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      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
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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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    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
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