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Marriage Trouble And Celiac
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36 posts in this topic

This is an absolutely amazing thread for many reasons. Lately I have been thinking about my relationship with my husband a lot, with regards to my health. I have been having a lot of IBS problems lately and he has seen me over the past six years give up more and more foods, try more and more supplements, try different diets, etc. I have tried to not make a big deal about it lately but he now has been trying to get me to agree to an endoscopy or something. Not that I don't want one, but I have terrible insurance (or as I call it, "unsurance") and would be on the hook for the whole thing. Additionally, I have been referred to a rheumatologist (tomorrow) and have been attempting to facing the possibility that I may have a connective tissue disease.

He is amazing and always sticks up for me at restaurants, parties, even with my family. He comes up with creative ways we can go eat a meal with his mom - she never gets the food limitations right, so we now take meals to her house to prepare. It works.

In fact, I thought of him when Merika wrote about how she could mention that a coffee sounded good, and her husband would be all over it. Seriously, if I am even just sitting on the sofa watching TV with my husband, and mention something sounding good, he's off to get it. I mean, it's beyond the call of duty.

He likes to go out a lot more than I do, and I have had less desire to go out as time has gone by. He used to get upset and say that I *used* to enjoy going out with him, why don't I now? This was a big bone of contention for us. But, like Tiffany mentioned, at some point we were able to explain to each other it was ok if he wanted to do something without me - we'd probably both have a better time, in fact. And so that works really well for us.

I have had really bad relationships so I can fun the gamut of responses to situations. But I'm in a really good one now (nearly 8 years) and I couldn't be more thankful. I just hope that I am healthy soon or at least healthier, so that I don't feel like I'm constantly worrying him (and me!) And I really am putting all my positive thoughts into my appointment tomorrow - I am nearly more concerned about how my possibly having a connective tissue disease will affect my husband and my family than how it will affect me. I just feel like I've already been the person for several years who has been sick (at least 12 now) and can't fathom that getting worse.

Anyway, I really appreciate reading how others on this list have coped with difficult situations like these and my heart goes out to all of you who are struggling in less-than-ideal situations. Shout-out to Frenchiemama! :)

Stephanie

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I echo the praise for this post and the insight from many. I feel for those who have no real community and try to go it alone. How hard that must be !

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I have lupus and often times are too tired to do many things around the house, so they go undone. You are lucky your husband does them! It is very hard though to hear complaints about it though. I reccommend a website called divorcebusting.com. It is very helpful. It is run by a counselor named Michelle weiner-Davis. She has written many books on relationships. I recommend them all-maybe not all at once though. She is critical of counselors who do not offer solutions to problems. Instead she focuses on actually helping her patients by finding things that work for them. I hope this helps.

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Time for my two cents, and I am going to say up front that I know where your husband is coming from. My husband has never been as sick as you -- thankfully -- but coming off 10 months of harrowing , horrifying illness with my son, I was just overwhelmed when DH decided to go gluten-free after his screening turned up "borderline" tTg numbers and a gluten-free trial diet made him so much healthier than ever I have known him. (and we'll throw in that I was sick, too, and so were both our parents)

Yes, I am happy for him. No questions about that, now I get to keep him longer!Yes, I love him. Always will. But you want the life you expected, sometimes. I want to not worry about him all the time. Spouses grieve too. Spouses, especially men, are terrified of what happens if you can't get better, what if you get sicker, why can't he fix what's wrong with you, why can't the doctors. Your whole security has been shaken. (Men are socialized to fix things, not caretake. To your average guy, caretaking doesn't feel like doing something about the problem.)

And then, of course, I feel guilty and stupid and small for being angry/sad/worried. But nobody ever asks me how I'm doing with this. Nobody feels badly that I eat pizza only when he's away, so I don't make him feel badly (or our son) so I'll never get to sit in front of my TV with one again. And I'm not saying they should, but it's not always a pile of laughs. But also, don't forget that some of this might have come up anyway, it isn't always celiac disease causing everything!

In a nutshell. I think, Yes, you should find yourselves a great counselor. Just a "safe" place to talk will be wonderful. Just the obvious committment to "we want better than this for ourselves" is comforting for you, and healing for him. We've been together 24 years and married 20, and you really do have to work sometimes, be creative, and be mindful that the things we love about our spouses are still in there.

Good luck~

Joanna

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Your post compelled me to finally write something! Although I've read these posts for a long time, I have never registered and written. However, there is a book that I think might really be beneficial to you (and many others) who deal with Chronic Illness(es). It is called The Chronic Illness Experience: Embracing the Imperfect Life by Register, Cheri. (1999). I am in graduate school and was diagnosed with celiac disease after being sick for almost a year. This book was recommended to me by one of my professors. It is wonderful and although it deals with people who have conditions like MS, I did feel like it was truly applicable. It addresses a lot of the issues that you brought up in your post and thought that you might find some comfort, or feel like you can relate to what she is saying. Take care!

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Hello,

Wow, thank you for everyone's wonderful responses. Really! This has given me lots to think about.

Dogear, it's not quite that bad :) I trust him completely with my food. He even swore up and down along with me when I told him of the Tropicana issue from another post (we drink Tropicana, but always had gotten the "Pure", gluten-free kind.)

Maryellen - ahhh, this is what I needed. :) 57 years..... I heard a story once of a couple married a very long time, and when asked what their secret was, the woman replied "we were never both out of love at the same time". It was an interesting answer to hear. It does take commitment, and in our "grass-is-always-greener" society, this commitment is not the easiest path to take. I would like to think someday me & my dh will be where you and yours are :)

Connole, I will check out that site. Thanks! And I'll suggest www.flylady.net to help you pace yourself while you get the house clean :)

Ryebaby, I am glad you wrote in. It is helpful to hear the other side of the story. I think grieving is an accurate term. I know my dh definitely grieved the first 6 mos I was gluten-free. He actually had a harder time with it than I did.

LauraJ, welcome :) I will check out the book. It sounds just like what I was looking for a while ago and couldn't find.

And Bean, the book you rec'd just came into the library, so I'll be reading it soon....

I haven't made much headway on finding a counselor yet. :( I made a few calls last weekend. I also want to talk with dh about a bunch of stuff from this post. Horrifyingly, our computer went down Sunday night and just today was back up and running (I checked in here a few times from a laptop.) Dh makes his living off the computer - ack - and was in a panic and under the desk for 4 days troubleshooting, so I've held off on anything big :blink: Sunday we are attending a friend's wedding, and I think this will be a very interesting experience, given where we are right now. Maybe it will clarify some things for us....?

Merika

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You might try asking your doctor for a referral to a marriage therapist. (Make sure to get one who's worked in the marriage field - not all of them have.) The referral I got from my gyn for the therapist I see was a good one, even if she is a two hour drive away. (Then again, so was the gyn. ;-) )

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Tiffany -

I think you should set up a p.o. box where we can send you gas money! ;)

- Michelle :wub:

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Tiffany,

If she's in Los Angeles, pm me. :)

Merika

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I just came across this poem that seems to fit this topic so well. (Hope you guys like poetry ;))

When love beckons to you, follow him

Though his ways are hard and steep.

And when his wings enfold you yield to him,

Though the sword hidden among his pinions may wound you.

And when he speaks to you believe in him,

Though his voice may shatter your dreams as the north wind

lays waste the garden.

For even as love crowns you so shall he crucify you. Even as he

is for your growth so he is for your pruning.

Even as he ascends to your height and caresses your tenderest

branches that quiver in the sun,

So shall he descend to your roots and shake them in their

clinging to the earth.

- Kahil Gibran (from The Prophet)

Intimacy is not for the faint of heart. I so desperately hope that all of us are strong enough and wise enough to find it, embrace it, hold onto it, and be nourished by it.

- Michelle :wub:

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Your post compelled me to finally write something! Although I've read these posts for a long time, I have never registered and written.  However, there is a book that I think might really be beneficial to you (and many others) who deal with Chronic Illness(es). It is called The Chronic Illness Experience: Embracing the Imperfect Life by Register, Cheri. (1999).  I am in graduate school and was diagnosed with celiac disease after being sick for almost a year. This book was recommended to me by one of my professors.  It is wonderful and although it deals with people who have conditions like MS, I did feel like it was truly applicable. It addresses a lot of the issues that you brought up in your post and thought that you might find some comfort, or feel like you can relate to what she is saying. Take care!

<{POST_SNAPBACK}>

Laura,

Thank you SOOOOO much. This is indeed the very sort of book I had been looking for the last few years. It is excellent - well written, intelligent, and insightful. I highly recommend it to ANYONE here who has suffered the symptoms of celiac and still has problems.

It's weakest chapter was IMO the one on marriage and partners, I think because that was also the author's weakest area of insight and success (if one can call it that). But here is an insightful bit that I read to my dh:

[under the chapter Patience as a Way of Life, subchapter Stress]

"Just keeping yourself maintained consumes much of the time, attention, and energy you would otherwise devote to life's optional activities. Ina healthy, energetic life, the tasks required to do justice to work, family, house, community, and your own spiritual well-being hardly seem optional, but chronic illness forces you to pick and choose. Everything you want to do must be reassessed and assigned a priority. Just how optional each activity is depends in part on the physical toll it exacts, but also on how much it contributes to the overall quality of life."

That really rang a bell with me. It was like, yeah I did reach a point of illness where I had to pick and choose among the "tasks required to justice to work, family, house, community, and your own spiritual well-being", the non-optional stuff most people take doing for granted. Things are a bit different for me now, but there was a definite scaling down in the last few years.

Merika

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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