How Can I Show That I Take Notice

[nikky]

Im very laid back when it comes to medical issues, i dont tend to worry about it and when i do i dont let on that im worried or scared. My theory is that there is no point getting upset over something you cant change, you should give yourself a few days to take in what is happening and the carry on as best you can. I dont go over things again and again and I loose interest quickly when my mother starts talking about coeliac (mostly because she repeats herself a lot). My pearents seem to think that it all go's completely over my head and said to my peadi "shes not bothered she just leaves it to us"which is not true, i have done loads of research and joined various companies as well as looking at everything when i go out (i have had even my most patient of freinds complaining that im taking too long). when im not doing homework or reading im on the net talking to people who know what im going through and researching, i wouldnt be at all surprised if i knew more about this than both my pearents put together. A few times my mother has come home with a disgruntled look on her face saying i cant have a certain food and i already know i cant have it so when i always reply with 'i know' i think she thinks im just being moody or im not paying attention to what she is saying.

How do i get them to see that even though im laid back, i do take notice and look for information as well as learning which foods i can/cant have for myself.

thanks in advance.

[darlindeb25]

Ok Nikky,

If you are researching online, sit down at the computer with your mom and show her what you have been looking at. Show her what you have bookmarked, show her anything you have printed. Help her to believe that you are taking this seriously, that's all she wants. She just needs to know in her heart that you really are serious, unless you help her to understand, how will she know? A simple "I know!" isn't enough for we parents. We aren't mind readers.

[mftnchn]

I agree. I think most of us think we are communicating thoroughly but in reality, we are not. It is worth taking the time to explain clearly but without being defensive or attacking.

Maybe say something like, "I notice that sometimes you say this or that, and I get the impression that you may think I am not taking this diagnosis seriously. I want to let you know that I believe this is extremely important, and have been spending a lot of time educating myself. For example..... I appreciate your concern and all you do to help me cope with this, and just wanted to confirm to you that I am definitely on board and part of the team."

Good luck!

[Jestgar]

I think that most people in general just want to know they're understood. When your parents (or anyone) says something you think is obvious just assume what they're saying is "I care about you". Then smile and say thank you.

[curlyfries]

A simple "I know!" isn't enough for we parents. We aren't mind readers.

To a parent, " I know" can sound like a brush-off. If you're not big on long conversations or explaining yourself ( I was young once and VERY laid back, so I think I understand), just by adding one short phrase--- I read it on celiac.com (or wherever)--- should be enough to make her realize that you've been doing your research.

Btw---keep up the good work!!! Sounds like you're on the right track

[AliB]

If you can talk to to others on the net about what you are going through, why not discuss it with your Mum?

I think my kids must be sick of hearing about it too but I am just trying to get through to them about Celiac and gluten intolerance and how it affects so many people and really ought to be taken seriously. I'm a bit like a stuck record though at times. Both my daughter and son will discuss it with me - I think my son understands more than my daughter in a way but I think she is beginning to take it seriously now as both her boys seem to be having issues with gluten.

When she has had enough of the conversation though she will just ask me to change the subject! But at least we can talk about and discuss it. I often tell her about things I have found on the internet.

I would have thought that as it is obviously something your Mum feels strongly about and you are also affected by that you both really have quite a lot in common. I and my daughter have a very good relationship and can talk about anything, and we do. We are on the phone to each other every day, sometimes several times!

It never used to be like that of course when she was a teenager - it's par for the course that teenagers don't communicate with their parents very well - Jane and I didn't really have a very close relationship until after she was married and had kids of her own and could suddenly see things from our side of the fence ! Now we are the best of friends which is fantastic.

The best way of letting your Mum know of your interest is to discuss it with her. Why not tell her when you come across interesting points on the net? I have had a tendency to repeat myself too - Jane normally tells me when I do that - I think it may well be left over from when the kids were younger and I didn't think they were listening to me then! Life is all about Feedback. We all need feedback. That is why we are all on here! Give your Mum feedback and she will not need to keep on about it.

You could always just tell her that although you have this problem and you are interested, you just don't want it to be your focus of attention. You have a life to live and the GI is only one part of it. She does it because she cares about you. As parents we have a need to try and put things right for our kids - she's just doing what comes naturally to a Mum. Love her for it.

[nikky]

If you can talk to to others on the net about what you are going through, why not discuss it with your Mum?

The best way of letting your Mum know of your interest is to discuss it with her. Why not tell her when you come across interesting points on the net? I have had a tendency to repeat myself too - Jane normally tells me when I do that - I think it may well be left over from when the kids were younger and I didn't think they were listening to me then! Life is all about Feedback. We all need feedback. That is why we are all on here! Give your Mum feedback and she will not need to keep on about it.

You could always just tell her that although you have this problem and you are interested, you just don't want it to be your focus of attention. You have a life to live and the GI is only one part of it. She does it because she cares about you. As parents we have a need to try and put things right for our kids - she's just doing what comes naturally to a Mum. Love her for it.

I see your point.

Me and my mother have a very strong relationship, and talk about anything its just sometimes the conversations turn into lectures about stuff i already know and then it gets frustrating and i walk out of the room to avoid an argument. I just dont want it to be the only topic of conversation, i have other things that i need to talk about and we nearly always come back to this.

[Auntie Lurlynn]

I'm probably repeating a lot of what the others are saying. When you find some new research show it to your parents or to tell them about it. My mom hs Celiac, so if I find something we didn't know about,I show it to her because she'll definitely want to know it.

[AliB]

Hmm yup, lectures, that about sums us up really. I know I do that and did that when my kids were younger. It's like I am never really quite sure that they have got the point I am making.

My poor son - he was always late for everything and as he worked at the same place as me and had to come with me in the car every morning, inevitably he made me late too! He used to get his ear bent all the way to work whilst I tried (generally in vain!) to get through to him that we needed to be on time, to keep his room tidy, to try to not keep losing his wallet/keys/phone/whatever. Poor kid. It's a wonder he still loves me...........

It's a communication error. We all think differently. The same thing happens between husband and wife. Sometimes I tell my husband about a problem. He grabs hold of it and starts telling me what I should do about it. Men always have to try and fix things. Usually of course, I know what to do about it, but what I really want and need is not a fixit, or an inquest, but a hug. Sometimes it gets that I just don't bother to tell him about problems.

The very best relationships hinge on open and honest communication. Communication is an art. Like any art we have to practice at it to get better. We have to be able to read and interpret between the lines. Sometimes we have to be honest about how we feel. Could you sit down with your Mum and explain (tactfully) how you feel? That you are frightened to talk about it because it always ends up in a conflict and you can't cope with that? Is there a valid reason why she does that? Is there anything you could do from your end that would help to ease the situation? Sometimes we have to try and compromise from both sides so that we can meet in the middle.

[AliB]

PS. Where are you in Wales Nikky? Perhaps your Mum and I could bend each others' ears about the Celiac/gluten subject???

I kind of understand how she feels - this thing is huge. It is a lot lot bigger than all of us. So many people are sick and suffering and a huge percentage of that suffering is all down to gluten. I just want to tell everyone. I keep looking at all my friends knowing that if they stopped eating gluten they would all be so much better..............

[confusedks]

Me and my mother have a very strong relationship, and talk about anything its just sometimes the conversations turn into lectures about stuff i already know and then it gets frustrating and i walk out of the room to avoid an argument. I just dont want it to be the only topic of conversation, i have other things that i need to talk about and we nearly always come back to this.

This is really interesting to me, because my mom thinks all I talk about is Lyme Disease and Celiac! LOL! SO, it's kinda the opposite for me. BUT, it sounds like maybe she is running out of things to talk about? I am working on keeping up on current events so my mom and I don't talk about other people (she LOVES to gossip and I like to participate!! LOL!). So, simple things like, "yes mom, I actually did know that about Celiac, I read it the other day. Did you hear about.....(something totally not celiac related)?"

It is just a suggestion.

[nikky]

PS. Where are you in Wales Nikky? Perhaps your Mum and I could bend each others' ears about the Celiac/gluten subject???

I kind of understand how she feels - this thing is huge. It is a lot lot bigger than all of us. So many people are sick and suffering and a huge percentage of that suffering is all down to gluten. I just want to tell everyone. I keep looking at all my friends knowing that if they stopped eating gluten they would all be so much better..............

we live in south wales, in Ynysddu near blackwood, its not too far from newport... and its a miricle i didnt write that in welsh when it comes to places i go striaght into welsh mode

[gfp]

As others have pointed out, if your mom keeps going on about it it's because she doesn't think you listened,

I do the same thing ...

What gets it out of my system is the other person actually listening all the way through (not sidetracking or going off on a tangent or walking out).

If you do this ONCE then she knows you got it and it will be easier for both of you.

[AliB]

we live in south wales, in Ynysddu near blackwood, its not too far from newport... and its a miricle i didnt write that in welsh when it comes to places i go striaght into welsh mode

We're up the Neath Valley at Cwmgwrach, north east of Abertawe (that's Swansea to the uninitiated!) - the other end of the heads of the Valleys so not too far away from you. I'm afraid I'm an import not home-grown, but we love Wales. It's so different to Lloegr - the scenery is breathtaking.

[nikky]

As others have pointed out, if your mom keeps going on about it it's because she doesn't think you listened,

I do the same thing ...

What gets it out of my system is the other person actually listening all the way through (not sidetracking or going off on a tangent or walking out).

If you do this ONCE then she knows you got it and it will be easier for both of you.

i have listened, all the way through, about 5 or 6 times.. it doesnt make much difference.

AliB im glad you hoffi cymru (like Wales) how far away from the burns unit are you?

[AliB]

AliB im glad you hoffi cymru (like Wales) how far away from the burns unit are you?

Are you referring to the Unit at Morriston hospital in Swansea? We are about a 15 mile 15 - 20 minute drive from there. Any particular reason?

Cara cymru lawer. Not sure about the translation. I checked it on one of those online translation sites - you would have laughed. I checked it in English and put in 'I love Wales much" What it gave me was 'cara gwrymiau lawer' - I wasn't sure about that as I have heard Wales called some things but never a 'seam'!!!!

Welsh language amazes me. It is spoken in the UK but it is more foreign than 'foreign'! I can roughly work out French and german, but welsh - you have to completely turn your comprehension of the alphabet upside down. None of the vowels sound like they do in english plus the extra ones like y and w, and then you have the double letter vowels like 'au'. Our daughter is moving up and the boys will go to school in the village - give them a few months they'll be speaking it like a couple of natives! I can't speak it but I am beginning to grasp some words, have worked out a lot of the principles and am getting pretty good at pronouncing it.

We have an elderly friend who is Welsh speaking but there is a swathe of a whole generation or two who were never taught it. It seems that unless you are over 60 or under 20 you are unlikely to speak Welsh. They've only been teaching it in school fairly recently. I'd love to learn but not sure my brain would cope with it now as it is not the easiest language to pick up. At least I'd be able to understand S4C and Pobol y Cwm!!!

[nikky]

just wondering TBH lol. We are about 45mins to an hour from the Heath, thats where i had to go for my biopsy even though the gwent is actually closer.

My first language is english but im doing a full GCSE (General Certificate in Secondary education) in welsh, by the end of that i should be fluent. I did french for three years and i was ok at it, but i found welsh easier, probbably because ive been taught the basics scince i was about three years old. I can see why its hard to learn if you werent brought up in Wales, all those different vowel sounds and putting different letters together makes different sounds .. thats why our place names can apear a bit weird if you dont know the correct pronounciation. and theres that little snag that theres no 'it' in welsh.

[AliB]

That's weird that there's no 'it' in Welsh. How on earth do they get around that one? It's funny when you are listening to Welsh and an odd 'English' word pops in. I can only assume there is no Welsh substitute for certain things!

What do you hope to do when you have finished your education? Sorry, I am assuming you are still at school or college. I do apologise if you are older!

I am sorry, we are getting off topic here - mind you, at least we're not discussing Celiac or gluten. LOL!

[nikky]

That's weird that there's no 'it' in Welsh. How on earth do they get around that one? It's funny when you are listening to Welsh and an odd 'English' word pops in. I can only assume there is no Welsh substitute for certain things!

What do you hope to do when you have finished your education? Sorry, I am assuming you are still at school or college. I do apologise if you are older!

I am sorry, we are getting off topic here - mind you, at least we're not discussing Celiac or gluten. LOL!

Well everything is either masculine or feminine, its a bit awkward trying to work out which it is though. Your correct, some words just dont have a substitute like salad and pizza.

Im in secondary school, next year is my last year i then hope to go to college and university, ive always wanted to work with children and then one of my freinds jokingly said i should be a doctor (they all come to me when somethings wrong as if im gonna know what it is ) and he got me thinking, so now i think im going to go into peadiactrics.

Its good to talk about other things

[AliB]

Going into Pediatrics sounds like a good idea to me - at least you would have a head start with kids who are Coeliac and perhaps be a bit more on the ball at recognising those in whom it hasn't yet been picked up by doctors who aren't so familiar with it.

There's one way your parents will see that you are interested!

I saw an article in the paper the other day about a young girl who is 12. She is very small for her age and has things like very bowed legs through some kind of deficiency. She is terribly thin and only weighs two and a half stone although she seems to eat ok. The doctors seem to be baffled as to what is causing her problems. I did a search on the internet and found her Mum's email address so contacted her. I asked if she had ever been tested for Coeliac or whether anyone had actually ever even suggested it. Her Mum had never heard of it. To my mind that little girl is so obviously Coeliac.

If a child isn't thriving in any way the first thing that should be checked for is Coeliac! She has seen 130 doctors throughout her life and not one of them has picked it up! For goodness sake. If it had been detected when she was little then her health would be vastly different. Due to the malabsorption and deficiencies some of her health issues will be irredeemable now, poor love. You would think in this day and age that it would be one of the first things they would look for. We don't live in the 1800's any more!

She is not displaying any obvious stomach or gut issues, but that is quite common. So little is known, and what is known is not widely known and because it isn't widely known, not only are people not looking for it, most don't even know it exists! When I asked my doctor for the blood test, she had nothing to give me, no information at all. There was nothing in the surgery. I even asked at the Hospital and they couldn't find anything either! Aaarrrggh! I just want to tell everyone about it 'cos I am sure there are thousands out there like you and me who don't know they have it!

[nikky]

Bless her heart, i wish doctors were more clued in. I hate to think of children suffering especially when its something that can be figured out with a simple bloodtest.

I wrote an article the other day for a childrens news site/program, i even mentioned that i was trying to get awareness up.. they didnt even put it in the health section aparently its not interesting enough to people of my age (15) and younger... i didnt want it to be interesting i wanted it to be eye-opening.

If i didnt have bloods for anemia run by a stand in doctor then who knows when i would have been diagnosed and how sick i would of had to get. Awareness is key and if i do go into peadiactrics im going to insist all doctors that i work with refer their patients to me if they cant figure out whats wrong.

[AliB]

Good for you!

Trouble with tests is that quite often they come back negative and the disease gets dismissed anyway even if the child of adult does actually have it, as doctors are not trained to see past the blood test! Sometimes both the blood test AND a biopsy comes back negative yet they still have it. The testing system is, as yet, still very basic and unreliable.

Personally I can't see that GI and Coeliac aren't the same thing. If someone has issues with gluten then they can't tolerate it. What do they say then, that some are Coeliac and some are just gluten intolerant? Why are they gluten intolerant? What's the difference? You can either tolerate it or you can't. If you can tolerate it you are not Coeliac. If you can't then surely you must be.

It ranges from a mild intoleration to those who can't even cope with being in the same room as gluten or eating off plates or from pans that have been used for it at some time. There are those who apparently have 'silent Coeliac' who don't display any symptoms at all! It's a real minefield and such an inexact science at present. No-one has the answers or the true understanding.

My take is that everyone who is exposed to gluten is, to a greater or lesser degree, intolerant to it. Some can cope with it fairly well, but others can't cope with it at all. Man has mucked and meddled about with it so much genetically that it does not begin to molecularly resemble the original grain that God made and is now very hard for us to process, hence the damage. You look at any community that does not eat wheat and other gluten grains, and you will see that generally they do not suffer with the types or quantity of the diseases that we do. We also eat a lot of sugar and refined and processed carbohydrates in general and that isn't good for us either, and undoubtedly contributes to the damage and disease.

I don't look at this as 'just' Coeliac. I see the bigger picture - we are all, to a greater or lesser degree suffering with health problems and the damage inflicted on us by the consumption of wheat et al is just another link in the chain of destruction and ruination of the human race! There is hope for the future, but Man won't be creating it, he just makes a mess of everything he touches!

[nikky]

I think the difference is that coeliac is an auto-immune disease but intolerances arent, also i think there are different antibodies and levels of damage.. but i could be wrong on that.

If it wasnt for all of this i probably wouldnt even think about working in peadeactrics but ive just heard too much suffering to sit back and not try to help the future generations. I just hope i can be like my peadi (i dont know if ive mentioned him but he is the best health care provider i have ever come across - he must be good if my dad will talk to him- [ he wont go in the same room as most doctors] ) and not a bone head like many people end up with.

Im going to try and use my experience and the things that all the wonderful people on here have told me to help patients.

Quick question: my freind Chloe is being checked for lactose intolerance which i know is a symptom of coeliac, i also think her sister has coeliac but her doctor cant make his mind up (first he said she does have it now he says she doesnt). I think Chloe should get tested and Genna should go back to being gluten free (i have told chloe that there is no such thing as a false positive). Any ideas how i can help Chloe without seeming pushy? Thanks

[AliB]

That's a difficult one 'cos you obviously can't just barge in.

There maybe no false positives, but there are false negatives and if her blood tests happen to come back negative, the possibility that she may be Coeliac might just be dismissed. So many doctors just seem to automatically discount it if the tests are negative.

Another options would be for her to ask if she can have the DNA test to see if she has the 'Coeliac' marker genes, especially if it comes back negative. Mine came back negative - it was done at Neath PT hospital, the thing is that I have read somewhere that apparently you can have it done in different places and the results will often come back differently, so how good the lab is at doing the tests can make a difference, too!

In many ways the best way for her to tell is to actually go gluten-free for a while and see if it makes any difference. You're right about lactose intolerance going hand-in-hand with Coeliac, but if the gut is damaged enough you can still be lactose intolerant without being Coeliac.

That is why so many Coeliacs are missed, because they don't either have the stomach problems or enough damage to the gut for either the anti-bodies to show up or the damage to be seen in a biopsy. I also suspect that when the gut is badly damaged, those who are just gluten intolerant are also diagnosed as Coeliac. There just is no hard-and-fast way of defining the diagnosis and it is very frustrating.

Was Genna better when she was gluten-free or did she not have any symptoms? Do either of their parents have stomach or other problems or illnesses that could be Coeliac-related? Perhaps they are all Gluten intolerant?

At the end of the day, if they aren't Coeliac and they follow a gluten-free diet then it won't hurt them. But if they are Coeliac and the don't, they could be heaping future problems on themselves. It's a difficult one, that.

[nikky]

Thanks Ali. I dont know if their pearents are ill and it would be difficult to find out (Chloe and her sisters are adopted) I think Genna did improve but im not sure how much and i cant talk to her directly because i dont see her. I say to Chloe that she should of been tested when Genna testesd positive but i dont think she took that much notice. I feel strongly about this because Chloe has been through too much to end up sick again. thanks again