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Sometimes It's Hard ...


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#1 Alex163

 
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Posted 17 October 2011 - 08:46 AM

Hi! I'm a new user with a question. I'm the spouse of a person with Celiac and since he's been diagnosed, life has been easier for us. Occasionally, he be "glutened" and he becomes a different person. I know there's an emotional effect as well as physical, and usually I'm good with it. He's also become more aware of it and is getting a little better at dealing with it. He'll mentioned in advance that his mood is changing and he's going to take a little alone time to deal with it, etc. Unfortunately, when he's hit hard (for lack of a better word), he's becomes almost cruel. Well - no - he is cruel. He'll deliberately search for the most awful things to say to me, something that will shake me to the core. It usually doesn't stop until I'm in tears or have to leave the house. Then he'll walk away for a while and come back seriously apologetic, sometimes even tearing up himself because he feels so bad. I'm a strong person and 9.9 times out of 10 it never gets to that point, but it seems to hit him even harder during Holidays or birthdays, which (emotionally) makes it even worse. I'm sure it's because there's so many events during these periods and it's difficult to stay gluten free since so many people don't understand what exactly gluten free is.

My question is do any of you feel this same way? I mean, does this happen between you and your loved ones occasionally, too? It sometimes happens in front of friends and family which makes it worse, because I know he can't help it, so I don't make a fuss about it. It's hard to explain to people what's going on, so they just think he's abusive (which is SO far from the truth), and that I'm must be weak (which is SO far from the truth!). I guess I'm just searching for some support from people who go through this sometimes, too. My husband is a wonderful guy and there's no danger of our relationship ending over this - it's just sometimes difficult to get "beaten up" every so often when every other day is so fabulous!
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#2 kareng

 
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Posted 17 October 2011 - 08:53 AM

I'm wondering how he gets glutened so much?
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#3 Alex163

 
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Posted 17 October 2011 - 09:19 AM

Our business requires a lot of travel. We just got back from Germany and it's sometimes difficult to explain gluten free. We've learned as many words as we can in as many languages as we can, but - man - sometimes it hard here in America to explain gluten free, let alone a different Country. When we're home, it's easy - when we go out, we frequent the same restaurants, all of whom understand his diet and will make sure his dishes are gluten free. Asia is especially difficult because of the soy sauce issue.

He tries to order basic, safe dishes, but, as I'm sure you're all aware, you still occasionally get the salad where you can see that they simply picked off the croutons and thought that was enough. When I'm there I make sure he gets fresh stuff and doesn't eat the contaminated stuff, but when he's with clients he'll go out of his way not make a fuss. This happens a few times a year - it's definitely not as common as when he was first diagnosed.

I'm just feeling a little sensitive today, I guess and this last episode really got to me, because it seems to be lasting a lot longer than usual. It's been almost a week, and usually the emotional part only lasts a day or two for him.
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#4 AVR1962

 
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Posted 17 October 2011 - 09:32 AM

I am most certainly more irritable and at times I have wondered why I have gotten so frustrated. To me it is almost like having a slight flu bug in a sense and the energy you expend to do whatever is every ounce of energy you have. You don't feel well and then things, maybe little, can come along and it's too much.

How are his vitamin levels? It's not just glutens that can cause trouble.

We were supposed to go to a function this past weekend but my body hurt, not from gluten, and my attitude was low. I knew I would not be good company so I stayed home. Sometimes I don't even want to talk to people. 10 days previos to this I had cut back on my vitamin supplements which flared alot of my symptoms back up. 3 days back on my vits I started feeling better and my symptoms started going away again. The body has to have a balance to help with all functions.
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#5 Alex163

 
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Posted 17 October 2011 - 09:45 AM

That's a good idea - he usually starts a vitamin regimen but then travels, forgets them and stops. I'm going to look into this.
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#6 srall

 
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Posted 17 October 2011 - 11:03 AM

I think the vitamins are great advice. I almost always forget them when traveling then really suffer, mostly from fatigue and muscle pain. Or could be hidden gluten since I'm traveling. At home I mostly cook for myself.

One of my biggest signs that I should have been gluten free could have been the rages I felt. I talked to my gyno about a month before I went gluten free. On top of the usual concerns I had, which were things that never seemed to concern her, like migraines and going to the bathroom 6 times a day, I was becoming very alarmed at the rage I would feel at my daughter and husband. She initially wanted me to start taking Xanax but I refused. She told me to exercise an hour a day. Ultimately, my mom and really good friend talked me into a diet detox which included going without gluten so I did finally figure it out. But from your husband's perspective, I'm telling you it's scary and feels uncontrollable. Sometimes I had to think of how I needed to act one step at a time.

He does absolutely need to figure out a way to not be glutened. I don't know how to advise this when you are traveling. But I can't imagine being on the other side of the abuse, even if he can't "control" it.
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#7 Alex163

 
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Posted 17 October 2011 - 11:07 AM

Rage is a good word for it. Sometimes I would swear that he hates us! Funny thing is, our Son has been living with it forever (he's 17 now), but I think he's a much better person than I am. He just calmy says, "Mom - we know what this is, he doesn't mean any of it. Just ride it out, don't fight back and it'll be over soon." Then he points out that it only happens a few times a year now, so it's so much better .... What an angel he is.
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#8 srall

 
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Posted 17 October 2011 - 11:48 AM

17 years? That's a long time to be on the other side of that rage. My daughter is also gluten free (for a year now.) She is 8. Her anxiety was off the charts before we took her gluten free too and she is sooooooooooo much better now. I had to talk to the pediatrician about getting her a psychiatrist before we figured it out.

I really hope for you and your son's sake that he can become 100% absolutely gluten free. I bet within one or two months you'll be living with a new man. But watch the vitamins and exercise too. Those are very key in mine and my daughter's healing process.

No one should have to live with that. (And I'm speaking as the person with the rage)
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#9 carecare

 
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Posted 17 October 2011 - 12:24 PM

I never put two and two together until reading your post. My husband is the same way to a point. He used to get these rages...where if I said or did the wrong thing he'd just flip out into a rage...then later be so apologetic not knowing why he reacted that way. It would always bring me to tears. We are not a fighting kind of couple so when this would happen I would try so hard not to let the kids hear or see and if they did I felt even worse. Now that he's been gluten free I don't think it's happened at all. Wow...why didn't I think about this before. :huh:

Anyway, it's so hard not to take it to heart though...and I remember telling my sister that I felt his rages were something medically wrong when they occurred. Really, they were. We've been married for 18 yrs...and he's been gluten free for the past 2. The rages started probably in the past 6 yrs. Maybe once or twice since gluten free the past 2 yrs....so I bet he was glutened when it happened. I remember him telling me he just would feel off upon waking and that it was like he was waiting for me to do something so he could release that rage...yet it wasn't about me at all but about what was going on inside of him the whole time.
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#10 Alex163

 
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Posted 17 October 2011 - 12:57 PM

My Son is 17 yrs. old., but we met when he was 5 and married when he was 9. We didn't live together, so none of this was an issue because we weren't together every minute. Once we married it erupted. I wasn't really scared, just horrified at the thought that this new marriage might end badly. I certainly couldn't raise my child in this atmosphere. We definitely had some serious issues and seeeerious fights because I wasn't really the kind of person that would take that kind of stuff. We weren't a couple who ever really fought either, so these fights always kind of took me by surprise. Once he didn't speak to me for 3 days because he said I bought hamburger that wasn't lean enough and if I loved him I would know this. I'm making him sound awful and I don't mean to - he's a wonderful, amazing man, I'm just relating to what some of you have said about feeling so irrational and angry over things that normally wouldn't matter.

Anyway - as the fights escalated, I actually started to calm down and just sit back and watch. I noticed that when he got this way, he wouldn't even look in my eyes. He would pace and rant, and follow me from room to room. Odd behavior. When we were in a "real" argument - one of us would mention what was bothering us, we'd talk about it and move on. Period. Maybe an hour of debate at best and then it was over and we would hug. It finally escalated when he threw my parents out of our house over Thanksgiving for feeding our dog a piece of turkey. I threatened to leave. Instead I researched. I told him that I thought it was a gluten allergy and made him an appointment. He went, and three years ago was diagnosed. Now we only have issues when he gets a serious hit of gluten - once it was in medication. We were still new at it, and didn't realize. But he had 10 days of this medication! Yikes.

I've always wanted to join some sort of forum where I could talk about this stuff, because it's certainly not something you want to tell your neighbors ... but it's nice to hear that some of you can relate, because even though you think you're strong enough to handle it, it still rears it's ugly head periodically and it's wonderful to be able to talk about it and not just stew all day be yourself and think your world's at an end.
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#11 love2travel

 
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Posted 17 October 2011 - 03:22 PM

When traveling why not use restaurant cards? They come in several languages. You can print them, laminate them, give them to the server or chef. They are very clear on what you can/cannot have, cross contamination, etc. There are a few websites from which you can purchase or print them. We travel to other countries with them and so far so good! :) When traveling we also frequent markets to purchase fresh fruit and veg.
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#12 pricklypear1971

 
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Posted 17 October 2011 - 04:23 PM

Have y'all tried talking about this and coming up with a way to quickly remind him he's reacting to gluten when he exhibits this behavior? Like a safe word or phrase?

I know when I'm in the middle of a DH flare or having a panicky/heart racing/brain foggy moment I'd love for someone else to "see" it and remind me to calm down, sit down and breathe and SHUT UP. Because I can quickly fly off the handle and the closest person is the best target. I'd walk around muttering "Rumplestilskin" if it would help.
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#13 Lisa

 
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Posted 17 October 2011 - 04:30 PM

I do remember being a bit "high strung" when glutened, which is normal.

But, there might be more here. Would he be willing to have his testosterone checked. It's not uncommon for it to be off with Celiac Disease. And it could make a tremendous difference in his mood.

Google - Low Testosterone - Celiac Disease. You might be surprised.
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#14 Alex163

 
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Posted 18 October 2011 - 04:18 AM

When traveling why not use restaurant cards? They come in several languages. You can print them, laminate them, give them to the server or chef. They are very clear on what you can/cannot have, cross contamination, etc. There are a few websites from which you can purchase or print them. We travel to other countries with them and so far so good! :) When traveling we also frequent markets to purchase fresh fruit and veg.


I've never seen them - do you know where I can get them? Great idea!
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#15 Alex163

 
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Posted 18 October 2011 - 04:20 AM

Have y'all tried talking about this and coming up with a way to quickly remind him he's reacting to gluten when he exhibits this behavior? Like a safe word or phrase?

I know when I'm in the middle of a DH flare or having a panicky/heart racing/brain foggy moment I'd love for someone else to "see" it and remind me to calm down, sit down and breathe and SHUT UP. Because I can quickly fly off the handle and the closest person is the best target. I'd walk around muttering "Rumplestilskin" if it would help.


LOL! That cracked me up! Yesterday we had a fabulous day and he was lamenting to me the fact that he wished he could be a "normal" person. I really felt bad for him. He's getting better and better about realizing how this effects him. He's able to stop probably more than 3/4 of them, but it seems when he's glutened over a longer period of time, it really gets to him and he's unable to control it as well.
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