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Source: (consider it) Thread: Gluten-free
lily pad
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# 11456

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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.

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lilBuddha
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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.

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Jengie jon

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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 ]

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mousethief

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# 953

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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?

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mousethief

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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.



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Gee D
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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.

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mousethief

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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.

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Gee D
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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.

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lilBuddha
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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 ]

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lilBuddha
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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.

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mousethief

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quote:
Originally posted by Gee D:
Nor have I said that it did.

Well, yeah, you kinda did.

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Gee D
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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 ]

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lilBuddha
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Neither mousethief or I are relying on “opinion” or suggesting that risk not be minimised.

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Curiosity killed ...

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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 ... ]

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lily pad
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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.

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Jengie jon

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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

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Curiosity killed ...

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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.

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lilBuddha
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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.

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Gracious rebel

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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.

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jedijudy

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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
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mousethief

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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.

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Gee D
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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 ]

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Kaplan Corday
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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.
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mousethief

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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.

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Golden Key
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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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