I Can't Do This

[Strawberry-Jam]

Fibromyalgia can be a SYMPTOM of celiac. As well as a lot of other things.

He's being really unreasonable. Maybe he is afraid you will try to make him gluten-free, too. But seriously, does he WANT you to be in pain?

Sounds like you really need to stand up for yourself. If you are a confirmed celiac and you do not go gluten-free, you will in all likelihood end up with cancer.

If he really loves you, he'll listen.

[tarnalberry]

I mean no offense, but what you describe is emotional abuse and controlling behavior.

He is, in those situations, being an ass.

He does not have motor control of your hands or your mouth. He does not choose for you. You do.

Yes, you can choose to do what he says, but realize that it is still YOUR choice to do this. Even if it's to "make life easier" (though I don't know how it's easier to be sick), it is still your choice. For good and bad. But yours.

[adab8ca]

OK my one digestive symptom was nausea...and then, if you reread my post, it all went down hill from there.

i licked a spoon on wednesday that I used to spread almond butter on an english muffin for my husband and I have been a disaster ever since. I was lying fetal on the floor wednesday night, in so much nerve pain and my guts are still a mess....my poor husband was just beside himself. Maybe print out these stories for your DH, you will VERY likely get sicker some day...this is not a fad, it is a bona fide disease with debillitating effects...I became suicidal last summer from the pain and depression.

i am so sorry that you are not getting the support you need but you need to stand up for your self. He needs to understand this is NOT A DIET. regardless of what you eat on your vegetarian diet, it is irrelevent if it is healthy or not. Of course healthy is better but this is totally not the issue here...

Again, you are lucky that they found this before the damage is so bad it is unreparable. I cannto stress that enough. If I could go back in time, I would LOVE to be in your shoes.

[leivasfamily]

I hear ya....I felt the same way with my daughter who already has so many limitations being Downs Syndrome, Hypothyroid, Type 1 Diabetes diagnosed in 2009, and now Celiac.

I tell my husband when he thinks its ok to eat things she loves in front of her that it's like the drug addict or alcholic that you drink or do drugs in front of them when they are trying to recover. Same thing.....People have to be conscioentious of that.

Now that we eat brown rice pasta, I prefer that over regular pasta. It's great and light. You can just buy the one from Trader Joe's. Many Italian restaurants now have same, you just need to call ahead and talk to manager beforehand and tell him you are coming in, so when you ask, it's not a big deal.

Corn tortillas are the best filler foods you can include in your diet, as long as you don't have issues with corn.

UDI's bread is good and you can make your grilled cheese sandwiches at home....most likely they are not offered in restaurants.

Hang in there.....just imagine it can be worse. There is always others out there that have more issues and can't do anything about them. You have control of your life and you can make it work!! Have faith :-)

[Monael]

I am new to this too. I haven't been diagnosed like you have, I simply put 2 and 2 together when I went on a low carb, no starch diet for a couple of weeks and noticed that my bowel symptoms cleared up. When I went back to my regular diet back came the bowel issues. So I decided that for me, I would rather just avoid the gluten so I would feel better. It was only through researching the disease that it became apparent just how damaging gluten could be for me (and explained a whole lot of other symptoms I have been having as well).

It also was clear that it would not be easy. But I am comforting myself with the idea that I will be able to have bread and other things I love like cake and cookies. It will just take more effort. So I probably won't have them as often. But that is probably for the best anyway

As for your husband, what the heck is he going to do, force feed you gluten containing food?? What if you just don't eat it and don't even mention it? I don't understand your relationship, as I would be very turned off if someone reacted that way to my disease. But if you are happy with him then who am I to judge? There are all kinds of things to eat that don't have gluten in them. The only things you have to worry about are the pre-made foods. And there are still premade foods with no gluten in them. Like potato chips

It's up to you though. I know I used to smoke cigarettes, too. It wasn't until I was ready to quit that I was able to do it. And I have been smoke-free for over 11 years. It took me a while to do it though. Good luck! I hope your husband changes his mind so you can be healthy.

[Junot]

Wow, i dont know if this is purely a control issue with your husband but this whole story is messed up, getting mad at someone because they wanna feel better, boy am I confused.

Exercising WILL NOT help if you continue to take in gluten, your body needs MORE food MORE protein after you exercise and cant grow and cant get healthier if you continue poisining yourself.

You gotta put your foot down and put your health and your life AHEAD OF EVERYONES at this point especially your husbands.

[Marie1976]

What if you told your husband you just want to TRY it for a little while? He is not being very supportive. Just remember it is YOUR life and YOUR body, and YOUR decision. He doesn't want to be inconvenienced by your diet restrictions, but it is YOU that will be sick if you eat gluten, so he's not really being fair to you.

I was not happy about the gluten-free thing either; I'm a vegan. You might want to check out vegiac.com. And also: Keep coming back to this board, it has helped me SO much. There are a lot of people on here who are supportive and helpful and they care, because they have been suffering for a long time and don't want to see someone else suffering.

Hang in there.

[domesticactivist]

You say you don't have symptoms, but you listed many symptoms that are all directly related to gluten consumption for many people I know. While it is all or nothing - even a little bit does damage - I think if you can cut back gradually while getting used to the idea that may be helpful. What if you start with what you cook at home? I agree with the people who say to not think of this as a decision that you have to make right now, in the midst of dealing with the emotional side of your diagnosis.

I have a friend who is taking your approach. Her daughter has problems, her father had celiac (and died from a related cancer), and has another relative who had to have her colon removed, and she KNOWS she does better off gluten because she felt great on Atkins. However, she insists on only treating the symptoms with medications and surgeries. Her daughter was not even allowed to try being gluten-free because her blood test came back negative for celiac - instead she has to take multiple steroids for her skin condition (even though a close friend with the same problem healed the same condition by going gluten-free). Making bread with gluten in it is more important to her.

In cases like this, I think some of the emotions that could contribute to not wanting to make a change might include:

- not wanting to feel guilty/angry about the damage done in the past

- not wanting to feel angry at family members who left things untreated and are no longer around to discuss it

- not wanting to give up comfort foods at a time that is hard enough already

- being afraid that any change will mean that everything needs to be reevaluated (could destabilize a marriage, for example)

- not wanting to give up the idea that we are healthy or change our idea of what's wholesome

As a mother with a celiac child, and someone with health issues I ignored until all this started, I've had to work through these kinds of feelings. I find that kind of thing can be easier to do for another person than for yourself. Whether these issues resonate for you or not, it might be worthwhile to give therapy a try. A good therapist will not tell you what to do - that person will instead help you explore your feelings and come up with a plan of action that will work for you.

I'm curious about your husband's response to the news of your diagnosis. You say he dislikes you making special requests at restaurants for your vegetarian diet - but it also sounds like he thinks that is a choice you are making that he doesn't agree with. I wonder if he would have a different perspective about special requests related to your diagnosed medical condition? Have you talked with him about this?

As for being vegetarian and gluten-free - that does make it a little bit more difficult, but not impossible. I believe there are several vegetarians on this board who you could ask for advice.

[domesticactivist]

Oh, wow, I just saw your most recent post. I had an inkling from your first post that this may be the way he acts, but I didn't want to make assumptions.

From what you say here, though, I have to tell you - his behavior is totally unacceptable, and something no one should be subjected to.

It sounds like you have had to choose between trying to keep him calm and happy and doing what is right for you in many arenas for a long time. I can imagine that choosing to stand up for yourself on this one could be very threatening to your relationship.

From his side - you putting your health above his preferences could feel threatening because:

- he wouldn't be in total control

- you might start to question that he should be in control

- you might start feeling healthy and have the energy to confront him in other areas

From your side it may feel threatening because:

- he may become more angry/violent/verbally abusive/controlling

- feeling healthy might give you the space and energy to deal more with your relationship

- you might start to consider leaving the relationship (which brings up all sorts of other stuff, of course)

The way he is acting is abusive. Even if there is no overt physical abuse going on, keeping you from eating the diet that will solve your health problems, and trying to make you eat foods that harm you is physical abuse.

I have had very close friends who lived for many years in abusive relationships before finally getting out, and so I know that it's really not as simple as just saying you deserve better and should leave. I also know that people who are abusive typically escalate their behavior over time, in a cyclical pattern.

I think the best thing you can do for your health right now is to really examine the positive things you are getting out of your relationship with your husband. There have got to be some or you wouldn't have stuck with it so long. Some ideas that may get you started (though your reasons might be totally different) are:

- feeling needed

- being seen as someone who is making a marriage work

- financial security

Then look at what you are giving up in order to experience those benefits. Make that list, too. Once you have really looked at the trade-offs you are making.

The next step after that is to think about what you want out of your life, and see how that fits with the life you are living now. You have a right to make your own decisions about what you want your life to be like. Once you accept that, you will be able to make the changes you need to make (in the context of your relationship, or outside of it), that will get you there.

[Salax]

Just my 2 cents, but I still can't understand why other people in our lives are so concerned with what we eat or don't eat. Is is really that big of a deal? Our body, our choice. Unless someone is eating glass or things that aren't food, it's really no ones business but our own. That just frustrates me to no end.

I am frustrated with your husband's treatment of you, so *hugs* to you. But you only YOU can do what needs to be done in this situation.

Be strong and take charge of your health. It's critical for you at this moment to realize that you have to do what's best for you an only you. If you allow the other, your not taking care of you. And that would be horrible for you and your loved ones.

I wish you the best and hope it gets better from here.

[GlutenFreeJess]

I was diagnosed in 2008, and I still struggle to remain 100% gluten free. I am also recovering from an eating disorder, so that definitely plays into my struggle to lay off the gluten. My hope is that one day I will indeed be able to be 100% gluten free because I *feel* better when I don't eat gluten, and I know that there are long term health consequences if someone who is Celiac continues to ingest gluten. I just wanted to post to offer you support. It's not an easy diagnosis to get, but something I have learned slowly but surely is that it's not an end-of-the-world diagnosis either. Hang in there (( Hugs ))

[Marz]

OMG - Pancakes! I make the best pancakes in the world. Not trying to boast, but I found the best recipe and use the best ingredients and anyone who has ever tried my pancakes agrees they are the best. Restaurant pancakes just cannot compare. I usually make chocolate chip pancakes - which are our favorite. If I go gluten-free, my pancakes are one of the things I will miss the most - and my husband is still going to want them. Making them and not eating any would be very hard.

Well they won't taste exactly the same with gluten-free flours, but believe me the toppings taste the same, and it's still pretty awesome! Actually, before I could only eat two or three pancakes before feeling sick - thought I just couldn't handle all that sugar. But now I can tuck into a lot, and no misery afterwards!

Well, you don't have the stomach symptoms, but yeah... must be hard without excruciating stomach pain to back up the diagnosis. But I'm 100% positive your fibro, and a lot of other issues will mysteriously get better/disappear while gluten free. I would try for a month - just set yourself a goal, and get a good gluten-free cookbook to have fun with, and get rid of the flour in your pantry! Stock up on fruit and nuts for snacks, and yoghurt, cheese, rice cakes and you won't even miss bread

Besides, you can get pretty decent bread, just need to look around at the shops/health stores to see what the selection in your area is.

Good luck, hope you decide to give the diet a try!

[cap6]

It is hard to sit and watch others eat foods you love when you eat out. Eat first. If you are full it is much easier. Or take a container of gluten-free food with you. I briefly explain my gluten-free issue to the server & ask for an extra plate, scoop my food onto it and enjoy the evening. I never go out without taking something otherwise I feel like I am missing out.

It is very difficult at first. No one here will tell you different. I didn't believe it when i was told it gets easier in time but it does. One day I just realized that I was no longer stressing over food and that it had become a part of me.

When you focus on what you can't have (and we all have been there) instead of what you can have it's a no win situation. If they have pizza so do I, my own & I get the entire thing to myself. If they eat pasta so do I. I think it's easier at home if the entire household is gluten-free but that is also a personal opinion.

I look at it this way - I have always wanted to be special & different.... now I am!

[krystynycole]

There are tons of places to eat out Italian! Do a search on this site for gluten free restaurants and you'd be surprised. One of my favorite places to eat out gluten-free is Italian! I eat gluten free pasta in my house and enjoy it all the time. Even my husband enjoys it.

I feel your pain of bread. I used to fill up on bread and barely touch my entr

[Derezzed]

I just found out recently how badly I react to gluten when I went on a 3 day gluten challenge. It really surprised me because a year a go I was really sick and I didn't think it was related to gluten but apparently it was. A lot of symptoms crept up on me and I didn't even notice they were there until I went back on gluten for a few days. I know it's hard being gluten free because I'm a serious junk food addict and there were times I'd crave and just eat gluten. So not happening now that I know how sick I get (If you want to know my symptoms just ask).

When you're eating out and your not sure if they have gluten free bring your own snack. Make it something really good so you enjoy it and if anyone asks? Just tell them you are a celiac and can't eat gluten because you will get really sick and damage your body.

Try to eat at resturants that have gluten free menus or can adapt they're current menu. If your husband is giving you trouble explain to him how bad gluten is for you. Or you can get your doctor to talk to him as well.

[T.H.]

So sorry it's been so difficult, although I'd agree with many here - you have tons of symptoms, just not gut ones (although the nausea seems like gut to me, honestly). I don't have gut ones myself, except after going gluten free, I realized that if I get glutened multiple times in a row I'll get constipation. But that's it. My stomach NEVER hurts from gluten.

However, symptoms I've had that have gone away since going gluten free:

- depression

- carpal tunnel disappeared within a few months, when I've had it since I was in my 20's (almost 40 now).

- radiating nerve pain down my arms and legs and in my neck - this was attributed to two partially herniated discs...which are also a result of Celiac Disease. Every disc in my father's spine eventually bit the dust because of his undiagnosed celiac disease. He also developed spinal arthritis

- plantar fasciitis. I was told I would have to wear orthotics for the rest of my life, and now I walk around barefoot all day and don't have so much as a twinge of pain. I didn't develop a bone spur with this, but I was told it wasn't uncommon to have one.

- weight. When I went gluten free, my weight stabilized so that I was much thinner than before going gluten free.

- vertigo and dizziness (the only time I DO get nauseated that's a gluten reaction, and it's just from the vertigo)

I have a friend with fibromyalgia, and while going gluten free didn't cure that, the symptoms were significantly improved. She had to walk with a cane before she was 16 years old because of her fibro, and now that she avoids gluten, she can go on hikes over flat ground for a few miles. . Whenever she gets hit again with gluten, she's back to the cane for a few weeks, though.

Same issue with Hashimoto's. Two gals in my local celiac group also have Hashimoto's, and things have greatly improved since going gluten free (although I didn't discuss details, just a general discussion, really)

I can appreciate that the diet seems almost pointless at this point, especially when you feel like there's little to be gained and a lot of added stress to your life, considering your husband's reaction. But there are a lot of things that gluten affects that have nothing to do with the gut, other than the fact that it keeps nutrients from getting to the rest of the body so it can function better. And while not eating gluten may definitely make your life more peaceful with your husband? It's going to be a much shorter life.

My family has 4 diagnosed celiacs right now, and many more are getting tested, because all of us who have the same symptoms died much younger than the ones who didn't. It's been studied in the general population as well - researchers had frozen blood from the 50's, tested it, and went back to find the people who tested positive. Much higher mortality rate among those who had tested positive (but were never diagnosed, so stayed on gluten).

I am truly sorry that your husband is unsupportive. And very sorry that he shows you such a lack of respect for your opinions and your health that he won't even listen.

I guess I'd ask just one thing: does your husband tend to act this way when he's frightened for you, or when he can't understand something, or just when you do something that he doesn't think is the 'right way' to do things?

Perhaps knowing why he acts this way might help with finding an approach to make sure you can get well, and he can, well, suck it up, considering it's not his body or his health.

[oceangirl]

Clearly this must be a dizzyingly difficult decision for anyone who is not ridiculously sensitive to gluten and who does not react in about 26 different and equally horrid ways to gluten ingestion.

I am AFRAID of gluten because of how it hurts; but that is my experience. After 35 years of various diagnoses, none of which satisfactorily helped me, it took getting deathly ill before the 5th in a line of Gastros suggested a Celiac panel and, voila! I have taken gluten happily out of my diet in return for no pain, embarrassment and the multitude of symptoms that crippled me for the 2 years before final diagnosis.

Tarnalberry is right on; if you'd rather stay where you were, you are lucky in my opinion, that that choice is even a remote option. For most of us, we were so ill that the inconvenience (and healthiness) of a gluten free diet seems small change when our quality of life had been so diminished.

Like I say to the students with emotional disabilities I work with as a teacher every day: is it HARD for you to build the muscle to cope effectively with your ADHD, anxiety, depression or rage? Yes. Is it not possible? Absolutely not.

good luck with whatever you choose.

lisa

[txplowgirl]

I'd like to know how the original poster is doing and if her husband ever understood her needs.

[rgarton]

I only got diagnosed a couple of months ago and feel that frustration but ignoring it will make you worse over time. I became severly anemic, almost needing a blood transfusion. I am also a vegetarian and am coping fine now. I have iron tablets to boost my iron. And going out isn't always a problem, tell your husband to suck it up and be supportive! He was the one who sent you to the doctors in the first place! And I am sure he wont want you in a worse condition, hair falling out, losing weight, severe stomach cramps, nausea, sleeping all the time just because you didnt want to be a hassle. It will be hard at first but there is so many new products you can eat now that are delicious and taste even better than the normal glutened stuff, pasta for example! Always call the place you want to eat out before you go and check that the chef knows you are coming and you need it not to even be cross contaminated etc, most chefs are really understanding and sometimes even like the challenge

[cahill]

I'd like to know how the original poster is doing and if her husband ever understood her needs.

Yes ,to the OP , how are you doing??

[Dee777]

Yes ,to the OP , how are you doing??

I, too, am concerned about the OP and how she is doing. My thoughts are with her every day.

Dee