Isolation-first Timer Here

[lovetolaugh]

Hi there,

I am a wreck and I have no where to turn. New relationship and first time dealing with celiac. My boyfriend has told me how bad he gets when he has gluten, but I never expected such a life altering situation. It's been 16 days and he has hut himself in his apartment and cut off all communication to his family, friends and business partner. Is this common? He hasn't paid bills, been to work or even picked up the phone. Finally the police were called to check on him because no one could get in. I'm scared by this behavior. I don't want to say anything unsympathetic but everyone is very concerned. How do we let him know we care about him and are not disregarding his sickness?

Any advice would be helpful.

Thanks!

[Guest nini]

depression is a very common symptom of being glutened, and yes it CAN be that bad... he needs to be so very careful to make sure he is not getting any gluten at all, and that he is taking care of himself. But it's hard to do that when you get into a depression and cut yourself off from the world.

I don't know what to tell you to do other than to try to be patient and understanding. You may want to search this site for some safe foods that you could take to him to make sure he is eating ok. But be very aware that cross contamination is an issue, so if you try to make something yourself, feel free to ask on this board for help.

Good luck with this and kudos to you for wanting to find out more about Celiac.

[Lisa]

Sweety:

One of the symptons of Celiac is depression. There are over 200 symptoms. When you have Celiac, the things that you need for your body to function normally as all out of wack. In your short post, it may seem that his system is truely out of wack and perhaps needs medical attention. He may be dehydrated, his sugar may be messed up, his thyroid out of range and perhaps the lack of food to his brain may effect his functions.

I would suggest to you, or contact his parents, or contact some immediate heath care services and get him into a hospital where he can be monitored.

I don't mean to scare you, but this does sound serious. Get him somewhere where he can get some blood work done and see where he is. Don't wait.

Hope you can find helpp asap.

Lisa

[lovetolaugh]

He's so stubborn and hates doctors because he was misdiagnosed for a year and a half. He, like so many patients it seems, had to bring it to their attention. He is usually very good about his diet, but because of his job is eats out a lot. Some how he does it, but he has a few big illnesses a year(from what I've been told). If I can manage to get him to a doctor, what would they do for him? I know he hasn't been in years.

[Guest nini]

I don't trust Dr.s either after being misdiagnosed for a very long time too... as far as what a Dr. could do for him, possibly make sure he's not got some other issues going on, like Momma Goose mentioned.

Is he responding to you at all? Or is he just completely withdrawn?

I understand having to eat out because of business, and there are ways to do it safely, but sometimes even the best intentions still lead to accidental glutenings and with me that means weeks of feeling absolutely terrible and not wanting to deal with the world. So I can understand where he's coming from.

What would mean the most to me (and what did mean the most to me) was when my best friend came over and cleaned my house for me and went through my pantry and cooked me something good to eat. When I get like that I don't feel like making anything to eat and everything is an effort. So if there is anything that he will accept anyones help on, that might be a good thing.

So I guess the first question is, do you think he'd be receptive to you contacting his parents and or friends and doing something nice for him like bringing him food or helping with the bills or other tasks? He probably feels really alone right now and is in the middle of what my mom likes to call a "pity party"... (I'm just guessing based on my own experience with accidental glutenings)

[loraleena]

It sounds like it is not worth it for him to eat out. Would co-workers, clients be understanding if he brought his own little cooler of food. His mental health must take precidence.

[lovetolaugh]

Thanks everyone for your advice-this and speaking with his friends and family has made me understand things alot better. To be honest, I took it all very personally. Now I realize I cannot do that because that is not the case-thankfully!

As for eating out at work- Seeing that he is a part business owner and travels to events, he is considering having a catering service handle his food. I mentioned the contamination issue and he said the chef was very aware....I even offered to make his food for him, but even though it may sound great to him he wouldn't want to "put me out." Even though he didn't exactly come out and say it I can totally understand. I guess he hasn't totally figured out that I am sticking around regardless and willing to help no matter what it takes. He says things like "I thought you'd be sick of me by now." He has no idea that I may have moments of weakness, but I'll never give up on him. Guess that'll take time for him to see that. In the mean time, I just want to be as helpful and supportive as I can. We are working on a doctor and he has been very receptive! making headway:)

This sight and you all have been very helpful,

Kate

[mouse]

That is so great Kate that you are beside him on this. He probably is also finding it hard to believe. We have members on here that have had friends, family and loved ones walk away because they did not want to deal with it. You may find that someone has walked away when he got ill or even got his diagnosis. Good Luck to you both and am glad you are finding a doctor. Because he should still have his thyroid, sugar levels, viatamins, etc. done.

[RKB-MD]

You sound like a wonderfully supportive person. It is very special to have a person like you who is willing to do whatever it takes to keep your partner healthy.

Celiac Sprue is a two-edged sword. Basically the damage done causes the person to malnourish. The lack of essential nutrients can lead to all sorts of metabolic problems. Psychologic issues can follow both from the metabolic derangements, and from the stress from the primary problem.

That said, it's time to put the "pointy black hat" on.

Keep after your man. Don't be a nag - you sound too nice to be like that anyway. But remember, people with a chronic condition can interpret any help as "meddling".

He must remain gluten-free. You are helping him, but he needs to help himself as well. He needs to take an active role and learn what he can eat and what he cannot. He needs to learn how to order out, especially as this sounds like a large part of his professional life.

Search for my other postings for all of the mean and nasty things that can occur if he doesn't follow his diet. This is, as you obviously know so well (super kudos to you!), essential to his physical and mental well being.

It is a hard life to follow, especially as 1)It sounds like it is coming later in life; 2)Is such a hard diet to be strict about; 3)The changes are slow and not completly obvious until "slip ups" occur.

Keep up the good work, and good luck to you both!

[queenofhearts]

I really feel for you, you are clearly working really hard to understand & support your boyfriend. I think it will be easier for him to make positive decisions for his health with someone like you backing him up. In my limited eating out & travel experience since diagnosis, I've found it very hard to be entirely safe when I'm not doing my own cooking, so I think bringing his food would be the way to go. There are some chefs out there who specialize in allergy-safe food, so I'd seek one out if I were you.

Leah

[Kyalesyin]

My wife is looking like she's headed the exact same way. We only found out six weeks ago- two weeks after our wedding, that she's Celiac. She's pretty damn devastated since we're both pizza fiends, and getting her to accept that this is a lifelong thing is hard.

Patience is all you can really offer, and sometimes you gotta be cruel to be kind. As people before me have said, put your foot down, clear out the cupboards and nag until they get the point. It is trying. Its driven me to tears too. Hold on to the fact that the situation will get better.

[MistressIsis]

Thanks everyone for your advice-this and speaking with his friends and family has made me understand things alot better. To be honest, I took it all very personally. Now I realize I cannot do that because that is not the case-thankfully!

As for eating out at work- Seeing that he is a part business owner and travels to events, he is considering having a catering service handle his food. I mentioned the contamination issue and he said the chef was very aware....I even offered to make his food for him, but even though it may sound great to him he wouldn't want to "put me out." Even though he didn't exactly come out and say it I can totally understand. I guess he hasn't totally figured out that I am sticking around regardless and willing to help no matter what it takes. He says things like "I thought you'd be sick of me by now." He has no idea that I may have moments of weakness, but I'll never give up on him. Guess that'll take time for him to see that. In the mean time, I just want to be as helpful and supportive as I can. We are working on a doctor and he has been very receptive! making headway:)

This sight and you all have been very helpful,

Kate

That is a BIG part of it. I hate the fact that I have to inconvienence everyone around me. My BF is very good about telling me that I'm not & that it's about staying healthy & doing what I have to do. And he's never even seen me have an episode!!! Especially at first when no one seems to believe you or understand how critical it is that you don't ingest ANY! I actually had a family member get mad at me because I got to go 1st in the Thanksgiving buffet just so I wouldn't get CC!

You are a fantastic person, keep poking at him.

[gfp]

Wow your BF sounds like a lucky guy .............

You wouldn'y believe unless you read them all the posts here from people who's significant others refuse to accept celiac disease.

Contrary to a few posts I don't think anything is seriously wrong with your BF... although I can see why you are concerned. I can't give you black n white answers but I can tell you a few things that might help.

1) Depression is a common symptom of celiac disease .... for several reasons..

Firstly gluten belongs to a class of drugs called exorphins, these are drugs that mimic the bodies own mood control system via endorphins. In a celaic the "barriers" can be damaged or "leaky" between the gut and blood and/or blood/brain. In other words the gluten components can slip though the normal barrier ... the regualtor for this is zonulin ( Open Original Shared Link )

When gluten acts as an exorphin it binds to the endorphin receptors, just like opiates ... however unlike opiates it fits poorly and damages the receptors. When it finally is removed the receptor can no longer accept endorphins so the bodies mood control system is screwed up.

I personally believe that many of the symptoms of glutening are actually not from the glutening itself BUT the withdrawal phase. That is once these receptors are damaged the symptoms can continue without gluten until they are repaired and that takes time.

One thing I have found that helps ME.... is taking a load of opiates... obviously we have to function so one opiate which is custom made not to get you high is loperamide ... commonly sold as immodium.

I find particualrly the sub-lingual works well, I guess this gets it into the bloodstream as well as digestive tract. The liquid form apparently contains gluten so that's out so its capsules or sublingual..I often do both as SOON AS POSSIBLE (I carry sublingual around just in case). My theory is that letting the loperamide bond to the endorphin receptors protects them against binding to gluten. This is all theory because noone has clinically trialed it .. but the theory is sound and normal doses of loperamide have no real negative effects... heck it might be placebo... but seriously who cares! (The fact they also control the explosive diarrea and cramps is a bonus)

Secondly post diagnosis is a fragile time. Guys and high achieving guys inparticular feel immasculated by the complete removal of control. As guys we want to be able to do something useful to help ourselves and in most cases the information we get from MD's is simply confusing and dismissive. By this I mean we are not given the information we need to be constructive BUT it is in our nature to want to do something.

(before the ladies get het up here I'm not saying women don't feel this too, I'm just saying it is amplified for guys)

Thirdly, as is pointed out nutrition also plays a role in depression. One of the easiest and constructive things to do about this is supplimentation of vitamin B6 and B12 ....

Fourthly, the symptoms are somewhat distasteful. Its not the sort of thing most people want to discuss with a significant other.... (or even doctors) ... Let me just say this... I have been "caught out" trousers round ankles in public restrooms cutting away my underwear..... not once but quite a few times... yes, its funny... actually no its not.. but eventually you just gotta laugh! This very feeling of lack of control adds to the depression.

Fifth .. Its REALLY TIRING ......... I don't get really bad cramps .. mostly it just feels like someone has put one of those electric stomach exersize machines on by lower abdomen .... I swear somewhere int here is something trying to communicate in morse code.... tap..tap.... da da de da da..... Its like chinese water torture .. it doesn't actually HURT like a broken arm or so its just a CONSTANT NAGGING ...

This brings me into

2) Other effects of gluten

Its well documented that many autism spectrum people benefit from gluten-free diets and far more than the statistical average have celiac disease.

On top of this many of us exhibit some or all of the personality traits of these "diseases", I say diseases but they are no more diseases than being a different skin color... you are just born with some differences to the statistical norm. Neither is this a fixed scale, much as psychaitrists would like to pigeon hole people ... its more a sliding spectrum with neurologically typical at one end and non NT at the other, indeed were the world not run by the majority NT's then the majority would see that there are an equal number of NON NT's at the other end of the scale.

OK... why am I telling you this.....???

Firstly, you might not like my analogy..... please just read it anyway because the analogy is just an analogy ...

Well imagine its a sliding scale, a bit like sexuality where some people are born 100% hetero-sexual and others 100% homosexual... the majority of people however exhibit some expression of one or the other, even a tiny part. (I watched Kinsey, the film again so that's the reason for this analogy) however if you want you can extend the analogy to say a celaic who is diagnosed in mid-life is a bit like some middle aged married guy finally finding out he's gay... suddenly everything is turned upside down and the world where we live is equally shaken about and turned upside down.... for instance suddenly we a part of a minority ... in many cases we have previously cracked a few jokes about "fad eaters" and "health freaks" and suddenly we are plunged into a world where we need to read every label and give precise instrictions to servers.... add to this in many cases our families and closest friends don't understand NOR WANT to understand.... because what we are doing is culturally abherent ... all our lives we have been taught WHEAT = HEALTHY ... WHEAT = HOMELY and even WHEAT = BODY OF CHRIST..... its buried deep into our cultural memory....

If you don't like the above analogy then think instead of a lifelong Republican from a family of Republicans who suddenly starts thinking universal healthcare and education are important human rights for everyone. If you don't like that just swap round Republican and Democrat....

All our precepts are suddenly challenged ... wheat is no longer healthy, its a poision but all the people we know laugh... because they have yet to see the light... except.... its not like they are going to see the light because we only have perceptions that WHEAT=POISON because we were born in a minority and all our families and friends are in the majority.

Its a helpless situation.... so lets add this together....

We are as celiacs susceptible to gluten altering our mood and feelings. In many cases (like for me) a glutening pushes me into a direction along that spectrum ...

Now image just for a second that glutening did the same to our sexuality..... imagine a fundamentally straight guy who wakes up next to some other guy because of something he ate? Or if you like some hardline Republican/Democrat waking up having just signed a set of documents for something he finds abherent.....

THIS IS WHERE ANALOGY ENDS.....

This is what I do when glutened..... I say things I would never normally say and offend people I would not usually care to offend...I push away people I love and love me because I can't cope with the sensory overload it generates.....

If you search this forum for "brain fog" you will start to see.

For me its almost like an "inbody-outa body experience" .. its not a exactly looking down in myself situation but more a feeling I'm controlling myself by remote control and the batteries are almost done....while at the same time I'm trying to write a dissertation or something.

Actually controlling myself is a lot of effort... mostly I am lost in an inner world .. melancholy and from others perspective non-communicative but my body seems to have an inbuiilt autopilot.... with the slight course corrections it functions, answers questions and picks up drinks., eats etc.... BUT what it cannot do is enagage in meaningful conversation... to do this I must stop the other task and pull myself out of this safe world and into the real one. This takes effort and is incomplete..... what is missing ?

What is missing is built in safeguards..... I say things I know are true without any conception of controlling it...

an example with work might be telling my boss what i think of his idea.... instead of tactfully finding something else or changing subject or finding the one saving grace in his idea......

Don't misunderstand, I can still do this BUT the effort concerned is enormous....and it feels like walking the length of the Rockies to pick up 1c I dropped when I walked the other direction. The effort just seems insurmountable compared to the reward ... and when I think about it I can find a 1c coin on the street so why go back and walk 1000 miles to try and find the one I lost.... so in effect I say thhe think and think about deferring the consequences.

So imagine his perspectives are screwed... he knows withdrawal is not good but he also knows the consequences are not immediate..noone cut off the gas or electricity YET and when they do he can pay and be reconnected.

So in the case of your BF.....

It sounds like he is withdrawn .... BUT he proably doesn't want to be completely alone BUT he finds being completely alone easier than dealing with conversation.

Keep after your man. Don't be a nag - you sound too nice to be like that anyway. But remember, people with a chronic condition can interpret any help as "meddling".

Taking the advice of RKB_MD ....I agree but being a nag to me when Im glutened just means talking to me....

I don't really want to have to be completewly alone (though I don't mind) I just don't want to have to deal with the stimuli and I want to offset and defer the consequences....

In many ways I can just say things to shut up the person speaking.... because its annoying to have to concentrate to converse.. so I just say something which will end the conversation in a row.... then I can sulk and be alone!

This IMHO is what your BF is doing now.....

IMHO.... send hima note or Email .... tell him you think he needs time to adjust and if he doesn't want to discuss it then that is also fine. Tell him you simply want to be with him and WILL MAKE NO DEMANDS on his time/attention until he is ready. (you need to be prepared to do this obviously).... and if he wants to spend a week or a month just being a couch potato that's fine.....

Explain about withdrawal ... let him see an end..... tell him that the B complex will speed this up and perhaps immodium will offset it slightly.

Practically.. DO NOT FORCE HIM TO DEAL WITH LIFE.... he will push you away.....

If you have the money, pay the bills for him .... (he can pay you back later) but don't force him to deal with them.... REDUCE HIS SENSORY OVERLOAD..... throw out all his junk mail .....he doesn't need to deal eith it... DO NOT PILE UP LETTERS ....

Take the important stuff... write out the cheques to pay and get him to sign.... he probably won't even care to check! If he doesn't want you throwing out mail then stick all the mail into three boxes....

URGENT..... 'important non urgent' and junk...... he will probably have several priorities himself.... BUT he will not want to discuss the details!

I hope that helps cast a perspective ...........

I hope you can see some practical things you can do..... you sound like a lovely girlfriend to have and your determination to help just needs making less imposing for him.

[jerseyangel]

Yea Steve, Celia's right. That was great!

I'm fascinated by what you said about the Immodium. So, it actually helps in other ways than just stopping D? Yesterday, I was trying out a new hair salon--of course, my stomach began to act up just as I was about to leave the house. I popped 2 Immodium caplets, I really think both for the cramping and the piece of mind that I wouldn't be "caught" while getting my hair cut.

I also carry some with me at all times

[gfp]

Yea Steve, Celia's right. That was great!

I'm fascinated by what you said about the Immodium. So, it actually helps in other ways than just stopping D?

Well the theory is sound, immodium binds to the endorphin receptors as does gluten....

Its known gluten damages them.... and it seems logical that if they are already bound to immodium then they won't bind to gluten....

perhaps its only placebo ......

Yesterday, I was trying out a new hair salon--of course, my stomach began to act up just as I was about to leave the house. I popped 2 Immodium caplets, I really think both for the cramping and the piece of mind that I wouldn't be "caught" while getting my hair cut.

I also carry some with me at all times

Yep well if it works, it works! It seems to work for me but depression and withdrawal are SO SUBJECTIVE! It definately controls the D and perhaps being in control of that helps all by itself or perhaps they actually work beyond placebo.... and since immodium is about as harmless as drugs ever get its not a bad start IMHO....

In the same light, some people say they don't experience withdrawal....personally I think they just can't tell the difference in timing... some people drink heavily and stop for no reason .. for instance the bar they used to hang out in closes... and they just go out less or have a kid or ....

Some people recognise an addiction, others feel nothing at all but the body is acclimatising and adjusting non-the-less. I don't feel much in the way of altitude discomfort below 15,000' ... and certainly don't suffer altitude sickness ... at 10-12,000 feet I'm happy to go running and do stressful activity like very extreme skiing and climbing 2000' or more to ski or board down some virgin snow.... many people find a climb at this altitude at my pace impossible... I have freaky blood apparently.... HOWEVER.... that doesn't mean that 2 weeks later my body hasn't adjusted....

I personally don't feel much, I have been with people who have altitude sickenss at 10,000'.... I can't even imagine that! However if I ran a 10k at 10,000 feet my times would be worse ... and 1 week later would start to improve .... so just because I don'ty feel it doesn't mean its not happening.