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Urgent - Any Friends Pls Help

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OK, you guys are my last hope here not to do something really irrepairable....

The short version is that my cousin is getting married and so I'm back in England stopping with my mom who's celiac.

I have been really ill since I arrived, I literally spent most of the last few days in a stupor. My Mom kept getting me food....

Anyway, yesterday I managed not to eat anything and woke up much better ... mom offered to get me breakfast... I actually felt bad because I had been so miserable for the last 3 days ... so I went to get breakfast myself...

I found the "gluten-free" bread and then found out she has been feeding me GLUTEN for 3 days...!

I don't know what to do... I just walked out ... left everything I'm not wearing, my bank cards, passport and everything. I just want to go home to France but my passport etc. is in the house... I walked to a nearby town and managed to get some money from the bank... but its not much ...

My girlfriend is scheduled to land tomorrow, if I had my passport I would just tell her to cancel but I can't get back...

She could bring all my documentation but I still can't get a new passport for a week...

If I go back to my mothers I will say something I don't want ... and I guess if I try and get my passport legally and the police become involved it will be pretty serious....

I am obviously really upset my own mother was feeding me gluten... I still can't believe she would do it but she thinks the 200ppm stuff is OK???? I can't go back the whole kitchen is contaminated...

I even found non gluten-free cookies and stuff ?? At this point I am paranoid enough to wonder if she has been putting them into the food as well..

I really don't know what to do .... The only person I could turn to is her sister... but this is bound to make a further family mess. I'm in a public library now... I will try and come back later ...

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Steve,

You need to calm down--I know its hard because of how gluten affects you, but you have to think rationally.

Whether or not your mom knowingly glutened you, (and thats a whole other discussion I won't take the time to get into now) you need to get your things from her house. When your girlfriend gets there, could she go for you? That way, you could get back home intact, and not have to face your mom.

I hate the thought of you out there all alone like this--but I'm glad you thought to reach out to us. You know we're all here for you. Hang on till your girlfriend gets there--it's all going to be ok.

Stay in touch :)

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First of all--BREATHE. Take a minute to (attempt to) calm down.

You have many reasons to be angry, heck, no , FURIOUS.

But you need to remember that the gluten has almost certainly affected your abillity to reason, as well as affecting your anger response.

It may very well have triggered "gluten-rage," or "gluten-Bipolar" or even "gluten-Stupidity!" (I'm not entirely kidding on that last one.

Your actions today will have consequences for months to come; you need to make sure that you are behaving rationally, even though you don't FEEL rational.

You NEED to be able to go back to your mother's to get your passport and stuff. Maybe not this minute, but today or tomorrow.

Does your sister understand your situation? Can you explain either to her or to your mom that gluten--even the 200 ppm that SHE seems to be able to handle not only makes you ill, but has serious neurological consequences for you? Will they understand better if you tell them it makes you insane?

Can you tell her that yes, she can handle 200 ppm (maybe she can't handle it, but tell her she can for the sake of TODAY'S argument), but YOU CAN'T?

Can your girlfriend get your stuff from your mom tomorrow and tell her (very nicely) that you will contact her when the gluten is gone from your system and you can be rational?

Is it possible that your mother was not trying to harm you, but believed all these foods would be safe for you? In which case, you can't really be angry with someone for being stupid, they can't help it if they're stupid. You just can't put yourself in a situation where you trust her again.

I'm just rambling off the top of my head here, so everything I'm writing is very disorganized, sorry.

Can you keep yourself together enough to contact her and explain that her food made you much worse, and that you can't stay with her, but you will come and pick up your stuff. She saw how ill you were, right? So she's gotta understand?

I have no idea what your relationship is with your mom, but when you just left, would she have called the police? Is she frantically worried about you? (Yeah, yeah, I know she fed you gluten, but I'm assuming it was stupidity on her part, not homicidal tendencies.) You don't want to be putting yourself in a situation where everyone is going to think you are dangerously unhinged and have them chuck you into the hospital for observation and further glutening.

You need an advocate on your side who knows you and your situation--your girlfriend, your sister maybe?

Hang in there, and try to calm down. It does sound to me like you may have gone slightly over the edge, and when you're even slightly over the edge, it's so hard to make rational decisions.

Whatever you do , don't drink any more coffee, I think caffeine makes everything much worse and may send you into a Bipolar fit. (I've been researching that a bit lately, and I'm shocked how often it is a factor in Bipolar, which, as you know, has a strong link to celiac.) I'm NOT saying you are bipolar--I am just very worried since you totally don't sound like your usual rational self and I fear that the gluten may indeed trigger something neurological this time.

Keep us all posted. I have to go to PT now, but I'll check back in a few hours.

Can you go to an Asian restaurant and just get a bowl of plain rice and plain steamed chicken? Their chicken broths are usually gluten-free, too.

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Steve,

You need to calm down--I know its hard because of how gluten affects you, but you have to think rationally.

Whether or not your mom knowingly glutened you, (and thats a whole other discussion I won't take the time to get into now) you need to get your things from her house. When your girlfriend gets there, could she go for you? That way, you could get back home intact, and not have to face your mom.

I hate the thought of you out there all alone like this--but I'm glad you thought to reach out to us. You know we're all here for you. Hang on till your girlfriend gets there--it's all going to be ok.

Stay in touch :)

Thanks, I realise Im not rational.... however I'm trying not to do anything irreversible but I feel so betrayed. I'm second guessing my paranoia to the point I think I'm paranoid about being paranoid?

I'm finding it really difficult to hold a thought for more than a minute or so... and a bit of an emotional wreck... if I go back to the house I am sure I'll say something I later regret... I feel really nausious over the whole thing... and if I ask my aunt who would understand I am just driving a further wedge between my mom and her last living relative who actually talks to her.

I'm really angry as well but I know that my normal way of dealing with being angry is to just withdraw into myself... if I allow myself to go into shutdown mode then I really don't know what will happen...Im pretty much likely to end up getting arredted or something for acting strangley .... what I wanted to do was just walk off into the countryside and curl up somewhere... it really took a lot of convincing myself that this was a utterly stupid thing to do... especially In February... so instead I walked to the nearest town and bought some loperamide and ranitidine (since I can't buy onmeprazerole over the counter) ..

The problem is that my hold on rationality is tenuous at least. I'm an expert at "sounding rational" when my brain is messed up.... and there is little seperating cohernet and well articulated sentences and me purely babbling in baby language...??

If this isn't enough the books in front of me are out of alphabetic order....the fact his is disturbing me so much isn't a good sign....

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I wish I was there with you, I'd take you into the countryside to a little B&B and let you curl up until your brain is able to control itself again.

You know that at this point you can not be rational in your thought processes. You have gotten some great advice from others. In addition it can help if you remind yourself that you are on a 'gluten trip', it is self limiting, it will go away. If there is some way you can get off with someone you trust until the effects of this are over that might be beneficial.

You also need to try and deliberately redirect your thoughts. You may be bothered by those out of order books because your brain is trying to give you something innocuous to keep it buzy. Can you find something that will do that?

You are smart and strong enough not to do anything irrational. I have confidence in that from your posts. You know you have just taken a good dose of a very strong psychotropic substance, just keep reminding yourself of that.

(((((((Hugs)))))))

I hope things pass soon.

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If you're still reading, I just logged on, maybe you're already out of the library... I don't have more good advice, I agree the most important thing is to stay as calm as you can.

Would it be possible to go to your aunts and just downplay the whole thing somewhat like "I'm not myself today so don't read to much into this, Mom and I had a tiff so I thought I'd come here to cool off", something like that. That way you'd have a safe place to stay for the night, then tomorrow you can see how you feel.

Man I feel bad for you. Drink lots of water, if you eat, eat something really safe like a banana. I know you know this, but maybe today you need to get told...

Is there somewhere like a local YMCA that would put you up for the night?

I have to go but I'll check the board later.

Pauliina

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Thanks, I realise Im not rational.... however I'm trying not to do anything irreversible but I feel so betrayed. I'm second guessing my paranoia to the point I think I'm paranoid about being paranoid?

I'm finding it really difficult to hold a thought for more than a minute or so... and a bit of an emotional wreck... if I go back to the house I am sure I'll say something I later regret... I feel really nausious over the whole thing... and if I ask my aunt who would understand I am just driving a further wedge between my mom and her last living relative who actually talks to her.

I'm really angry as well but I know that my normal way of dealing with being angry is to just withdraw into myself... if I allow myself to go into shutdown mode then I really don't know what will happen...Im pretty much likely to end up getting arredted or something for acting strangley .... what I wanted to do was just walk off into the countryside and curl up somewhere... it really took a lot of convincing myself that this was a utterly stupid thing to do... especially In February... so instead I walked to the nearest town and bought some loperamide and ranitidine (since I can't buy onmeprazerole over the counter) ..

The problem is that my hold on rationality is tenuous at least. I'm an expert at "sounding rational" when my brain is messed up.... and there is little seperating cohernet and well articulated sentences and me purely babbling in baby language...??

If this isn't enough the books in front of me are out of alphabetic order....the fact his is disturbing me so much isn't a good sign....

If it helps any, I can really identify with the paranoia and just wanting to "check out" of the whole thing.

The feelings of betrayal by your mom have to hurt at the same time. You poor thing, having to deal with this away from home and further, all by yourself out wandering the streets.

I'm glad you got yourself some Loperamide--I remember everything you told me about it :)

This is going to pass! You just need to hold on and let that bit of rational thought come through and listen to it. Let the meds help and drink some water. Do you have enough money left to get a room in town so you can take a nap? The library might not be the best place for you right now--I know when I'm in that condition, it would make my head spin.

This is frustrating!! I want to get in the car and come and pick you up :(

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OK, you guys are my last hope here not to do something really irrepairable....

The short version is that my cousin is getting married and so I'm back in England stopping with my mom who's celiac.

I have been really ill since I arrived, I literally spent most of the last few days in a stupor. My Mom kept getting me food....

Anyway, yesterday I managed not to eat anything and woke up much better ... mom offered to get me breakfast... I actually felt bad because I had been so miserable for the last 3 days ... so I went to get breakfast myself...

I found the "gluten-free" bread and then found out she has been feeding me GLUTEN for 3 days...!

I don't know what to do... I just walked out ... left everything I'm not wearing, my bank cards, passport and everything. I just want to go home to France but my passport etc. is in the house... I walked to a nearby town and managed to get some money from the bank... but its not much ...

My girlfriend is scheduled to land tomorrow, if I had my passport I would just tell her to cancel but I can't get back...

She could bring all my documentation but I still can't get a new passport for a week...

If I go back to my mothers I will say something I don't want ... and I guess if I try and get my passport legally and the police become involved it will be pretty serious....

I am obviously really upset my own mother was feeding me gluten... I still can't believe she would do it but she thinks the 200ppm stuff is OK???? I can't go back the whole kitchen is contaminated...

I even found non gluten-free cookies and stuff ?? At this point I am paranoid enough to wonder if she has been putting them into the food as well..

I really don't know what to do .... The only person I could turn to is her sister... but this is bound to make a further family mess. I'm in a public library now... I will try and come back later ...

Steve,

I SOOOOO wish I was there to help you through this.......

You have to focus on the task at hand. You know that you have been glutened, and the effects that it has on you will only be temporary, and the emotional rollercoaster ride will soon be over. In the meantime, as long as you make sure you are safe and out of the cold, that's what is most important. If the library closes, do you have a shelter or a hostel close by? The next task at hand is getting in touch with your girlfriend, who can serve at the "mediator" in this. Does she have a cell phone for you to call her? Once she gets there and gets your stuff from your mother's place, you will have your bank cards, passport, etc. and you guys can just get a cheap motel for the duration of your stay....... That way you will be in full control of what is around you and the food that you will eat.....

I also recommend calling your mother to let her know you are not in some ditch somewhere. The bottom line is she is your mother, and she may be worried sick about you...... Keep in mind that although she may know about celiac, she hasn't done anywhere NEAR the amount of research you have about it, and is probably totally unaware of what 200 ppm even means! She probably doesn't even know about how even a miniscule amount of gluten can do so much damage to some celiacs..... Even my husband doesn't really get it, which became apparent when he cooked pancakes for his class for Pancake Tuesday and left gluteny pancake flour mix EVERYWHERE in my kitchen, all over my gluten-free containers and everything! GRRRR!!! :angry:

Now, you said you are in a library. That's good because libraries usually have all the info regarding community stuff (i.e. hostels and shelters) until you can get you bank card to get a room......

Please post when you check back in to let us know you are okay.......

Hugs.

Karen

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OK, you guys are my last hope here not to do something really irrepairable....

The short version is that my cousin is getting married and so I'm back in England stopping with my mom who's celiac.

I have been really ill since I arrived, I literally spent most of the last few days in a stupor. My Mom kept getting me food....

Anyway, yesterday I managed not to eat anything and woke up much better ... mom offered to get me breakfast... I actually felt bad because I had been so miserable for the last 3 days ... so I went to get breakfast myself...

I found the "gluten-free" bread and then found out she has been feeding me GLUTEN for 3 days...!

I don't know what to do... I just walked out ... left everything I'm not wearing, my bank cards, passport and everything. I just want to go home to France but my passport etc. is in the house... I walked to a nearby town and managed to get some money from the bank... but its not much ...

My girlfriend is scheduled to land tomorrow, if I had my passport I would just tell her to cancel but I can't get back...

She could bring all my documentation but I still can't get a new passport for a week...

If I go back to my mothers I will say something I don't want ... and I guess if I try and get my passport legally and the police become involved it will be pretty serious....

I am obviously really upset my own mother was feeding me gluten... I still can't believe she would do it but she thinks the 200ppm stuff is OK???? I can't go back the whole kitchen is contaminated...

I even found non gluten-free cookies and stuff ?? At this point I am paranoid enough to wonder if she has been putting them into the food as well..

I really don't know what to do .... The only person I could turn to is her sister... but this is bound to make a further family mess. I'm in a public library now... I will try and come back later ...

I realize that you are very upset and you have every right to be. My advice to you is to go back to your mom's home and not cause any waves at this time. Remember this is your cousin's wedding and it's not fair for her to suffer any consequences because of what has happened beyween you and your mom. There is a time and place to deal with everything in life and at times when we are uspset we do not think in a rational manner. Also, the days before a wedding and a wedding day will never be forgotten, especially for the bride. Make this a happy occasion for you and the rest of the family. From this point on make your own meals and control what you eat. Deal with this issue later after the wedding. I am so sorry you had to endure this but be the bigger person here.

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Thanks to everyone....

The bank gave me enough money to get a room etc. so its not an immediate concern.

Right now I am just trying to get over the worst of the brain fog... and the thought of going back somewhere I thought I was safe is nagging at my paranoia.

Equally its a long story... a long time ago I got my mom off the 200ppm stuff and she was much better... however my mom has just the same reactions as I do... only for me it was more intense due to the long time I managed to be without gluten....

As someone posted the otherday, why does a micro glutening seem worse than a pizza ?

I have my theories .. as many of you know...

anyway my mom has cut herself off from everyone... My father lives close enough to walk... but if I go to him it will start more family problems... my aunt had me on the phone for hours over the last week about how to approach my mother about inviting my father (divorced) to the reception..

They have been divorced over 20 yrs but its the last 3-4 they haven't talked a word and my mom refuses to say why... it coincided with my father's cancer .. He's also not that well ... and on the off chance the 'cold and stomach infection' I thought I had gets to him it wouldn't be great...

Talking rationally to my mom is a pot luck thing... I now realise why since she is eating the codex gluten gree stuff.. I know full well what it does to me... and I now see why she needed the omneparazole ...

My aunt is the only one who keeps making the effort with my mom.

Everyone else has given up.... including my brother who is in his own little world...

I called him and he lectured me on how I talked to mom and how it upset her... great... apart from I can't help it... but he is the type of person who see's my dad but doesn't tell mom... (to keep the peace)...

I think the best thing is to call my aunt... All my numbers are on my phone in the house but Ill get my other cousins work no. and then get theirs... last thing she needs right now I guess so I feel mean dragging her in but I am afraid if I try explaining this that it stands a good chance of blowing up and exasperating things.

You just need to hold on and let that bit of rational thought come through and listen to it. Let the meds help and drink some water
Yep, I just have a hard time filtering things when Im like this... I find it very hard keeping to one thing and then other things flood in... I know from experience that if this happens and I lose control of the filtering I will just shut down...

You know you have just taken a good dose of a very strong psychotropic substance, just keep reminding yourself of that.

Whew... yep the problem is trying to convince others its no good trying to rationalise with me right now, I'm on a bad trip... I tried explaining to my brother, he just told me to get a hold of myself... and act my age... I tried explaining "I'd love to but ..." well he doesn't regard gluten as a psychtropic substance... Realising it myself is a great help so long as I don't need to explain it ....

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Yep, I just have a hard time filtering things when Im like this... I find it very hard keeping to one thing and then other things flood in... I know from experience that if this happens and I lose control of the filtering I will just shut down...

Whew... yep the problem is trying to convince others its no good trying to rationalise with me right now, I'm on a bad trip... I tried explaining to my brother, he just told me to get a hold of myself... and act my age... I tried explaining "I'd love to but ..." well he doesn't regard gluten as a psychtropic substance... Realising it myself is a great help so long as I don't need to explain it ....

I know it is hard to do this but I wouldn't even try to explain to people right now what is going on. Can you go to your room and just tell others that you are ill and leave it go at that right now? The less external stimulus right now the better. You should be able to think more clearly soon but for now if you can isolate yourself so that you don't have to deal with interpersonal relationships it might be a good idea.

Perhaps grab something funny and silly a book or a video and I hate to put it this way but hide for a bit.

You can always explain what happened later when you are better able to communicate.

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I'm really sorry you're going through this Steve :( Lots of good advice has already been given.

...but what fiddle-faddle said struck a chord with me

Is it possible that your mother was not trying to harm you, but believed all these foods would be safe for you? In which case, you can't really be angry with someone for being stupid, they can't help it if they're stupid. You just can't put yourself in a situation where you trust her again.

In the UK coeliacs are told by their doctors/dieticians, Coeliac UK even that Codex (200ppm malarky) is safe, and I reckon if your Mum's been ok with it she'd have no reason to think you wouldn't.

It's only the more discerning of us through the internet that have learned one size does not necessarily fit all - all coeliacs are different (despite what CUK say). Added to the fact that your body is used to being (as near as dammit) 100% gluten-free I'm not suprised you are reacting.

What I'm trying to say is maybe your Mum genuinely thought she was feeding you 'safe' food.

...and goodness knows it can be trying for any adult going back to stay with their parents without the added complication of food issues :rolleyes:

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What Ravenwoodglass said - I agree the best thing to do right now is to get to a quiet place and just rest. Deal with all of the mess later. You can't have all that external stimulus right now.

Pauliina

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I realize that you are very upset and you have every right to be. My advice to you is to go back to your mom's home and not cause any waves at this time. Remember this is your cousin's wedding and it's not fair for her to suffer any consequences because of what has happened beyween you and your mom. There is a time and place to deal with everything in life and at times when we are uspset we do not think in a rational manner. Also, the days before a wedding and a wedding day will never be forgotten, especially for the bride. Make this a happy occasion for you and the rest of the family. From this point on make your own meals and control what you eat. Deal with this issue later after the wedding. I am so sorry you had to endure this but be the bigger person here.

This is true... luckily my cousin was actually married already (In the Ukrian) and this is the "family" reception but its still not fair on them...they are arriving tomorrow so I hope my aunt or uncle can intervene before that...

In the UK coeliacs are told by their doctors/dieticians, Coeliac UK even that Codex (200ppm malarky) is safe, and I reckon if your Mum's been ok with it she'd have no reason to think you wouldn't.

Yep I know but I have told her again and again it makes me ill and that I believe it makes her ill.

The night before I found some Walkers Poppadoms and read the packet... and saw the "suitable for celiacs" .. I was almost going to risk one when I saw the ingredients contained barley malt...

I brought this up last night but she was still going to give me the wheat starch bread ...

This is partly what really hurts.... I told her I didn't eat it, I wasn't feeling well enough to argue but I told her and this morning she starts making me toast from the wheat based "gluten-free" bread...

I feel like she thought she was testing me....

Even if I am wrong this still seems a terrible thing to do??? Shouldn't you respect my descision?

I guess she could have just forgotten?

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Nothing better to add. Only don't make any big decisions until you are completely gluten free and your brain works again.

Now that you know that her view of eating gluten free and your view of it are different, don't eat her food. Ever.

Try not to feel negative towards your mom. Maybe she believes the 200ppm thing and eating that much gluten has made her so brain fogged she can't think properly anymore.

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Hi Steve -- I haven't been on the forum much lately, but Karen called me to tell me you're in trouble -- you know us "old-timers" on the board have to stick together!

I am so sorry about what happened at your mom's. I agree with EVERYTHING Karen said. I think having your girlfriend get your things once she gets there is a very good idea. I'm sure you feel like hell physically and mentally right now. You do have every right to be furious with your mother. Don't let the gluten paranoia kick in too much, though.

I do wonder if your mother, since she obviously is ingesting a LOT of gluten, even realizes any longer the effects of gluten-contamination. Neurologically she may be STAYING in a gluten-stupor. At that point, she isn't going to either know or understand what is happening to her own body, and will continue to cross-contaminate and/or simply ingest gluten on a regular basis with no regard to it's consequences.

I don't think you need to go back to her house. You're not in a condition to approach her on any level at this point, much less to address what has happened to you as a result of staying there. Wedding or not, you can't subject yourself to an environment that you KNOW will make you have further symptoms. If you went back at this point and stayed there, given even the environmental contamination, you may have further paranoia, etc. That could end up disastrous.

My advice is much the same as everyone's: try to stay in a hostel, whatever, until your girlfriend can get there. You said that the bank let you have money -- do you need more? I could wire money to you if you need it. When is your girlfriend scheduled to come in? Does she need to come in before that, and does she have the ability to make that happen?

Physically, once you find a place to stay, try to flush the toxins out of your body. Once your head clears from the glutening, you will be in a much better place to deal with this. I agree with you about not confronting your mother right now -- First, the possibility to do irreparable damage to your relationship with her. Second, you are still in a gluten induced fog, so you may not be thinking or communicating rationally with her and SHE probably wouldn't "get" what you are trying to say if she has been continually ingesting gluten. Save that conversation for a later date.

Please keep in touch, please let us know what you need. I wish I could be there to help you right now. You have been such a blessing -- I would like to return the favor.

Take care of you -- that is first and foremost right now.

Love and Hugs to you,

Lynne

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I don't have any more advice than what everyone else has given you. I'm just so sorry you're going through this without someone there with you. I'm glad you were able to get a room and can hole up for a while until your girlfriend gets there. Until then, here's a virtual hug - <<<HUG>>> .

Everything is going to be okay.

Nancy

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Sorry to hear about this Steve. Try and keep positive thoughts even though its hard. Can you put on some music? Try and keep talking about it to others before talking to your mom to get the anger out. I hate to give any other advice because you probable know what works and what doesn't by now. Just know I hate that this has happened and feel bad for your going through this.

Gail

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Steve, sorry your mom's been glutening you. Everyone's given you good advice, especially the advice that she probably didn't make you sick on purpose. I think it's a good idea to stay away until the gluten isn't affecting your brain anymore. You don't want the gluten to do the talking ... it will be hard enough for you to deal with when you have your brain back.

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Wow, I'm just so sorry this has happened to you!! Nothing of value to add, just wanted to say I'm so sorry!

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Hugs Steve. I don't have any different advice than what has already been given.

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STEVE, JUST WANTED TO ADD MY SUPPORT AND HOPE THAT YOU WILL REST ALONE IN YOUR HOTEL AND GIVE YOURSELF SOME TIME TO HEAL.

I KNOW SOME MAY THINK THIS IS NEGATIVE THINKING..BUT I LOVED MY MOTHER DEARLY AND WHEN WE WOULD REALLY COME TO A BY PASS.....I'D BITE MY TONGUE AND THINK " IF SHE DIED WOULD THESE BE THE LAST WORDS SHE'D HEAR FROM ME"

IT WOULD HELP ME KEEP MY MOUTH SHUT WHEN TRYING TO KEEP THE PEACE AS WE BOTH DEARLY LOVED EACH OTHER.

I DO THINK YOUR MOM FEED YOU AND WAS THINKING SHE WAS HELPING.

PLEASE KEEP US POSTED.

WHEN YOU GO TO THE LIBRARY DO A PRINT AND GO TO THE HOTEL AND CURL UP WITH THE PAPERS AND THINK OF THEM AS 'HUGS FOR HEALING' FROM YOU FRIENDS.

JUDY

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That really sucks, its normal to feel paranoid abut being paranoid. I have been there as well. Go sleep it off in your hotel if you can. Maybe take a hot shower, try to relax and crawl into bed.

-Laurie

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