29 replies to this topic

[heyteacher]

I don't know where to put this so I guess this is as good as any??? I don't have an official diagnosis, so I am in limbo so to speak.

However, my husband is not supportive of me trying to go gluten free. He isn't supportive of any health issue that I have. The diarrhea, nausea, not being able to eat without being VERY close to a bathroom, the migraines. I believe all of these things (and more) could be caused by either a gluten sensitivity, or celiac. But I need his support to try and go gluten-free. We have 4 children ages 18, down to 12. One being a special needs child that has Down Syndrome. We are very busy, like most families, and I need him to help me so that I can start to hopefully feel better. I also think he feels that Gluten-Free food will be quite expensive, and it will be--I think--my son was on a Gluten-Free diet for about a year. The food was very pricey, and hard to find in our area (very rural)

I have had a colonoscopy a few years ago, and doc diagnosed IBS. SO husband wants that to be the end of the discussion and I just live this way forever. Well, I've tried for 3 years. I'm tired, feel awful, and need to get something figured out.

I have shown him things on-line to try and show him that my symptoms are very simliar to people that have celiac disease. He still thinks it's all in my head. Even though I have to run to the bathroom after eating some (most) meals. I can't eat if we are in the car or at one of my kids ballgames for fear that I won't be able to get to a bathroom. Crazy way to live if you ask me.....

I welcome any suggestions that you have for me. He isn't a terrible person. He has strong opinions. He tends to think if we don't deal with it I will just get better as fast as I got "sick" He gets upset when I go to a Dr. mostly due to the $. He tends to think I am fine since there is no fever or visible signs for him to see. I have no rash. It's all intestinal--for lack of a better word--although I do get sores in my mouth, like a canker sore. Unrelated???

Thanks so much for any advice you can give me.

[AzizaRivers]

I'm so sorry you're going through this, and that you don't have the support of your family. And I promise I won't think negatively of your husband. I had a lot of trouble getting my mother to understand and it didn't make me love her any less, it's just hard. I hope he comes around for you. It's tough because it sounds like a lot of his concerns are financial? I'm going to offer up a few ideas that might help, indirectly.

Do you think it would help him understand if you were able to be diagnosed? I get that if you went through testing and it was negative that might cause some problems with him...but perhaps if you got a doctor to back you up, it might help. Canker sores, by the way, are VERY common in celiac disease patients. I get them too. There are also many experts who have found correlations between Down Syndrome and celiac. You don't say why your son was on a gluten-free diet (is it the same child who has Down?), but for some reason, rates of celiac have been found to be higher among people with Down. You might want to consider having your children tested as well as yourself.

A colonoscopy would not have been able to tell your doctor anything about celiac. Celiac patients are commonly diagnosed with IBS before they get the real answer, because IBS is a kind of diagnosis where the doctors think "I don't know what's wrong with you, so we'll call it IBS and call it a day." If you wanted to me tested, you would need to find a willing doctor, who would first run a blood antibody test and then usually an endoscopy with intestinal biopsies afterwards. Some people stop after a blood test if it's positive, but many do the biopsies then to evaluate the villi damage.

I know this will probably not help you convince your husband, but if it makes you fell any better...gluten-free does not have to be as expensive as some people make it. It is expensive if you simply replace all the foods you normally eat with gluten-free packaged versions, and if some people have money to do that then it's their choice, but many of us (including myself) don't. I eat lots of fruits and vegetables, and I buy things like beans (dry), nuts, rice, millet, etc. in bulk to save money. I try not to eat too many baked goods because it's just not good for you, but I occasionally treat myself with a loaf of homemade bread or a batch of cookies or cupcakes. Since I make them myself, I get a lot more mileage out of the money I spend on special flours. And I make them last by baking sparingly. It's something to get used to, but it's healthier and cheaper that way. There are many, many foods that are naturally gluten-free.

All in all...I really hope you are able to get things sorted out and get yourself healthy. Almost all of us on here know what it's like to be sick for a long time and be longing for an answer...then you finally find an inkling and it can be very frustrating when you cannot get support from your family. We're here for you, though, whatever that's worth.

[rosetapper23]

I can't help you with regard to the unsupportive husband, but I can help you with eating gluten free. Many people feel that they need to have gluten-free substitutes for all of their favorite foods--you know, the foods that make them sick. It's much easier to eat natural whole foods than to buy gluten-free processed foods, frozen foods, and special breads, cookies, etc. You can still eat eggs, dairy (unless it's an issue, too), meat, nuts, vegetables, beans, and fruits. The gluten-free pasta isn't too expensive, in my opinion, and Tinkiyada is the best--chances are good that your whole family won't notice the difference. Bread can be expensive, but if everyone else is eating a sandwich, you can always eat something else. Be careful about eating soy--many of us can't tolerate it. Also, soy sauce has gluten in it, but you can always use wheat-free Tamari sauce. Your husband, even if not supportive, doesn't have to play any role in your diet whatsoever. If you cook the food, you can decide that it will be natural whole foods...and if the family wants to use condiments that contain gluten, that's fine. Your husband shouldn't be impacted very much by your change in diet...and, hopefully, when he sees how much better you feel, he will begin to see the light. Also, if you want to start feeling well ASAP, try eliminating all grains, including rice, and begin adding them back into your diet one by one. Once you know that you can tolerate them, you'll have more ingredients to work with. Good luck!

[Roda]

I'm sorry you are not getting the support you need right now at home. If you haven't gone gluten free then if you want you could request the blood work: IgA/IgG tissue transglutaminase(tTG), IgA/IgG deamidated gliadin peptide(DGP), and total IgA. You could also do a scope/biopsy. If you want testing, and after you exhaust all the testing you want, do a good three montht trial of the gluten free diet. Testing doesn't always give us all the answers and can have about a 30% false negative rate. Also I think there is a increased risk for celiac disease in people with down syndrome. Here are a few links for you to review. Feel free to ask questions. There are a lot of good people on here to help!

http://www.celiac.co...Celiac-Disease/

http://www.ds-health.com/celiac.htm

[areyoufreakingceliac?]

Oh no! It is so frustrating when people just don't get it! Everything said so far is totally right, eating gluten-free doesn't have to break the bank. Hopefully, it will make you feel so much better that your husband will have no choice but to agree. I agree than an actual do diagnosis from the doc would help immensely too, some people are just really black and white about the whole thing and need the diagnosis. Also, try to think that it's really hard for him to see you so uncomfortable. I remember my husband being so frustrated because he wanted to fix it for me, and for a husband, it's hard when they can't. Be patient, it sounds like he loves you a lot so he will come around expecially if you start feeling WAY better! Best of Luck - A Freaking Celiac

[ArtistinChina]

HeyTeacher,

I am a bit in the same situation than you and I wonder if there is anyone here who could share about how supportive their husband/wife are? I am questionning myself right now on what I should expect from my spouse, like what would be a'normal' level of attention from him regarding this matter? Any concrete examples of support?

Personnally, I would need some help with the cooking. I feel right now it is overwhelming to cook new recipies all the time and look for gluten free ingredients at the store, or supply with alternative ingredients. I am reallly doing my best to making it a project, but sometimes lack motivation. I would like him to take over sometimes and of course to feel like I am not inventing all of this to grab attention.

Any role model here to share?

[AVR1962]

It is hard when we don't have the support from the ones we love. However, we also have to do what is best for ourselves at the same time. I also have a teen at home and wondered how I was going to change things so that the family wasn't inconvenienced but it never became an issue. They eat my gluten-free pasta and cannot tell the difference. If I make a gluten-free cake they like it. I know my husband does not totally understand and keeps forgetting that I cannot have gluten which I find kind of amazing since I have been gluten-free for 5 months. Focus on yourself. Focus on what your body needs to get well. I know you said you were trying this and by the symptoms listed I would definately try my best to follow a strict gluten-free diet (read labels). It might not hurt to stop dairy for a couple months too. That might sound like alot but if you are having stomach issues dairy very easily could be tearing you up. When my gastro suggested I go off dairy I was already on a gluten-free diet and I was thinking that I would have nothing left to eat. It is a mazing how creative we become. As it turned out for me not only do I have celiac but I am dairy intolerant, high fructose intolerant and salicylate sensative.

I was pretty darn sick before I went off glutens and dairy and hubby knew that. My brain was a continual "fry" zone, my stomach was a wreck, I had lost part of my taste, I was dizzy, my vision was messed up and I shared all this with him. I was always the energertic type, always had everything done and always organized and that all kind of went in the toilet. I was not the one to be making regualr doc visits and here I was going on a regualr basic......so much so the receptionist asked me if I worked somewhere in the hospital, lol!

Big difference was when I started feeling better and he could see it. Not long afterward he had problems with gout, doc wanted to up his meds. Get this, he told her that he had seen what I was doing to change my diet and saw the improvements in my health and wanted to try and control his gout thru diet as well. He was set up witha nutritionist and he has taken it seriously.

Eventhough we feel weak and want to crawl in bed and want someone there to lean on, sometimes we have to be the strong one and set the example. You can do this!!!

[Takala]

The only advice I would give you is to seek a counselor on how to deal with the "unsupportive" husband. If you think you "need" his support to go gluten free, you will never go gluten free. Like I don't "need" my spouse's "support" to use my inhaler during an asthma attack - my need to use a medical treatment to save my life is independent of his feelings about it. If he ever tried to belittle that need, he would be shown the door. Quickly.

I mean, really, the absurdity of it - if he wanted the economy model wife with no special dietary needs because of an autoimmune problem, and able to subsist on really cheap food, he should have selected that one during the courting phase.... what was that phrase again, in sickness and in health? This is the only autoimmune disease which can mostly be relieved of symptoms just by changing one's diet. Most of the others are real roller coasters of (oftentimes expensive $$$) treatments with bad side effects or very deteriorating conditions. This is the hand I was dealt. Other people have other problems.

When both spouses are healthy, the household tends to run better. The one thing you really don't want to happen is to be approaching old age and be in poor health, if you have the power to change it, it's bad enough to be approaching old age and be in mediocre or even good health. I can't imagine doing this with a spouse who would blow off my health needs, especially if it were approaching any sort of crisis situation. And I was bad - we thought I was going to not be able to do steps, and deliberately went to a one story ranch house a dozen years ago, before I did the diet change, because I was getting such bad neurological symptoms and having arthritic flares.

I also live in a rural area, so it's a bit of a drive to find the specialty ingredients I use for baking. But this is a good state and area compared to some others (we make jokes about the area about 90 miles north of here, which is this wasteland of store/restaurant options - yeesh. Take a cooler or starve. ) I tend to stock up when I find something on sale, and we have an extra, small refrigerator in the garage for storing things that don't fit into the freezer. I tend to freeze anything like nuts that might go buggy, because we live in a warmer climate, and this keeps things from going rancid more quickly or getting infested. It's a lot easier to go to the fridge for a bag of something gluten free, than to drive 30 - 70 miles roundtrip to get it or having to mail order it. I end up doing baking more for him than for me, since he may want a sandwich more often than I do, as I don't actually eat as much "bread" as a regular person, and hardly ever do cereal, and when I do bake, it's with high protein things like seed, bean, and nut meals because I am relatively carbohydrate intolerant. We have discovered that while I am able to function on a high protein/fat diet, he will crash and splat metabolically if he mimics me completely, and therefore the "safe snacks" lunchbox we tend to take with us will have some carbs for him, and I will make sure he EATS some before we do an outdoor activity. My spouse decided to go gluten free at home after seeing what happens when I get cross contaminated accidentally, but still eats gluten out if he wants to. We actually did not have that much of a transition other than changing some cookware, now cereal brands and a few other food item brands are different because they are gluten-free, we subbed rice pastas for wheat pastas, we keep ricecakes and corn tortillas as staples, and we don't eat out as much and baked things tend to be homemade.... and I store more dry goods than the normal person and play around with recipes a bit more.

So I can do this or be an invalid..... wasn't really much of a question which option was better.

[jswog]

I am a bit in the same situation than you and I wonder if there is anyone here who could share about how supportive their husband/wife are? I am questionning myself right now on what I should expect from my spouse, like what would be a'normal' level of attention from him regarding this matter? Any concrete examples of support?

I guess I'm very fortunate as my husband is beyond supportive. His attitude is 'we'll do whatever it takes to get you feeling better. All I want is for you to be better.' I'm in the process of doing an elimination diet and we're working through the kitchen (he's working on eating all of the gluten-containing foods in the pantry and as he finishes those, we're switching it all over to gluten-free foods). We will eventually have a totally gluten-free house, though he may eat other things when he's away from home. He's one of my biggest advocates when we are out somewhere to make sure I stay as far away from gluten as possible.

[lovegrov]

The sores in your mouth can definitely be related. I had them all the time and they disappeared after I went gluten-free.

As someone else said, it doesn't have to be expensive as long as you don't try to replace bread, cakes, muffins, etc. Just make regular food that's naturally gluten-free.

richard

[GlutenFreeManna]

I don't know where to put this so I guess this is as good as any??? I don't have an official diagnosis, so I am in limbo so to speak.

However, my husband is not supportive of me trying to go gluten free. He isn't supportive of any health issue that I have. The diarrhea, nausea, not being able to eat without being VERY close to a bathroom, the migraines. I believe all of these things (and more) could be caused by either a gluten sensitivity, or celiac. But I need his support to try and go gluten-free. We have 4 children ages 18, down to 12. One being a special needs child that has Down Syndrome. We are very busy, like most families, and I need him to help me so that I can start to hopefully feel better. I also think he feels that Gluten-Free food will be quite expensive, and it will be--I think--my son was on a Gluten-Free diet for about a year. The food was very pricey, and hard to find in our area (very rural)

I have had a colonoscopy a few years ago, and doc diagnosed IBS. SO husband wants that to be the end of the discussion and I just live this way forever. Well, I've tried for 3 years. I'm tired, feel awful, and need to get something figured out.

I have shown him things on-line to try and show him that my symptoms are very simliar to people that have celiac disease. He still thinks it's all in my head. Even though I have to run to the bathroom after eating some (most) meals. I can't eat if we are in the car or at one of my kids ballgames for fear that I won't be able to get to a bathroom. Crazy way to live if you ask me.....

I welcome any suggestions that you have for me. He isn't a terrible person. He has strong opinions. He tends to think if we don't deal with it I will just get better as fast as I got "sick" He gets upset when I go to a Dr. mostly due to the $. He tends to think I am fine since there is no fever or visible signs for him to see. I have no rash. It's all intestinal--for lack of a better word--although I do get sores in my mouth, like a canker sore. Unrelated???

Thanks so much for any advice you can give me.

Before you try to go gluten-free, get to the dr and get blood tests for celiac. Do not tell your husband about the tests if they are negative. But if they are positvie you will need to have your doctor talk to your husband and explain this is not in your head. If the test are negative you will need to convince you husband you are truely very sick. If this means you need to "forget" to flush the toilet a few times, so be it. Or if this means you need to be curled up in a fetal position unable to do the dishes or take care of the kids sometimes, so be it. He needs to SEE the signs that something is really wrong and that may mean you stop pushing through your suffering in order to seem "normal".

[heyteacher]

Before you try to go gluten-free, get to the dr and get blood tests for celiac. Do not tell your husband about the tests if they are negative. But if they are positvie you will need to have your doctor talk to your husband and explain this is not in your head. If the test are negative you will need to convince you husband you are truely very sick. If this means you need to "forget" to flush the toilet a few times, so be it. Or if this means you need to be curled up in a fetal position unable to do the dishes or take care of the kids sometimes, so be it. He needs to SEE the signs that something is really wrong and that may mean you stop pushing through your suffering in order to seem "normal".

Thanks everyone for your responses. I appreciate it so very much I know I have to do something about this mess, I hate feeling crappy. I know it's up to me to get things going with my doctor. I have to get over my "fear" and just make the call and get an appointment.

GlutenFreeManna--I think you are on to something. I keep pluggin away even when I feel absolutely awful. It may take me actually retreating to bed (more often) or being forgetful with the toilet in order for him to actually see what is happening with me. I work incredibly hard to go to work, attend my kids sporting activities, basically keep the house going even on my bad days. Maybe I need to let some things go and he will get a better picture of how I feel. Or maybe he will get mad that things aren't done around the house. I don't know how he will react, but it's a place to start. I have NEVER, EVER been one to "rock the boat" but my health has got to improve.

Thanks again everyone, it is beyond wonderful to have some support. Something that I have not had since these symptoms started 3 years ago.

[cyberprof]

Thanks everyone for your responses. I appreciate it so very much I know I have to do something about this mess, I hate feeling crappy. I know it's up to me to get things going with my doctor. I have to get over my "fear" and just make the call and get an appointment.

GlutenFreeManna--I think you are on to something. I keep pluggin away even when I feel absolutely awful. It may take me actually retreating to bed (more often) or being forgetful with the toilet in order for him to actually see what is happening with me. I work incredibly hard to go to work, attend my kids sporting activities, basically keep the house going even on my bad days. Maybe I need to let some things go and he will get a better picture of how I feel. Or maybe he will get mad that things aren't done around the house. I don't know how he will react, but it's a place to start. I have NEVER, EVER been one to "rock the boat" but my health has got to improve.

Thanks again everyone, it is beyond wonderful to have some support. Something that I have not had since these symptoms started 3 years ago.

I'm in the "mom martyr" club too. We work through flu, cold, headache and are just generally tough. Maybe time to give that a rest when you are legitimately feeling bad. Good luck!

My other suggestion is to go to this gluten-free crockpot website. Free recipes. Great for families and could end up reducing your food budget even. http://crockpot365.blogspot.com/ The author's daughter has celiac. It doesn't use many specialty items and your whole family would have a good, gluten-free meal. Her instructions talk about what products are ok or need to be replaced with a gluten-free version.

Regular ingredients that are naturally gluten-free are not too expensive. Potatoes, rice, veggies, meat, chicken, beans. Use the crockpot to make gluten-free meals while you're at work.

[sariesue]

Before you try to go gluten-free, get to the dr and get blood tests for celiac. Do not tell your husband about the tests if they are negative. But if they are positvie you will need to have your doctor talk to your husband and explain this is not in your head. If the test are negative you will need to convince you husband you are truely very sick. If this means you need to "forget" to flush the toilet a few times, so be it. Or if this means you need to be curled up in a fetal position unable to do the dishes or take care of the kids sometimes, so be it. He needs to SEE the signs that something is really wrong and that may mean you stop pushing through your suffering in order to seem "normal".

That tatic is DISGUSTING, and will probably backfire. And can by very dangerous to try if you have animals in the house and or small children. All of the 3 dogs I have had and two out of three cats drank/played in the toilet water. Leaving poop in it could make them very very sick. And I for one get very annoyed and upset when people forget to flush the toilet, especially if the person was an adult who should know better. If he feels the same way I do, you are putting more strain on your relationship and he might be even less willing to accept there is a problem since doing so is very passive agressive.
There are better ways to it is across that you are sick. Like, asking if he could buy more imodium, or kaopectate often. Or just actually talking to him about it and how his lack of support is making you feel. Then make an appt with the dr and talk to the dr about your symptoms. Whether or not he likes it doesn't really matter. As you are an adult and don't need his permission to go to the dr for a consultation.

[lynnelise]

In your situation I would start making meals that are naturally gluten free but are also completely normal. Chili, tacos, shepherd's pie, stir-fry (with gluten free soy sauce, there are cheap brands), roasted chicken w/ potatoes and veggies, ect... Don't even tell your husband for a week or so. Then announce that you've been on a gluten-free diet all week and he didn't even notice nor did it significantly raise your food bills. He will be left with little to argue about!