Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


VMCV

Recommended Posts

VMCV Newbie

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??


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

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.  

cyclinglady Grand Master

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.  

Open Original Shared Link

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! 

 

 

Jmg Mentor
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

 

 

VMCV Newbie

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!!

VMCV Newbie
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.  

Open Original Shared Link

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. 

pikakegirl Enthusiast

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.

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jmg Mentor
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 orOpen Original Shared Linkto 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

GFinDC Veteran

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.

VMCV Newbie
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 orOpen Original Shared Linkto 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 ?

  • 2 months later...
1desperateladysaved Proficient

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.

 

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - lizzie42 posted a topic in Coping with Celiac Disease
      0

      Is tTG 9 normal after 4 months gluten-free?

    2. - knitty kitty replied to thejayland10's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      TTG IgA and IGA elevated mildy

    3. - trents replied to boy-wonder's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      New to gluten free living, in5ro and small question

    4. - AllyJR posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Gluten free parakeet food

    5. - boy-wonder posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      New to gluten free living, in5ro and small question


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,198
    • Most Online (within 30 mins)
      7,748

    David Pearch
    Newest Member
    David Pearch
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lizzie42
      My daughter has been gluten-free about 4 months. Prior, her tTG was over 100 (test maxed at 100). Her liver, iron, vit d are all normal again and she has grown 2 inches and gained 4.5 pounds in just 4 months! It's amazing. But her tTG is still at 9. Is that normal or should it be zero? Is she still getting gluten? We are SO strict. We don't eat out.  She was previously having tummy pain still. I cut oats completely 3 weeks ago and that is gone.  Can gluten-free oats raise tTG? Would I know based on symptoms? I was going to try her on oats again now that she doesn't say her tummy hurts anymore.  Also, our house is gluten free apart from one loaf of bread my husband uses. He makes sandwiches on a plate then puts it in the dishwasher. Yesterday when my celiac kids weren't home, my youngest and I ate "real" pasta. I was SO careful. All pans went in the dishwasher, I didn't spill any, I cleaned the sink I drained it in. Today my girl has her dermatitis herpetiformis rash back and had a huge hour long meltdown then fell asleep. Just like before diagnosis. Is it that hard to avoid cross contamination? Will one crumb off the plate or me cooking pasta when she's not home get her?  Again, we do not eat out, she's not in school yet, and she doesn't eat anything I don't give her. 
    • knitty kitty
      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
×
×
  • Create New...