Scared

[Stacie H.]

Terrified is more like it!!

You’ve all been so helpful and supportive in the past. My husband had another mini meltdown last night, and I’m not sure how much more I can take.

I suspect he’s gluten intolerant, and we’ve been gluten-free for 5 months now. I think there has been improvement, but he doesn’t see it. He’s frustrated beyond belief and mad that he has to be so careful about what he eats. He is still suffering with random spasms and cramps everyday and as he puts it, gets no peace.

The thing is, I’m the one who’s done all of the work, all of the gluten-free research. And I’m stressed to the hilt, exhausted, and probably a bit depressed. He’s sick of doctors (been in and out of surgery and doctors’ offices for two years now) and feels like they are only making things worse. He’s sick of having a new pill shoved at him every time he turns around. And I can’t blame him for that. But he also says he just does not want to add another doctor (this time GI) to the list, and he’s positive his stomach problems are due to the meds (thyroid, calcium supplements, blood pressure), not gluten intolerance.

And I’m sick of hearing our families’ “opinions.” My family lives here in Houston, his is in Canada. His dad has Celiac so they have their opinions, and my parents (mostly my mom) has theirs. It’s to the point where I don’t want to talk to or see them anymore because I’m sick of talking about it.

I was up most of the night; I don’t think I got 3 hours of sleep. I’m just about to wash my hands of it all. I don’t mean leaving him. But I work full time, have a home to clean and take care of, and I NEED to do something for myself. If he doesn’t feel like going gluten-free is helping him, I don’t want to waste my time cooking everything from scratch.

Actually, I COULD handle all of this, if I thought it was doing any good and we were on our way to a normal life. But I can’t stand the thought that this is as good as it gets. Our 2nd wedding anniversary is next week, and we’ve been dealing with his health problems since before that. In those 2 years, we’ve had sex twice. We still talk occasionally about having a child someday, but we are both in our late 30s. I’m starting to feel the chances slip away. Yes, we are both open to adoption, but just are not in the shape for it right now. We rarely go anywhere, and anymore I just don’t want to….

I’m not sure what to do, or what I’m wanting from you all. Mainly I just want to vent, I guess.

Thanks!

[spunky]

This isn't easy. I feel for you. You need to get control of your lives again.

I don't know how he'd feel about being checked out by that Enterolab everybody here talks about. But it sounds like it's something you can do from home, noninvasive, and could maybe hold some answers, either to SHOW him it IS gluten, or to reveal any other hidden problems.

It might be a good idea to get him off the dairy as well, at least until there is consistent improvement.

For me, 5 months gluten free (I'm also dairy free) I was frustrated because it seemed I had good days, bad days, and never really felt normal, although I THOUGHT I was a little better.

Finally, out of desperation, I made myself a little chart, listing my symptoms along one side of the page, with numbers 1-10 under each symptom. THen I listed the date across the top of the page. I charted each symptom by putting a dot anywhere between 1 (good) to 10 (awful) and watched that along with another notebook in which I just wrote down everything I ate each day. With that, I was finally able to visualize very GRADUAL improvement, and it did help me to see that I was improving, although in a very slow, stepwise manner.

Also, if you write down everything you eat, by charting your symptoms, it makes it easier to see which things might have thrown you off again.

I hope this is helpful. Hang in there and don't give up. It might be helpful if you two could find a support group too.

[Budew]

Changing your diet is hard for everyone. Doing it and feeling like it is not helping makes it worse.

I agree about charting everything. Sometimes charts can give you the direction you need to find the right combination or define a culprit.

My sister's husband as resistant for many years. Same thing we'd all bend over backwards to support him and he felt angy he had to do it. It's been about 8 years now. It took him a long time to come around, deal with the related feelings, but he got there because we did not give up on him.

Understanding and support are key to a good marriage.

Vent here! Caregivers need support too! Not to mention "thanks " once in a while.

[Canadian Karen]

Stacie, just wanted to send lots of hugs your way as it seems like right now you have the weight of the world on your shoulders.

Depending on how long this insidious disease has reeked havoc on your husband's system will directly affect how long it takes him to see any improvement. I don't mean to scare you, but depending on the severity, it could sometimes take two years for the damage to be undone and the feeling of wellness to return (especially for adults, children bounce back much more quickly......)

In the meantime, you need a support system. This is an awful lot to deal with for someone who is still a newlywed and should be having the time of your lives! Even if your husband will not go, you need to go, since caregivers often shoulder not only the stresses that they have to deal with, but the stresses of the person they are caring for also. That can be a huge burden that nobody should be expect to deal with on their own! Even if you don't feel you have the time to go to a support group, come here to vent anytime you like! We have great ears here! And lots of hugs to go around......

Hugs and take care of yourself!

Karen

[tarnalberry]

In a situation like this, I have to wonder if he's getting gluten somewhere else - somewhere you don't see it. But you can't do the whole thing for him - he's an adult and has to be responsible for himself. It's not a matter of you "letting" him fail, he does it all on his own if he gets sick. I'm sorry he's having trouble with it. Did he ever really truely give it a go for a month or two and REALLY try before giving up, or did he set himself up for failure from the start?

[Jestgar]

Hi Stacie,

You could together make a commitment to getting well. First find out if some of the issues are food related - do an elimination diet and carefully and together make notes of everything that happens.

Where you go from there will depend on what you find, but I always feel better when I have a plan and I feel like I'm in control of a situation. Maybe if he has taken charge of his health mentally it will start to make a difference in his appraoch to getting better. The key to empowerment is having him involved in his own health

[elonwy]

Welcome to "Caretaker Syndrome". Having gone through taking care of someone who was very ill and not really happy or involved in his recovery, I get where you're at. The doctors and the medical system fail to mention that taking care of someone who's that sick can have as much of an effect on the caretaker as on the person who's sick. The best way to help with this is support from outside your direct family and friends. Your local hospital will probably have information on groups that meet, or you might want to consider just talking to a counselour about it. There is depression and all kinds of things that can creep up on you when you're trying to be strong for someone else. Doesn't mean you're weak, it just means that you've got alot on your plate, and sometimes you might need a little extra emotional help.

If anyone gives you grief about what you're going through, don't listen to them. We're here to help, and we get what this is like. Take a minute for yourself, make sure to stop on a regular basis and do something that takes care of just YOU, and maybe talk to someone who's got experience with this. Don't let trying to take care of him ruin your health. With a little extra support, all this is possible.

<hugs>

Elonwy

[Stacie H.]

In a situation like this, I have to wonder if he's getting gluten somewhere else - somewhere you don't see it. But you can't do the whole thing for him - he's an adult and has to be responsible for himself. It's not a matter of you "letting" him fail, he does it all on his own if he gets sick. I'm sorry he's having trouble with it. Did he ever really truely give it a go for a month or two and REALLY try before giving up, or did he set himself up for failure from the start?

He hasn't given up yet, but is talking about it. We've been gluten-free since late May...5 months. There have been some accidental glutenings, but only 2 or 3 that I'm aware of.

As far as other items...that's where I have a hard time. Our toothpaste is either Crest or Colgate, can't remember which. He uses Finesse shampoo and Old Spice body wash. We know his meds are gluten-free, and we've changed out the dog food and treats.

[CarlaB]

I sent you a pm.

[Stacie H.]

Thanks everyone,

I know I won't be able to get him to go to a support group...he doesn't even think that gluten could be the problem. But I'll see if there's one I can find. We have another friend going through this, but he's been gluten-free for over a year and feels better, so he's all gung-ho about it and seemingly has no problems living that lifestyle.

For my own sanity, I'm going to let it go. He can eat what he wants, or he can start doing the research. If he decides to go back to gluten-free, I'll be there for him. I have to make him take some responsibility for it all.

In the end, he may have just been venting last night, I don't know. He may have no intention of stopping the gluten-free lifestyle. But I'm not going to nag him about it anymore. I'm more than willing to do what I need to do to help him, but it's got to be up to him.

[Guhlia]

I don't have too much to add, except that I agree that you need to have a little break. Perhaps you could do something nice for yourself? A massage, a makeover, a good haircut, a nice bottle of wine... When you spend all of your energy taking care of someone else, you need to remember that you still have to make time to take care of yourself.

I'm sorry, I don't think I've ever seen any of your posts before. Has your husband tested positive for celiac disease? What made you think it was a gluten intolerance? I'm not trying to play devil's advocate, but it's possible that gluten really isn't a problem. I'm not saying that it isn't, and I don't know your history, it just seems to me that perhaps it could be something else. If it IS gluten intolerance, here are a few things to think about that could be continuing to make him sick:

chap stick

your makeup, particularly lipstick, but even pressed powder could do it

lotions (vitamin E as an ingredient can be a culprit)

contaminated toaster

contaminated microwave at work (dirty, I've seen food hanging from the tops of some work micros, yuck)

off-brand sodas

mainstream products that appear to be gluten free, but are CC'd

specialty products that are gluten free, but not made in a dedicated factory

charcoal grill/contaminated grill

art products (Play-doh, paints, glues, etc)

feminine products - not all are gluten free (use your imagination)

envelopes/stamps (these should be gluten free, but some swear that they've been glutened by licking them)

lactose intolerance from flattened villi

other intolerances (dairy, soy, corn, nightshades, lectins, etc)

I hope you figure things out. It's very difficult for the family of someone who is chronically ill. Please don't get upset by this suggestion, but perhaps therapy would help you bear the burden a little better. When my daughter was very ill, as a baby, I had to turn to therapy to help me cope with the additional workload. It also gave me "me-time" which I so desperately needed. Good luck! I hope you guys can get to the bottom of things soon.

[par18]

Terrified is more like it!!

You’ve all been so helpful and supportive in the past. My husband had another mini meltdown last night, and I’m not sure how much more I can take.

I suspect he’s gluten intolerant, and we’ve been gluten-free for 5 months now. I think there has been improvement, but he doesn’t see it. He’s frustrated beyond belief and mad that he has to be so careful about what he eats. He is still suffering with random spasms and cramps everyday and as he puts it, gets no peace.

The thing is, I’m the one who’s done all of the work, all of the gluten-free research. And I’m stressed to the hilt, exhausted, and probably a bit depressed. He’s sick of doctors (been in and out of surgery and doctors’ offices for two years now) and feels like they are only making things worse. He’s sick of having a new pill shoved at him every time he turns around. And I can’t blame him for that. But he also says he just does not want to add another doctor (this time GI) to the list, and he’s positive his stomach problems are due to the meds (thyroid, calcium supplements, blood pressure), not gluten intolerance.

And I’m sick of hearing our families’ “opinions.” My family lives here in Houston, his is in Canada. His dad has Celiac so they have their opinions, and my parents (mostly my mom) has theirs. It’s to the point where I don’t want to talk to or see them anymore because I’m sick of talking about it.

I was up most of the night; I don’t think I got 3 hours of sleep. I’m just about to wash my hands of it all. I don’t mean leaving him. But I work full time, have a home to clean and take care of, and I NEED to do something for myself. If he doesn’t feel like going gluten-free is helping him, I don’t want to waste my time cooking everything from scratch.

Actually, I COULD handle all of this, if I thought it was doing any good and we were on our way to a normal life. But I can’t stand the thought that this is as good as it gets. Our 2nd wedding anniversary is next week, and we’ve been dealing with his health problems since before that. In those 2 years, we’ve had sex twice. We still talk occasionally about having a child someday, but we are both in our late 30s. I’m starting to feel the chances slip away. Yes, we are both open to adoption, but just are not in the shape for it right now. We rarely go anywhere, and anymore I just don’t want to….

I’m not sure what to do, or what I’m wanting from you all. Mainly I just want to vent, I guess.

Thanks!

Stacey,

Is your home basically gluten-free? Also do you think your husband is careful trying to avoid gluten? How severe were his symptoms and what if any improvement have either of you seen? Just trying to get a feel for where you were in the beginning as compared to where he is physically now. Was your husband diagnosed gluten intolerant or is he just "playing" with the diet? Two things that probably will not work with the diet are carelessness and stubborness. Being mad about what it is you have to eat and how careful you have to be just make things worse. Family and or friends are best left out in the beginning if they are not understanding or supportive. The thing that made it good for me was my wife bought in to the diet from day 1. I do most of our cooking so she eats gluten free almost always even though she does not have to. I decided if the diet worked I would try to set a positive example by acting completely normal. I really don't care what my family or friends think about what I am doing. If they have an opinion I guess they are keeping it to themselves. The main thing that encouraged me was an almost immediate positive reaction to the diet. In only a couple of days all of my gastro symptoms disappeared. I have no desire even by accident to experience them ever again. It is normal for you or him to feel sorry about the situation but it is not very productive to keep dwelling on it. Hope this helps.

Tom

[kbtoyssni]

Sounds like a really tough situation. Sorry you have to deal with this.

One thing that jumped out at me was that he believes his problem is due to meds, not celiac. It sounds like you will need to get an "official" diagnosis for him to fully commit to this. And I completely understand his unwillingness to add another doctor. Even if you did go to a GI and got all the blood work and scopes, you may or may not get a diagnosis. I agree with whoever suggested Enterolab that that might be the best way to go. You'll at least get confirmation of gluten intolerance if that's what it is (which is my mind is just as good as a celiac diagnosis) and you won't have to add another doctor.

I also have to wonder that if he think this is med-related, is he really 100% gluten-free?

The other thing that jumped out at me was the emotional strain this is having on you and your marriage. I think you need to focus on taking care of yourself, too. Maybe even getting a therapist would help.

[rez]

I so feel for you and understand. I am the care taker for my son. No one really understands how much time and effort go into researching, shopping, cooking and cleaning up the kitchen! This has been taking over my life and it puts stress on everyone. You can't just call the pizza guy anymore! All the conveniences are gone, but it does get better. Why don't you do Enterolab. We did that, and I really don't know it's 100% accurate but the gene test is at least a for sure thing. You could at least check that out. I know the most of medical community doesn't really recognize Enterolab, but let's face it, most of the medical community has no clue about gluten intolerance. It's super frustrating!!!!!! I'm at the end of my rope as well and feel like I'm going crazy. I have a high maitenance three year old and a ten year old daughter whom I feel are being neglected through all this. All I can say is hang in there and you're not alone. Get the gene test through your doctor or Enterolab. It can't hurt.

[Stacie H.]

Update:

We had a long talk over lunch yesterday (we both go home for lunch). Neither of us slept the night before, so we were both exhausted.

He’s decided to go see a GI. I guess he’s been having a lot of cramping lately, and I guess what could be described as spasms in his gut. They are random, but really bother him. I can often hear his stomach gurgle from across the room.

I also found the website for the Houston Celiac support group, and called the president. She was very helpful. Turns out one of their medical advisors (a GI) is on staff at MD Anderson Cancer Center, where my husband is already a patient. He’s recovering from thyroid cancer (4 surgeries in less than 2 years), and they are continuing to monitor him.

Anyway, she gave me the number to this doctor’s direct line. I wonder if one of my husband’s other doctors could get him in to see this guy, but I guess we’ll go this route first. He wants to wait a week or so before calling, because he just started a new BP medication (Avapro) and wants to see if there’s any change with it.

The president of this organization was disappointed to hear we’d already been gluten-free for so long. She thinks it’s going to be very very difficult to get a diagnosis now. I explained that we didn’t realize this until it was too late. She also knows the head at Enterolab and said that while the test wasn’t really accepted by the mainstream medical community, it would be the best bet in this situation. She still recommended that he eat gluten for a couple of weeks prior to taking the test.

I also told my husband that until he said otherwise, I’m stepping back from all of this. I don’t mind helping by calling doctors and making appointments (my schedule allows for it moreso than his), but I am no longer going to push him to do anything or nag him. I asked him flat out if he wanted me to continue what I was doing as far as cooking gluten-free meals, etc. He said yes.

So that’s where we are at now. I’m still very worried, more about his mental state than anything. He’s upset and angry. I talked to him briefly this morning before I left for work (he was still in bed). He said he didn’t sleep last night, either.

I’m worried about the spasms in his gut. Is this common in others? He says he has never had bleeding, and he is not losing OR gaining weight. My biggest fear is that he develops colitis/IBS/Crohn’s. I have two friends who have Crohn’s, so I know how bad that can be.

[tarnalberry]

The pain that I feel when I get significantly glutened (or dairy-ed) feels like spasms. I'm not sure it is, but it feels something like that.

[jerseyangel]

I definately get what could be described as spasms when glutened. Like a tight squeezing, that lets up and comes on again. This is accompianed by an almost constant feeling like I need to run to the bathroom. It must be very difficult for your husband to be feeling this way on a daily basis.

I'm glad to hear the two of you had a calm conversation about all of this. Good luck with the new doctor--I hope that things start to improve for him soon.

[Budew]

Wow, that is a whole lot to handle. Hopefully sharing eases the burden. You guys sound like a great couple. I went through a lot of emotions with restrictions, tests, and doctors. It helps me to be able to express my feelings without judgement. Validate my feelings. No blame. Nobody to try to fix it. Just someone to listen supportively and hold me when I am really at the lowest.

I think you mentioned intimacy. I as thinking about it last night. We make it a point to always go to bed and get up together. We always end the night with a kiss. I usually rub his back. In the morning we have a similar routine, sex occassionally. I've been too sick. But we agreed that sex was not a big deal. Being close, showing you love and desire your partner can be quite satisfying. It is a wonderful part of being married. DOn't let it slip away.

Actually Dr Phil's books really improved our communication. We were so careful about what we said and did, we didn't fully express ourselves. The books helped.

Good luck.

[Luvs to Scrap]

Stacie,

I can totally empathize with getting frustrated about being the one doing all the work for your DH's diet. That would be me too with me DH and DS. I do all the cooking and all of the research. (I think I remember both of us cooking up a storm so that our husbands would have something to eat while we were both going to be gone for a week) My DH has just recently taken a slight--and I mean slight--step toward helping with his diet. He actually emailed one restaraunt that he eats at once a week to find out what was gluten-free. (for months he was denying he got sick/glutened there but he was ALWAYS sick on Thursdays after eating there!) He is also finally being more careful at potlucks, etc. It always frustrated me that I would work so hard to have safe food for him and then he would help himself to something what was unknown at a potluck. He has been gluten-free for a year now and we are seeing improvement. Of course we have learned a lot in that timeframe and he was getting contaminated a lot the first 5 months not knowing that his food couldn't touch gluten. (This site is awesome!)

I am glad DH is going to try a doctor and know from what you said that this is a BIG step. Hopefully you can get some answers. The work is much more worth it if you know that there is hope in the future and that gluten really is the problem. We are thinking about enterolab for our kids since their testing is inconclusive and after putting DS on gluten-free diet because our doctor told us to a GI wants us to put him back on a regular diet to see how sick he will get for 6 months. We have seen some improvement and don't want to go there.

Take care! You are an awesome wife and support for your husband. I think letting your husband take the lead for awhile would give you a break as far as pushing and reminding. It is his health and he needs to take responsibility for it--be there to support but if he isn't wanting the diet don't put yourself through all of the stress for nothing.

Hugs! Kendra

[almostnrn]

I really hope you have found some comfort here. My heart just goes out to you and your husband. All I can think of is that extreme frustration and anger when I was first diagnosed. I would get so discouraged every time I would walk into a grocery or even worse let myself get soooo hungry that I would break into tears because I couldn't find anything to eat. As I look back I realize that not only was I overwhelmed (still am sometimes) but I was so sick I couldn't be rational. My husband was stationed overseas at the time so he could only sit there and listen to me complain. When your husband comes to terms with the illness and really starts to feel better I know he will spend the rest of his life thanking you and loving you even more for all you have done for him (because as I've read through this post you have done an amazing job!)

On a side note....one of the other posts in here made mention of always going to bed and getting up together. I couldn't agree more! Before my EGD when I was back on regular food I was really sick. The migraines were one of my biggest issues. But every night I had one, no matter what time it was, my sweetie would get the kids handled (thankfully they are older and pretty independent) and come to bed with me. That alone worked wonders especially during a time that could have put so much stress on our relationship. Kudos to everyone here...I can't believe it took me 1 1/2 years to find this site. The information and support are second to none.

[phakephur]

just wanted to add pet food. dog biscuits, etc. as a source of contamination in the home

[jebus]

Dear Stacie,

I just read about what you go through with your husband and yes, plenty of us get it! Next month is our 31st anniversary, my husband is diabetic, both our sons are bi-polar, the older is a recovering heroin addict who has been clean for 28 months now (we almost lost him 3 times in 2004). Sometimes (okay, lots of times, I want to run away from home), but I can't 'cause I'm the grown-up. The only one you can truly control is YOU. Let him do what he will, he's an adult. Let him do the research, the trial and error and he will learn if he wants to live as comfortably as possible. I wish you all the patience in the world; you're going to need it!

Jebus

[georgie]

just wanted to add pet food. dog biscuits, etc. as a source of contamination in the home

In which way? I am new to this. Can a crumb really have that effect?

[phakephur]

See Ghulia's post on page 1 of this thread.

After I went gluten free, I had symptoms for months, particulary DH on my face. I switched my cats over to wheat free food and my symptoms cleared up. They were eating in the kitchen and sometimes I had fans going, so I think crumbs probably drifted into my food.

I'm not suggesting everybody needs to switch pet food, but it's something to be mindful of if you're handling it and then touching food or if the animals eat in the house.

I'm not overly paranoid about gluten, though. I have 2 horses and there's all kind of grain and treats at the stable and I've never gotten glutened there.

[daffadilly]

Stacie, I sent you a PM