Allergy vs Intolerance

[andyswarbs]

I began to think about this subject in detail recently. In the end I've come down to I describe some food as an allergy when I want someone to understand the seriousness of whether that food should be on my plate in any shape or form and in any quantity, even trace amounts.

[Zest]

Hi Andy,

I think it's really important for foods to be labelled appropriately so that people who have allergies or intolerances can know if it's a food they can safely eat or not, and the same with restaurants - who should hopefully be knowledgeable about the source and content of their meals, and can provide a meal that meets a person's individual needs. But I can also appreciate how challenging it could be for people who have allergies and intolerances to negotiate these things, and I am sure that experiences vary regarding whether these hopes are realised.

Hope you're enjoying the weekend.

Zest

[Hidden]

Hi Andy,

I'm a coeliac so I have to avoid all gluten and I'm very sensitive to it so have to be extra careful. Because if I ingest gluten my immune system attacks my intestinal villi as if I had ingested a toxin which's like other people having food poisoning.

To me the consequences of having an intolerance is I never eat out as I do not risk food prepared in a mixed environment as tiny amounts make me ill. So I pay a price for staying healthy as I have a fear of food prepared by others and thats a handicap which many coeliac feel and some feel very isolated as most socialising revolves around eating and drinking and I don't drink alcohol either...

So as trendy as it may seem to some with film starts adopting a gluten free lifestyle there's a very real challenge for some coeliac.

This is just my input on living with a diagnosed intolerance.

[andyswarbs in reply to Hidden]

I am very aware of coeliac challenges since having one close friend who diagnosed herself and her son 30 years ago.

But we don't call it a coeliac allergy, do we? Instead this rises to being called a disease.

[Hidden in reply to andyswarbs]

So what are you allergic to Andy?

Now if you some facts on how trace amounts can harm us here's some facts. 1ppm is 1mg per Kg and in 1mg of food you can easily have 3.25 to the power of 18 molecules (which's 325 followed by 16 zeros) so even trace amounts can contain literally trillions and trillions of molecules.

[andyswarbs in reply to Hidden]

For myself I think that now I avoid all nightshade plants because of the reactions they cause in my body. That seems to be clear. Much as I don't like it I am finding that peanuts can be added to that list. I keep on testing and retesting cashews.

Dairy & egg are proven problems for me. Meat/fish I have not eaten for over 40 years and no intention of trying, so whether they cause reactions or not is moot.

I limit wheat intake to around once per week, finding that too much is not good for me. For example if I have a curry then two chapati are fine, but three becomes too much. Long gone are the days I would munch an indian meal with 4 or even 5 chapati!

[Hidden in reply to andyswarbs]

Are you sure if it's not a medication side effect? Nuts are usually Well known sources of allergy due to molecular mimicry. I do get to read not all nightshades are bad for AID. It's interesting to read this as this does sound like a referral to allergist would be in order? What AID could do to us is well beyond joints or gut. Don't get me wrong, I have a similar issue but yours sounds quite tricky, too. The thing is, if you stopped eating certain food groups for so long, because you were afraid of this or those effects, it's hard to go back. I used to think mine is pretty crazy, but yours, oh, boy. You are competing.

[Bong1968 in reply to andyswarbs]

There's a massive difference between a gluten intolerance and Coeliac Diease!

Gluten is hidden in so many things! Foods, toothpaste, glue on envelopes, the list in endless...

Some people may chose to say that they are allergic rather than intolerant in a restaurant as they consider that this will make them be taken more seriously.

We don't call Coeliac Disease an allergy because it IS a disease!

I worked with someone who had it and feel for anyone who suffers as, like Jerry says, it can be very isolating.

My colleague was formally diagnosed and did not 'diagnose' herself....

[andyswarbs in reply to Bong1968]

You are right about ceoliac being incredibly serious. I do not wish to belittle the severity of the disease. My friend, Maria, initially diagnosed herself, but then went through a biopsy to ensure she read the situation correctly. She did not want her son to go through that process at his age at the time.

Correct me if I am wrong, on this continuing subject of severity of words and implications of the illness, we talk of a "nut allergy", and yet that can be truly life threatening.

[Cooper27 Administrator in reply to andyswarbs]

Coeliac isn't an allergy or an intolerance, it's an auto-immune disease. It does make it hard to explain what it is, I describe it as 'like an allergy' to help people understand that trace amounts are dangerous, but always explain the risk is gastro-intestinal and not anaphylaxis.

I would be wary of saying you have an allergy if you don't though, as you may be served something that has been prepared carelessly, but when the kitchen sees you're ok, they assume it'll be ok for the next guy, who does have an allergy.

[Hidden in reply to Hidden]

Not everyone has managed to get diagnosed with CD, officially. People generally end up with the label of "IBS" without any evidence. The formal recognition does help, to have that much-needed closure and facilitate the management/therapy. But one can imagine/appreciate how long it must have taken to get to that diagnosis as in other autoimmune conditions. I stopped eating gluten many, many years ago. My blood test for CD done a few years ago, came back negative. That was the end of that.

I often wondered if there are different types of CD. Some people with CD won't even tolerate oats, either. Some do, so there must be sub-types, hence it's probably a syndrome rather than "the disease". Any systemic autoimmune conditions are tricky beasts. Many of us do experience what you describe. People, who have other autoimmune diseases may already have GI disorders, but it remains to be "?".

People, who are diagnosed with one autoimmune condition tend to have other autoimmune conditions. GI issues are far more common than what anybody would think we do. CD is a very specific autoimmune condition, yet it is also systemic much like RA/SLE. It's not purely a gut-related condition and it manifests in other ways that always seem to be the case with any autoimmune conditions.

[Bong1968 in reply to Hidden]

It's possible that those people who have a reaction with oats have eaten some from a comtaminated load.. An example of this would be where the same vehicle is used to carry oats after it has been used to carry wheat or that the crops were grown too close together..

[Hidden in reply to Bong1968]

Hi Bong, oats are still a member of the triticale grass family that is toxic to coeliac, there is indeed the risk of cross contamination but even pure oats contain avenins a gluten like prolamin but in a much smaller quantity to gluten in wheat so some coeliac can tolerate up to 50g per day and coeliac children 15g which’s just over 1/2 oz.

Some very sensitive coeliac can not tolerate wheat derivatives like maltodextrin, dextrose even caramel and acetic acid can be wheat derivatives.

Oats in the gluten free diet is controversial amongst coeliac societies but all coeliac experts agree that even pure oats can make all coeliac ill depending on quantity eaten.

And I don’t eat oats. 😊

[andyswarbs in reply to Bong1968]

For people with coeliac disease the only safe oats are ones that are coeliac certified as safe, and even then they should be consumed with caution.

[Cooper27 Administrator in reply to Hidden]

My crude understanding that the proteins leak out through the gut walls, then our immune system attacks them because they shouldn't be outside the gut. Our bodies can mistake other food proteins, due to their similarity to the original proteins though, so because oats are very similar to gluten, the immune system can mistake them and has a similar reaction. Some people get a similar reaction to dairy due to its similarity.

[Hidden in reply to Cooper27]

coeliac.org.au/uploads/6570...

This is what the CSA say about oats.

[Activity2004 Administrator in reply to Hidden]

Thank you for posting this link, Hidden . I will have a look at this soon as possible.😀👍👌

[Bong1968]

Thanks for that Jerry!

Very interesting and worrying..!

A company I used claim that their product is totally gluten free and suitable for Coeliacs as they guarantee that the oats are sourced from farms who are miles away from wheat, use special trailers to transport them and use a non-contaminated factory.

I personally buy the standard product which isn't gluten free but it's a concern that someone who is very sensitive could still get a reaction from the oats that are deemed gluten free.

So your options are even more limited that I thought! 😐

I am not surprised that you do your own cooking...

Good job you're a gifted chef! 😊

[Hidden in reply to Bong1968]

Thank you Bong and me I’m more of a cook...😊

[Hidden]

It is a growing trend amongst men, shopping for groceries and cooking for his entire family, as well, not just one-off e.g. dinner parties. If that's what he wants and enjoys...I have known a few of them, too. Men will be getting his contraception and soon enough, he would be reproducing on his wife's behalf.

I was surprised there's no CD hub on this site.

[Penel in reply to Hidden]

Coeliac disease site: Gluten Free Guerrillas.

healthunlocked.com/glutenfr...

[Hidden]

How lovely, Penel.

Thank you.

[Hidden]

My reactin to Andy's statement/ot is:

It's a bit like a form of eating disorder, to average people, who would be happy to eat anything. I do have a similar tendency if I haven't misinterpreted it. Maybe, you could get some help if you wanted to? I have no inclination to change at this stage. People, who would advise AI elimination diet tend to reintroduce what you previously stopped eating.There are reasons, not that I'm saying, that's what you should do. You might not react to the food the way you used to do. Decent functional Drs are worth knowing, too. I wouldn't say yours but people who have any AI, it's systemic. Useful to have experts opinion every now and again if needed.