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VMCV

I feel like I'm trying so hard...

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My husband was diagnosed over 4 years ago. He has developed so much anxiety which manifests into frustration and anger and I'm not sure what to do. It took me a long time to realize that though I felt I was being supportive of his diet, he felt that I was making him feel guilty if he chose not to eat somewhere or if he recleaned an area I had cleaned (thinking it may be contaminated)

Since, I decided to have our whole house gluten-free at home. Thinking this would alleviate his stress around cross contamination and he could feel safe eating at home. He is still so irritable and angry when it comes to food, I don't know what else to do?? Does celiac even when on a 100% strict diet for years still cause mood problems??

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Has he had his antibodies re-tested to make sure he is gluten free?

You might try some sort of counseling - marriage or individual.  Or both.  

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Like Karen, I think a follow-up visit to a GI or PCP to get a full celiac panel is in order.  He should be checked for vitamina and mineral deficiencies which are all part of annual celiac disease follow-up care as recommended by the American Gastroenterologist Association and the leading celiac centers.  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

if Celiac Disease is not the physical cause of his depression or anxiety, then look into counseling.  Having celiac disease can be so hard emotionally.  What other disease requires you to manage treatment on your own?  A recent study revealed that some celiacs feel as bad as end stage kidney patients.  They can be overwhelmed.

I have had bouts with anxiety and it was related to celiac disease.  A gluten exposure seems sets off a cascade of events that take me months to heal usually setting off another autoimmune response beyond celiac disease.  Have him evaluated for other autoimmune disorders at that check-up. 

I applaud your gluten free home.  Our home was made gluten free after my diagnosis because my hubby had been gluten free 12 years prior.  It was just easier.  My kid is gluten free at home, but she gets gluten at school.  We rarely dine out, but I do join friends and usually have a drink.  Often you can can other food intolerances besides just an intolerance to gluten.  So, get your gluten fix outside the home and brush your teeth before kissing your hubby.  

Join a celiac support group.  They know where to eat out and it is nice to have a face-to-face conversation.  Join even if he does not want to go.  My hubby is not interested, but it is nice for me.  

I hope this helps! 

 

 

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11 hours ago, VMCV said:

My husband was diagnosed over 4 years ago. He has developed so much anxiety which manifests into frustration and anger and I'm not sure what to do. It took me a long time to realize that though I felt I was being supportive of his diet, he felt that I was making him feel guilty if he chose not to eat somewhere or if he recleaned an area I had cleaned (thinking it may be contaminated)

Since, I decided to have our whole house gluten-free at home. Thinking this would alleviate his stress around cross contamination and he could feel safe eating at home. He is still so irritable and angry when it comes to food, I don't know what else to do?? Does celiac even when on a 100% strict diet for years still cause mood problems??

Karen and CyclingLady have given you some good advice. I'm going to just jot a series of thoughts down in a list, hopefully some of them will be of use :)

Changed mindset:

My whole approach to food changed. It used to be one of the great pleasures in life and now it's become at times a necessary evil. I feel like I always have to maintain a level of vigilance. Eating out is no longer pleasant most of the time. If I'm about to eat or eating I'm not relaxed. Either I'm reading labels, checking for crumbs, wondering how my food was prepared etc. etc.  I don't like talking at this point, I just want to focus on eating safely. Frankly I feel threatened, as a guy this is a difficult thing to recognise and deal with, we have evolved to confront threats but in this case the threat is silent.

I don't trust others to have the same level of vigilance. So if people say ' this is ok / clean / safe etc' it's not really of use to me. I'm still going to want to clean/ check label etc because on too many occasions those people have been mistaken. I've had dishes served to me with an assurance they're gluten free only for someone else to come along and say 'oh no sorry we made a mistake'.  So I prefer to do these things myself, every time, because I want to ingrain the habit. 

The price I pay for being glutened is somewhat physical, some horrible things, some just irritating, but mostly mental. It's horrible depression and anxiety. it lasts for a long time and I just NEVER want to feel that way again if I can help it. So the cost benefit analysis for me with food and establishments is very much skewed against any kind of relaxation of my safeguards. I don't want to try new things unless I'm in complete control of what's gone into them. 

If I were to step outside myself and look at my mindset I'd say it was bordering on paranoid. It's just the way it is, others probably have a less strict attitude and others are probably even more strict. I take risks by cooking with other peoples pans for instance on occasion. Although I prefer to travel with my own!

It's horribly distancing and isolating from others. In a supermarket or restaurant I feel like an alien amidst a different species. :( 

So I am also snappy and short tempered in the kitchen. Now your husband may be completely different. I just wanted to give you an insight into how I've changed since I had to deal with this, hope its of use. 


My suggestions:

1. Discuss this when you're away from the kitchen / dinner table and the 'threat' level is reduced. Emphasise that you want the home space to be a safe relaxing place for both of you, you've done your part by going gluten free, can he meet you half way by trying to destress and trust you to keep gluten out of kitchen.

2. Ask him to consider if he could have any secondary intolerances going on. For me its dairy, it makes me anxious, irritable in a lesser but similar way to gluten. He may have already discounted this, but if he's not it could be worth looking into, I noticed a difference within a few days of removing it from diet. 

3. Don't push him in the public environment. If eating out, if he wants to just sit and have a drink then don't push him. I'm happier taking my own food and eating earlier/later than eating something that I'm worried will be contaminated. I hate the waiter coming up and saying 'Wheres the gluten free?' etc in front of everyone. It's just a crappy experience and the resulting food is generally terrible and overpriced. 

Be supportive, but do let him know, he does need to change, its not fair to take this out on you. 

All the best!

Matt

 

 

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Thank you all! This is my first time posting and you have no idea how glad I am that I did...Matt I immediately started crying when reading your post. I can't imagine what it is like and it breaks my heart when my husband actually talks about the very things you describe. 

But its just gotten to the point where I am made to feel like nothing I do is enough or right. I no longer ask or expect him to eat anywhere or anything anyone else has made and leave it 100% up to him. I am learning not to be resentful and try to own it if I am...but I just feel that he can't or won't own that he is treating me poorly out of agitation or frustration. He is not big on conversation but just says he feels in a fog and doesn't feel like himself. 

I am going to start therapy for myself because I will never give up but I also know I need to take care of myself to be able to be supportive. 

Thank you again!!

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13 hours ago, cyclinglady said:

Like Karen, I think a follow-up visit to a GI or PCP to get a full celiac panel is in order.  He should be checked for vitamina and mineral deficiencies which are all part of annual celiac disease follow-up care as recommended by the American Gastroenterologist Association and the leading celiac centers.  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

if Celiac Disease is not the physical cause of his depression or anxiety, then look into counseling.  Having celiac disease can be so hard emotionally.  What other disease requires you to manage treatment on your own?  A recent study revealed that some celiacs feel as bad as end stage kidney patients.  They can be overwhelmed.

I have had bouts with anxiety and it was related to celiac disease.  A gluten exposure seems sets off a cascade of events that take me months to heal usually setting off another autoimmune response beyond celiac disease.  Have him evaluated for other autoimmune disorders at that check-up. 

I applaud your gluten free home.  Our home was made gluten free after my diagnosis because my hubby had been gluten free 12 years prior.  It was just easier.  My kid is gluten free at home, but she gets gluten at school.  We rarely dine out, but I do join friends and usually have a drink.  Often you can can other food intolerances besides just an intolerance to gluten.  So, get your gluten fix outside the home and brush your teeth before kissing your hubby.  

Join a celiac support group.  They know where to eat out and it is nice to have a face-to-face conversation.  Join even if he does not want to go.  My hubby is not interested, but it is nice for me.  

I hope this helps! 

 

 

I will look for a group. Thank you so much. 

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Dont know if this was mentioned or already checked but the thyroid can be attacked by the immune system as well. I also have an autoimmune thyroid disease. I am a different person when my meds are off, sometimes just easily angered and grumpy. Everything seemes ten times harder and more complicated. My mother is the same way and we tell each other when we see the change, gently of course. Does not seem like doctors check men for this since it is less common in men. I even had my husband checked though he is not celiac when his energy level dropped. Well wishes from this 10 year survivor.

 

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4 hours ago, VMCV said:

Matt I immediately started crying when reading your post

This is perfectly normal response and to be expected. Be grateful it wasn't novel length, some parents use my longer posts to punish naughty children and the insomniac society have me on retainer. :P

4 hours ago, VMCV said:

says he feels in a fog and doesn't feel like himself

Hmm, I think he needs to give serious thought to trying to track down a physical cause, thyroid like Pikakegirl says above or an elimination diet or AIP diet to try and see if there's something else going on.  Bear in mind that most of the post diagnosis support, if it even exists, is absolutely awful. So it's possible he still has some learning / healing to do. 

That fog feeling description is very familiar for instance I'll bet lots of people reading this feel the same. Like I said above, for me I had to come to terms with the fact that even the tiny amounts of dairy I was having in gluten free foods were enough to trigger a response. This realisation took me years, time I was happily giving out advice on here when I was actually suffering skin issues, some anxiety/fog etc.  breathing issues from the dairy.  Was it denial? Stupidity? Unwillingness to give up yet more foods and be further isolated from the junk food eating, carefree (but secretly desperately ill) guy I was a few years before?  Probably all of the above...  Now obviously dairy may not be the issue in your husbands case but the fog feeling does sound very like something that could be a physical celiac/gluten response and not just an issue around adjustment to the diet.  You/He could take a look at this thread and see if there's any advice there which may help. 

4 hours ago, VMCV said:

He is not big on conversation but just says he feels in a fog and doesn't feel like himself. 

I am going to start therapy for myself because I will never give up but I also know I need to take care of myself to be able to be supportive. 

Counselling is an excellent idea. Helped me a lot and if he could do it I suspect it would help him too. I'd lived with a lot of secret unexplained illnesses. Convinced myself that I was going to die early, Gave up on doctors after all they did was throw different anti depressants at me. Pushed anyone away who got too close. When I found out it was just a simple food adjustment I needed a lot of counselling and it helped in coming to terms with things. 

There's lots of good advice and support available here. It helped me, can help you and could help your husband too. He's lucky to have you watching our for him. Make sure this doesn't drag you down and try and gently steer him into getting some additional help with this.

Wishing you both all the best of luck!

Matt

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Hi VMCV,

It took me a good 5 years to feel fairly well after going gluten-free.  Maybe most people feel better after just a couple years, but ti can take longer.  One of the problems IK had was I developed other food intolerances that I wasn't aware of for quite a while.  I ended up doing food elimination diets to find my other food intolerances.  So, dairy, soy, nightshades, carrots, celery were all making me sick.  After I got those foods out of my diet I felt much better.

Something else I had a problem with is being low on some vitamins and minerals.  Years of not being able to properly absorb nutrients can do that to you.  For me taking selnium helped my energy level a lot.  I eat a few Brazil nuts each week to help with selenium intake.  And taking extra vitamin D still helps me after 10 years gluten-free.

The primary food suspects in a glutening are always processed foods.  So if he is eating any processed foods they are something to look at closely.  Spice blends are also a possibility.  The simpler the diet the easier it is to keep gluten out.

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9 hours ago, Jmg said:

This is perfectly normal response and to be expected. Be grateful it wasn't novel length, some parents use my longer posts to punish naughty children and the insomniac society have me on retainer. :P

Hmm, I think he needs to give serious thought to trying to track down a physical cause, thyroid like Pikakegirl says above or an elimination diet or AIP diet to try and see if there's something else going on.  Bear in mind that most of the post diagnosis support, if it even exists, is absolutely awful. So it's possible he still has some learning / healing to do. 

That fog feeling description is very familiar for instance I'll bet lots of people reading this feel the same. Like I said above, for me I had to come to terms with the fact that even the tiny amounts of dairy I was having in gluten free foods were enough to trigger a response. This realisation took me years, time I was happily giving out advice on here when I was actually suffering skin issues, some anxiety/fog etc.  breathing issues from the dairy.  Was it denial? Stupidity? Unwillingness to give up yet more foods and be further isolated from the junk food eating, carefree (but secretly desperately ill) guy I was a few years before?  Probably all of the above...  Now obviously dairy may not be the issue in your husbands case but the fog feeling does sound very like something that could be a physical celiac/gluten response and not just an issue around adjustment to the diet.  You/He could take a look at this thread and see if there's any advice there which may help. 

Counselling is an excellent idea. Helped me a lot and if he could do it I suspect it would help him too. I'd lived with a lot of secret unexplained illnesses. Convinced myself that I was going to die early, Gave up on doctors after all they did was throw different anti depressants at me. Pushed anyone away who got too close. When I found out it was just a simple food adjustment I needed a lot of counselling and it helped in coming to terms with things. 

There's lots of good advice and support available here. It helped me, can help you and could help your husband too. He's lucky to have you watching our for him. Make sure this doesn't drag you down and try and gently steer him into getting some additional help with this.

Wishing you both all the best of luck!

Matt

Thank you again! And I love a good novel ?

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I admit to feeling as if someone is trying to kill me when gluten is treated without regard (by those that know my issues) in my presence.  A mistake can be so costly for me that I fail to understand careless behavior.  I hope that you will use utmost caution and apologize for any blunders as well as family member will not take it so personally.

My reactions are much better when I am feeling really well.  Things I have worked with that helped are thyroid, allergies, diet (low fat, low sulfur, high accessible protein foods, no sugar.)  All of those ideas would need to be analyzed not necessarily all will be needed.

 

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