Angry With My Mum

[taz sharratt]

im really upset with my mum, i told her about the gluten challenge and haow bad it went for me and cancelling the endoscopy as i was too ill to go back on gluten. well, she said she couldnt uderstand why i had such a vioent rection from it, quote" i cant understand it, you had gluten and milk for more than twenty years so why now haveing been off gluten and milk for only 3 months you get such a reaction,\ deosnt make any sense to me" i didnt know what to say, i didnt know whether she was calling me a liar or what, it really upset me when she said " your mind can play tricks on you and make you have pain and all sorts" i was gutted she said it. the truth is tho i dont know what to say to her about why my symptoms had worsend just after 3 months off gluten, i dont understand any of it myself so how can i explain it to someone who thinks im iether a liar or a hypercondriact. it really upset me!!!

[2kids4me]

You can't control other people's reaction - only your own.

My mother basically called me a worrywort mother for 6 months prior to my daughter being diagnosed celiac (she was diagnosed first, then my son), she thought I needed "help"

When they were diagnosed, she did an about face and was telling me all about celiac and bragging about how knowledgable she was... yeah whatever. Would ahve been nice to have support prior to that....

If you decide to have another conversation about this with your mother. Explain it simply - your intestines had been damaged for years - unknown to you - and your body had adjusted to this as best it could and you had chronic symptoms - going gluten-free allowed the villi to heal...introducing gluten would start the damage full force, and to your body/intestine - it feels like being hit by a truck. Before it was chronic damage, this time it is acute and caused a full force immune mediated attack.

Before - the damage started out gradually as the body built more and more of an immune attack - it occured over time until there was so much damage, you developed symptoms. You went off gluten, the body healed BUT the immune system remembers and is always ready to attack any gluten now.... The second go - the antibodies are there full force immediately. It makes a LOT of sense that you got so ill.

New damage, acute attack full force by your immune system - plain and simple.

I just thought of this comparison - dont know if it even makes sense -

If you got hit by a car once and received minor injuries. Does that mean if you get hit a second time and had broken bones/internal injuries- its not supposed to hurt as much cause, golly, you've been hit before ??

Another anaology - someone gets stung for the first time by a wasp - normal reaction...

They get stung a second time and react violently with anaphylaxis.

That is because the first time they got stung - it sensitized their body and the body overeacted. The second time the body reacted so much that it created life threatening symptoms

[CarlaB]

Taz, sorry, I know it's hard. I have a hard time with my mom, too. I've had to take the "I don't care if you believe me, it makes me sick" approach. Look to your husband and this board for support and understanding to face all the other people in your life who may never understand. I think mothers have a hard time especially because they don't want their kid to have a chronic illness, and they don't want to admit that much of what they fed their kid was making them ill (not that it's her fault).

I'd just give her an article or something to read and say that you got this for her so that she'd understand better what you're going through. That is, if you want to address it with her again at all. I usually don't.

[oceangirl]

Taz, sorry, I know it's hard. I have a hard time with my mom, too. I've had to take the "I don't care if you believe me, it makes me sick" approach. Look to your husband and this board for support and understanding to face all the other people in your life who may never understand. I think mothers have a hard time especially because they don't want their kid to have a chronic illness, and they don't want to admit that much of what they fed their kid was making them ill (not that it's her fault).

I'd just give her an article or something to read and say that you got this for her so that she'd understand better what you're going through. That is, if you want to address it with her again at all. I usually don't.

Taz,

Similar "Mom" issues. I think my mother, who baked all our bread and was a "health food nut" in the seventies, just can't accept that "good" food could make you ill. Also, anyone, (like my mother), who has not lived a life in combat with food and their intestines seems to have a hard time putting themselves in another's shoes! It is HUGELY frustrating, but she's come around a bit- the genetic testing helped. For now you might have to have some enforced distance until you are strong enough to stand up to her or at least to MOSTLY not let it get to you. (Easier said...) Only YOU live in your body. And it's true, we can't control other people's reactions, only our response to them.

Feel better.

lisa

[whocares]

Taz, sorry, I know it's hard. I have a hard time with my mom, too. I've had to take the "I don't care if you believe me, it makes me sick" approach. Look to your husband and this board for support and understanding to face all the other people in your life who may never understand. I think mothers have a hard time especially because they don't want their kid to have a chronic illness, and they don't want to admit that much of what they fed their kid was making them ill (not that it's her fault).

I'd just give her an article or something to read and say that you got this for her so that she'd understand better what you're going through. That is, if you want to address it with her again at all. I usually don't.

/b/ I have also had Fibromyalgia for six years. The problem with having a disease that people can't see on the outside, and with family, is that it isn't obvious. They only have your word as to what is wrong. It's not like you are in a cast or a wheelchair, so what could be your problem? Others have said to try to educate or ignore--both can work.

[eKatherine]

These are all great, but maybe she needs to be more personally acquainted with the gory details of your symptoms. I think she's sheltered by her ignorance of what you really go through.

[CarlaB]

These are all great, but maybe she needs to be more personally acquainted with the gory details of your symptoms. I think she's sheltered by her ignorance of what you really go through.

I think this is a valid point. When I leave the house, I am all cleaned up, makeup on, etc. They don't even see me the days I can hardly get out of bed, and certainly no one follows me into the bathroom!! People never knew I was even ill. I have gained quite a bit of weight back, so they're happy to see me looking better. But no one except the ones I live with really understand. In fact, we can assume since this pic was taken last spring that I felt like complete garbage then. That was taken at Outback. Everyone else was there for a snack, I ate a whole meal. When I got home, the first thing I did was make myself more to eat.

[2kids4me]

Even when my mom saw the transformation in her granddaughter - the energy levels, the slimmer tummy (was very bloated), the smiles , etc.

Her comment - it cant just be from the diet - she is growing up and its normla for them to be pudgy and then slim out ....

Even in the face of improvement - some people (no matter how hard you try) cannot believe everyday food could cause such issues.

The most hurful thin that was said to me the year that daughter had KD, son was diagnosed with Type 1 diabetes and then daughter was going through testing for celiac - I was told "Well you should have expected that when you decided to have babies", "your children pay the price".... and that I shouldn't be requiring emotional support becasue it's my own fault.....

OOps I digress...

I come here too when I feel like I am treated likea hypochodriac and stuff.

[queenofhearts]

I think this is a valid point. When I leave the house, I am all cleaned up, makeup on, etc. They don't even see me the days I can hardly get out of bed, and certainly no one follows me into the bathroom!! People never knew I was even ill. I have gained quite a bit of weight back, so they're happy to see me looking better. But no one except the ones I live with really understand. In fact, we can assume since this pic was taken last spring that I felt like complete garbage then. That was taken at Outback. Everyone else was there for a snack, I ate a whole meal. When I got home, the first thing I did was make myself more to eat.

I can really relate to this-- I rarely talked about my symptoms because 1. some of them were really gross & 2. I just didn't want to be a complainer. So I pretty much suffered in silence. When I was diagnosed & went gluten-free my family was somewhat mystified & some thought it was an awful pain of a diet for somebody who didn't seem all that sick. Not that they were completely unsupportive, but I think they thought I was making mountains out of molehills. Well, only I know how bad I felt, only I know I will feel better from eating properly, so I just have to stand my ground & do what I know is right. After all, Celiac is a pretty poorly-understood syndrome, & even doctors don't get it, so it's not surprising that your average relative would be a bit baffled.

Leah

[eleep]

It's taken me a great deal of effort and patience to get my family and loved ones to understand how sick I get -- I've been struggling with the disbelief factor as well. One thing that has helped (I think) is for me to invite them to this forum and sometimes to send them clippings from the board.

What has been to my advantage (although it's also been the biggest relationship-destroyer of my life) is that there was clearly something going wrong with me -- I was anxious, I was stressed beyond belief, I had trouble being a nice person, I was fatigued a lot, I was very dependant. Those who were closest to me saw this at least a little bit -- a lot of other friends hadn't because they only saw me when I was feeling well. Since I've broken up with my partner (which happened just as I started to go gluten-free), they've assumed that the occasional panic attacks I seem to be having (and general stressiness for a few months) have been related to him, which is simply not the case -- I have been stressed about the breakup, but it's nothing compared to a reaction.

I'm finding that it takes time for people to believe -- and sometimes persistant, gentle re-direction. After about five months of this, many people are seeing how much better I feel these days and I'm getting a lot of comments about how much better I even sound on the phone.

eleep

[jkmunchkin]

I'm sorry your mom is reacting like this.

You neeed to explain to her that once your body is off gluten, even for a time period of 3 months, once you have gluten again your bodies reaction to it is much worse. It was something your body could never tolerate and now your body is rebuilding itself and not used to having these poisons anymore. That is why you hear stories about how sick people get when accidentally getting glutened.

For instance, prior to dx yeah I felt sick all the time, I'd have a lot of stomach aches, etc. - but now if I accidentally ingest something with gluten it's worse than it ever worse. I'll be in pain that just makes me want to cry.

Even though you are intolerant to gluten your body had built up some sort of coping level of tolerance to it for the 20+ years you were having it. But now that you've cut it out of your life and your body was healing, your body is reacting to that poison.

I would see if there are any books out there that explain this for you to show your mom. Maybe Gluten Free For Dummies, or Peter Green's new book.

It sounds like your mom needs to see an "official" source to understand your bodies reaction.

[Guest nini]

boy that all sounds so familiar. when I was first dx'ed I heard the same kinds of comments from loved ones... the way it was explained to me was that with the chronic symptoms, my body had been trying to tell me for years that something was wrong, but as long as I continued to eat gluten, my body just gave up and went into survival mode (which for me was gaining over 100 pounds too much) once I went gluten-free and my intestines began to heal, my body said "OH she's listening to us now!!" and so anytime I had even the tiniest bit of gluten I would get severe reactions, like alarm bells being set off...

just keep doing what you know you need to do and don't feel the need to explain it to anyone, even your mother. Eventually she will (hopefully) recognize the truth of what you are telling her. My family finally did. I spent my whole entire pre gluten-free life being called a hypochondriac and a liar when I knew I wasn't, so that always gets me riled up.

[Carriefaith]

I'm sorry

How about getting a celiac gene test done? You don't need to be eating gluten for that test.

[tarnalberry]

she didn't call you a liar; it's a fine distinction. she didn't - if that's what she said - say "I think you're making it up when you said you felt bad". she *is* right that the mind can make you feel symptoms or not all on its own (that's why double blind tests are run to compare drugs against placebo - the placebo effect is real and works both ways). and many of us don't understand exactly *why* it happens either. know that, for you, she doesn't have to understand. she doesn't even have to agree. she merely has to respect the fact that it's your decision.

[daffadilly]

Just offering my sympathy here. My family has celaic coming from both sides of the family. I had the gene test thru Enterolab. we are Irish & English, McCann & Webb.

I guess I was under the misconception that everyone in Ireland and England was familiar with celiac & it was just us Americans that were so out of the loop.

I hope you are feeling better, I personally do not believe in gluten trials. Why do something that could almost kill you? Like someone else suggested, get the gene test. You can go thru Enterolab and they will ship to you, a cheek swab, & you ship back to them. check them out at Enterolab.com I like to use them because they also test for the gluten intolerant gene DQ1.

re your mum, well, it is just so hard for people to wrap their brain around something that is so much against the dogma that they have heard all their life. Think what a time some people must of had trying to convince other people that their was such a thing as germs!!!!! Well I guess that is not fair, the thought that one of the "staff of life" foods could actually be killing people must really seem from outer space. Also, remember that your mum thinks of you as just a child, no matter your age & that you have a dozen kids of your own etc., and she is the learned mum & how could her child know something so unbelieveable that she has never heard of it herself? So maybe give her the benefit of "open mouth insert foot moment" and give her some info on celiac and how common it is etc. AND, remind her that it is genetic and that you got it from her or your dad or both. Also, ask her to ask around among the relatives, I bet you are not the only one in the family with celiac.

Good Luck - & remember your family will always be there for you, but it is your friends that will understand and support you thru it all.

[coeliac2000]

I have had similar problems with my mum. I'm 16 now, but i stopped eating wheat when i was about 9. Its only been in the last year that i was diagnosed with coeliac after i started getting really sick, and ever since then i have been extremely careful not to eat any gluten. I am still occasionally getting sick, but i have had to supress my symptoms because my family get angry if i complain. I feel like none of them understand what i go through and they are constantly asking why i cant just eat a little gluten. For example, last week my sister was making dinner. and put gluten soya source in the stir fry without telling me. When i then told her that i couldnt eat it she just told me that she thought it was unfair that she should be punished just because I have a disease. ( i personally dont think there is any differance between normal soy source and gluten free.) My mom has also told me that she thinks its just in my head because i used to be able to eat small amounts of gluten without getting to sick. To make things worse, i am pretty confident that she has coeliac herself, although she wont admit it. I do get very angry when she complains to me about feeling sick after she gulps down a pizza, although she wont let me complain when i am being so careful not to eat anything. I completely understand what it feels like for people to not understand.

[Guest Robbin]

I have had similar problems with my mum. I'm 16 now, but i stopped eating wheat when i was about 9. Its only been in the last year that i was diagnosed with coeliac after i started getting really sick, and ever since then i have been extremely careful not to eat any gluten. I am still occasionally getting sick, but i have had to supress my symptoms because my family get angry if i complain. I feel like none of them understand what i go through and they are constantly asking why i cant just eat a little gluten. For example, last week my sister was making dinner. and put gluten soya source in the stir fry without telling me. When i then told her that i couldnt eat it she just told me that she thought it was unfair that she should be punished just because I have a disease. ( i personally dont think there is any differance between normal soy source and gluten free.) My mom has also told me that she thinks its just in my head because i used to be able to eat small amounts of gluten without getting to sick. To make things worse, i am pretty confident that she has coeliac herself, although she wont admit it. I do get very angry when she complains to me about feeling sick after she gulps down a pizza, although she wont let me complain when i am being so careful not to eat anything. I completely understand what it feels like for people to not understand.

Wow, I think you show an amazing awareness of your body and your needs at a very young age. I am impressed with your maturity and please don't let anyone take your health from you. I get a little skepticism from people, but my mom has seen the amazing difference in my health and knows I am not imagining it. Who on earth would want to be sick? Why would anyone in their right mind want to have such an inconvenient, rigid diet? I would think they would realize that it MUST make you very sick for you to give up such wonderful tasting, easy to come by, convenient foods! (Not to mention way cheaper!)

[hez]

Could your mum's reaction be out of guilt? No matter how irrational it sounds she could be in a defensive/self protective mode so she does not have to feel bad. I only bring this up because I know my mum felt bad about possibly giving me the gene. Now you and I and other rational people can say that is silly but feelings are feelings. Feelings are neither right or wrong (how you act is right or wrong) they just are. I know when we were testing the kids I was so sad at the though that I "gave" this to them.

I am sorry your mum is not able to be more understanding. Seek out those that are more sympathetic for support.

Hez

[taz sharratt]

Could your mum's reaction be out of guilt? No matter how irrational it sounds she could be in a defensive/self protective mode so she does not have to feel bad. I only bring this up because I know my mum felt bad about possibly giving me the gene. Now you and I and other rational people can say that is silly but feelings are feelings. Feelings are neither right or wrong (how you act is right or wrong) they just are. I know when we were testing the kids I was so sad at the though that I "gave" this to them.

I am sorry your mum is not able to be more understanding. Seek out those that are more sympathetic for support.

Hez

its interesting you say that cos when i first tol her i had celiac the first thing she said after " what s that" was well you didnt get if from me it was probably your father that gave you that. maybe she does think that i bame her ( i dont).

You can't control other people's reaction - only your own.

My mother basically called me a worrywort mother for 6 months prior to my daughter being diagnosed celiac (she was diagnosed first, then my son), she thought I needed "help"

When they were diagnosed, she did an about face and was telling me all about celiac and bragging about how knowledgable she was... yeah whatever. Would ahve been nice to have support prior to that....

If you decide to have another conversation about this with your mother. Explain it simply - your intestines had been damaged for years - unknown to you - and your body had adjusted to this as best it could and you had chronic symptoms - going gluten-free allowed the villi to heal...introducing gluten would start the damage full force, and to your body/intestine - it feels like being hit by a truck. Before it was chronic damage, this time it is acute and caused a full force immune mediated attack.

Before - the damage started out gradually as the body built more and more of an immune attack - it occured over time until there was so much damage, you developed symptoms. You went off gluten, the body healed BUT the immune system remembers and is always ready to attack any gluten now.... The second go - the antibodies are there full force immediately. It makes a LOT of sense that you got so ill.

New damage, acute attack full force by your immune system - plain and simple.

I just thought of this comparison - dont know if it even makes sense -

If you got hit by a car once and received minor injuries. Does that mean if you get hit a second time and had broken bones/internal injuries- its not supposed to hurt as much cause, golly, you've been hit before ??

Another anaology - someone gets stung for the first time by a wasp - normal reaction...

They get stung a second time and react violently with anaphylaxis.

That is because the first time they got stung - it sensitized their body and the body overeacted. The second time the body reacted so much that it created life threatening symptoms

thats a good one, i think i will use the truck idea to explain it to her, and thanx cos it explained it to me as well cos i didnt understand iether.

These are all great, but maybe she needs to be more personally acquainted with the gory details of your symptoms. I think she's sheltered by her ignorance of what you really go through.

this is true, when she said about me not beingable to get out of bed before, well she doesnt know much about me or how ill ive been before, there has been times i couldnt get out of bed cos of the thrush attcks being so bad ( i mean severe!!!), she hasnt seen me downing 2 boxs of laatives cos im been so C, ok i admit it was sever this gluteing and ive never had blurred vision before or the actually being sick( felt it ). i guess i expect too much from her.

oh and by the way, when i went back on the glten for the test within 2 days the thrush was back, she knew this but didnt say anything ( can your mind bring thrush on ) had to wait for my meds as they didnt have them in stock, went back on the diet, its now sunday and the thrush is cleared up without haveing to take any meds !!!! is this in my mind

I have had similar problems with my mum. I'm 16 now, but i stopped eating wheat when i was about 9. Its only been in the last year that i was diagnosed with coeliac after i started getting really sick, and ever since then i have been extremely careful not to eat any gluten. I am still occasionally getting sick, but i have had to supress my symptoms because my family get angry if i complain. I feel like none of them understand what i go through and they are constantly asking why i cant just eat a little gluten. For example, last week my sister was making dinner. and put gluten soya source in the stir fry without telling me. When i then told her that i couldnt eat it she just told me that she thought it was unfair that she should be punished just because I have a disease. ( i personally dont think there is any differance between normal soy source and gluten free.) My mom has also told me that she thinks its just in my head because i used to be able to eat small amounts of gluten without getting to sick. To make things worse, i am pretty confident that she has coeliac herself, although she wont admit it. I do get very angry when she complains to me about feeling sick after she gulps down a pizza, although she wont let me complain when i am being so careful not to eat anything. I completely understand what it feels like for people to not understand.

me too, i think my mum has it too but she refuses to get tested, after the chat we had the other day sh said she was gonna get tested but now she wont cos she doesnt want to give up the food she likes and its too complicated to know what food she would be allowed! i give up.

[gfp]

its interesting you say that cos when i first tol her i had celiac the first thing she said after " what s that" was well you didnt get if from me it was probably your father that gave you that. maybe she does think that i bame her ( i dont).

thats a good one, i think i will use the truck idea to explain it to her, and thanx cos it explained it to me as well cos i didnt understand iether.

If your mother doesn't smoke you could invest in a packet of cigarettes and ask her to finish them in one go before you talk about celiac disease further. (it could even be virtual)

Obviously she won't .... but the point is many people smoke 60 a day .... of course its damaging them but the reaction is not the same as a non smoker sitting down and smoking 60 in a run.

The body learns how to get rid of the toxin, its still damaging but a non smoker will throw up....

The comment on you didn't get it from me is a bit telling but I suspect she is rather scared herself.

So if she smokes 60 a day you will eat 3 slices of bread a day for the biopsy!

I think she probably has other guilt for feeding you all the bread thinking it was good for you....

A long time ago now I went to my mothers before diagnosis but when I had figured out for myself wheat made me ill. My mother always insisted of thick pie crusts and a meal isn't a meal without bread and gravy. (Lancs) ...

One Christmas I was really ill, migrane, double vision etc. etc. on top of the D and GERD and I ended up knocking over a glass of wine (I literally couldn't see ... everything was all fuzzy and bright lights and I had sunk enough coedine to kill a horse)

She have me this huge lecture about how I was doing it for attention and you can't be allergic to wheat and .... (I tuned out at this point)

Before she was diagnoised she got severe GERD, indeed unsuprising with the genetics her symptoms were identical to mine .. then she got vertigo etc. but still wouldn't admit the possibility of wheat beig the cause ... onions... garlic anything she could taste but not wheat.

At this point she was confined to bed mainly and eventually apologised over the accusation (I mainly just said the GERD and headaches) .. and eventually I tricked her Dr. into doing a coeliac blood test.

She went through all the guilt stuff about feeding me formula as a baby, making me eat bread and cakes etc. for a while.

Hope this helps

[taz sharratt]

If your mother doesn't smoke you could invest in a packet of cigarettes and ask her to finish them in one go before you talk about celiac disease further. (it could even be virtual)

Obviously she won't .... but the point is many people smoke 60 a day .... of course its damaging them but the reaction is not the same as a non smoker sitting down and smoking 60 in a run.

The body learns how to get rid of the toxin, its still damaging but a non smoker will throw up....

The comment on you didn't get it from me is a bit telling but I suspect she is rather scared herself.

So if she smokes 60 a day you will eat 3 slices of bread a day for the biopsy!

I think she probably has other guilt for feeding you all the bread thinking it was good for you....

A long time ago now I went to my mothers before diagnosis but when I had figured out for myself wheat made me ill. My mother always insisted of thick pie crusts and a meal isn't a meal without bread and gravy. (Lancs) ...

One Christmas I was really ill, migrane, double vision etc. etc. on top of the D and GERD and I ended up knocking over a glass of wine (I literally couldn't see ... everything was all fuzzy and bright lights and I had sunk enough coedine to kill a horse)

She have me this huge lecture about how I was doing it for attention and you can't be allergic to wheat and .... (I tuned out at this point)

Before she was diagnoised she got severe GERD, indeed unsuprising with the genetics her symptoms were identical to mine .. then she got vertigo etc. but still wouldn't admit the possibility of wheat beig the cause ... onions... garlic anything she could taste but not wheat.

At this point she was confined to bed mainly and eventually apologised over the accusation (I mainly just said the GERD and headaches) .. and eventually I tricked her Dr. into doing a coeliac blood test.

She went through all the guilt stuff about feeding me formula as a baby, making me eat bread and cakes etc. for a while.

Hope this helps

my mum does indeed smoke and am really concerned for her but she says she is trying to give up all the time but never actually does. im sure she has celiac as her health is quite an issue for her, she has had mini stokes, she had tb when she was young so only has 1 lung, her blood pressure is the worst and has been hospitalized cos of it a lot, like 200 bp

[ravenwoodglass]

its interesting you say that cos when i first tol her i had celiac the first thing she said after " what s that" was well you didnt get if from me it was probably your father that gave you that. maybe she does think that i blame her ( i dont).

In my family the blame was layed solely on my shoulders for years after my diagnosis. I had always been the one who was mentally ill, the crazy Mom who wanted to be sick. My DD even accused me of poisoning her for 2 years when she was at her worst. She was sick because I was depressed and 'a hypocondriac'. After she went to college she got a GI to tell her that she was misdiagnosed by remaining gluten-free for her endo. Of course it was negative so she couldn't have gotten the gene from me. I wish I could have seen her face when we let her know her Dad had finally been tested. I think he wanted to stop my nagging There was a very long silence on the other end of the phone when she was told of his positive tests and the changes in him now that he is also gluten-free. To my knowledge she is still in denial. All we can do is hope she will eventually go back on the diet. Try not to concern yourself with the genetic blame game. We have no control over our genes. You seem to have a good head on your shoulders, try not to get too upset with her. She may as others have said be feeling guilty over having fed you this stuff for so long. I still toture myself on a daily basis over the permanent problems that my kids have because this wasn't diagnosed till late in their teens. I know it wasn't my fault but for parents the quilt can be hard to live with. Do what you know is best for you. Hopefully she will come around eventually when she sees how much better you are doing mentally and physically.

[CarlaB]

Strange how that blame thing comes out. My grandmother on Mom's side said I must have gotten the gene from my grandmother on my dad's side who was always sickly (this is probably true). However, I have TWO genes for it, so it also means that my mom's father probably also had it!! He always had digestion and joint problems. No one wants to take blame, like blame is necessary!