• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Marriage Trouble And Celiac
0

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

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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 !

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
Ads by Google:


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

0

Share this post


Link to post
Share on other sites

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. ;-) )

0

Share this post


Link to post
Share on other sites

Tiffany -

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

- Michelle :wub:

0

Share this post


Link to post
Share on other sites

Tiffany,

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

Merika

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,783
    • Total Posts
      932,387
  • Member Statistics

    • Total Members
      64,258
    • Most Online
      3,093

    Newest Member
    Avril Perridge
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thank you, again, for the support and help! The suggestion of sleep and lots of water and discussion the next day seemed to help a lot. 
    • ironictruth, I think you are so early in your diagnosis that most test don't account for so early a diagnosis. see this thread started by you and GFinDC conclusion at the end of the thread not sure how to quote from multiple threads. Here is what GFinDC thought the study meant and I agree. Posted March 7 "It seems like another way to look at the positive DGP and negative biopsy is that DGP could be an early indicator of celiac disease.  Perhaps before much intestinal damage shows up." Here is another thread that talks about what is happening to you I believe with so many test's we often can't clearly make out what is happening often. see this link embedded in the the post as linked by squirmingitch https://www.ncbi.nlm.nih.gov/pubmed/27352981 on the topic of  "Seronegative celiac disease: Shedding light on an obscure clinical entity." and might be what you are experiencing from your test results. But I want to say why while you so want it to be "Celiac" and not the "C" word I think Pellagra should be considered as a differential diagnosis. I say this and repeat it to those who will listen.  Niacinamide helped me. This article on celiac.com explains why this might be so https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html and if taking a b-complex 2 to 3 a day (and Niacinamide) for a couple months greatly alleviates many of your GI problems then you also  have had pellagra co-morbid and the doctor's don't recognize it in a clinical setting today .  . .  mainly because they don't know to look for it any more today. I wrote about how to take niacinamide in my blog post about this topic so I wouldn't have to retype it several times. I want to quote from the discussions section the heart of most good research from the American Journal of Clinical Nutrition research article linked in my posterboy blog thread about how to take niacinamide and why you would want too Faq. poster here again for those who want to do the deep research from their discussion section. http://ajcn.nutrition.org/content/85/1/218.full "Random spot urine sampling, together with the measurement of 1-MN and 2-PYR concentrations, has been suggested as an alternative because it avoids these issues and would provide a guide to status (22). However, the ratio of these metabolites has been shown to vary according to the time after the last meal because they are sequential intermediates on the same catabolic pathway (21). This makes the ratio an intrinsically unstable variable for use in population surveys; in the present study we chose to use cutoffs previously established for the excretion of individual metabolites expressed relative to creatinine. The subjects whose excretion fell below the established cutoffs for either metabolite were considered to be deficient." A little technical but essentially we soo need b-vitamins that even if you have a test for low vitamin b-3 the amount of the b-3 in your meal (f you have not fasted before the test) can cause us to test in a low normal range thus making taking of the b-vitamin a self test of cause and effect. Did you get better after taking Niacinamide then if taking Niacinamide helped your GI problems you were low in Niacinamide. This is typically a 24 hour test and most people don't fast 24 hours before going to the doctor and will often fail this test since our body has absorbed enough from our food to help us pass the thresh hold set at the minimum level. Here is why it is good to take a b-complex with Niacin/niacinamide because it interacts with other nutrients. https://www.ncbi.nlm.nih.gov/pubmed/3804611/ including b-6 which is one of the metabolites measured to determine a pellagra diagnosis. see this mdguidelines link that summarizes this well. http://www.mdguidelines.com/pellagra where they say  quoting there treatment section "Treatment consists of high oral doses of niacinamide, a form of niacin. Usually, supplements of other B-vitamins are also given because many individuals with pellagra also have low levels of B1, B2, B6, and pantothenic acid." and possibly Zinc if the other research is correct. ***** this is not medical advice just my research on the topic and experience with taking Niacinamide to treat many of my GI problems. Prousky wrote about this 15+ years ago and still people are not aware of this fact that Niacinamide treats digestive problems. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm and if they are are aware of it are they are slow to accept that a vitamin could help with their GI problems. the gluten free works site also has a great article on this topic. http://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ while it is recognized that celiac's have many of these deficiency it is not well accepted/understood today low Niacinamide alone can treat many GI problems though the research is 15+ years old .  . . still people suffer. I don't want you to have pellagra or celiac but I want you to be aware there is a another valid differential diagnosis that can make sense for many people seeking to be diagnosed as a celaic disease patient. because people with pellagra often get better very quickly it is worth a try or least some of your time to research it some more. ***again this not medical advice.  Please check with your doctor about this possibility but don't be surprised if he doesn't know much about pellagra and probably less than he does about celiac disease. Dr. Heaney talks about why this is today on his blog about the 4 D's of Pellagra and why doctor's don't recognize it today in a clinical setting. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ good luck on your continued journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • You should probably have your doctor run a full blood panel for celiac if you want to be tested right, followed by a endoscope and biopsy. The blood test can give false negatives, and you have to be eating gluten for at least 12 weeks daily for the test. On the ferritin levels, mine was consistently 1-3 on every test even with 2x the normal dose of iron. I found I had to take it with vitamins C supplements to boost it a bit along with managing a few other nutrients that work in combination with it. Seems mine is in part due to constant intestinal inflammation caused by my UC and bleeding ulcers.
    • Hi, I am looking for a functional medicine doctor in the Chicago area?  Any recommendations?  I have never been to one.  I have celiac disease and ulcerative colitis.  What should I expect from a functional medicine doctor?
    • Omg just saw this again, but on Facebook. Wow there are 596 comments on it, most of which are completely crazy. I almost forgot that most people know nothing about celiac disease., yet they pretend they do and shame us.
  • Upcoming Events