Any Coeliac People Here?

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tdgeek

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#303821 11-Mar-2023 18:59

My sis was diagnosed a few months ago, so next time I go to the doctor I will get tested, which was last week, positive for primary and secondary test. Endoscopy to be arranged. Ive read a bit about it and lengthy talk with the sis who was hit hard. While Im learning about gluten free there is a lot to learn. Chiefly about cross contamination and additives, and label reading.

I will end up being referred to a nutritionalist and I will join Coeliac NZ for at least one year, but keen to hear from anyone else with real life commentary

Cheers

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#3049030 11-Mar-2023 19:35

Neighbour has it. Depending on how serious it is, you need to look out for gluten in everything, for example if you get gluten-free pizza you can still be affected because the sauce they use may have gluten in it. If you're in a restaurant and ask for gluten-free mention you have coeliac rather than just saying you'd like something gluten-free, since it became trendy to be gluten-intolerant it gets taken less seriously but if you say you have coeliac they'll be careful about what they give you. Identify restaurants that will take care with what they give you and patronise those.

From the other side of things, once you start feeling the onset of effects you've got about 10-15 minutes to get to a toilet or a bucket. That's just to help plan ahead until you get used to watching out for what you're eating.

And again, the big thing is to look at everything twice to see where the gluten may be hiding. There's gluten in so many places you'd never think of.

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#3049032 11-Mar-2023 19:45

Yep, diagnosed around 12 years ago - I'm 59 now.

Ask away.

I had years of 'IBS' - though I still kinda get that and I am very vigilant with my diet - so I can't promise it totally 'cures' that. But it improved a lot.

It is serious - so don't let anyone say its not. It helps/doesn't help with the GF bandwagon - because we need strict GF - Not trendy GF (if you know what I mean).

Depending on your age - get a bone density test. They don't cost all that much. I fell down the stairs at our place about 1m and broke my heel (2 years ago). Hell of a way to find out you have osteoporosis - It seems years of not absorbing calcium well due to CD. I am on meds for that now - hopefully my bone density is improving - but wish I had known about that earlier.

It messes with your head in that you are really do need to be quite cynical about friends/family claiming they have GF food for you (and even trusting restaurants). Personally I don't eat out a lot and tend to stick to places that seem to have looked after me well. I shudder when someone say 'lets go out to XXX and have a meal' - It's a leap of faith every time....

With friends/family I always say show me the labels and tell me what you have done - Amazing how often they have missed that they added gluten accidentally. Usually safer to bring something from home that you know is ok.

Don't let people tell you oats are GF - They are to be avoided. Quite a chunk of coeliacs react to the proteins in oats apparently.

Its something like 20 parts per million is enough to trigger the auto immune reaction in your gut. So a couple of crumbs. Once triggered it damages your small intestine and it will take 6-12 months to repair apparently. Again - something to take seriously.

It effects different people in different ways - I will have been exposed over the last 12 years - but cant tell specifically. Some people get spectacular gut issues, headaches, 'brain fog'. etc etc. Some don't so much. Not sure if I can tell when I have been contaminated.

Best suggestion is make you whole household GF and eat/prep all meals GF. That's not that hard now to be honest.

My wife has her own toaster and keeps 'her' bread in the freezer, but she always takes marge/jam etc from a spoon and never double dips that into the marge/jam. So that's the only gluten we have in the house.

I have seen people chuck out pots/boards etc that might be contaminated. That's crazy. Just clean them well and keep gluten out of the house.

Sorry - could rave all day.

Let me know what you want to know.

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tdgeek

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#3049033 11-Mar-2023 19:47

neb: Neighbour has it. Depending on how serious it is, you need to look out for gluten in everything, for example if you get gluten-free pizza you can still be affected because the sauce they use may have gluten in it. If you're in a restaurant and ask for gluten-free mention you have coeliac rather than just saying you'd like something gluten-free, since it became trendy to be gluten-intolerant it gets taken less seriously but if you say you have coeliac they'll be careful about what they give you. Identify restaurants that will take care with what they give you and patronise those. From the other side of things, once you start feeling the onset of effects you've got about 10-15 minutes to get to a toilet or a bucket. That's just to help plan ahead until you get used to watching out for what you're eating. And again, the big thing is to look at everything twice to see where the gluten may be hiding. There's gluten in so many places you'd never think of.

Yes thats what Im seeing. My sis did it hard, not me as I got tested earlier due to her advice

1. Many foods are naturally gluten free

2. Many foods "should" be, but arent such as RICE bubbles and CORN flakes, many others, as you alluded to. many of these have malt syrup added, so its an additive issue.

3. NZ/AUS have the strictest food labels, thats helpful

4. Many gluten free substitutes are rubbish. My sis is a porridge girl, so oats are out, but gluten free porridge is poor, so beware of substitutes

I'm still on gluten so I will use it up, but keeping it simple, use whole natural gluten free foods, locate somehow, gluten free "XYZ" thats is ok or quite good, or substitute rather than search for a gluten free option. I.e. replace cereal with soft boiled eggs for breakfast as one example.

Gluten has taste and its a binder, hence why GF free bread is dense, not fluffy. And GF foods are often packed with sugar and salt to get some taste back.

Bit of a journey but there are MANY things that getting a positive is whole lot worse.

robjg63

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#3049035 11-Mar-2023 19:57

I have great recipe for GF hot cross buns. Even the grandkids think they are great.

Also have a good recipe for a focaccia bread recipe. Makes awesome sandwiches. Much nicer and cheaper than the shop bought breads etc. Good sandwiches are something you will miss.

Let me know if you bake or want to try them....

Nothing is impossible for the man who doesn't have to do it himself - A. H. Weiler

tdgeek

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#3049037 11-Mar-2023 20:15

robjg63:

Yep, diagnosed around 12 years ago - I'm 59 now.

Ask away.

I had years of 'IBS' - though I still kinda get that and I am very vigilant with my diet - so I can't promise it totally 'cures' that. But it improved a lot.

It is serious - so don't let anyone say its not. It helps/doesn't help with the GF bandwagon - because we need strict GF - Not trendy GF (if you know what I mean).

Depending on your age - get a bone density test. They don't cost all that much. I fell down the stairs at our place about 1m and broke my heel (2 years ago). Hell of a way to find out you have osteoporosis - It seems years of not absorbing calcium well due to CD. I am on meds for that now - hopefully my bone density is improving - but wish I had known about that earlier.

It messes with your head in that you are really do need to be quite cynical about friends/family claiming they have GF food for you (and even trusting restaurants). Personally I don't eat out a lot and tend to stick to places that seem to have looked after me well. I shudder when someone say 'lets go out to XXX and have a meal' - It's a leap of faith every time....

With friends/family I always say show me the labels and tell me what you have done - Amazing how often they have missed that they added gluten accidentally. Usually safer to bring something from home that you know is ok.

Don't let people tell you oats are GF - They are to be avoided. Quite a chunk of coeliacs react to the proteins in oats apparently.

Its something like 20 parts per million is enough to trigger the auto immune reaction in your gut. So a couple of crumbs. Once triggered it damages your small intestine and it will take 6-12 months to repair apparently. Again - something to take seriously.

It effects different people in different ways - I will have been exposed over the last 12 years - but cant tell specifically. Some people get spectacular gut issues, headaches, 'brain fog'. etc etc. Some don't so much. Not sure if I can tell when I have been contaminated.

Best suggestion is make you whole household GF and eat/prep all meals GF. That's not that hard now to be honest.

My wife has her own toaster and keeps 'her' bread in the freezer, but she always takes marge/jam etc from a spoon and never double dips that into the marge/jam. So that's the only gluten we have in the house.

I have seen people chuck out pots/boards etc that might be contaminated. That's crazy. Just clean them well and keep gluten out of the house.

Sorry - could rave all day.

Let me know what you want to know.

Rave on, its quite a learning curve. Additives seem the main issue

I really appreciate your post, mirrors my talk with sis a few nights ago, ala 1 hour and 44 minutes. Mates tell me dont worry about it mate plenty of GF free food these days. Yes there is, but it seems a generally poor/bland option. Also, cross contamination as you alluded to. Sis went to a restaurant, GF meal, crook for 4 days.

I have an endoscopy soon that will confirm the probably obvious. While I will try some GF options, Im feeling I will lean towards alternates, i.e. I dont like cabbage so will use cauliflower not "fake" cabbage, that type of stance.

If I can locate some "fake" GF options, even if its GF bread thats dense not fluffy but ok, I will lock into those.

Read some stuff about alternate flours the other day, for thickening. Quite a few options, but either you need to add more and/or add extra stuff, or avoid say almond flour as it doesn't thicken (IIRC)

I do see the GF bandwagon. Possibly taken as Gluten Intolerant, rather than the autoimmune disease it is. When your body starts attacking the small intestine, thats huge

Currently, my symptoms are bloating, gas, and feeling tired early avo onwards. The odd joint pain issue which I put down to I must have tweaked it (as I did pass off potential symptoms when my sis alerted me a few months back) I had two more blood tests yesterday oe of which was malnutrition, they all seem to be woth limits which is good. Mainly I feel as i got the first set last week doe to sis. In her case she had pain pains, lost weight (she is already skinny) so more advanced than my early warning.

I will take the glass half full approach. Its not curable but its manageable and the intestine will go back to normal. If Im forced to eat better, thats not a bad thing.

I will subscribe to Coeliac NZ soon for at least one year, and revisit my diet

Cheers again and thanks

tdgeek

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#3049039 11-Mar-2023 20:19

robjg63:

I have great recipe for GF hot cross buns. Even the grandkids think they are great.

Also have a good recipe for a focaccia bread recipe. Makes awesome sandwiches. Much nicer and cheaper than the shop bought breads etc. Good sandwiches are something you will miss.

Let me know if you bake or want to try them....

100% cheers

On toast, sandwiches. Told my mate that I will miss my salad sandwiches, so I will wear a bib and grab tissues (home made salad sandwiches with no bread its possibly a tad messy...)

I accept all this, many things can be worse. Do you make your on bread on a bread maker?

neb

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#3049042 11-Mar-2023 20:24

Where are you located? As @robjg63 pointed out finding good restaurants that take GF seriously can be Russian roulette, if you're on the North Shore then Blitza in Highbury are really good, they'll go and check with the chef and then come back with a list of what's going into whatever you've ordered so you can confirm it's OK, and will separate utensils and whatnot when preparing the meal. I've taken my neighbour there a number of times and never had any problems.

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#3049049 11-Mar-2023 20:32

I have friends that are gluten free for similar reasons. I've tried it now and then as a health experiment at home. Burgen do excellent gluten free bread available in every supermarket bread aisle. It's ok for sandwiches excellent as toast. A thin slice version would be good for sandwiches if it existed.

tdgeek

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#3049052 11-Mar-2023 20:39

neb: Where are you located? As @robjg63 pointed out finding good restaurants that take GF seriously can be Russian roulette, if you're on the North Shore then Blitza in Highbury are really good, they'll go and check with the chef and then come back with a list of what's going into whatever you've ordered so you can confirm it's OK, and will separate utensils and whatnot when preparing the meal. I've taken my neighbour there a number of times and never had any problems.

ChCh

My sister has been burnt at a restaurant. It can't be easy as there can be cross contamination of bowls and utensils (thats easy) they really need to have seperate GF cooking areas to be proper, and thats not easy I imagine. Space and cost wise. Without bagging eating places its perhaps the cool and trendy Gluten free trend vs your immune system attacking the small intestine that then struggles to gain nutrients and energy. Caveat Emptor I guess

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#3049073 11-Mar-2023 21:26

robjg63:

Yep, diagnosed around 12 years ago - I'm 59 now.

Ask away.

........big snip..........

Wow, thanks for filling us in.

I only had a vague idea about what was involved, and probably like many here, thought it was nothing more than "you get a bit of an upset tummy for a day or so after eating something with gluten." I feel pretty dumb to be honest.

No doubt the trendy gluten-intolerant movement has made life far more difficult for everyone having to deal with actual coeliac. The care that is needed to avoid even minute amounts of gluten seems intimidating.

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#3049082 11-Mar-2023 21:42

Gurezaemon: The care that is needed to avoid even minute amounts of gluten seems intimidating.

Like a lot of other things, it may seem scary up-front but it's mostly a case of learning the ropes. Not trying to downplay the seriousness but to point out to the OP that it's not a death sentence, it's just a case of getting the hang of it and knowing what, and what not, to do. As you pick up experience you get better and better at it, my neighbour gets caught maybe once a year or so but nothing more than that.

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#3049084 11-Mar-2023 21:49

tdgeek:
4. Many gluten free substitutes are rubbish. My sis is a porridge girl, so oats are out, but gluten free porridge is poor, so beware of substitutes

If she can handle the taste and texture of ProNutro she could try that, it consists of mealie meal (maize) and soy so gluten free. It's usually eaten cold though so the effect is a very finely-milled cold porridge, apparently you can heat it up but I've never tried that.

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#3049158 12-Mar-2023 09:37

Gurezaemon:

robjg63:

Yep, diagnosed around 12 years ago - I'm 59 now.

Ask away.

........big snip..........

Wow, thanks for filling us in.

I only had a vague idea about what was involved, and probably like many here, thought it was nothing more than "you get a bit of an upset tummy for a day or so after eating something with gluten." I feel pretty dumb to be honest.

Yep - Most people don't understand the implications and don't realise the chain that sets off and time frames that that tiny scrap of gluten will set off.

That gluten exposure pulls the trigger - Doesn't matter if you had a few crumbs or ate a loaf of bread. The reaction starts. I wish more people understood that 'a little bit wont hurt'. It doesnt work that way.

The immune system then goes crazy and attacks the surface of the small intestine (the surface that absorbs important nutrients).

Consumer mainly suffers 'gut issues'. Some people claim 'brain fog' etc. Makes some sense TBH - the immune system is having a meltdown...

It eventually settles down over time.

Damage to the villi in the small intestine usually recovers in around 6 months - apparently longer if you are 'older' (1-2 years).

Nothing is impossible for the man who doesn't have to do it himself - A. H. Weiler

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#3049209 12-Mar-2023 10:23

I tidied up my Gluten Free Focaccia recipe and added some notes to the front of the recipe.

I find it tastes good, has a nice soft texture and the crust on each side of the bread helps hold it together when you make and eat a sandwich.

It's also cheap and easy to make.

GF Focaccia Recipe

EDIT: Fix link

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robjg63

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#3049212 12-Mar-2023 10:36

Recipe for Gluten Free Hot Cross buns.

I bought one of these trays from Kmart for $10 (also use it for the GF Focaccia Bread above).

I found that laying out the 12 buns in this tray (4x3) (lined with baking paper) made a perfect looking 1 dozen buns.

EDIT: Recipe was taken from the Edmonds website - Can't recall if I changed much.

If you can weigh the empty mixing bowl, then weigh once all the ingredients are mixed, then divide the difference by 12 to get the size of each bun.

Digital scales are very handy as GF recipes need to be quite accurate to work well and make even sized buns.

Put a piece of oiled baking paper on the scales when weighing out each bun and oil your hands very well so you can form the buns.

I have a little bowl with a good glug of oil in it while I am working with the 'buns'. Keep dunking your hand/fingers back in to keep them oiled and stop the mix sticking.

Nothing is impossible for the man who doesn't have to do it himself - A. H. Weiler

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