and needs her own spreads seperate to us.  Don’t beat yourself up at the start too, it is really easy to make mistakes and a learning process.

Edited by Prancer is coming
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Paddlepop

I was diagnosed when I was about 20. I'd had issues but put it all down to the lactose intolerance I'd developed at about 13 but when I was exhausted my GP ran a whole heap of blood tests. That showed up positive for coeliac. I haven't been confirmed by biopsy because back then (20 years ago) getting a biopsy done wasn't really a common part of the diagnostic procedure so my GP didn't see much point in having it done. When I had an endoscopy and colonoscopy done a few years I of course showed negative for CD because I've been strictly GF for 20 years and there was no way in hell I was going to eat gluten for 6 weeks for testing. I would have ended up in hospital with dehydration from diarrhoea. I'm incredibly sensitive to gluten now. The scopes were done to see if I had any other digestive issues contributing to my low iron and heartburn. 

I too would suggest that the household goes GF for shared meals. That way you only have one meal to make and won't have any cross contamination issues during meal prep. It's relatively easy to go GF these days. There's a lot of GF alternatives in the supermarket these days eg GF pasta, pizza bases, bread. If colour coding will work for you then do it. 

To keep the spreads GF perhaps have a dedicated spot or basket in the fridge for them, and label the basket. 

Have a family meeting about the new food rules. Everyone has to be on board and doing their part to look after the coeliac's health and minimise/eliminate cross contamination. My household is GF because we all react to gluten. When we stay with my parents my mum does the majority of the food prep for shared meals and she's super duper careful about keeping things GF. So far she hasn't glutened me. She and my dad will have their breakfast before us (we sleep later than them) and she'll wipe the bench down very carefully to get rid of every toast crumb so that we can safely prepare our food. 

Join some coeliac FB groups for support and ideas. I'll PM you the name of the one I joined. They are a wealth of information and are in the know about new GF products or can recommend safe cafes or fish and chips shops etc. 

Check the ingredients in your DD's medications. You'd be surprised at how many might contain gluten but increasingly they're GF. If one does have gluten then often there will be a generic that is GF. Use this website to look up the CMI (consumer medicine information) of each medicine:

 https://www.nps.org.au/medicine-finder

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Bono25

My friend was in her 20's when she was diagnosed. Only came because she was deferred for low iron when trying to give blood. He biggest issue was always eating out and trying to find gf food. She tended to end up with salads a lot. There's alot more options now, and aldi have a pretty good gf range, with specials as well

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DaLittleEd

We went to a gluten free kitchen when DD was diagnosed at 2. It was the only good option for us, as we figured there's a lot of exclusion in having Coeliacs (she can't have birthday cake etc), so we wanted home to be an inclusive, safe space for her. It seemed daunting at first, but within a couple of months we had adjusted to the new normal. We just had to switch to buying gf flour, pasta, bread and Weet-Bix.  Not much else to it (except the added expense).

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hunter4

my Mum was about 60 when she was diagnosed with coeliacs, she'd only really started getting symptoms a few years before and it was mainly rash/skin issues rather than digestive so yes - any time...Sorry I can't help with the kitchen issues but I did want to say that in my house - with kids that love baking I would go fully gluten free just in case - I've seen my kitchen cupboards and everything is covered in flour - no way could a coeliac live in my house at the moment.

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Tjljjw

My mum was diagnosed in her 60's and my friend in her 40's. My daughter (19) is currently getting tested as she keeps getting sick after eating gluten/wheat product but also soy and dairy now. (she already has nut allergies and a severe dust mite allergy) poor kid! :( She used to have an egg allergy that appeared at 8 but she has outgrown that one. So allergies can appear at any age. Not sure why. 

I am worried for my daughter if she also has the soy allergy as many gluten free products contain soy so she is going to be very limited. 

She recently had anaphylaxis and was taken to hospital in an ambulance so I wonder if that has sparked some sort of immune response in her body to see more foods as the enemy? 

My mum is on a really good Celiac group on Facebook too which has lots of good info about products.  

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ytt

Tj that would be so hard for your daughter :( My son has had severe allergies which he did immunotherapy for so now it's just normal allergies and he had an anaphylactic reaction to one does of the immunotherapy, thank goodness it happened in the doctor surgery. Normally we would have left but I was late picking him up. It was very scary to watch.

I believe DD's  mental health, stress, medications ect brought this on. We have lots of autoimmune issues in our family.

So far so good going gluten free at home. I've cleaned the kitchen up, all new storage, new toaster for DD. I've cleaned out the cutlery draws etc as they seemed to have crumbs in them (below where I prep food). DD has loved the food I've been cooking and is eating the healthiest she has for a while. I did a pasta bake tonight and DS loved it (DD not a huge fan as she doesn't like food touching). DS refuses to get tested even though he has/had tummy issues and rashes as he thinks GF pasta is sh*t. lol he was very surprised when I said dinner was GF tonight.

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FeralZombieMum
5 minutes ago, ytt said:

DD has loved the food I've been cooking and is eating the healthiest she has for a while.

That's great!

 

Hopefully your DS will change his mind about testing.

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tinselfoil hat

Hey YTT I know this is a bit different but my DD had just turned 3 when we cut gluten on advice of a doctor (we are waiting on a scope so unsure if she’s coeliac but it’s strongly suspected). DD was very fussy, barely ate and was very underweight/off the charts short and thin. After a week or so of gluten free she suddenly wanted to try ALL the foods. Her variety increased fourfold easily. 
 

I know things are different for your DD but I hope that feeling better will be one less barrier to a healthy relationship with food for her. 

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Not Escapin Xmas

I woke in the middle of the night and thought, I must tell @ytt that a rice cooker (we just have a $10 one from Kmart) is an absolute winner. We eat rice so much more often now that DD and I are both GF (both highly intolerant but not Coeliac).

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SplashingRainbows

Bribe your son with whatever it takes to get him tested. He needs to continue to eat gluten up until his scope or he may get a false negative (ie scope says he doesn’t have it yet he does, he just wasn’t eating gluten to show it).

I have celiac  - diagnosed mid 20s  - am sure I had it since at least teens  

I watched my MIL die of bowel cancer this year. Trust me, you do not want to go that way, which undetected CD can lead to. If bribes don’t work then scare the sh*t out of him. He really needs to suck it up and get tested. Your gastro should have insisted on it for all immediate family members  - both mine and my sons did. 

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ytt
5 hours ago, SplashingRainbows said:

Bribe your son with whatever it takes to get him tested. He needs to continue to eat gluten up until his scope or he may get a false negative (ie scope says he doesn’t have it yet he does, he just wasn’t eating gluten to show it).

I have celiac  - diagnosed mid 20s  - am sure I had it since at least teens  

I watched my MIL die of bowel cancer this year. Trust me, you do not want to go that way, which undetected CD can lead to. If bribes don’t work then scare the sh*t out of him. He really needs to suck it up and get tested. Your gastro should have insisted on it for all immediate family members  - both mine and my sons did. 

my son is nearly 21 so not bribable :(  we are seeing the gastro on Saturday so many questions (gp told me the results when getting results for other bloods done). If gastro says do the tests then I will march him up to the surgery to get his bloods done. I'm happy to go house gluten free as I love to bake and can bake from scratch but I need everyone to be on the same page

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ytt
Posted (edited)
6 hours ago, Not Escapin Xmas said:

I woke in the middle of the night and thought, I must tell @ytt that a rice cooker (we just have a $10 one from Kmart) is an absolute winner. We eat rice so much more often now that DD and I are both GF (both highly intolerant but not Coeliac).

we have a large rice cooker and I also have a mini one for single meals :) love them!

thank you xxx

Edited by ytt
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SplashingRainbows

Here is the information from the coeliac society about family screening. https://www.coeliac.org.au/family-screening/

The coeliac society website is well worth a good read - it is the best source of up to date scientific information about coeliac disease in Australia. 
 

Practically, in our house we have black sharpies and also some stickers labeled gluten free that are used to mark the GF butter, GF peanut butter etc. 

 

all family members are well trained on cross contamination - my youngest was 3 when her brother was diagnosed and she’s been able to understand since then. It was probably easier for her because she just learned that way. I think it’s harder for adults who have to change habits to be honest. 
 

We have lots of cooking utensils but they’re not colour coded. If that works for you though go for it. its a practical way of helping your brain create a new ‘auto pilot’ for safely cooking for the family. 
 

I only do one dinner here - so it is GF. Sometimes there will be variations with gluten for the 2 who can have it but only if it’s quick and easy. 
 

breakfast they get themselves and lunch I make separately for school. 

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SplashingRainbows

Also simple things like pasta sauces, tomato paste, mayonnaise etc are always purchased GF. We do not have gluten containing condiments lying around for someone to accidentally get the wrong one. 
 

some tomato paste’s are GF and some are not. Some spices I’ve purchased online I’ve had to chuck out as they contain wheat. So I’d do a really good clean out of the pantry and a good shop for your everyday basics GF and that will help a lot of you can safely reach for the sauce and know it is GF. 
 

it will take you hours though to read all the labels so don’t do it when you’re short on time. It does get easier to know what is ok and what is not. 

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ytt

Thank you everyone, we've had a good week on gluten free. I love cooking from scratch so it hasn't been so bad. DS who is anti GF hasn't even reaslied he has been eating gluten free lol, although I have bought him 'normal' bread.

DD is feeling so unwell in her gut today, I suppose it will take time to heal. At least she hasn't been having poop accidents !!! 

Just a thought, she has started on a new med and I haven't checked if it's GF!!! 

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Paddlepop

Definitely check the medication. Use the website I linked in my post earlier in the thread. DH was having to rush the toilet within half an hour of taking his Ritalin. We stupidly didn't think to check the ingredients and the GP put it down to the stimulating effects of it on the gut. He stopped taking it a few months ago (just on Dex instead) and the upset tummy disappeared. Went back on it recently. Instant upset stomach. Finally checked the ingredients and yep, gluten. The alternative medication, Ritalin LA, is GF but isn't subsidised on the PBS for adults diagnosed with ADHD in adulthood but the gluten containing short acting Ritalin is subsidised for adults diagnosed in adulthood. Now we've gone from paying about $6 (HCC) for a month of Ritalin to $45 for 2 weeks of Ritalin LA. Psychiatrist can't even write a script for the dose of Ritalin LA that DH actually needs but can write a script for his dose in the gluten version. Bloody stupid. 

Definitely check the ingredients and never ever believe a pharmacist who tells you that it's gluten free. Always insist on a print out of the CMI containing the ingredients or insist on seeing the packaging so you can see for yourself that it's labelled as gluten free by the manufacturer. I've encountered issues numerous times in pharmacies when checking for gluten and lactose. 

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