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Does The Spouse Really Understand
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Well, I have been TRYING to eat gluten-free since July. My daughter had a positive result from Enterolab and she and I both had positive dietary responses. Another daughter got on the bandwagon after seeing our success and she is doing great (eliminating casein too) Now, my son (who lives on his own) is trying this as his fiance is positive he has this as well ---I do too! Now, for hubby......

Here is my problem: we are now empty nesters (at least during college months) and he likes pizza, pasta, chinese food, ice cream cones, etc. He wants to support me, BUT he likes to try new places like a restaurant called "noodles"...does that even sound like a place a gluten-free person should enter????? It's hard walking into Panera, Einstein, etc. I know I am preaching to the choir here. You all know the story. How can I get him and my other extended family to see that this is real for me and not just another trendy fad thing I am doing for a short while before I slip up again?

I have been glutened a few times and he is amazed at the speed at which this affects me. I can tell with 20 -30 min if I have ingested something wrong. You can too, right? My extended family thinks I'm crazy (mine and in-laws) and anything in moderation is fine and so "having a little" is ok. Like my very well intentioned sister who dumped all the spaghetti sauce onto the wheat pasta before "we" got our chance to put a little on our rice pasta..... See what I mean? So what do you do?

My husband is a great guy, but I just don't think he really gets it. Anyone else in this situation? I'll look for your advice.

Thanks~ :(

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It's frustrating!!!!

There is another thread going on right now about this too!!!!

As for resturants.....call ahead and see if they can accomodate you...maybe you and your hubby could compramise!!! NOTE: As far as I know panera has a gluten-free menu!!!!! Look online! Noodles and Co has one too! And many of these places are aware of CC....just be proactive and call ahead!

Good Luck!

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My extended family thinks I'm crazy (mine and in-laws) and anything in moderation is fine and so "having a little" is ok.

Sigh....I feel your pain. It's the same with my in-laws. (Luckily, my mom and brother understand and are supportive. In fact, my mom read some of my books and is now trying a gluten-free diet, as she has several health issues which suggest that she also has a gluten intolerance.) I ended up having a loud confrontation with my in-laws. It's not the way I would have chosen to handle things, but they kept arguing with me, questioning whether my kids and I really needed to be gluten-free. I told them that it was immaterial what they thought, as my dh and myself make the decisions for our kids, and that they needed to respect and defer to our those decisions. It was very unpleasant for a while....but my m-i-l seems to be coming around now. She actually asked me the other day about foods that might be "safe" to serve if she had us over for dinner. I think that's progress. My decision about how to handle this with extended family members has been to assert, in a matter-of-fact way, what our dietary needs are, and if I'm not 100% sure that I'm being understood, I just bring my own gluten-free food to avoid problems. I think I've stepped on toes a few times, but oh well....it's better than my kids or me getting sick! Also, I've been very verbal about celiac disease, gluten intolerance, the gluten-free diet....I'm assuming that if I keep talking about it, I'll eventually raise their awareness.

As for my dh....he mostly supports the fact that the kids and I need to eat this way, but he's not 100% behind it. He keeps asking me if "a little" would really be that much of a problem, but then refuses to read the literature I provide to answer that question. He also has no idea how to implement the diet - I came home the other day, mid-afternoon, and the kids hadn't had lunch yet, because dh "didn't know what they could eat." Luckily, the kids do know what they can eat, for the most part, and so they snacked and didn't "starve." I've pointed out to dh numerous times that everything in the kitchen, save for his English muffins and beer, is gluten-free. (And his English muffins are kept in a bread box - the kids and I call it "the gluten box.") He has also been frustrated that I'm so hesitant to eat out since we went gluten-free. I'm trying to get the "lay of the land", concerning local restaurants, but it's slow going. We had one disastrous experience in a local place and it scared me. We've only been doing this diet for about 3 months....so I'm hoping that I'll get more relaxed as we go.

Sorry....not much advice....just wanted you to know that others are going through the same thing!

Rho

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It's frustrating!!!!

There is another thread going on right now about this too!!!!

As for resturants.....call ahead and see if they can accomodate you...maybe you and your hubby could compramise!!! NOTE: As far as I know panera has a gluten-free menu!!!!! Look online! Noodles and Co has one too! And many of these places are aware of CC....just be proactive and call ahead!

Good Luck!

I just want to add Panara Bread has a gluten free menu or they will bring the ingredience list to you to look over. Gluten free does not mean that you will be house bound for meals. Although, there is a risk at eating out, it has it's benefits too.

oops...Jess covered this.

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Thanks ladies. I know my family means well and I didn't want to gripe, but I guess I needed to vent. Thanks so much for all your advice.

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What I've found is that the need to eat gluten free is not a reality for a lot of family members. It's not something they can SEE. I finally realized I was expecting too much of them and their understanding....ultimately, it was all up to ME to establish the eating rules for myself rather than expect everyone else to be continually solicitous of my situation. So now if he suggests eating somewhere that I know has nothing for me that is gluten free, I'll just say "Nope, I don't want to eat there." I'll suggest somewhere else, and he's always agreeable.

I also think I was subconsciously expecting him (and others) to more or less eat gluten free as well. But now I realize I shouldn't ask that, so when they eat gluten things I have just learned to ignore it and eat my own things. I don't make it a big deal in my mind or feel bad about it.

I guess what I'm trying to say is that the adjustment had to come from me. Once I was firm about things (as opposed to being wishy-washy for a long while), that cleared the air and things actually became quite easy. I'll admit part of the ability to do this only came after I myself had accepted my own need to be resolutely gluten free no matter who I was with. No exceptions.

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I can't identify with the spouse issue, as my husband is a million times more supportive than I ever guessed he would be (and I thought he would be perfect). He eats gluten-free at home, except for sandwich bread, which he makes on dedicated counter space. He is incredibly careful and does most of the cooking for the two of us - a definite plus! I really can't say more great things about my husband and his supportiveness - and I'm so sorry to hear that yours isn't "with the picture."

However, my parents are another story. They actually cut me off of their insurance policy (claimed it was an "accident" because they forgot to send in college admission statements to prove to the insurance company that I was still in school and therefore qualified to be covered). To this day, my Dad still doesn't understand what it is I can't eat (he's offered me bread so many times I can't count). They're more supportive now that it's been 1-1/2 yrs but they still don't "understand".

My FIL asked my husband the other day when we were making plans to have lunch with them while on vacation if I wasn't "over that already". :blink:

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["Over that already" - That sounds like my mother who thinks my 13 year old daughter with Celiac and 17 year old son with Ulcerative Colitis will "grow out of it". Sigh!!!

We just found out for my daughter so I'm not sure how supportive everyone will be yet. It can be frustrating when others don't get it.

Virgie

quote name='emcmaster' date='Sep 2 2007, 08:28 PM' post='340660']

I can't identify with the spouse issue, as my husband is a million times more supportive than I ever guessed he would be (and I thought he would be perfect). He eats gluten-free at home, except for sandwich bread, which he makes on dedicated counter space. He is incredibly careful and does most of the cooking for the two of us - a definite plus! I really can't say more great things about my husband and his supportiveness - and I'm so sorry to hear that yours isn't "with the picture."

However, my parents are another story. They actually cut me off of their insurance policy (claimed it was an "accident" because they forgot to send in college admission statements to prove to the insurance company that I was still in school and therefore qualified to be covered). To this day, my Dad still doesn't understand what it is I can't eat (he's offered me bread so many times I can't count). They're more supportive now that it's been 1-1/2 yrs but they still don't "understand".

My FIL asked my husband the other day when we were making plans to have lunch with them while on vacation if I wasn't "over that already". :blink:

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. Anyone else in this situation? I'll look for your advice.

Thanks~ :(

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My FIL asked my husband the other day when we were making plans to have lunch with them while on vacation if I wasn't "over that already". :blink:

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My husband and daughter have been very supportive. I could not ask for more.

Had a dinner party and explained gluten-free, but someone still brought a baked good. It had "semilina" which they thought was gluten-free. I dont fault them for their ignorance, but we said if you must bring something, wine or flowers would be lovely.

Anyway, when they arrived and I saw it, I told them it had to go out on the porch as no gluten is allowed to even sit on my counters. It made them feel uncomfy, but I simply do not care. The chips will fall where they may. Real friends will still be by my side and the rest can do eat gluten without me.....LOL

Same for family, if they cannot support me, then I dont eat their food and if they visit me, they can either eat mine or eat gluten elsewhere. I guess I am over "pleasantries" just to make everyone else comfortable. I need to be comfortable and I am important to me. :)

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I just went through this again today. Daughter went to a birthday party at a bowling alley. She said there would be pizza and hotdogs served. Turns out there was no pizza. Just hotdogs and potato chips. Husband took her to the party. I fed her lunch ahead of time and sent her with an allergen free cupcake. Told husband she could eat no pizza. No hotdogs. Just the cupcake.

So he called. "Can she eat potato chips?"

"That depends. Are they cooked in soybean oil?" She has a soy allergy.

"How would I know?"

"Ask to see the bag."

"So, just soybean oil right?" *Click*

As he was hanging up, I was starting to say more. Like her other food allergies. *sigh*

Then he calls back.

"Can she have a hotdog without the bun?"

"No."

"Just a hotdog?"

"I don't know what are in the hotdogs."

"They're just hotdogs!"

I tell him there could be milk or wheat or soy..." And as I am telling him this, I am picturing him pulling a hot dog out of the bun and giving it to her. He has tried to do this before. And seeing as how this is a party and everyone is not ordering their own food, it is unlikely they will have a fresh hotdog sitting there that has not touched a bun.

So they came home and daughter tells me she at nothing but her cupcake. The potato chips (never found out if they were in fact safe to begin with) had been touching the hotdogs. She knows better. She also gave away the candy from the treat bag that she could not eat. Like the giant box of licorice.

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Being the second autoimmune disease in the family, I have to say I was expecting more support on my issue. Nearly every male in my family has diabetes so everyone understand the No Sugar with diabetics. But I think the issue with Celiac disease is that it's just too hard for them. If one of the diabetics accidentally gets a plate with a few sugar grains on it, it's not going to really hurt them - they just adjust their insulin, no big deal.

Every time I visit family, they think that I can do that as well. "Sure honey, just adjust your medication." I'm slowly making progress, though. I think each family member must have their own ennui about the whole thing.

Mom: when she bought me a bag of Nacho Cheese Doritos and I pointed out the wheat flour in that brand ("But the Pepper Jack flavor is ok!")

Grandma: when she went to make me broth for Thanksgiving, and I showed her the label that had wheat flour on it. (She was appalled - "It's chicken broth, how is there wheat in it?!?")

Brother: when I went out with him for Mexican food, and it turned out the chips had been fried in shared oil. (We didn't know until after we downed most of the basket and my DH broke out right there at the table)

Grandpa will never get it - the other day he called it "the Rich Girl's Disease", since I only eat fresh foods at their place (to avoid interrogating Grandma about my food and stressing her out that she can't feed her granddaughter)

Dad is on the way - he finally met someone at work the other day who has Celiac, so now at least he believes it's a real condition.

So I don't know what it will take to prompt your husband's understanding. Some people say if you make him eat gluten-free for a week he'll get it, but he may just feel resentful. Talk to him when you're both focused - maybe even bring in an impartial third party to mediate. Try to relate it to something he understands ("Honey, when you eat pizza in front of me, it hurts. It's like me eating your favorite food in front of you when you've just had a root canal.") Once he sees you changing, hopefully he'll understand. Good luck!

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Its the opposite for me. My husband and his family are totally on board because my husband's brother is celiac but my parents...forget it. They just came to stay with me and my husband caught my mom almost using my toaster for her gluten bread! I have a sticky label right on it stating "Gluten Free Only"! They also kept buying rolls and bread because they have to have the real stuff. They do love me but they totally don't understand the diet. My mom has had problems with diarreah all of her life but she refuses to listen to me that I don't have diarreah when I stay away from gluten :(

I think I would make my parents stay at a hotel if they did this to me! I'm lucky that mom is also gluten-free so she's not going to bring any gluten products into my house.

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Hi Mally-bug...i'm in a similar situation as you are. (see the thread i started: My Boyfriend Thinks I'm Being Dramatic)

Since i just moved away from my immediate family, i don't really know how it is to deal with anyone on a day-to-day basis besides my boyfriend. He likes to cook and i never objected...until now. I am so nervous that he'll do something to unknowingly contaminate the food so i've decided to just teach myself to cook lots of yummy gluten-free meals and keep him as far away from the kitchen as possible! i nearly fainted when i heard him in the kitchen last night pulling a dirty spoon out of the sink and rinse it off before scooping some of my safe ice cream! we had a pretty stern chat after that...

my grandmother has Celiac, which i guess turned out to be a good thing for me because her diagnosis helped lead me in the right direction with my doctor. but she was diagnosed 20 years ago when it wasn't as well known and as a result, she cheats on her diet all the time. She makes her own bread and cooks rice pasta when she's home but she won't think twice about eating regular food while out. in talking to her, i've come to find out that she doesn't really know about all the hidden gluten in stuff so she tends to dismiss my concerns about food. she thinks it can't hurt her that much because she's already old and has osteoporosis (uh, hello...!) i find it easier to let her have her opinion but continue to do things the way i feel comfortable.

i've found the best technique is to keep repeating yourself (but in a polite way) until you get your point across. one poster in my original thread suggested i ask my boyfriend if he would appreciate small traces of estrogen in his food, causing him to sprout boobs. worked pretty well, i have to say.

he has come a long way after many serious discussions. we're going camping with his family this weekend and he has already asked me what i want to bring with us for food. he knows i won't be able to eat much of the food everyone else brings so we're preparing to bring safe chips, lots of fruit, safely marinated chicken to grill on foil and of course Rice Chex for breakfast.

as for going out to eat, i've avoided it so far but it's only been a few weeks for me. it's been very hard because i used to love to go out to eat (Nothing But Noodles was on of my favs!) just yesterday, my boyfriend asked if i would be mad if he stopped at Panera for a bagel and i cried because i had just been thinking about how yummy a breakfast sandwich would be...he decided not to stop and instead fixed himself something once we got home.

so there is hope and remember you're not alone! i've come to realize it's going to take a lot of patience. this board has been extremely helpful.

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one poster in my original thread suggested i ask my boyfriend if he would appreciate small traces of estrogen in his food, causing him to sprout boobs. worked pretty well, i have to say.

Ha ha ha....that was me. Glad it worked!!

Yeah...eating out is a bummer. I glutened myself Friday night. 2 days of vertigo. No it was SO NOT worth it. :(

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My husband doesn't get it , and I don't care if he doesn't get it. :D

He's one of those lucky people who has been very healthy all his life. ( and he has no empathy for people who are "sickly" ---- ) He is 59 years old (doesn't look it ) and can work circles around the 20 year olds today. He's always been an ACTIVE (hyper?) :D extrovert enjoying life to the fullest. ! He takes no meds or vitamins.

I don't try to make him or anyone else "understand"----- It's my problem-- not theirs--after all.

I have no problem eating at resturants he likes. I often sit there and watch him eat and I just drink coffee and talk and enjoy his company. I don't feel sad or deprived . I actually now enjoy my cooking more than any resturant food, anyway. :)

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My husband is great.... he won't eat my gluten-free cookies, but hecertainly worries that I'm eating well enough, and tries to help me get gluten-free food when we're out...

No, my supposed friend is the problem. I told her about having to be gluten-free and she reacted with a 'meh' attitude. I didn't think much of it until she said she wanted to 'do lunch'. I asked her to let me know the name of the restaurant before, so I could look up the menu items on the internet - ie figure out what was safe to eat.

She then replied "why don't you choose the restaurant so that you can accommodate your diva dietary demands, or forward a list to me and i'll make lunch to meet your demands."

She claims this was a joke, which, IMO, makes it even WORSE.

When I gave her the benefit of the doubt and explained what gluten intolerance was, she accused me of 'getting really angry' with her and refused to speak to me for a week. I wasn't angry - annoyed, but not angry. I had made an effort to keep my voice light and I even smiled at the end of the explanation.

She tried to contact me again recently (through email). She did not ask ONCE how I'm feeling and her apology was laced with comments about how WE BOTH were wrong.

Grrrrrrr. Interesting how this kind of thing brings out people's true colours.

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my DH broke out right there at the table

Does it come that fast? I am curious if you are able to backtrack when you get a blister to get a general idea of where the gluten might have come from.

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my entire familly and everyone else thinks i am a total basket case. one of the few ways i have found to make people understand the extreme to which i must go to protect myself and why it isnt "silly" i describe celiac like this : "you know what a peanut-death allergy is right? .. its kind of like that, except you don't die, just get really sick for days on end, but over even the tiniest mount of gluten, like a breadcrumb."

most people just respond "wow, how do you eat, then?" and thats when the conversation leads to me wanting to eye-roll like a kid being asked "so how is school? what grade are you in?"

its easiest to deal with if you have the attitude of "yes, i am high-maintenance." many celiacs seem to think they are not, because using the word "allergy" gives them an out, but the world will see you as high-maintenance anyway, why not just go with it and save yourself the grief? who needs fake "meh" friends. i get annoyed when people act like i can just change by choice, too!

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Well, I have been TRYING to eat gluten-free since July. My daughter had a positive result from Enterolab and she and I both had positive dietary responses. Another daughter got on the bandwagon after seeing our success and she is doing great (eliminating casein too) Now, my son (who lives on his own) is trying this as his fiance is positive he has this as well ---I do too! Now, for hubby......

Here is my problem: we are now empty nesters (at least during college months) and he likes pizza, pasta, chinese food, ice cream cones, etc. He wants to support me, BUT he likes to try new places like a restaurant called "noodles"...does that even sound like a place a gluten-free person should enter????? It's hard walking into Panera, Einstein, etc. I know I am preaching to the choir here. You all know the story. How can I get him and my other extended family to see that this is real for me and not just another trendy fad thing I am doing for a short while before I slip up again?

I have been glutened a few times and he is amazed at the speed at which this affects me. I can tell with 20 -30 min if I have ingested something wrong. You can too, right? My extended family thinks I'm crazy (mine and in-laws) and anything in moderation is fine and so "having a little" is ok. Like my very well intentioned sister who dumped all the spaghetti sauce onto the wheat pasta before "we" got our chance to put a little on our rice pasta..... See what I mean? So what do you do?

My husband is a great guy, but I just don't think he really gets it. Anyone else in this situation? I'll look for your advice.

Thanks~ :(

I read your posting and signed up - just so i could respond to it, because I understand your situation and sympathize.

Your problem is a common one as many celiac sufferers are quick to discover. It's incredibly hard for friends and family to understand what you're really going through when the most dramatic symptoms of this condition are internal.

I'm not a celiac, or a spouse. Yet. I'm a fiancee of a recently diagnosed celiac whose cousin is also a celiac. When my cousin was diagnosed, I really didn't understand how difficult his challenge was going to be. I suppose because he lives so far away - i didn't get to see how completely this would affect him. But when my Amy was diagnosed it hit a little closer to home - there were no question in my mind what i needed to do - i needed to go gluten free for her, because she admitted to the ER with such acute symptoms, I was seriously afraid I would be widowed before I was even married. And for me - there can be no other than my Amy. I waited a lifetime to marry her, and i'd do it again in a heart beat.

We suspected she might be a celiac and took her in to get tested even before things got really dire. She was admitted to the ER two days later, vomiting blood and with a belly so distended, she looked like she was 6 months pregnant. A day later - she was REadmitted. Vomiting blood and still in such awful pain. I was terrified. suddenly i was facing the reality of losing the only person in this whole world who brings any meaning to me, and i decided right there and then - my first priority is to help her regain her health, and to keep her healthy.

Non celiacs don't understand that even if you look perfectly healthy - ANY amount of gluten in your system is damaging your intestine - even if you don't show any outward signs. Non celiacs have a very hard time understanding that you risk more than just a belly ache when you injest less than a crumb of gluten - you risk the ability to digest dairy, you risk the ability to gain any nutrients from even a gluten free meal, you risk your ability to reproduce, and if you continue to eat gluten - you can develop intestinal cancer.

What's worse though in my opinion is the day to day challenge of living with this disease and the impact this disease has on your emotional health. No one understands loss like a celiac does. And until they get that everytime you see a bagel - it hurts - until he gets that watching someone else have a dinner roll in front of you - you mourn - until someone takes a walk in your shoes - he or they may never understand. I gave up cheetos, pizza, hamburgers, hot dogs, cereal, breads, pasta, fast food - you know what i'm talking about. And you can't cheat on the diet - it's not a fad or a passing thing - this is who you are - and no one misses who you were more than you. Alas - until someone walks a mile in your shoes - be prepared for all kinds of insensitivities.

I'm not saying he has to go gluten free too - that's a personal choice but until he understands the kind of loss you're living with - you're in for a very long, lonely battle. And if he really understood it - he wouldn't take you to places where temptation is all around you. I'd never dream of stepping foot into panera bread with Amy - even if i still ate gluten. When Amy and I dine - I make sure they take that damn bread basket away. I make sure she has clean silverware, and we STRESS to the waiter that we want the GLUTEN FREE pasta. etc. We're incredibly blessed, our family gets it - and wheat isn't served at family meals anymore. Every meal is Amyfriendly, as i like to put it.

I don't know what to tell you as to how to convince your husband and family that your health concerns are serious and need to be treated thusly. But maybe this posting will help. Because I nearly lost the only person I care about because of this disease - so I chose to go gluten free for her.

It's a challenge, it's a pain, but by going gluten free for her - at least i understand her loss, and we're united in this, as we are everything else. I hope your family starts to stand behind you, and your man begins to understand what "in sickness and in health" means. But i do know that this isn't a disease many can handle alone. it leads to isolation very quickly. Surround yourself with people who DO understand. Allow them to help you. Make them your support group, but whatever you do - do not eat gluten - even if your family serves it to you. Any gluten will damage your intestine, no matter how small the portion. And if they don't understand your dietary needs - then you have to doubly careful. your health has to come first.

The only other thing I can say is buy them the book "against the grain" by Jax peters Lowell and have them read it. GUILT them into reading it if you have to. helped me really grasp what Amy was going through and maybe they will take your feelings into consideration the next time they think about eating a white bread sandwich in front of you or a subway sub. I know I miss subway, but I'd miss my Amy so much more.

Best of luck, and my heart goes out to you.

G

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Thank you for sharing your beautiful story G. Beautiful because you love your Amy so much and went gluten-free with her and you "get it". Not everyone is so fortunate and plenty of people forget their wedding vows before the honeymoon. My DH and DD both went gluten-free in our home for me. There was no fight or fuss in anyway. They both wanted me to get better. They love me more than food. We are blessed indeed.

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I read your posting and signed up - just so i could respond to it, because I understand your situation and sympathize.

Your problem is a common one as many celiac sufferers are quick to discover. It's incredibly hard for friends and family to understand what you're really going through when the most dramatic symptoms of this condition are internal.

I'm not a celiac, or a spouse. Yet. I'm a fiancee of a recently diagnosed celiac whose cousin is also a celiac. When my cousin was diagnosed, I really didn't understand how difficult his challenge was going to be. I suppose because he lives so far away - i didn't get to see how completely this would affect him. But when my Amy was diagnosed it hit a little closer to home - there were no question in my mind what i needed to do - i needed to go gluten free for her, because she admitted to the ER with such acute symptoms, I was seriously afraid I would be widowed before I was even married. And for me - there can be no other than my Amy. I waited a lifetime to marry her, and i'd do it again in a heart beat.

We suspected she might be a celiac and took her in to get tested even before things got really dire. She was admitted to the ER two days later, vomiting blood and with a belly so distended, she looked like she was 6 months pregnant. A day later - she was REadmitted. Vomiting blood and still in such awful pain. I was terrified. suddenly i was facing the reality of losing the only person in this whole world who brings any meaning to me, and i decided right there and then - my first priority is to help her regain her health, and to keep her healthy.

Non celiacs don't understand that even if you look perfectly healthy - ANY amount of gluten in your system is damaging your intestine - even if you don't show any outward signs. Non celiacs have a very hard time understanding that you risk more than just a belly ache when you injest less than a crumb of gluten - you risk the ability to digest dairy, you risk the ability to gain any nutrients from even a gluten free meal, you risk your ability to reproduce, and if you continue to eat gluten - you can develop intestinal cancer.

What's worse though in my opinion is the day to day challenge of living with this disease and the impact this disease has on your emotional health. No one understands loss like a celiac does. And until they get that everytime you see a bagel - it hurts - until he gets that watching someone else have a dinner roll in front of you - you mourn - until someone takes a walk in your shoes - he or they may never understand. I gave up cheetos, pizza, hamburgers, hot dogs, cereal, breads, pasta, fast food - you know what i'm talking about. And you can't cheat on the diet - it's not a fad or a passing thing - this is who you are - and no one misses who you were more than you. Alas - until someone walks a mile in your shoes - be prepared for all kinds of insensitivities.

I'm not saying he has to go gluten free too - that's a personal choice but until he understands the kind of loss you're living with - you're in for a very long, lonely battle. And if he really understood it - he wouldn't take you to places where temptation is all around you. I'd never dream of stepping foot into panera bread with Amy - even if i still ate gluten. When Amy and I dine - I make sure they take that damn bread basket away. I make sure she has clean silverware, and we STRESS to the waiter that we want the GLUTEN FREE pasta. etc. We're incredibly blessed, our family gets it - and wheat isn't served at family meals anymore. Every meal is Amyfriendly, as i like to put it.

I don't know what to tell you as to how to convince your husband and family that your health concerns are serious and need to be treated thusly. But maybe this posting will help. Because I nearly lost the only person I care about because of this disease - so I chose to go gluten free for her.

It's a challenge, it's a pain, but by going gluten free for her - at least i understand her loss, and we're united in this, as we are everything else. I hope your family starts to stand behind you, and your man begins to understand what "in sickness and in health" means. But i do know that this isn't a disease many can handle alone. it leads to isolation very quickly. Surround yourself with people who DO understand. Allow them to help you. Make them your support group, but whatever you do - do not eat gluten - even if your family serves it to you. Any gluten will damage your intestine, no matter how small the portion. And if they don't understand your dietary needs - then you have to doubly careful. your health has to come first.

The only other thing I can say is buy them the book "against the grain" by Jax peters Lowell and have them read it. GUILT them into reading it if you have to. helped me really grasp what Amy was going through and maybe they will take your feelings into consideration the next time they think about eating a white bread sandwich in front of you or a subway sub. I know I miss subway, but I'd miss my Amy so much more.

Best of luck, and my heart goes out to you.

G

Greater love hath no man than this, that a man lay down his life for his friends. John 15:13 :)

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Thank you for sharing your beautiful story G. Beautiful because you love your Amy so much and went gluten-free with her and you "get it". Not everyone is so fortunate and plenty of people forget their wedding vows before the honeymoon. My DH and DD both went gluten-free in our home for me. There was no fight or fuss in anyway. They both wanted me to get better. They love me more than food. We are blessed indeed.

Purple & Shay - Thank you both for your kind responses - I'm more than happy to help. Hopefully by sharing with one another, we can offer support and help each other find the joy that can still be found after diagnosis of celiac disease. It's not a death sentence after all. I hope Mally that you find the support and understanding you need. It's not an easy disease to manage obviously but there are websites like this one, and local organizations like the CSA to support celiacs everywhere.

Shay, I only hope everyone here has someone as devoted to you as your DH and DD. That's what I try to be for my Amy. I think everyone deserves someone who loves us like that right? I mean - what would it say about my priorities and feelings for this good woman if Panera bread took precedence in my life over her health and well being, both mental and physical? Shame on me if I am ever so insensitive.

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I hope this doesn't offend anyone, but I explained it to my fiance like this... the healthier I remain, the more nookie he gets. Pretty simple. Not to say that he 100% understands as we are fairly new at this BUT he's trying hard. Cross-contamination issues seem to be the hardest for him to grasp but he enthusiastically tries all my gluten-free cooking and prepackaged foods. I present him with the options of where I can safely eat out and let him pick from there. His parents laud my gluten-free cooking (his mom is a very picky eater and no one minds if we eat steak and potatoes every time!) and ask many intelligent questions (helps that his dad is a doctor). My mom has investigated her grocery store for the gluten-free food section and asked what she can keep around for me. I've volunteered to make the gluten-free stuffing for Thanksgiving plus dessert.

By the way, I'm sitting in my office right now with everyone eating pizza besides me. Do I miss it? Heck yes, but my stomach and guts are happy and content with the dinner I packed for myself, and the boss brought in a veggie tray which I thanked him for. My co-workers are great about inquiring where I can go out for lunch and they also ask intelligent questions that I appreciate. We have other autoimmune diseases in the department and I feel that I have good company.

Funny anecdote from earlier... ran into a bake sale earlier and I apologized to the nice lady, saying I had a wheat allergy, she says, "oh, you have Celiac's?" and proceeded to rattle off the ingredients to her peanut butter fudge. Turned out to be safe for me to eat! Ate some with a smile and I'm feeling fine.

I'm sorry that some of you have a lack of understanding from those around you :( Hopefully there will be some people that will surprise you!

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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