Thread: Gluten-free Board: Heaven / Ship of Fools.
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Posted by Meconopsis (# 18146) on
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Most of my family seem to need this, & the others scoff quite loudly. I am looking at it because my daughter has changed remarkably since on it, in a matter of ~6 months.
Does anyone here have anything to say on this topic? Thank you.
Posted by Karl: Liberal Backslider (# 76) on
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What symptoms do you have that you think are caused by gluten and have you seen a doctor, would be my view.
Posted by Meconopsis (# 18146) on
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Arthritis in my hands & maybe my feet.
However, it is thinking about Christmas & family get-togethers that causes me to ask for some feedback.
The members on the diet are mostly unbending about it, and our hostess think's it's a fad diet.
Now I am wondering I should try it to see if my arthritis decreases. It could get crippling if it progresses, cos it's in my hands.
Posted by Curiosity killed ... (# 11770) on
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Most people I know who are gluten-free are either diagnosed coeliacs or have the same symptoms. Said symptoms are usually to do with the gut: pain, bloating, inflamation and lack of absorption of food when eating gluten as the gut becomes so inflamed that it stops working properly.
I hadn't heard of arthritis symptoms being caused by gluten, although I note that there is a skin condition linked to coeliac disease.
Posted by Carex (# 9643) on
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That's the case a close family member: takes about 3 days for her stomach to settle back down after she eats something with gluten in it, depending on the quantity.
It certainly isn't a fad diet for her. We plan our meals so she at least has an alternative if some part of the meal has gluten. Usually it isn't a problem: rice, potatoes, polenta, or kasha instead of pasta is the only substitution needed for many meals. Breads are the biggest issue: many of the "gluten free" types are not particularly appetizing, so we often get rice crackers or injira (Ethiopian, made from teff flour) instead.
Posted by Gee D (# 13815) on
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quote:
Originally posted by Curiosity killed ...:
Most people I know who are gluten-free are either diagnosed coeliacs or have the same symptoms. Said symptoms are usually to do with the gut: pain, bloating, inflamation and lack of absorption of food when eating gluten as the gut becomes so inflamed that it stops working properly.
Many people now claim to need a gluten free diet or to proclaim how well they feel having made the change - newspaper articles are full of such claims and of course none is verifiable. OTOH, there are those who are coeliac and who genuinely need to be on a gluten free diet. Indeed for a couple of friends it is a matter of life or death. Even the small amount of gluten in a Host may well be fatal.
[ 23. December 2017, 01:53: Message edited by: Gee D ]
Posted by Golden Key (# 1468) on
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I'm sensitive to gluten.
That can be controversial, including on these boards, FYI. Some people think it's just a fad. (Of course, many people thought "Yuppie Flu" was just a fad for lazy whiners. When it was medically recognized as Chronic Fatigue Syndrome (CFS/CFIDS/ME), people kept the same attitude--never mind all kinds of medical recognition and research, and millions of sufferers. It wrecked my life, and has kept me mostly in bed for many years.)
So I have time for health problems that other people write off.
IANAD, but a couple of thoughts:
--Look up a site for people with gluten sensitivity, preferably one that takes a fairly calm attitude. (Rather than spending your time on their justified reactions to not being believed.)
--There may be something about rotation diets, which are pretty common for figuring out food allergies and sensitivities.
--Keep your first attempts/experiments simple, and don't pressure yourself.
Hope you find out something helpful. Good luck! ![[Smile]](smile.gif)
ETA: If your informal experiments seem to make a difference, talk to a doctor about getting a blood test for celiac disease. (There are related things like sprue, too.) I don't have true celiac (whew), but I do have sensitivity.
[ 23. December 2017, 07:03: Message edited by: Golden Key ]
Posted by Gee D (# 13815) on
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Yes, there are some like you who are sensitive to gluten without being the full-blown coeliacs. But I am very doubtful that all who report the benefits fall into either of these categories. A couple of years ago, they swore by the paleo diets and who knows what will pass their way a couple of years down the track.
Posted by BroJames (# 9636) on
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According to the (UK) NHS Choices website, about 1 in 100 people suffer from coeliac disease. But also, separately, some people suffer from wheat sensitivity/intolerance. For those with coeliac disease, apparently, as little as 20 parts per million can trigger a reaction. (NHS Choices is often my first go to for health questions because they are not trying to sell anything, or to campaign.)
Posted by Curiosity killed ... (# 11770) on
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There can be a link between CFS/ME and gluten intolerance - I read research on this a few years ago, when I was reading all that research regularly. But people who are gluten intolerant tend to need to cut it out totally and not eat any gluten at all to reduce their symptoms. (There is a lot of hidden gluten in foods.)
It is likely that the reason many people can find their health improves when they cut out gluten is that they cut out cakes, biscuits and pizza, pot noodles and pastries, all of which are likely to be laden with fat, salt and sugar. These days this is less likely because there are so many gluten free alternatives: we were checking the hot buffet options in Tesco's last night and there were at least five fatty, salty delights that were gluten free: stuffed coated jalapeno chillies, chicken wings, chicken madras balls, mushroom arancini balls, mozzarella sticks, sticky barbecue ribs, potato wrapped prawns. Several of them were still off the menu as containing dairy, nuts or shellfish, but these things are sent to try us, as my grandmother used to say.
Posted by Curiosity killed ... (# 11770) on
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One of the reasons that some of those with gluten intolerance may be undiagnosed coeliacs is the method of diagnosis. To be diagnosed as a coeliac, the sufferer has to have blood tests while eating wheat. If you've cut out wheat and gluten because it's so painful to eat it, then the thought of eating gluten for two weeks to have an official diagnosis is not attractive.
(I have gluten-free soy sauce at home, soy and dairy milk, gluten-free and ordinary bread, partly because the gluten and dairy free alternatives are more expensive.)
Posted by Boogie (# 13538) on
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I’m not coeliac but I do have some gluten intolerance. If I eat home made bread I’m fine, but bought bread makes me ill. I think it’s the way it is made - not allowed to rise for long enough.
My friend is coeliac and even a crumb of wheat makes her ill for a month. She has some lovely cake recipes, but struggles to get gluten free bread.
Posted by no prophet's flag is set so... (# 15560) on
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If wheat containing foods only create symptoms sometimes it isn't gluten that is the concern. It has to be something else within the food. There is no difference in the substances labelled "gluten" in foods manfactured in a factory or in a home. Gluten is a term used to label a series of molecules, and isn't a thing in itself. You may be sensitive to something in a food or product but it isn't by definition Celiac nor gluten related. I have been lectured repeatedly by my botanist and Celiac child about this.
The problem with the concept of gluten sensitive (believe they are but still eat some grains which have it) is that in this country it creates dangers for actual Celiac Disease people. Restaurants in particular will relax their procedues. Such as use a grill, pan, cutting board or fryer wrongly, and harm Celiacs. Unfortunately this creates the need to quiz wait staff, inspect kitchens, if not phoning in advance and having lengthy talks with owners and managers. With anxiety or a need to leave.
The UK is more advanced and rigorous about these isues. Canadians buy their food on their own, unlike UK prescription foods for Celiacs. There's only a cumbersome income tax credit if you save every bill and calculate the difference between conventional foods for each item.
Posted by Josephine (# 3899) on
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I am on an anti-inflammatory diet, because I have the aches and pains that come with getting older and a bit arthritic, but I can't take anti-inflammatory medications. The anti-inflammatory diet excludes dairy, wheat, and refined carbs. I really wasn't expecting the diet to make much difference, but I have much, much less pain when I follow the diet strictly. To avoid wheat, it's easiest to say "gluten-free" because if you're gluten-free, you will be wheat-free, even though the reverse isn't true.
Posted by Meconopsis (# 18146) on
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Thank you for all replies, & for the good wishes. I will check out the NHS link, as you say they are not selling anything.
Posted by Golden Key (# 1468) on
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Gee D--
quote:
Originally posted by Gee D:
Yes, there are some like you who are sensitive to gluten without being the full-blown coeliacs. But I am very doubtful that all who report the benefits fall into either of these categories. A couple of years ago, they swore by the paleo diets and who knows what will pass their way a couple of years down the track.
Thanks. A couple things:
--I haven't said anything about everyone who's trying gluten free. Just that gluten sensitivity is real, even if you don't have celiac.
--I spoke up because of previous Ship convos and threads. They tend to default to "gluten-free is just a fad, gluten sensitivity is bunk, and only true celiacs have a problem".
You mentioned celiac and the Host wafer. Years ago, there was a rather heated discussion in Ecclesiantics about gluten-free communion wafers. Lots of heat, not much light.
--Sure, there are fad diets. When I was growing up, they were generally for weight loss. One was basically low/no carb; and you ate ground beef patties, grapefruit, and lots of cottage cheese. For some people, that diet was neutral. Might have been dangerous for others. IIRC, it did help some people lose weight, if only because they mostly dropped wheat/carbs. (For many people, that's a fairly quick way to lose weight--but the weight comes back, if they start eating bread again.) Might also have helped people who needed more protein.
Sometimes, fad diets help because of the biochemical individuality of a particular person. Many people have undiagnosed nutritional needs, and they may stumble across just what they need. I don't know much about Paleo, but it may be very helpful for some people. If there's a problem, it may well be with people who push it in order to get rich.
--I've heard that there's a lot of gluten sensitivity in Italy. Presumably because of all that yummy pasta and bread.
Posted by lilBuddha (# 14333) on
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Gluten sensitivity is real and it is a fad.
Many people who claim sensitivity do not truly know as they did not determine this with proper methodology.
[ 24. December 2017, 01:49: Message edited by: lilBuddha ]
Posted by Gee D (# 13815) on
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quote:
Originally posted by Golden Key:
You mentioned celiac and the Host wafer. Years ago, there was a rather heated discussion in Ecclesiantics about gluten-free communion wafers. Lots of heat, not much light.
I well remember that debate. We have a protocol for the gluten free wafers - the priest gives the paten with the hosts to the communicant rather than touch and hand the wafer, with the risk of contamination. The wafers are not absolutely 100% gluten free but none available here are. The tiny amount that may be there is given to those needing to know and they can check suitability with their own doctor for expert advice. From memory, the maximum in the wafers is something like 0.025% but much better that each person gets the advice relevant to them. We have some who are at very real risk, and a few more who are able to have some gluten but who are much more able to tolerate it.
I have no problems with those who are in either group. They are at very real risk and it's a risk we can easily avoid. My case is with those for whom it is a fad, and in the next quarter will decide that they need to avoid lactose. Basically, they make life more difficult for those who can't tolerate these foods by trivialising a genuine health requirement.
Posted by Golden Key (# 1468) on
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Gee D--
I did wonder if you might have been in that discussion.
I just didn't want Mecanopsis to go through the same kind of heat.
Posted by Gee D (# 13815) on
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quote:
Originally posted by Boogie:
My friend is coeliac and even a crumb of wheat makes her ill for a month. She has some lovely cake recipes, but struggles to get gluten free bread.
A few in our congregation are coeliac and as intolerant as your friend. Even a small communion wafer could well prove fatal.
Tell your friend to investigate making her own gluten free bread. A trick is to use a blend of different flours as each has its own qualities.
Posted by Golden Key (# 1468) on
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Josephine--
FWIW, YMMV, IANAD: Some people use curry powder as an anti-inflammatory. Has turmeric, etc. Trader Joe's has a good version of their own, in with the spices.
I just sprinkle it over my food at most meals. (I had to teach myself to get used to it.) We have different health problems, I think. But I find it helps, and I really feel the difference if I miss a day.
Posted by wild haggis (# 15555) on
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Yes, there are a lot of food fads out there. It's interesting that many dietary "complaints" are only found in wealthy countries.
However, celiac conditions can be horrible. My friend who is a rheumatologist knew there was something wrong with him for years and was finally diagnosed as celiac in his early 60s!His diet has transformed his life and he now has much more energy,
There is also a lot of rubbish about arthritis out there and so called cures. If you want proper advice go onto "Arthritis Research UK"s site. They are trustworthy. You will get a lot of help there that is based on medical expertese.
There are over 200 different types of arthritis
my hospital rheumatology consultant told me (I don't talk about it to my friend, he is a friend not my doctor). I have an imflametory condition so have to take anti-imflamatories and pain killers, which I only take when really necessary - I don't want to be hooked. During flare-us I have been put onto methotrexate but that can muck with the liver and you need weekly blood tests to monitor it. For years I've had IBS and the rhumatologist said that it is possibly linked with the immflmatory arthritis.
I find if I eat too much wheat based products I bloat out and feel unwell. So I just control it myself and don't go onto faddy diets. Rye based cripsbreads help. I asked about turmeric, after I read about it in in a mag. My specialist told me that it won't do much good unless taken in very large quantities. Chillies do help, apparently.
They used to say that glaucosamin was the answer to wonky bones, but they have now discovered that it doesn't really do anything. Taking extra calsium past puberty won't work to improve bones either, said the rhumatologist, but it won't do any harm, except to your purse, unless taken in too large a dosage.
One of the best helps is the right kind of exercise. A good physio is a treasure. You need to know which muscles to exercise to support the joints and keep the core muscles in good nick to keep your stomach under control and your skeleton upright and mobile.
So whether it is IBS, coeliac or one of the many kinds of immflamatory arthritic conditions or wear and tear on the bones get the right kinds of exercise. Be careful because some forms of exercise can do more damage than good, always check with a physio (again "Arthritis Research" website is a good help).
I am no longer supposed to do my contemporary, ballet or Scottish country dancing but water aerobics are great because the water supports the joints and the exercises can be varied to suit if you have a good teacher who knows what they are doing.
A good normal well balanced diet, unless diagnosed otherwise by a doctor, is the way ahead. Fads are just that fads and they come and go, sometimes doing more harm than good.
If anyone got a skeleton in their cupboard - must be in good condition, female and 5' 3" - I'm interested!
Posted by Meconopsis (# 18146) on
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wild haggis, thanks very helpful
Posted by Karl: Liberal Backslider (# 76) on
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quote:
Originally posted by Gee D:
quote:
Originally posted by Golden Key:
You mentioned celiac and the Host wafer. Years ago, there was a rather heated discussion in Ecclesiantics about gluten-free communion wafers. Lots of heat, not much light.
I well remember that debate. We have a protocol for the gluten free wafers - the priest gives the paten with the hosts to the communicant rather than touch and hand the wafer, with the risk of contamination. The wafers are not absolutely 100% gluten free but none available here are. The tiny amount that may be there is given to those needing to know and they can check suitability with their own doctor for expert advice. From memory, the maximum in the wafers is something like 0.025% but much better that each person gets the advice relevant to them. We have some who are at very real risk, and a few more who are able to have some gluten but who are much more able to tolerate it.
I have no problems with those who are in either group. They are at very real risk and it's a risk we can easily avoid. My case is with those for whom it is a fad, and in the next quarter will decide that they need to avoid lactose. Basically, they make life more difficult for those who can't tolerate these foods by trivialising a genuine health requirement.
But on the other hand they increase the availability of foods free of the ingredient in question. So it's swings and roundabouts.
Posted by Kaplan Corday (# 16119) on
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My coeliac condition was discovered by accident about fifteen years ago when I was found to be anaemic during some checks prior to a routine hernia operation.
Since I only experienced occasional bloating, I was inclined not to bother with the gluten-free diet, but was advised that this would increase my chances of contracting bowel cancer.
The other reason for my disinclination was that I had always assumed that food allergies (except for things like nut-induced anaphylaxis) were nothing but attention-seeking hypochondria, and didn't want to look precious when people offered me things I couldn't eat.
This can be a genuine problem - we had to reluctantly forego attending an Eid meal with Muslim friends because we would have caused even greater offence by refusing just about everything they offered us (their English is very poor, and it would have been difficult to explain).
Nowadays ingredient lists on food are universal and comprehensive, but on the other hand gluten-free foods are almost invariably more expensive (justifiably or not).
And gluten-free beer, they tell me, is pretty bad.
I am commonly asked is "Are you gluten-free?", to which I reply, "That is a question of interest only to a cannibal. I am COELIAC".
Posted by Golden Key (# 1468) on
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np--
quote:
Originally posted by no prophet's flag is set so...:
The problem with the concept of gluten sensitive (believe they are but still eat some grains which have it) is that in this country it creates dangers for actual Celiac Disease people. Restaurants in particular will relax their procedures. Such as use a grill, pan, cutting board or fryer wrongly, and harm Celiacs. Unfortunately this creates the need to quiz wait staff, inspect kitchens, if not phoning in advance and having lengthy talks with owners and managers. With anxiety or a need to leave.
IMHO, it only creates dangers if the restaurant doesn't take it seriously. If they have a celiac protocol in place and fail to use it, then they are failing and endangering their customers--and putting the restaurant in legal jeopardy, if anyone gets sick. It isn't for the restaurant staff to decide who truly has celiac or a gluten sensitivity, and who's just following a fad.
AIUI, the procedure you mentioned for checking out a restaurant has long been a standard for people with severe food allergies. (Fish, MSG, peanuts, whatever.) I've sometimes thought that, if I were to start a restaurant, I'd focus on allergy-friendly foods. It would be hard, because there are so many kinds of food/drink allergies and sensitivities. Something safe for one person could be deadly for someone else, and many people have multiple allergies. It might require several small kitchens. Even then, some people get sick even in the presence of their food allergen, so people at the same or a nearby table could be blissfully eating food that's safe for them, but be sensitive to even the presence of each other's food. (E.g., peanuts.)
Posted by Kitten (# 1179) on
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quote:
Originally posted by Kaplan Corday:
And gluten-free beer, they tell me, is pretty bad.
The Brewery for which I work does a range of organic, Gluten Free bottled beers which are quite popular and no more expensive than our other bottled ranges
Posted by Curiosity killed ... (# 11770) on
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wild haggis - you do know rye crispbreads contain gluten?
Grains containing gluten are barley, rye and wheat, which is why beer is off the menu, it's usually made from barley. Oats are not gluten free, unless special (expensive) gluten-free oats are sourced. Gluten containing foods include malt (barley), although whisky is gluten-free, and most soy sauces, which takes Chinese and Japanese foods off the menu. Gluten-free soy sauce is available.
We have a recipe book for baking without gluten, and the flour combinations include:
- tapioca and almond flour with xanthan gum (all purpose);
- brown rice, sorghum and tapioca flour (cake flour);
- soya, tapioca, potato and corn flours plus xanthan gum (bread flour)
Posted by Gee D (# 13815) on
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quote:
Originally posted by Kaplan Corday:
The other reason for my disinclination was that I had always assumed that food allergies (except for things like nut-induced anaphylaxis) were nothing but attention-seeking hypochondria, and didn't want to look precious when people offered me things I couldn't eat..
That's a variation on what I was saying above. The faddists are making life very difficult for those who have real risk in eating gluten. BTW, I'm not sure what the practical difference is between nut-induced anaphylaxis and the gluten intolerance of a coeliac. Each is a basic physical condition - and the same goes for all the other genuine allergies.
Posted by Curiosity killed ... (# 11770) on
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Golden Key - my daughter can't eat out in restaurants now as she's aero-allergic: she goes into anaphylactic shock, near nuts and shellfish, both crustacea and molluscs, so being in the room with them (or shoreline, or downwind on the same field) usually means a close encounter with an epipen, followed by a hospital visit. She can eat peanuts, coconut and chestnuts.
Posted by Kaplan Corday (# 16119) on
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quote:
Originally posted by Gee D:
BTW, I'm not sure what the practical difference is between nut-induced anaphylaxis and the gluten intolerance of a coeliac.
If I inadvertently eat some gluten, I might or might not experience a number of hours of inconvenient bloating.
If someone allergic to nuts eats some inadvertently, they might die.
Posted by Gee D (# 13815) on
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As might a coeliac who consumes a bit of gluten. I can't see any practical difference.
Posted by Curiosity killed ... (# 11770) on
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Someone I know locally was seriously ill, in and out of hospital and had to give up work before she was diagnosed as a coeliac. It is often not diagnosed, but is the underlying reason for quite serious illnesses.
Once the coeliac manages to avoid wheat, accidentally ingesting gluten may cause a gut bleed or major damage to the lining of the gut, which can cause long term damage to person. Anaemia suggests long term bleeding in the gut, which is not healthy, although it may not be obvious to the sufferer.
It's not quite the same as anaphylaxis, which for my daughter I regularly see the swelling of mouth, lips, airway, difficulty speaking and swallowing, severe asthma and an itchy rash across her face. We don't normally get much further down the list before the epipen comes out and/or she's removed from the source of problems, but apparently she can become unconscious if that doesn't happen.
Posted by Gee D (# 13815) on
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Rather than dealing with the exact method, I was trying to point out that gluten for a coeliac can be just as fatal as peanut butter etc for those who have anaphylactic reactions. Neither is trivial.
Posted by Curiosity killed ... (# 11770) on
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No, really, it's different. I cannot have shellfish or nuts in the flat, or even eat them when I am out and come in with any traces on me. I can have gluten containing products around so long as I am careful. I tend to prepare the gluten free options first, then mine so I do not cross-contaminate.
The effects of eating gluten for a coeliac are unlikely to be immediately fatal - they are more likely to be painful, uncomfortable and/or create unseen damage. In those cases gluten has a long term effect, which is why coeliac's disease is often undiagnosed for a long time and sufferers then have a poor prognosis: coeliacs have a higher rate of various forms of lymphoma and/or malnutrition.
Posted by Gee D (# 13815) on
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I agree with your first paragraph. That's why such a simple but nutritious meal as peanut butter sandwiches are banned at schools, and we read of people on aeroplanes becoming ill because a fellow passenger eats a packet of peanuts.
Not so sure about the second though. Our 2 or 3 most seriously affected coeliac parishioners would almost certainly die within a few days after consuming a normal communion wafer. We also ask those making gluten free foods for morning teas etc to make sure there's no cross-contamination and take similar steps for such events as parish dinners.
Posted by mousethief (# 953) on
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quote:
Originally posted by Gee D:
As might a coeliac who consumes a bit of gluten. I can't see any practical difference.
A coeliac is generally not going to stop breathing if they get glutened. If they do, something more than coeliac's is going on.
Posted by ThunderBunk (# 15579) on
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I'm one of the anomalies, but I do know what I need to do in order to stay healthy.
For most of my twenties, I had increasingly bad diarrhoea every day. Eventually, its original cause was established, but eliminating that did not end the symptoms, which were deeply unpleasant and debilitating.
Although I tested negative for coeliac disease in that my vili did not flatten in the presence of gluten, I found after an elimination diet that eliminating both gluten and dairy produce was necessary to keep my IBS under control without drugs.
Even a small amount of either can irritate my intestines, though there are times when it takes more or less dairy produce. The effects are unpredictable from occasion to occasion, but always at least uncomfortable,and often unpleasant.
Whatever this is, it isn't faddish. It's a way of avoiding unpleasant symptoms. As I am also extremely prone to allergies, I'm very wary of any kind of inflammatory response, for fear of the various auto-immune diseases. This is why I prefer dietary management to drug-based management, in that my IBS symptoms are themselves inflammatory responses.
I would emphatically deny this is faddish. And yes, even small amounts of gluten make a difference, as I discovered the first time I had communion in a gluten free form. The relief of returning from church without a stomach was wonderful, as was the breaking of the association between eucharist and discomfort.
I say this simply as a demonstration that it is possible to sit across the various boundaries proposed.
Posted by Gee D (# 13815) on
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quote:
Originally posted by mousethief:
quote:
Originally posted by Gee D:
As might a coeliac who consumes a bit of gluten. I can't see any practical difference.
A coeliac is generally not going to stop breathing if they get glutened. If they do, something more than coeliac's is going on.
As I've said, we have 3 coeliacs who simply can't consume gluten as it is likely to be as fatal as a bee sting or consuming peanuts can be for many. There are others who are gluten intolerant and Thunderbunk seems to fall into that category. For them, gluten consumption will result in stomach problems of varying degrees but rarely fatal.
Neither the coeliacs or intolerant are faddish. They have a genuine illness/restriction. The trouble is that many of those avoiding gluten are simply faddish and newspaper food writers and restaurants are presently catering for these. Next week it will be sauces stirred anti-clockwise. That detracts from the genuine problems many face.
Posted by Curiosity killed ... (# 11770) on
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Gee D - I would suggest that your parishioner may have wheat allergy, which also exists. Coeliac disease is not an allergy, it's an immune response, like rheumatoid arthritis. A slightly different reaction from the system.
[ 28. December 2017, 22:13: Message edited by: Curiosity killed ... ]
Posted by Kaplan Corday (# 16119) on
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quote:
Originally posted by Gee D:
As I've said, we have 3 coeliacs who simply can't consume gluten as it is likely to be as fatal as a bee sting or consuming peanuts can be for many.
I find that very hard to believe.
As a coeliac, I have been warned about the long-term dangers of gluten consumption (ie cancer) but I have never come across the sort of short-term and probably fatal danger which you are describing.
Posted by mousethief (# 953) on
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I'd suggest that you, or they, are using "coeliac" wrong.
Posted by Gee D (# 13815) on
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quote:
Originally posted by Curiosity killed ...:
Gee D - I would suggest that your parishioner may have wheat allergy, which also exists. Coeliac disease is not an allergy, it's an immune response, like rheumatoid arthritis. A slightly different reaction from the system.
They describe themselves aa coeliacs, presumably as diagnosed. Gluten-free only for them. Others say that they are gluten-intolerant. They avoid the ordinary wafers but if necessary will take half one.
In each instance, I can only go on what they say.
Posted by mousethief (# 953) on
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Well, no, you can also go on the scientific definitions of the terms.
Posted by Gee D (# 13815) on
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quote:
Originally posted by mousethief:
Well, no, you can also go on the scientific definitions of the terms.
No, because I'm not a doctor, I don't know their symptoms, their test results, their history, a whole range of matters that would give necessary guidance to the search.
Posted by no prophet's flag is set so... (# 15560) on
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quote:
Originally posted by Kaplan Corday:
quote:
Originally posted by Gee D:
As I've said, we have 3 coeliacs who simply can't consume gluten as it is likely to be as fatal as a bee sting or consuming peanuts can be for many.
I find that very hard to believe.
As a coeliac, I have been warned about the long-term dangers of gluten consumption (ie cancer) but I have never come across the sort of short-term and probably fatal danger which you are describing.
There are at least 3 antibody tests for gliadins, which are the symptom causing agents for Celiac. Most test for some of, not all. The symptoms experienced with exposure thus vary. There are probably other molecules involved which aren't tested for - yet - not yet known. Though fatality isn't something I've heard of.
Posted by lilBuddha (# 14333) on
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I can find nothing, even on dedicated sites, that suggests coeliac‘s disease has the type of fatality that allergic reactions can cause. The risk of death is from secondary causes, such as cancer and heart disease.
In short: coeliac‘s can chase something that will eventually kill you whilst an allergic reaction can kill you today.
Neither is good, but they are not the same thing.
Posted by lily pad (# 11456) on
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quote:
Originally posted by Gee D:
quote:
Originally posted by mousethief:
quote:
Originally posted by Gee D:
As might a coeliac who consumes a bit of gluten. I can't see any practical difference.
A coeliac is generally not going to stop breathing if they get glutened. If they do, something more than coeliac's is going on.
As I've said, we have 3 coeliacs who simply can't consume gluten as it is likely to be as fatal as a bee sting or consuming peanuts can be for many. .....
It will make them extremely sick, yes, but immediately fatal like anaphylaxis? I don't think so.
In a former congregation, I knew of three people who absolutely could not consume even a crumb of gluten without a severe response. None would ever take the risk.
I suspect that they would describe their coeliac disease in the same way that someone allergic to peanuts would because the repercussions were so severe. Sometimes this is the only way that people will take things seriously.
I carry epi-pens for allergies that are airborne and I can't tell you how often my reluctance to expose myself to life-threatening situations is minimized by others. It means that I live an extremely strict lifestyle and the boundaries are absolute. It is impossible to trust anyone else to control the environment to the degree that I require so basically, I don't try.
I suspect that the people you know are doing the same. They know that an exposure will make life miserable and that it isn't worth the risk.
Posted by Gee D (# 13815) on
:
I can only pass on what the people in question have advised us so that their needs can be addressed. I find it strange that those who have not carried out any examination or tests of these people can from 20,000 km away be so definite in reaching other conclusions.
Posted by Gee D (# 13815) on
:
And repeating that there are others for whom life will be "miserable" rather than potentially fatal if they have some gluten. Probably we should not worry too much about them as much else in life can be miserable, can't it.
None of this detracts at all from the needs of those who need to carry epipens.
Posted by lily pad (# 11456) on
:
quote:
Originally posted by Gee D:
I can only pass on what the people in question have advised us so that their needs can be addressed. I find it strange that those who have not carried out any examination or tests of these people can from 20,000 km away be so definite in reaching other conclusions.
Because we understand that coeliac disease is an autoimmune condition and that anaphylaxis is not a symptom of it? Coeliac and allergies are two different things. I am not questioning their needs - only your interpretation of them. Pretty much every person who has coeliac has eaten gluten for several years of their lives before the testing proves that they have this issue. Anyone with a wheat allergy gets hives and their throat closes off when they are first fed the offending food.
Ask the parishioners if they will die within minutes of an exposure. That's what I live with every day so I have a general idea of what the difference is.
Posted by lilBuddha (# 14333) on
:
quote:
Originally posted by Gee D:
I can only pass on what the people in question have advised us so that their needs can be addressed. I find it strange that those who have not carried out any examination or tests of these people can from 20,000 km away be so definite in reaching other conclusions.
From 20k km or your own keyboard, the answers are the same.
Posted by Jengie jon (# 273) on
:
Food related digestive difficulties are complex.
It looks as if I have lactose intolerance. I assume that is what the diagnosis was as the doctor did not tell my parents and that is what later behaviour indicates. Those who known me long enough have no doubt it is genuine. The removal of milk products from my diet has lowered my anxiety, cleared my skin and allowed me to sustain a healthy weight.
Like all intolerances it is unstable. Sometimes I can take more lactose than other times. As well as the obvious things containing lactase, like milk and cream, many other products also have it in such as most margarines, and many biscuits! The habit of manufacturers to add milk powder, whey, milk sugar etc to products has caught me out too often; I have been caught out with milk powder added to bread. Personally milk and chocolate is never a good idea for me. However, I do get away with hard cheese and low quantities of butter.
Now imagine trying to communicate that briefly. When out I either do not say but scan the menu very carefully and if I can't tell ask, or I say I am milk intolerant and do not eat anything with milk in it especially if catered for. There was a time when I used to search out the vegan option.
I can well see someone with gluten allergy saying that they are coeliacs. Just as an awful lot of people with intolerances say they are allergic to the substance they are intolerant of. It is a shorthand to get the food that they can eat safely.
It is troublesome as it confuses what people believe about food intolerances, allergies and coeliacs ability to eat food. So bad is this that some people with a gluten allergy may be saying they are coeliacs because they believe that is the correct name for gluten allergy.
Jengie
[ 29. December 2017, 21:12: Message edited by: Jengie jon ]
Posted by mousethief (# 953) on
:
quote:
Originally posted by Gee D:
I can only pass on what the people in question have advised us so that their needs can be addressed. I find it strange that those who have not carried out any examination or tests of these people can from 20,000 km away be so definite in reaching other conclusions.
Because I have not carried out any examinations or tests, I cannot say what these people have. Because I have read the literature, I can say that coeliac's disease does not cause anaphylaxis. Why do you insist on confusing these two things?
Posted by mousethief (# 953) on
:
quote:
Originally posted by lilBuddha:
quote:
Originally posted by Gee D:
I can only pass on what the people in question have advised us so that their needs can be addressed. I find it strange that those who have not carried out any examination or tests of these people can from 20,000 km away be so definite in reaching other conclusions.
From 20k km or your own keyboard, the answers are the same.
From the link:
quote:
Originally posted by coeliac.com:
Even though some folks suffering from symptoms of celiac disease will claim they would welcome death, no one will actually die from the immediate symptoms of celiac disease; no matter how bad those symptoms get.
Posted by Gee D (# 13815) on
:
quote:
Originally posted by mousethief:
quote:
Originally posted by Gee D:
I can only pass on what the people in question have advised us so that their needs can be addressed. I find it strange that those who have not carried out any examination or tests of these people can from 20,000 km away be so definite in reaching other conclusions.
Because I have not carried out any examinations or tests, I cannot say what these people have. Because I have read the literature, I can say that coeliac's disease does not cause anaphylaxis. Why do you insist on confusing these two things?
I make no confusions, but simply report what these people say. Unlike other posters, I make no claim to special knowledge simply on the basis of carrying out some quick searches. In other words, I leave medical diagnoses to those with expertise.
Posted by mousethief (# 953) on
:
quote:
Originally posted by Gee D:
quote:
Originally posted by mousethief:
quote:
Originally posted by Gee D:
I can only pass on what the people in question have advised us so that their needs can be addressed. I find it strange that those who have not carried out any examination or tests of these people can from 20,000 km away be so definite in reaching other conclusions.
Because I have not carried out any examinations or tests, I cannot say what these people have. Because I have read the literature, I can say that coeliac's disease does not cause anaphylaxis. Why do you insist on confusing these two things?
I make no confusions, but simply report what these people say. Unlike other posters, I make no claim to special knowledge simply on the basis of carrying out some quick searches. In other words, I leave medical diagnoses to those with expertise.
Nobody here is diagnosing. THAT is the confusion you are trapped in. I don't make "quick searches." I have a son with Coeliac's, and have done actual reading of material about it. One doesn't have to do diagnosis, or be a doctor, to know that Coeliac's dose not cause anaphylaxis. Period. Ever. Never. It Just Doesn't.
Posted by Gee D (# 13815) on
:
Nor have I said that it did. What I did say, and shall say yet again, is that for some of our parishioners, the consequence of eating gluten will be the same as for those allergic to eg peanuts - they will die. Not at all that eating gluten will cause an anaphylaxis.
Posted by lilBuddha (# 14333) on
:
quote:
Originally posted by Gee D:
Nor have I said that it did. What I did say, and shall say yet again, is that for some of our parishioners, the consequence of eating gluten will be the same as for those allergic to eg peanuts - they will die.
This may be what they told you, it is possible they believe it. Doesn’t make it true.
Coeliacs is a painful thing to experience, and it can cause other things that can kill you. But if a person is truly at risk of imminent death from eating gluten, something else is at play.
It is likely they say what they do to avoid severe discomfort because people do not understand the disease and underestimate or dismiss the pain.
[ 30. December 2017, 01:36: Message edited by: lilBuddha ]
Posted by lilBuddha (# 14333) on
:
BTW, the purpose of the Google links was not to say that a quick search is sufficient. But to show that advocacy groups do not show quick death as a factor. It would be reasonable to think they would were it a remote probability.
Posted by mousethief (# 953) on
:
quote:
Originally posted by Gee D:
Nor have I said that it did.
Well, yeah, you kinda did.
Posted by Gee D (# 13815) on
:
quote:
Originally posted by mousethief:
quote:
Originally posted by Gee D:
Nor have I said that it did.
Well, yeah, you kinda did.
I suppose that if you read it on a quiet summer Saturday afternoon, such as this is, with your eyes half closed and your mind out of action, it might vaguely give the interpretation you'd like it to.
As to libuddha, we are relying upon what we have been told and acting to minimise any risk. It would be wrong to do otherwise. It is certainly not for us to do some net research and form our own opinions on such a serious matter.
[ 30. December 2017, 04:32: Message edited by: Gee D ]
Posted by lilBuddha (# 14333) on
:
Neither mousethief or I are relying on “opinion” or suggesting that risk not be minimised.
Posted by Curiosity killed ... (# 11770) on
:
Gee D - my daughter has been gluten intolerant for 15 years to our knowledge. She has not been tested for coeliac's disease because to detect the antibodies in the blood a patient has to eat gluten for two weeks. When eating a scrap of hidden gluten can immobilise her and upset her stomach* for two weeks, the thought of eating gluten deliberately for two weeks is not attractive. I ensure that I have a mainly gluten-free kitchen when she is around, but still have wheat-based bread for me and ordinary oat cakes. (She also reacts to dairy, similar to Thunderbunk, which means I do not cook with milk, butter or cheese when she is home, but I can use ordinary milk for my tea and cereal.)
The difference between her problems with gluten and her allergic reactions to shellfish and nuts is stark. If she encounters either of these in her environment she has anaphylaxis which can be seen. Her lips swell up, she has a rash on her face, she struggles to swallow and speak. she has an asthma attack. I haven't seen her collapse as I usually remove her from the situation fast. When sharing student accommodation, after several emergency hospital visits she had to move to studio flats. She, or any friend she is with, has had to use one of the epipens she carries which also requires a hospital visit to ensure she is recovered. She has to wear a protective mask when outside or using public transport, which can give her time to move away. I cannot have any shellfish or nuts in the flat, nor eat them out, which is a pain, because I love them both.
Her gluten intolerance did not affect where she can go, what she can do, and how safe she is outside on her own. It does not mean she has to carry medications everywhere and wear wristbands so anyone finding her collapsed in the street knows to look for the medications. It did not mean she had to wear a mask or has to be alert to anyone eating near her on public transport, or abandon every concert half way through in the last three months (because people return from the interval eating nuts) or having to abandon a trip to the Inner Hebrides this summer.
* she has significant gut problems, for which she is having treatment, and is on medications to keep her guts working.
eta to remove failed link
[ 30. December 2017, 07:58: Message edited by: Curiosity killed ... ]
Posted by lily pad (# 11456) on
:
Completely agree with those who are saying that you are not catching on here, Gee D. We actually know quite a bit about both conditions. That happens often on the Ship - you know, that you meet people who are living out what you only know from what has been said.
Posted by Jengie jon (# 273) on
:
What I pointed out and hoped people would pick up is Gee D is saying that people are reporting that they have coeliacs disease and that a small amount could kill them. This could be true if
1) they are referring to long term effect of a small amount regularly given severe after effects i.e. being slightly economical with the truth.
or
2) they are using coeliac to cover for gluten allergy either because that is what they believe it is or because it is a short cut to explain them not eating anything containing gluten.
If the second it would be highly dangerous for Gee D to contradict it in his parish.
Jengie
Posted by Curiosity killed ... (# 11770) on
:
I got that Jengie, I even suggested that a wheat allergy may be causing some of the issues. What I and several others were objecting to was the equating of coeliac's disease with anaphylaxis, because anaphylaxis is so much more serious than coeliac's disease. That sort of comparison endangers those with anaphylaxis as much if not more than people choosing to eat gluten-free to lose weight endangers coeliacs.
Posted by lilBuddha (# 14333) on
:
quote:
Originally posted by Jengie jon:
If the second it would be highly dangerous for Gee D to contradict it in his parish.
I don’t think he should contradict it regardless and I don’t think anyone here is saying this. We are just correcting the misunderstanding that coeliacs is imminently fatal.
Posted by Gracious rebel (# 3523) on
:
Where has the rogue 'S' come from? The name of the disease is Coeliac Disease(or Celiac for US Spelling) not Coeliacs (or Coeliac's) disease. It's an adjective - from the Greek word for abdomen.
Posted by jedijudy (# 333) on
:
Thank you to those of you who are having a thoughtful conversation about celiac and gluten problems. Those of you who are getting a bit hot under the collar, please cool it.
Also, I appreciate all y'all who are sharing experiences and not giving out medical advice!
jedijudy
Heaven Host
Posted by mousethief (# 953) on
:
quote:
Originally posted by Gracious rebel:
Where has the rogue 'S' come from? The name of the disease is Coeliac Disease(or Celiac for US Spelling) not Coeliacs (or Coeliac's) disease. It's an adjective - from the Greek word for abdomen.
Sorry, I'm from Seattle, where every noun, or thing that looks like it might be a noun, gets an apostrophe+S added. So the grocery store Safeway becomes Safeway's, the department store JC Penney becomes Penney's, etc. Carried into the medical field you get Alzheimer's, Celiac's, and Asperger's.
Posted by Gee D (# 13815) on
:
quote:
Originally posted by lily pad:
Completely agree with those who are saying that you are not catching on here, Gee D. We actually know quite a bit about both conditions. That happens often on the Ship - you know, that you meet people who are living out what you only know from what has been said.
That is exactly right and Jengie Jon has picked that up. As I read lilBuddha, I should say to these people that they are wrong, someone on the other side of the world who has never examined them and who is not a doctor, has done some internet research - you should go back to your doctor an say that the advice you've been given is wrong.
And Curiosity Killed - please read what I said earlier to Mousethief. I know that coeliacs do not have the same reaction as someone suffering from anaphylaxis. And I have never said so.
Absolutely finally, nowhere have I made such a wide-sweeping statement as lilBuddha attributes to me. I am repeating what we have been told. No more, no less.
[ 30. December 2017, 18:16: Message edited by: Gee D ]
Posted by Kaplan Corday (# 16119) on
:
quote:
Originally posted by mousethief:
Carried into the medical field you get Alzheimer's, Celiac's, and Asperger's.
The difference is that there was a researcher named Alzheimer and a researcher named Asperger, so Alzheimer's and Asperger's are acceptable, but there was no Doctor Celiac/Coeliac.
Posted by mousethief (# 953) on
:
quote:
Originally posted by Kaplan Corday:
quote:
Originally posted by mousethief:
Carried into the medical field you get Alzheimer's, Celiac's, and Asperger's.
The difference is that there was a researcher named Alzheimer and a researcher named Asperger, so Alzheimer's and Asperger's are acceptable, but there was no Doctor Celiac/Coeliac.
It's not a matter of what's acceptable, of course, but of what people do. Dialect is like that.
Posted by Golden Key (# 1468) on
:
quote:
Originally posted by Jengie jon:
What I pointed out and hoped people would pick up is Gee D is saying that people are reporting that they have coeliacs disease and that a small amount could kill them. This could be true if
1) they are referring to long term effect of a small amount regularly given severe after effects i.e. being slightly economical with the truth.
or
2) they are using coeliac to cover for gluten allergy either because that is what they believe it is or because it is a short cut to explain them not eating anything containing gluten.
If the second it would be highly dangerous for Gee D to contradict it in his parish.
This.
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