Sad, Frustrated, Need Support

[argybargy]

Hello all.

 

I was diagnosed in March via blood test and biopsy and immediately went gluten free. However, I had no visible symptoms.

 

Since going gluten free, both my health and my marriage have declined. My wife was initially supportive but after a few months said she's tired and frustrated of my restrictions. I often have to cook my own food separate from my family and feel like a pariah. When we're out, I feel like a lot of my time is spent hunting down gluten free food or asking about gluten free food. My wife has said she's tired of the whole topic and doesn't want to hear about it any more, and I don't know what to do. I also have to keep making gluteny food for my family which looks much more delicious than the stuff I'm eating.

 

Since going gluten free at great effort, I have seen zero health improvements. Instead, I have had prostatitis for the past month and a half, and this week found out I have a kidney stone. I never had either of those ailments before - in fact, I felt like a pretty healthy person. I do not feel greater energy, happiness, or health, just the continual droning depression of having to fight my way to figure out what I can or cannot eat, and whether I accidentally got a crumb in the butter when I was making my kid's sandwich this morning.

 

I guess I just want some support. I don't understand how I could have this disease and it have no symptoms, and then I make this huge effort for my health only to get worse and my loved ones to get annoyed with me, and it has ZERO PAYOFF.

[bartfull]

I'm so sorry your family is being unsupportive. I hear a lot of that here on this forum and it ticks me off to no end.

 

If you are still "making gluteny food" for your family it sounds to me like you are probably getting cross-contaminated. If you are using the same butter for your kid's sandwich and then using that butter yourself it is almost SURE that you are getting contaminated. You need your own butter, mayo, etc. Even if the knife looks clean, after it has touched bread it will contaminate the whole stick/tub/jar.

 

So, assuming you are getting glutened (and I would put good money on it that you are), you are now finding out one of the nasty facts of celiac disease - that the longer you stay away from gluten, the sicker it will make you when you do have it. It happened to me. My digestive symptoms were so mild I didn't know I had it. After being gluten-free for about a year I got contaminated by someone's cookie crumb. I was nauseous almost but not quite to the point of throwing up. I was so fatigued I just wanted to lie in bed for days. And I had bathroom issues for days.

 

Have you read the Newbie 101 thread? If not, get over there and read it right away.

 

You should probably stick to while foods right now - things like meat and vegetables and fruit. gluten-free foods that are commercially prepared, like breads and cookies are full of calories and have no nutrition. And a lot if not most of them have just as much ohter garbage in them as regular junk food. If there are more than five ingredients in anything I just put it back. Just yesterday I was looking at a gluten-free item in my local health food store and it had all kinds of artificial color and preservatives. Maybe someone like me who has been gluten-free for over two years now could handle that, but you are still healing. You need to treat your digestive system gently.

 

You may also have a lot of vitamin deficiencies. Unfortunately doctors who even get it at all and manage to give a diagnosis, often just tell their patients to stop eating gluten and send them on their way. If you have had celiac for a while you haven't been absorbing the nutrients from your food and most likely DO have deficiencies. Those too can lead to the symptoms you describe.

 

It can be overwhelming at first, especially when it seems that the ones who are supposed to love you are against you. I can't fix that part (unless you send her here so I can slap some sense into her  ) but I can tell you that you have found the best support group anywhere, right here. We will answer any questions you have about the diet, what tests to ask your doctor for, which foods are best, and just about anything else that comes to mind. And if you need a shoulder to cry on or something to kick when you get frustrated, we're here for that too. ((((HUGS))))) to you.

[cyclinglady]

I'm sorry too that your family is not as supportive as you like.  It's a huge lifestyle change for everyone in your family.  For me, the hardest part has been going to restaurants.  It's a complete hassle.  But I have found a few local restaurants and that makes everyone happy (extended family).  

 

I was diagnosed in March too.  Went in for a routine colonoscopy and the GI doc looked at my chart and stated that he thought that I had celiac disease based on my thyroiditis and anemia.  I was in total denial.  My husband has been gluten-free for 12 years and there's no way that we BOTH could have it.  

 

There is a big payoff for going gluten free.  Though I did get some abdominal symptoms between the blood test and biopsy (ate a loaf of sourdough bread a day, along with every baked good I could make/purchase), prior to my diagnosis I  had been symptom free (had a few known food intolerances for years and years).  But in June, I found out that I broke a vertebrae doing NOTHING!  I'm scheduled now for a bone scan in three days.   So, please don't give up!  It's harder for people to realize how celiac disease can affect you and not everyone gets the classic symptoms.  When I got the fracture everyone in my extended family finally got it!  It's still really hard for them and they don't really get the cross contamination thing, but they are learning slowly.

 

So, hang in there!  This forum is wonderful!  

[Satobsat]

 

 

Wow, im so annoyed for you... im very depressed and like you, im not seeing benefits yet even after being gluten free for 6 mths... But I must say that my family has been awesome and supportive.. they want me around for a long time and make sacrifices to get me there for which im eternally greatful. I mean the day my son found out (9yrs old) he might be celiac (positive blood result) he said please don't tell daddy today as its his birthday and I don't want to upset him... broke my heart as he understands im suffering from depression because of all of this...

 

Talk to your wife, explain the damage gluten does to you and that if you weren't gluten free, you would be on your back ... she simply doesn't understand what celiac means so she needs to know..

[argybargy]

Thanks. The thing is, I can't say I would be "on my back." I didn't have any symptoms. That's what I'm struggling with - a huge life change that didn't cure anything visible. We know people with celiac disease! They get really sick if they eat gluten. I think if I had that, my wife would be totally on board. But she's probably a little convinced it's "all in my head" - and to tell the truth, I'm not unconvinced either. I mean, here's the plot:

 

1) Feel fine.

2) Doctor tells me I have to go gluten-free or I will have serious organ problems in a 5-10 year range. Not today, 5-10 years from now.

3) Feel like crap.

 

I'm frustrated and angry!

[argybargy]

And now, of course, I just made the kid toast and got the g'dm crumbs in the g'dm butter and now I don't get any butter with breakfast. I hate my life.

[IrishHeart]

Zero payoff? your payoff will be avoidance of intestinal lymphoma, diabetes, thyroid disease and all the other celiac-associated diseases that my come your way if you do NOT follow the gluten free diet. Your doctor is telling you the flat, honest truth.

 

You need your own stick of  butter. hon. Your own peanut butter, your own mayo and anything else you dip a knife or spoon into.

Cross contamination is not a good thing.

 

The prostatitis and kidney stone are indications of inflammation in the body--those ARE CELIAC SYMPTOMS!!

It could be worse. You could have prostate cancer or kidney disease. You have caught this thing early.

Bowel symptoms are not the only indicators of celiac, hon. Chances are, you have symptoms but you are not associating them with celiac. Most people think it's "all about diarrhea". It's not. There are over 300 symptoms associated with celiac.

 

We understand your frustration, we really do.  Bartful has given the hug, but now, I am giving you the "mother-hennish" serious pep talk.

 

It is not easy if your spouse is not supportive. But ask her this...if you had another autoimmune disease, like diabetes or cancer, would she be any more supportive.? if you get really ill down the road and chances are, you will if you do not remain gluten free ---and you cannot support your family--- will that be more of a "real thing"? Clearly, you guys are not getting the seriousness of this disease.

 

A reality check may be in order here. If your blood work and biopsy were positive, you have celiac, whether you believe it or not. You have celiac whether your wife believes it or not. And there are many people who do not have overt gut symptoms (like bathroom runs or vomiting, etc)

and they are celiacs, too. It's called Silent Celiac, but it is celiac nonetheless.

 

This does not have to be such a horrible existence for you!  Being a celiac does not get in the way of living a full and happy life.

There is plenty to eat. You need to do some reading and you need to get your wife on board.

If you ignore your diagnosis, however and eat gluten just because your wife is being non-supportive, you are at a huge risk for developing lymphoma, kidney disease and any number of Autoimmune diseases. That's also the reality that is our life. 

 

Please--you and your wife need to read some information about celiac, because your children should also be tested. 

Your parents, your siblings--also at risk. This is a familial disease.

 

 

I suggest you both read this book:

 

Real Life with Celiac Disease 

by Melinda Dennis and Daniel Leffler

 

Read this thread for some helpful tips on getting started on meals, avoiding cross contamination, etc. 

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

If you need help, we are here for you. But you need to be patient as your gut is still healing and you may not feel "super great" for a few months but it will get better.

 

And you need to get your family to see why you have to be careful and you

need to stay the course on this G F diet. If you continue to feel frustrated, find a celiac support group near you.

 

My hubs went gluten-free with me because he knew it was easier and safer and because he saw me dying from long undiagnosed and untreated celiac.

 

We just eat the same pastas, breads, etc rather than making separate meals and we eat really well.

This isn't rocket science, really...just eat whole, plain foods. Everyone can benefit.

 

Have your doctor do follow up care (see the Newbie thread for what you need ) and just try to relax.

Things will get easier as you learn the ropes.  We've all been there/done that. 

 

We can help.   but you need to hang in there.You can do this!

[Tbolt47]

Argybargy,

 

One of the most profound things in life  someone can accomplish is to change the way another individual thinks. Unfortunately , this can also be one of the most difficult things attempted. It may be beneficial to have your wife at your side when you are attending your next office visit with the MD who diagnosed you with Celiac. With most illness/disease the synergy and support created by your loved ones is some of the best medicine.

[mommy2krj]

I have a question.....

 

If you had no visible symptoms....why were you tested for Celiac? From everything I've read and what I've gone through personally this isn't a random test that doctors just throw in to see if you have it.

Were there other things that you were experiencing at the time that made the doctor question the possibility of you having it? Not everyone has digestive issues. I'm just curious as to the reason behind the testing in the first place.

 

I think it's terrible that your wife is acting like that...would she act like that if it were one of the children...which, by the way, they need to be tested too.

 

Hugs to you. It is a lot to go through. We went gluten free as a house hold when my little guy tested positive. It's hard work and I can't imagine trying to keep cc from happening if I still let gluten in!

 

Good luck!

[nvsmom]

For some, once our celiac disease is being treated via the gluten-free diet, our body gives itself permission to express other issues like hypothyroidism or other heath probelms that have been just below the surface. I would hazard a guess that 25% of us often end up feeling worse before we get better and it is not always due to celiac disease, some other health issue was just waiting it's turn in line to show off.

 

I personally felt much worse from months 3-6 gluten-free. I was super fatigued and more moody, I felt slightly fluish all the time, my hair was falling out and my joint pain was outrageous. It could have been from my thyroiditis expressing itself, or my celiac disease giving a last hurrah. I still don't know, but now that both issues are being addressed, I feel quite good (one year + gluten-free).

 

I guess what I am getting at is, if you feel lousy, and you are sure it is not a celiac disease symptom, then you need to look into what else it could be.  Hypothyroidism is found in more than 1/10 celiacs, and might be a good place to start.

 

I am sorry you are getting no support and there is so much risk of cc for you. If your family isn't being careful, you mught have to make the house gluten-free, and do all the grocery shopping. Get rid of all contaminated spices and cooking/baking supplies, soups and boullions that hav gluten, replace bread and past with gluten-free varieties (Udi's and Silverhills isn't bad), and stock up on yams, potatoes, and rice.  There is no reason in the world that your family needs to eat processed carbs anyways - it is not required for life - so if they won't be careful to keep you healthy, then take all gluten away.

 

You should probably get your kids checked for celiac disease  before you reduce their gluten, celiac disease runs in families.

 

Best wishes.  I hope things get easier for you.

[cyclinglady]

A good Sharpie (permanent marker) can be your best friend (that and some crazy colored duct tape)! 

[kareng]

Why did a doc test you for Celiac? What symptoms or other illness caused you to be tested?

[howlnmad]

argybargy,

 

  I'm going to start by saying that I can't really help with any of the medical stuff, I'm not celiac but my wife is. But I can try and give you some help with the other issues.

  I had some real problems adjusting when my wife was diagnosed. I tried hard not to CC her but I would occassionally goof and ruin something for her. I didn't think the food was very good but we were both new to the whole thing. Cleaning out the pantry, seperating the cookware and utensils, knowing what I could use and what I couldn't use, all frustrated me. Have you segregated your cookware and utensils yet? It's important that YOU don't use any old plastic containers, wooden spoons, old teflon pans, or anything porous. Stainless and glass are your best friends in the kitchen. You need to keep your own butter, peanut butter, jellie and anything else that may be used to make sammiches and such.

  There is no reason that you can't coexist in the kitchen. Once we got used to cooking with ingredients that we weren't familiar with, the food tasted better and for the most part, I eat what she eats. She has her own bread and I have mine. She has her own pasta and I have mine (for the most part I eat hers, cept for spaghetti and raviolli). She has her beer and I have mine. I know that if it's in a glass container, it's gluten-free and be careful what I do with it.

  Eating out isn't all that impossible. Eateries with gluten-free items are rapidly growing. If you're planning on eating out, make a phone call ahead and ask about the menu or go online.

  I get my thoughts so scattered that I'm sure there is more I could add and when I think of it, I'll get back here.

 

 

Just give her a little slack, it's difficult for some to adjust.

 

 

Oh yeah. Have you told her that it's genetic and your kids could possibly have it?

 

 

Sorry if my thoughts are to scattered to understand.

[notme]

argybargy?  another squeeze fan????!!!!  yay!  it's cool to be a cat-at-at-at    now i must dig through my compact disks....

 

(starving to death, husband whips out a sandwich my brother bought  "sreee hours l8tere"  my grilled cheese is still too hot to cut   what the french.  vanilla....)

 

ok.  we have a shared household - it was touch and go there for a minute.  plenty of explaining about cc <o, my gosh.  you should have seen everybody's jaw drop and the eyes rolling when i told them they had to take out their sandwich meat before they came in contact with any gluten bread!!  they were like YOU HAVE GOT TO BE KIDDING.  nope..  dead serious.  we worked around it, (doesn't work to share, too much forgetting and worrying 'is it good?  arghhhh!!' )   and figured out that i just should have MY OWN packages of meats and cheeses.  i am 3 years in, i don't know how i would have been able to keep trying without my husband's help.  even when i forget, he reminds me:  you should take some (whatever) out for yourself before we put it out for everybody to cc.  

 

we pretty much eat gluten free here.  most things can be done gluten-free.  cake, cookies and desserty things are a little trickier.  pasta and bread are the main 'subs' we use.  yes, for the love of mike, get your own butter, jelly, mayo, etc - cyclinglady has a good point - sharpie is your buddy, mark anything you want to keep crumb-free.  sounds like you are kitchen-oriented - that's a good thing!

 

our son DOES have type 1 diabetes - he was diagnosed with it years before i ever even heard of celiac.  <which he probably also has but is in denial.  that is a story for another day.  i don't know what i possibly could have done to prevent it but i sure would have liked to give him a better chance of not developing it if maybe he was kept gluten free earlier in his life.  but i didn't know. you have been given an opportunity i didn't have, i hope you make the best of it  

 

you are in the right place to vent, ask questions, and get some good advice.  i think, between all of us, there are very few situations that we haven't been in and through..

 

the wife is probably sick of you (i know my husband was) right now because you're paying more attention to food than her   us wimmens is like that.  "TELL ME I LOOK PRETTY!!  DOES THIS MAKE ME LOOK FAT?"  well, that is just too bad.  it's not about her right now - time for you to take care of yourself!   surely, i would rather eat/deal with the gluten-free thing than have to, say, inject myself with insulin or have to get the hubs to take me for chemo treatments!  it's not the worst thing that could be wrong with you!  she needs to remember that.  hang in there, buddy, staying strict with your diet is (yes, indeedy) going to keep you from all sorts of health issues later.  you want to see those babies graduate and dance at their weddings, right?  

 

seriously, are you the world's other squeeze fan - going up to find said music  

[IrishHeart]

 

 

seriously, are you the world's other squeeze fan - going up to find said music  

 

 

'SCUSE me, madam...but I am the original Squeeze fan who listened to Tempted at least 8,543 times on the jukebox as I poured drinks while teaching classes in the day and going through

grad school and I bought a tooth brush, some toothpaste, a flannel for my face......

 

Thanks for hubbey/wifeying tag-teaming this poster with me. I knew if he heard it from a real couple who gets it that it would help waaaay more than coming from just me.

I lurvs you guys.

 

But I did tell him--have your children tested and I am saying it again. Argybargy...please HAVE your kiddos tested.

 

 

 

.

[dilettantesteph]

Let me try to give you some hope.  I had obvious symptoms, but then again, I had a whole bunch of other symptoms too that I didn't know were from gluten.  You may find, once you manage to get rid of all that cross contamination, that things go away that you never imagined were from gluten.  I felt like I was aging in reverse for a long while as all that damage healed.  I had improved mood, more energy, more strength, my arthritis went away, my vision went from 20:40 to 20:20, my back stopped bothering me, and so on.  I hope that your wife will get on board.  It is a lot harder with an unsupportive spouse.  I have read that it will improve your love life, maybe that will interest her.

[IrishHeart]

 You may find, once you manage to get rid of all that cross contamination, that things go away that you never imagined were from gluten.  I felt like I was aging in reverse for a long while as all that damage healed.  

 

Steph is right. This is true for most  of us.

 

I am aging backwards, too. Like that guy in the movie...I am Irish Buttons. 

[howlnmad]

Steph is right. This is true for most  of us.

 

I am aging backwards, too. Like that guy in the movie...I am Irish Buttons. 

 

There must be some truth to this.

 

If I have to hear about my wifes "perfect blood" one more time..............................................

[Adalaide]

I'm not going to blow sunshine and rainbows up your butt, because I'm just not like that. I have been successfully gluten free because I have a wonderfully supportive husband. I suppose I could have also done it alone. What I could not have done was manage this fighting him every step of the way, especially with him not being gluten free. We have a shared house, which takes absolute cooperation and consideration on the part of the gluten eater.

 

This sort of thing makes me fairly angry. What the hell is the problem with people who make a "in sickness and health" commitment then up and say they can't deal with it? Doesn't want to hear about it any more? Well that's just too damn bad. IMO if that is her attitude about your health, because that is what this is, it isn't food, it isn't about dinner, it is about your health, you guys have some very serious issues to work out. There are so many dinner options that are naturally gluten free that can keep you from feeling bad and no one will ever notice. Meat, potatoes and veggies, fruit and ice cream for dessert. What is wrong with things like this that she would rather ostracize you than have you be part of the family you created together?

 

As pointed out, you aren't symptomless. The damage from celiac doesn't happen overnight and the healing won't either. I didn't notice if anyone directed you to the newbie thread or not, but if not you need to check it out because it is possible with your wife's decided effort not to cooperate that you are missing some things you need to cover. You need to have a serious discussion about how to run your kitchen together to keep you healthy. It may help her to know that once basic rules are set up in the kitchen and everything becomes routine that it does become less a topic of discussion and more of a this is just part of life sort of thing. If she can't accept that you have a serious disease and this is how it is treated instead of taking a pill every day, you'll have some hard decisions to face.

 

ETA: I guess I should add that I don't want to seem all gloom and doom and crap. You just need to get your wife to be on your side. Lots of people live happy, comfortable lives with gluten eaters. I do. (That is as much sunshine as I can manage today. )

[notme]

'SCUSE me, madam...but I am the original Squeeze fan who listened to Tempted at least 8,543 times on the jukebox as I poured drinks while teaching classes in the day and going through

grad school and I bought a tooth brush, some toothpaste, a flannel for my face......

.

 

listening to it right MEOW!  

 

There must be some truth to this.

 

If I have to hear about my wifes "perfect blood" one more time..............................................

it's true!  i have PERFECT BLOOD!  i believe the nurse's exact words were "i have never seen better blood test results"....

 

never better = perfect, in my mind...................    

[IrishHeart]

 

it's true!  i have PERFECT BLOOD!  i believe the nurse's exact words were "i have never seen better blood test results"....

 

never better = perfect, in my mind...................  

 

that math logic works for me.

[howlnmad]

that math logic works for me.

 

I hope the two of you don't use the same time system as well.

 

 

 

 

Sorry, I think I have caused this thread to get a little off topic.

 

Now, back to our regularly scheduled broadcast.

[IrishHeart]

I hope the two of you don't use the same time system as well.

 

 

oh hush up, you sillypants.

 

argybargy---hope you got all the good advice we have to offer. You may notice we also have  fun on here and approach this  diagnosis and what it means for the whole family's "new normal" as well.... normal. 

 

You have lots of reading to do and some changes to make, but you and your wife and family can do this! We all did it. 

 

Best wishes for full healing! 

[1desperateladysaved]

Since you are doing the cooking, can't you just make gluten free?  Meat and vegetables are gluten free.  I make excellent muffins out of almond flour.  Even my family likes these, but one.

 

Hang in there.  My family is not completely on board, but it is getting better.  My husband finally agrees that I do have a problem with gluten.  He realizes things are getting better.  This took some time and I needed to go through some healing first.  I often wish I had a Mommy to take care of me, but I am the Mom.  Realize the adjustment isn't forever.  I also had times I didn't believe that I had the problem, but my test results keep backing up the theory!  It doesn't take much reacting to accidents to get one believing!

D

[dilettantesteph]

 What the hell is the problem with people who make a "in sickness and health" commitment then up and say they can't deal with it? 

 

Getting faced with this medical condition really reveals the character of the people we deal with.  When someone's food is more important to them than their loved ones' health, something is really wrong.