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Alone In My Struggles

PamelaB

By PamelaB
in Coping with Celiac Disease

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PamelaB Newbie
PamelaB
Posted

I have been 5 weeks gluten free and it has been a struggle.  I also suffer with IBS-C and anemia due to the celiac but am currently receiving IV iron infusions to increase my levels.  My struggle is my spouse and his inability to grasp the severity of the situation.  Or maybe he has just become desensitized to hearing me say "I don't feel good" for so long that he doesn't get it.  I think he hopes that some time in the future I will be better and no longer have to adhere to a gluten free diet.  I feel like I am constantly debating with him about how I feel and that it is related to what I eat.  He doesn't seem to get that I don't feel well because of what I eat therefore I can't eat certain things anymore.  To be more specific, I am finding the longer I go gluten-free more food intolerances are rearing their ugly heads.  I am already lactose intolerant, have been for numerous years, but now seem to be corn intolerant and he just cannot and will not accept this.  Today I ate a gluten-free English muffin made out of corn flour and I am now down for the count...fatigued, body aches, nauseous.  And I have been noticing trouble with corn products but just wanted to ignore them.  How do I get him to understand that being Celiac can be more then just needing to be gluten free, but a whole host of other things can come into play?  Thinking of going to an allergist to have a blood test for food allergies done because he only seems to believe it if I have medical proof.  How I am feeling does not matter.  Feeling all alone.

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Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Sorry you are having a tough time.

I found a number of other intolerances surfaced once I went gluten-free. I am NCGI, but still need to do gluten-free for life.

I did an elimination diet and kept a food diary to work out the intolerances.

I am wondering why your husband is unhappy for you to be altering your diet, if it keeps you healthier. Is he concerned that you won't prepare for for him, or that it will be harder to eat out?

I am lucky that my family is supportive, but even they get sick of me talking about what I do and don't eat. I now try and quietly get on with sorting my own food out, and come here to talk to people who understand.

I hope we can offer some support. You will be gluten-free for life now, and while the adjustment can be tricky, it starts to become normal in a few months or so.

The biggest convincer for my family was the massive improvement in my health. Maybe that will convince your husband it is all worth it.

Welcome to the board, ask lots of questions, come and vent if you need to :)

notme Experienced
notme
Posted

poor baby ;(  so sorry - it sure does suck and i know where you're coming from.  i was so sick of saying, "i'm so sick" that when this finally got diagnosed, he was happy to put a name on it.  then he could fight it.  maybe he would see it from that angle?

 

 i had to skip dairy for awhile (but was able to add it back) and soy is still a problem <boy, if you think gluten is in every dad gum thing! soy is maybe more so lolz)  

 

but here's the kicker:  i am soooooo much better.  i FEEL better, all over, and i am more of myself again.  stick to your (dietary) guns, refine the way you need to eat (and every one is different)  and hopefully he will see the difference.  you're struggling now, no doubt, but it pays off.  good luck and if you hang around here, you are bound to get pointers and whatnot.  at least here it's ok to rant/vent - we have all been there   :blink: welcome to the club you never wanted to join.............. <_<   

IssuesWithLife Newbie
IssuesWithLife
Posted

Aw,I'm sorry.It really sucks when other people don't get it.I found out I had celiac when I was 10,so it's been 9 years.I've been having issues with other foods recently and it is quite frustrating!One of the reasons why it is,is cause my mom thinks certain foods are fine for all celiacs and certain ones are not and doesn't like to listen if one of the "bad" foods doesn't make me sick and one of the "good" foods does.

But it's not unusual at all for people with celiac to not be able to handle corn,I have found out.Also soy,dairy and eggs tend to be the big ones,but it can vary wildly from person to person.

Maybe if you can find blogs and articles online where other people are like you and show it to him it would make a difference?

1desperateladysaved Proficient
1desperateladysaved
Posted

I experienced the same difficulties just about a year ago.  My weakness caused me and my family great struggles.  I was nearly dying, he was inviting a family of 12 for dinner.  He just didn't get it.

 

Now, he says that clearly I do have a gluten problem.  He has seen profound improvements in the last 9 months.  Things are not perfect, but they are getting better with my energy levels coming up.

 

You do have to look after your own health.  I mean, if you can't eat corn don't eat it.  I have been trying to come to grips with allowing people to look down on me and not fretting.  This is hard to do, but if one can manage it they should be happier, I think.

 

My husband has all of the energy he wants.  How on earth can he understand analyzing carefully how to plan my day, so as not to totally exhaust my self by 9 am?

 

I am not sure if the situation were reversed if I could believe some of the claims I make!

 

D

dilettantesteph Collaborator
dilettantesteph
Posted

I remember feeling like you do.  I think that it made things worse when I went to support group meetings and saw all the other celiacs there with their spouses.  Both parents were there when it was their children.  In our case it was me and our child and still my spouse showed no interest.  Despite the diagnosis being direct from the doctor, my husband wouldn't believe it.  This was especially so when we didn't get all the way better immediately.  

 

In our case it was issues with gluten cross contamination rather than other food intolerances that caused our problems, but it took awhile to figure that out.  The food/symptom journal really helps in either case.  In case it is gluten cc, it is important to keep track of source of the food as well as the ingredients.  6 years later my spouse is more supportive.   Give you husband some more time.  He is probably in denial.  Things will probably get better.

PamelaB Newbie
PamelaB
Posted
  • Author

I can't thank all of you enough for your kind words of support. Like you said as my husband sees me getting better then maybe his support will grow. I have to admit it is still hard for me to wrap my head around the fact that this is for life. Nothing feels in my control anymore. As I gain a sense of control back and a routine to shopping, cooking and eating, I am hoping that things will get better for the household. Right now is an awful learning curve. And yes, getting him to understand the cross contamination issue is huge. Was thinking today that I might give him his own dedicated counter space in the kitchen, since he doesn't clean up after himself. Anyways thank you again for allowing me to just vent and think out loud.

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Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

My husband and kids have their own counter space now. We also have separate utensils, so all of mine are purple and easy to spot! I have a purple toaster, breadbin etc. too, and pink dishcloths. We use a lot of foil on the grill, and paper towels for wiping down. If I have to clear breadcrumbs for example, I use a wet paper towel and throw away, then wash my hands.

 

We tend to try and cook 'naturally' gluten-free a lot, so dishes based on potatoes, rice, rice noodles, sweet potaoes for example which helps everyone I think.

 

I know it seems overwhelming at first, but it is surprising how quickly it sinks in. We have some good food ideas (and a lot of chat!!) over on the What's for Dinner thread, if you are looking out for food ideas (and good company ;) ).

 

Keep reading and asking questions, there are loads of good ideas around

 

Mw

notme Experienced
notme
Posted

I can't  And yes, getting him to understand the cross contamination issue is huge. Was thinking today that I might give him his own dedicated counter space in the kitchen, since he doesn't clean up after himself. Anyways thank you again for allowing me to just vent and think out loud.

lolz - i have visions of me leaping across the kitchen just as he is about to use the Same Tongs - like i was diving on a grenade.  that was a tough one - i think i ended up explaining it in NCIS abby's lab terms <he loves that show and the guy who plays mike franks has a house nearby)  explaining plastic containers and cc is ridiculously ridiculous - one of my friends is always showing me:  look!  no stainless steel is touching plastic......................  um...................  ok........................?   it'll get easier - even my kids and grandkids are pretty savvy once they understood the concept ^_^  

tommysmommy Newbie
tommysmommy
Posted

Navigating the whole gluten-free/food intolerance world is hard, getting others to understand it is torture. My suggestion, accept that to him - this whole food thing seemss ridiculous & try not talk about it for a few Weeks. During this time stick to a very simple diet - fresh fruit, vegis, chicken, rice (no corn or dairy)... eat very plain foods but eat lots of them plus gluten-free vitamins & probiotics. Betcha you'll feel different & he'll witness the transformation. Sometimes you have to see it to believe it. My family went gluten-free when my son was dx celiac & in a very short amount of time - we all started changing dramatically. I wouldn't have believed it if I hadn't lived it. Good luck!

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