Any Coeliac People Here?

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#3049565 13-Mar-2023 13:27

And then at the other end of the scale there's the trendy gluten-intolerants, of whom one that I know imports 30kg bags of gluten-free flour from Europe at I-can't-imagine-what-cost because the stuff you get here isn't cromulent enough. And everyone in a 2km radius of them has to be gluten-intolerant as well, which is really annoying because another member of their circle who used to do really good chocolate cake has had to make it gluten-free ever since.

robjg63

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#3049649 13-Mar-2023 16:14

cddt:

GF weetbix are a lifesaver.

Discover new potato-based recipes. And kumara etc.

GF pasta is hit and miss. The most "authentic" pasta experience is the rice pasta. The pulse pasta is ok and probably healthier but doesn't replicate the same pasta feeling.

GF Weetbix is pretty good and there are heaps of other GF breakfast cereals now that are all good. There was very little when I got diagnosed 12 or so years ago.

Disagree about the pasta though. The heavily rice based ones turn from hard to slush very easily and are best avoided.

The ones that have a heavy Maize/Corn component are the most similar to regular wheat pasta in appearance and texture.

Diamond/Barilla and San Remo are available nearly everywhere and are all good products - mostly made in Italy.

In fact I know an Italian lady (who knows I am Coeliac) and she said that she bought Barilla pasta one week and only noticed on the packet that it was GF after having cooked and eaten it. She said she wouldn't have noticed the difference. If it fools an Italian, its pretty good!!

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

Hammerer

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#3050233 15-Mar-2023 02:42

I generally can’t eat GF because common GF staples, such as tapioca/cassava/sago and pulses/lentils/chickpeas/beans, give me just as distressing problems. As a result, I have to use vitamin and mineral supplements to compensate for limited absorption. I eat a lot of fruit, verges and meat.

The following are issues/advice I haven’t seen in other posts:

If you have Coeliac disease then you will likely have vitamin and mineral deficiencies because the section of small intestine that is destroyed would normally absorb some important B vitamins, folic acid, etc.

You can use cromoglycates to reduce the impact of allergens on the digestive tract. I’ve never tried but know people who start dosing several days before eating out.

Thoroughbread is the best commercial GF bread in NZ - made by Rebecca Rolls (no pun).

tdgeek

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#3050238 15-Mar-2023 07:21

Hammerer:

I generally can’t eat GF because common GF staples, such as tapioca/cassava/sago and pulses/lentils/chickpeas/beans, give me just as distressing problems. As a result, I have to use vitamin and mineral supplements to compensate for limited absorption. I eat a lot of fruit, verges and meat.

The following are issues/advice I haven’t seen in other posts:

If you have Coeliac disease then you will likely have vitamin and mineral deficiencies because the section of small intestine that is destroyed would normally absorb some important B vitamins, folic acid, etc.

You can use cromoglycates to reduce the impact of allergens on the digestive tract. I’ve never tried but know people who start dosing several days before eating out.

Thoroughbread is the best commercial GF bread in NZ - made by Rebecca Rolls (no pun).

I'm not a Coeliac expert here, but due to my recent diagnosis I'm on a fast track learning phase

My comments:

If you eat a lot of fruit, veges and meats I would have felt that your nutritional needs would be met. Add in dairy as well I assume

The small intestine isn't destroyed, it is damaged, reducing nutritional intake, leading to weight loss and malnutrition. When you avoid Gluten, the small absorption fingers recover. From what I've read, 3 months to a year, maybe more, dependant on the level of damage and age

robjg63

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#3050247 15-Mar-2023 08:28

tdgeek:

If you eat a lot of fruit, veges and meats I would have felt that your nutritional needs would be met. Add in dairy as well I assume

The small intestine isn't destroyed, it is damaged, reducing nutritional intake, leading to weight loss and malnutrition. When you avoid Gluten, the small absorption fingers recover. From what I've read, 3 months to a year, maybe more, dependant on the level of damage and age

Yep. Spot on. The villi do regenerate over time.

That is why the strict GF diet is so important and why one accidental exposure feels like a bloody tragedy! The repair needs to start again from scratch.

If you have damaged villi your ability to absorb nutrients from any source (except intravenous) is greatly reduced anyway.

I did a little research on whether I should look at multivitamins, but various medical sites suggested that supplements can be quite dangerous and probably best taken only with medical guidance. Especially where some of the vitamins will build up and can cause damage over time. Other vitamins get excreted when there is an excess, so those ones self regulate. It is possible to do yourself harm with the off the shelf products we have on sale in NZ.

Wherever possible food seems a better source of nutrient than supplements.

@Hammerer is right on the starch aspect of diet though. I do find I never coped well with too much starchy stuff in my diet. It would have been wheat based before and is now obviously restricted to the range of GF starches he listed. You can still experience IBS symptoms on a GF diet if you go overboard on the starchy stuff. So if switching to a GF diet doesn't seem to fix the bloating/gas pain look at cutting back the starchy component. I think many non-coeliacs think going GF helps them with IBS symptoms when in fact it just forces them to cut back on the starches.

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

Bung

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#3050249 15-Mar-2023 08:43

robjg63:
Diamond/Barilla and San Remo are available nearly everywhere and are all good products - mostly made in Italy.

In fact I know an Italian lady (who knows I am Coeliac) and she said that she bought Barilla pasta one week and only noticed on the packet that it was GF after having cooked and eaten it. She said she wouldn't have noticed the difference. If it fools an Italian, its pretty good!!

I used some Barilla GF Penne last night. I was going to say that it was made by Barilla USA but our spare packet is made in Italy.
Even if Italians can't fault a pasta they'll argue about the meaning of "al dente" and it will never be as good as their grandmother made. It would be interesting to know which Italian companies supply NZ & AU brands like Diamond and San Remo.

My wife was diagnosed coeliac incidental to some other testing last year which came as quite a surprise. We'd had an Italian boarder/flatmate for years with the inevitable frequent pasta and pizza based diet. The specialist explained it as there was a wide spectrum of gluten tolerance. She certainly isn't as sensitive to "kiwi cafe gf" as some here have reported.

tdgeek

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#3050251 15-Mar-2023 08:56

Bung:

My wife was diagnosed coeliac incidental to some other testing last year which came as quite a surprise. We'd had an Italian boarder/flatmate for years with the inevitable frequent pasta and pizza based diet. The specialist explained it as there was a wide spectrum of gluten tolerance. She certainly isn't as sensitive to "kiwi cafe gf" as some here have reported.

I'm wondering the same for myself. My bloods came back within limits recently, and while I'm tired and lethargic, not too bad. Although I only got tested as my sister got it, and she went through a really bad time with it, absolute zero tolerance. Maybe for me its just early days, but a gastroscopy in the next week or so

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robjg63

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#3050307 15-Mar-2023 11:11

tdgeek:

Bung:

My wife was diagnosed coeliac incidental to some other testing last year which came as quite a surprise. We'd had an Italian boarder/flatmate for years with the inevitable frequent pasta and pizza based diet. The specialist explained it as there was a wide spectrum of gluten tolerance. She certainly isn't as sensitive to "kiwi cafe gf" as some here have reported.

I'm wondering the same for myself. My bloods came back within limits recently, and while I'm tired and lethargic, not too bad. Although I only got tested as my sister got it, and she went through a really bad time with it, absolute zero tolerance. Maybe for me its just early days, but a gastroscopy in the next week or so

Coeliac Disease affects people very differently. Some people have low B12 or Iron - Others will be fine. Sometimes its Calcium or other nutrients. Sometimes bloating, diarrhoea or constipation. Weight loss/Weight gain etc etc. Sometimes no obvious symptoms. That is why they used to say it took an average of 10 years to get diagnosed. People usually have varying issues on and off for ages and its not until things get worse that they may get tests done. Even when I got diagnosed, GPs were very reluctant to escalate you to specialist tests - Not so much now fortunately and that's why its more commonly diagnosed.

It's commonly said that an estimated 1 in 100 people actively have CD (only a fraction will get diagnosed though), in Canterbury it is estimated 1 in 80 - one of the highest rates in the world apparently. I grew up in Canterbury just for the record.

The only thing that specialists will tell you is that your gut villi will be getting attacked and damaged regardless of other symptoms you might be feeling with gluten exposure.

I didn't overall feel that bad when I got diagnosed. I had ongoing 'IBS' issues for ages. It would come and go.

I would get periods of severe gut bloating and pain from that. But then I could be fine other times.

I started getting lower and lower iron levels. They had never been great - but at the lower end of normal. But they finally dropped below 'normal' and my GP suggested I should have a Colonoscopy. I guess maybe he was worried I was bleeding. When I rang and booked (I paid), the gastroscopist ask why I was having this done and said you should have 'the top and tail'. ie Gastroscopy and Colonoscopy (both ends). I was lucky he suggested that as I woke up with a nice little photo of a damaged small intestine - later confirmed by tissue biopsy.

At that time they said Gastroscopy was called 'the gold standard' for diagnosis - I thought they do them less these days and relied more on coeliac antibody tests. I had one of those recently (normal GP checkup) and I wasn't showing any antibodies - so I must be looking after myself.

I am bound to have been accidentally exposed some time over the last 12 years, but I haven't had the 'throwing up' minutes after eating something or headaches/brain fog that many people will tell you 'always' happen after exposure. I have had the odd gut 'upset' and always wonder if it was gluten or just those random things that can sometimes cause gut issues.

But never let anyone tell you that 'a little bit of gluten is ok' - You have to be focused on life long zero gluten if diagnosed Coeliac I'm afraid.

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

tdgeek

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#3050310 15-Mar-2023 11:27

Thanks for that, mirrors by sisters thoughts, she works in health lab tests so is quite aware. And gets the worst side of gluten effects too. I'm already resigned to lifelong gluten.

Cheers

cddt

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#3052489 20-Mar-2023 19:56

Bung:

The specialist explained it as there was a wide spectrum of gluten tolerance. She certainly isn't as sensitive to "kiwi cafe gf" as some here have reported.

Yes indeed. I know someone else who has no physical symptoms after having gluten. I know another person (a child) who vomits 20 times within an hour or eating gluten. Personally it doesn't make me vomit, but it gives me crazy bad diarrhoea and gut cramps for a few hours. So it's generally not worth taking the risk... imagine how you would feel after 4 hours of straight diarrhoea, then you'll understand why I avoid "potentially cross-contaminated gluten free" food.

cddt

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#3052495 20-Mar-2023 20:06

Here's a summary of "future therapies" https://celiac.org/about-celiac-disease/future-therapies-for-celiac-disease/

Unfortunately several have been withdrawn at stage 2 or stage 3 recently as ineffective.

Kiwifruta

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#3052581 20-Mar-2023 22:25

robjg63:

cddt:

GF weetbix are a lifesaver.

Discover new potato-based recipes. And kumara etc.

GF pasta is hit and miss. The most "authentic" pasta experience is the rice pasta. The pulse pasta is ok and probably healthier but doesn't replicate the same pasta feeling.

GF Weetbix is pretty good and there are heaps of other GF breakfast cereals now that are all good. There was very little when I got diagnosed 12 or so years ago.

Disagree about the pasta though. The heavily rice based ones turn from hard to slush very easily and are best avoided.

The ones that have a heavy Maize/Corn component are the most similar to regular wheat pasta in appearance and texture.

Diamond/Barilla and San Remo are available nearly everywhere and are all good products - mostly made in Italy.

In fact I know an Italian lady (who knows I am Coeliac) and she said that she bought Barilla pasta one week and only noticed on the packet that it was GF after having cooked and eaten it. She said she wouldn't have noticed the difference. If it fools an Italian, its pretty good!!

I have to agree with you about San Remo, Barilla and Diamond GF spaghetti, they take longer to cook than regular spaghetti, but aren't inferior.

Kiwifruta

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#3052584 20-Mar-2023 22:40

robjg63:

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.

Thanks for sharing the hot cross bun recipe, looks pretty good.

I found Dr. Rodney Ford, a.k.a. Dr Gluten, TED Talk to be very insightful, covering off how symptoms of gluten intolerance/coeliac aren't soley in the gut. https://www.youtube.com/watch?v=J6JrHteOsII

tdgeek

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#3067914 25-Apr-2023 18:06

Im going for Gastroscopy and Colonoscopy Thursday. 9-15am. Sedation Im home at 1pm probably and wasted, or sedation free home at 10-30am and mowing lawns.

How bad is no sedation? They give throat numbing gargle. Is it horrendous or just uncomfortable but no real biggie? Gastroscopy-wise

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#3067985 25-Apr-2023 20:23

tdgeek:

Im going for Gastroscopy and Colonoscopy Thursday. 9-15am. Sedation Im home at 1pm probably and wasted, or sedation free home at 10-30am and mowing lawns.

How bad is no sedation? They give throat numbing gargle. Is it horrendous or just uncomfortable but no real biggie? Gastroscopy-wise

I had a gastroscopy in Japan 12 years back without sedation. They applied some numbing gel and a strange bondage-type mouthpiece so I couldn't bite down. It was deeply unpleasant, but not actually painful. It was all over pretty quickly.

I can't speak to colonoscopy without sedation though. Sounds like a PITA (sorry).

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