lovesaceliac

April in KCs response was so good. I think that's one of the trickiest situations, well-meaning friends who are going out of their way to "help" but not being informed enough to avoid cross contamination or gluten containing ingredients, and then the gluten-intolerant person looking ungrateful when he/she can't eat what was offered.

I think it would also be good to find out from her what her reactions to gluten are like and to be aware that for many celiacs, there are emotional responses when they get glutened: depression, anger, anxiety. Knowing upfront about some of those reactions will help both of you deal with them better when they come.

Please give some advice Meatballman to me, the gluten-eating wife of a super-sensitive celiac...I find myself on occasion apologizing to him when I eat gluten in front of him. I can't help it! I know he wishes he could share...what's more annoying - me turning down his suggestion that I have that cinnamon roll (becuase he feels guilty if I don't eat what I can) or me eating it in front of him (then I feel guitly while I do.)

I am the wife of a super sensitive celiac and we experience the same thing. One of my husband's reactions to gluten is depression and anger. He'll say, "I'm just so angry!" and unfortunately as the one closest to him it often gets directed at me. I adore this man. He is the best friend, husband, and father, but when he gets glutened he turns into an awful person (temporarily.) I'm so thankful that we can at least understand that this is a reaction and that we have enough experience to know that it will pass. That makes it easier, but by no means easy. I just have to "turn off" my emotions and give myself a constant dialogue of "this is the reaction speaking, this is not him, etc. etc." I sometimes call a friend who is familiar with our situation to have a good cry. I'm proud of your husband for going out and getting away from you to go through it. I try to remind myself that I love a package and his difficulties when glutened are part of the package.

I know what you mean about feeling or being seen as "weak." We're not supposed to put up with verbal abuse, right? That's hard - because there are truely abusive situations - but, I don't know - it seems like the abuse I get when he's working through a reaction isn't him and fighting it only makes it worse. I kind of treat him like a child throwing a tantrum - I don't respond emotionally, I do my best to do/say what I know is right, and I try to keep my voice calm and low. Whenever possible, I send him to bed to "sleep it off."

My husband can usually tell within minutes of eating the offending food (always cross contamination only, he never intentionally eats gluten and we are very careful.) His first symptom is "brain fog" which goes away after a while. His worst symptoms appear the next day: severe joint pain, extreme fatigue (usally spends an entire day asleep in bed), followed by crushing depression/anger. Not real fun to live through or live with.

That we can't even trust the "gluten free" options at most restaurants. Well meaning friends say, "such and such a place has gluten free pizza now!" Not a chance my super-sensitive celiac husband could eat it safely. Stupid cross-contamination.

Tell me more about your diet? What do you all like to eat?

That's hard to answer. I feel like I'm still figuring that out (almost three years later!) My husband is the great cook in the family and as a matter of scheduling/division of labor - I do most of the cooking. We love ethinc food and I'm not great at that kind of cooking. That's where we really miss going out: Indian, Thai, Veitnamese, Ethiopian - how I wish we could go out for Pho! And that's where I get really frustrated. Folks on these forums talk about accomodating managers and servers who explain ingredients...but I just can't trust any restaurant, well meaning or not. I've been guaranteed by restaurant staff that the kitchen manages cc...and then we've lost three days of our lives while he's sick. It was about a year ago that we had to write off all restaurants. Funny that I envy other celiacs and long for just plain old gluten intolerance! I need to find time to take some cooking classes.

Wow...thanks for the compassionate responses. This forum has been so theraputic for me. My first night on, I was up most of the night feeling so validated by reading what seemed like our experiences over and over again. It was so nice to feel like we weren't crazy when even loving family members had a hard time masking their disbelief that this is "real."

It really is mourning isn't it? I just grew up watching my mom make pie for my dad. I am surrounded by a culture of women who bake bread for their families. Thanks for the cheesecake suggestion...I had kindof forgotten about that. I had been wanting to try a white chocolate rose cheesecake a few years ago - maybe I'll pull out that ambition again. And will definately try out your recipe. I'll also go looking for holiday ideas. I bet there's lots out there.

I made a pumpkin pie last night and it turned out great. I guess single crust pies are the way to go (since the gluten-free crust is iffy, might as well do pies that don't need too much of it.)...oh, and I'm not a great cook either. That's why I have to rely on my food looking good!

I guess I should be thankful that there are the two 100% gluten free restaurants in our city. That's probably more options than some have. It's just frustrating - while I'm thankful that there's so much new awareness I also get discouraged seeing restaurants on the state's celiac organization's website that he's been glutened at.

Could we somehow create an "approved by super sensitive celiacs" restaurant list!?

So what happened? Please update. I've considered the same kind of "test" myself - can't ever schedule it in to our hectic life though.

I'm also trying to figure this out (without health insurance.) Last time we forked out the bucks to go see a gastroenterologist was about 9 months after my husband went gluten free. Within a week of the new diet he said, "I'm never going back!" and in a month he had lost 20 lbs and regained a color, postive mood, and general health that I hadn't seen in him for over a decade. We were thrilled! About four months later, all the old symptoms started coming back: joint pain, insomnia, depression. So we changed to the name brand form of the prescription he takes that we could be sure was gluten free. Once again, feels better. Another four months later, all the old symptoms start coming back. Ok, pay for a doctor's visit. Dr. says he's positive husband has celiac disease, but that he'll have to go back on gluten to have it diagnosed. Husband says, "no way!" He's going to stay gluten free because he knows from first hand experience that it's the right thing for him. So I convince him maybe he's getting cc'd at home and the whole house needs to be gluten free. He hates to inconvenience us, but agrees. Again, feels better.

Now we've spent over two years gluten free. We've learned a lot. The house is gluten free. We know where to look for disguised sources of gluten. We only buy products specifically labled gluten free (i.e. we spend A LOT of money on groceries.) And now all these restaurants are coming out with gluten free menus...but he gets glutened all the time! He's been glutened at PF Changs, horribly glutened eating the "gluten free" pizza at BJs, and by so many other meals ordered off of "gluten free" menues. As a result, we just don't go out hardly ever and if we do, it's to one of the two 100% gluten free restaurants in our area (both expensive, neither filling.) I watch a friend of mine who has celiac disease selecting the "gluten free" items off the buffet at a church party...all surrounded by fried chicken and biscuits and think there is NO WAY my husband could eat anything there without getting totally sick. I see people on these forums recommending pizza joints that now have gluten free pizza. There's no way he could eat a gluten-free pizza from a pizza place that also makes wheat crust and survive it. Traveling is so frustrating. I try to do searches for gluten free restaurants and can't trust any of the results. Are we doing something wrong or is he just that sensitive/different from "normal" celiacs? Yes, I know the response might be that there are reactions to other foods. We've explored that, we know he doesn't do well with too much milk or processed sugar - but would the reactions to other foods be identical to the gluten reaction? The gluten reaction is pretty miserable and pretty consistent (a three day progression of symptoms that we both can almost set our clocks to.)

Way too long of a post. Needed a little rant. Hoping for some encouragement. I think my usually supportive self is being undermined a little by the approaching holidays and the realization (again) that there won't be any apple pie. Dumb thing is, I don't even like apple pie. I just loved making it for him. I'm an artist and I used to make beautiful crusts. You can't make a pretty gluten free pie crust. I can't at least.

Thank you so much everyone for your kind words. I have really enjoyed joining the community here. We've been at this for over two years now and it was only about a month ago that I spent several hours overnight reading these forums (feeling discouraged about a recent CC episode.) It was like I was reading our own life story. It was so validating to discover that there were people all over experiencing the same things we were. You know, eating gluten free isn't hard (anymore) - it's trying to stay clean in a gluten free world that seems almost impossible! I learned once again that going into a weekend like the one recently past, that I MUST plan out all meals in advance. "Figuring something out" on the fly just won't work. Thank goodness he is doing much better than I would have expected.

Wow...that is all so encouraging! Italy is coming way up on my travel list now. Thanks for the wonderful suggestions. Anyone have experience on wether or not gluten-free airline meals are actually gluten-free? Safe from cc? So many restuarants now offer gluten-free (and my very sensitive husband inevitably ends up getting glutened.) While I'm glad awareness is increasing so dramatically, it's frustrating to not be able to trust people's claims.

I'm about to loose it. We keep a gluten free home to protect my very sensitive celiac husband. We've had a house guest for the last week (who by cooincidence just found out he was celiac and is now learning the ropes - so far he is asymptomatic, so he hasn't dealt w/cc and some of the other issues we do on a regular basis.) The guest was one of several guests and instructors we were hosting this weekend for a cultural arts festival sponsored by our small business. Needless to say it was a crazy weekend that required some eating out, very little sleeping, and ended last night with our house guest winding up in the hospital for an emergency appendix removal and my driving other guests three hours round trip to the airport for return flights in the wee hours of the morning. My husband confessed to me on Friday night that he had been "glutened" and was doing a great job of putting on a good face all day Saturday. I'm crazy exhausted myself, but trying to keep my two small children quiet so my husband can sleep. As soon as I got back from the airport this morning the first thing I did was make my starving husband a sandwhich and chips (we were too busy all evening and night for him to ever eat!) He's gone to bed and I recently looked at the chip bag again to find that they were Frito Lay Mesquite BBQ chips - which I know are NOT gluten free! I don't know who bought the chips and brought them in to my house and when I put them on his plate I didn't even look at the bag in my dazed exhaustion. We buy gluten-free bbq chips all the time and I just assumed they were ours. So now in addition to getting glutened (probably cc at a restaurant) I totally glutened him myself! I could cry. Now I know he's in for hell the next two days and misery for two more. I hate this. Is there any hope that the FDA will eventually require all packages to be clearly labeled? I know what to look for, but so many of our friends and family don't. I also so despirately wish there was something to do to alleviate the symptoms or make them more bearable when this does happen.

Just needed to vent.

Ok, so we're doing great gluten free at home - totally clean. But every time we travel my gluten-free husband ends up with a reaction due to cc at some restaurant (in spite of my best efforts to research in advance and talk to wait staff.) Now that our small business is doing well enough that we can realistically take a month off each summer to travel, we had been planning on doing trips as a family to a variety of locations. I just don't know if we can do it. We wanted to go to Brazil next summer - but how in the world are we going to manage his diet while abroad? What are the labeling rules in other countries? How can I learn? What are your tips/techniques for managing gluten-free on the road?

The first six months were the hardest and at first it was very frustrating - you have to rethink how you do food, but now that I'm two and a half years into it, preparing meals, baking, etc. is all so natural. Made chocolate chip cookies tonight (using Pamela's mix and the recipe on back.) My husband will attest to the fact that my gluten free chocolate chip cookies are way better then the gluten ones ever were! Pamela's Pancake mix is a staple in our house.

We're just over two years into this and unfortunately, still deal with gluten reactions on occasion. This is always due to CC. Our house is gluten-free and my celiac husband never intentionally eats anything with gluten...but CC at a restaurant or family member's house will knock him flat for three days. There seems to be a regular progression through symptoms beginning with day 1: feeling dizzy while eating the offending food followed by digestive upset day 2: extreme fatigue and joint pain to the point he can't get out of bed to day 3: depression, anxiety, and intense irritability. Usually on day four he can begin being functional again.

So I have a couple of questions:

Usually we can tell when he's been "glutened" and then we both get that sick to our stomach feeling because we know we're "in for it" the next three days. Is there anything to do immediately when this happens to make the reactions less severe? Similar to a person with an allergy taking benedryl.

And, all the discussion of "healing" on these forums...is the fact that he has been having this kind of reaction on average once per month preventing him from healing? After the most recent episode, I announced that we will no longer eat at restaurants ever and we haven't had a problem again yet. If we can keep his diet truely clean - will he feel generally better? (The change in his health when he cut gluten was amazing and wonderful, but he still has some unresolved issues.)

Please share your experience.

A related question: I have two children (age 5 and age 3.) My husband has celiac disease (not confirmed by testing - our GI doctor says he is so sure of it the test is not necessary and nothing on earth would convince my husband or me to let him go back on gluten to get the diagnosis.) My children are both healthy, active, with no apparent stomach issues. We keep a gluten free home, but the kids and I do eat gluten when we're out of the house - as often as once a day (once you count lunch at the babysitters.) Should I have the kids tested even though they're not exhibiting symptoms?

We keep a gluten free house for my husband, but the kids and I do eat gluten when we're out of the house. We just couldn't manage the cross contamination issues at home (a 1 yr old and 3 yr old were not helpful in that department.) It took six months for me to convince my husband that we had to go gluten free at home, but I know it was the right choice. I didn't want him to be living in a house where he had to ask, "can I eat this?" It's not fair to him. Now Ritz crackers are like candy for my kids when we visit friends houses!

I heard there were tax breaks here in the U.S. as well? My husband still doesn't want to get tested, no amount of money could persuade him to go back on gluten - I'd be wary of living with him while he did it!

I'd rather see a shared fryers note than nothing. At least I know the food isn't safe! B.J.'s has that shared fryers note on their "gluten free" menu but they actually go to great lengths to keep their gluten-free pizza safe from CC, including separate toppings and pizza boards. I am pretty sensitive and can eat it. Weird, huh?

Unfortunately, I think it comes down to the individual staff at individual restaurants (chain or not.) We've been glutened eating the "gluten free" pizza at the B.J.s in Grand Junction, CO and at the B.J.s in Colorado Springs, CO. Our family policy is if a restaurant gets two strikes, they're out. No more B.J.s for us (although I did start making buffalo chicken and barbaque pizzas at home!)

I just read several online testimonials about the bar of soap remedy. A miracle for some, doesn't work for others. But hey, might as well give it a try. I'm going to put it in bed tonight w/o telling him and I'll report back.

You have to care for your immune system as well.

I get so frustrated I could cry sometimes when my husband has distinctive gluten reactions and I can't for the life of me determine where the gluten came from. What else should we be doing to care for his immune system? What are some other triggers common to people with gluten intolerance?

Wow hpymomof3 - my heart really goes out to you. The sleep schedule you describe is almost identical to that of my husband in our last year of college (almost ten years before we found out he was gluten intolerant.) His big issue at the time was restless leg syndrom, which when we found requip was controlled and now is sleep is just bad instead of awful. His sleep was so bad he couldn't work a traditional job and our whole life plan had to change. It was incredibly difficult and frightening, but we ended up starting a small business that gave hime the flexibility to work around his health problems (which are so much better under control now that we've gotten rid of gluten.) It's hard to be the spouse of an insomniac, I can only imagine how hard to be the mother. You so despirately just want them to sleep. Your post is old - but how are things going now?

Unfortunately, this hasn't been the case for my husband who has been a chronic insomniac for over ten years. Going gluten free two years ago has totally changed our life - he's healthier, happier, thinner, stronger, etc...but still has restless leg syndrome and still sleeps poorly. Sleep is definatley worse when he gets glutened, but pretty bad all the time. As someone who shares a bed with him I've noticed on his particularly bad nights (anxiety attacks, bad RLS, etc.) his whole body seems to radiate heat. He gets so warm that it's uncomfortable for me to touch him. Anyone else have additional solutions to sleep problems?

My husband going gluten free has dramatically improved our marriage (14 years.) He struggled with so many of the same things you described in your husband (depression, anxiety, poor health) Sometimes I think it's a miracle that we made it through so many years of not knowing what was wrong (we only discovered his intolerance 2 years ago.) I chalk it up to his remarkable commitment to our relationship (which was awful for the most part punctuated by brief periods of being so great that it kept us going) and the persistant feeling that I had that this depressed sick, ornery person wasn't the "real" him. We saw doctors and counselors who prescribed pills that made him gain weight and feel worse, we did allergy shots, acupuncture, massage, chiropractic...but when he decided to cut gluten while trying to cut weight to prepare for a jiu-jistu competition just to "try it out" our life changed and I am so grateful. We're still figuring it out. Unfortunately, even though we've cut gluten out of our house, he ends up with a gluten reaction about once a month on average because of cross contamination at a restaurant or family member's house. When he has those reactions, depression/anxiety/anger is one of the symptoms that he goes through. It has really helped me, however, to deal with the reactions by removing myself emotionally from the situation and approaching it logically. I know that his "poor behaviour" at these times is a result of the reaction and is only temporary. I wish I could say I was totally patient and loving and never got angry, but it has really helped. The best part is that the great times are now punctuated by the awful times (instead of the other way around.) I wish you the best.

I am so sorry. I have felt the same frustration (cried some of the same tears) as I've tried to prevent cross contamination issues from making my gluten-free husband so ill. He's been gluten-free for two years and last year I finally convinced him that the entire house needs to be gluten-free as well. We do great at home, but even when we bring our own food to eat dinner with family he inevitably comes home sick. We're planning a trip to visit family next weekend and I'm already anxious about it. We've never made it through a trip w/o him gettin glutened at least once. So discouraging.