Non-celiacs discuss their experiences dealing with a friend or loved one with the disease. http://www.celiac.com/gluten-free/index.php Fri, 20 Nov 2009 18:44:20 -0800 60 http://www.celiac.com/gluten-free/index.php?showtopic=63884
By the way, I don't eat any dairy or soy. Partly because my breastfed daughter reacts to it and partly because I found I react to it too! I feel so good without dairy. I didn't even know how much it bothered me until I took it out.

Also, both my husband and I tested negative so we're still not sure which side the celiac came from. Plan on doing genetic test though. More to alert the rest of the family since we're all at the age of having kids.]]> Wed, 18 Nov 2009 06:17:19 -0800 http://www.celiac.com/gluten-free/index.php?showtopic=63884 http://www.celiac.com/gluten-free/index.php?showtopic=63871
I received an e-mail today from a sister-in-law, and inadvertently the "forwarding " had come from my step-son (33 yr old). To give you background, I had an end-stage pituitary tumor (brain), that required 2 different surgeries, and at one point nearly cost me my life. Step son says he thinks I had some nerve talking to the family and burdening them all with my health issue, over that. He has great influence over my husband, and believe me this young man has verbally attacked me repeatedly over the years, and I refuse to engage. I have probably been with celiac symptoms for 6 years, and just got diagnosed last month, finally. Well, not to digress further, this guy has told my sister-in-law, his aunt that NOW WHAT, another made-up disease. And the rest of the e-mail plunged on. I am not sure what to do if anything about this, as I have to put up with him at many family gatherings. No one else has had reactions to my tumor (I didn't tell many people of the countless hospitalizations, I just went "on" with life). And no one else has had this weird reaction to this dietary restriction I now have.

Comments or suggestions......]]> Tue, 17 Nov 2009 15:30:43 -0800 http://www.celiac.com/gluten-free/index.php?showtopic=63871 http://www.celiac.com/gluten-free/index.php?showtopic=63289 Fri, 30 Oct 2009 06:17:58 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=63289 http://www.celiac.com/gluten-free/index.php?showtopic=63037
That said, my DH decided to do a "trial" of being gluten-free so that he could see if it helped with his gas symptoms, sleep issues, and some other related gastrointestinal issues that seemed similar to celiac though not as severe. He went six weeks and saw some relief, especially in the sleep area and crankiness levels. He was like a completely different person. Plus, his gas, bloating, and intestinal cramps eased up. (I suspect he thought this would "fix" the problems in 6 weeks, despite what I told him about how long it could take.)

On Saturday, he started a week long experiment to go back to gluten. He wanted to see what would happen. By Sunday he was back to having issues. As of yesterday, he still hasn't decided whether or not go back to gluten-free or stay eating what he calls "real" food.

I am struggling with trying to understand this choice, although I am aware that the food is very different in some ways. He says he can't decide which is worse, eating food that is "terrible" (I'm trying really hard to not take that personally since I make 90% of what he's been eating and he told me was tasting good) or feeling miserable.

I'm also trying to not force him a way he doesn't want to go, but for crying out loud, if you feel miserable, why not fix it???? (I should say I understand very well how hard it is to give up certain foods, I have changed my diet almost completely over the last 7 years to put the best food I can into it). While eating out has been a hassle for him, he doesn't really care for eating out 99% of the time anyway, so I don't understand what the problem is.

He thinks this only concerns him (which is NOT the case since my nose, eyes, and ears work just fine and I am very aware of how different things were on gluten-free). He also thinks that this isn't going to hurt him further down the road since it's just a gluten intolerance, and six weeks is enough of a trial. My thoughts (having done all the research for him before he went gluten-free) are that he's risking more than discomfort, leading to the potential for more health issues down the road. I made sure to lay out all of what I've learned here and elsewhere before he started this experiment (and we're both librarians, so he knows the sources I've been looking at), so he can't say he doesn't know what may happen down the line.

I KNOW that there is nothing I can do, that this needs to be his decision, but I needed to vent somewhere that will (hopefully) understand. Admittedly, I enjoyed the (significant) decrease in gas odors in my presence, as well as the change (for the better) in his overall self (he was extremely cranky and darn near intolerable to be around for a while), and the lack of complaining of how miserable he felt. And I'm honestly not trying to be petty, that stuff was hard to live with for both of us. Talking about this hasn't really helped, because he knows what I would do if I was in his shoes...

Sigh...]]> Wed, 21 Oct 2009 12:41:09 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=63037 http://www.celiac.com/gluten-free/index.php?showtopic=62686
I made the decision to go gluten-free with him at home ... mostly. The only thing I'm probably not going to go gluten-free on is breakfast cereal, because I don't really like corn or rice based cereal all that much. I've already discovered that Lundberg wild rice cakes are very yummy ... much better than the disks of styrofoam I remember as old style rice cakes and a more than suitable substitute for wheat crackers, which was a common afternoon snack for me.

We have some things going for us. First, we live in a fairly large urban area, with a lot of good groceries (yay Wegmans!), specialty stores, and a long list of restaurants with gluten-free menus. Second, we are both avid cooks who mostly cook from scratch anyway, so really about the only things we needed to evict from the pantry were my breadbaking supplies and our whole-wheat pasta (yay for Tinkyada!). Third, we like a wide variety of ethnic food, so we have a wide variety of choices. And fourth, we have no kids, so this means only the two of us need to switch.

And I do know I don't need to switch (well, as far as I know anyway), but I want to. It'll make cooking a lot easier. Though honestly, it's a short list of recipes in my usual stable that will need any real changes.

Tomorrow we're going on a tour of some of the specialty shops, and I've got a shopping list from a new gluten-free baking cookbook I bought (Gluten-Free Baking Classics by Annalise Roberts). I was an avid breadbaker before all this, and hope I might be able to learn to make decent gluten-free breadlike products. I do understand that it's hard to adapt gluten free bread recipes to a bread machine, so that's a bit disappointing, but I'll learn to bake it the old fashioned way. Crusty bread and beer are going to be the two things we'll miss the most. We've tried several brands of gluten free beer (we started experimenting a few weeks ago when it became clear what direction all the testing was going), but when your benchmark is Goose Island IPA and Stone Arrogant Bastard ... well, we'll stick to hard cider. I know I can still have beer, but somehow it seems rude to drink it in front of him.

So, we've been at this less than a week for real, but my husband says he can already tell his digestive system feels better (I think his exact words were "I didn't even realize I was feeling bad much of the time until I wasn't"). I know this is just the beginning, but if it makes him feel better, I'm certainly game.]]> Fri, 09 Oct 2009 15:43:42 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=62686 http://www.celiac.com/gluten-free/index.php?showtopic=62534 Their mother is in hospice and they are discussing the funeral arrangements.
So she says she wants a "get together" at a restaurant after the funeral - a place we are not familar with. She tells me that it'll be a small gathering, etc. and as to my husband's diet, "we really don't have to worry about that." (meaning, he doesn't count - no need to include him or concern ourselves about a special meal for him).
I didn't argue with her because they are both besides themselves over their mother's death and I don't want to start a fight with her - my husband didn't hear her say what she said.
Behind the scenes I called the restaurant and they are familiar with gluten free, so not a problem. But this isn't the first time my husband's sister did not include him in family gathering.]]> Sun, 04 Oct 2009 15:17:25 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=62534 http://www.celiac.com/gluten-free/index.php?showtopic=62443
Now, with that said, as good as her intentions may be, she just does not get it sometimes! I just thought I would share some of the funny comments that have been said at family dinner with respect to what I can and cannot eat. I thought it would be fun for all of us to post some of the funny stories we have from family members who are well-intentioned but maybe not quite as knowledgable as ourselves! So please please please feel free to post any stories you can think of!!

1. The pie incident: For birthdays in my boyfriends family, the birthday person gets to choose what they want for dinner on Sunday night the week of their birthday as well as the dessert. It was my boyfriend's dad's birthday a couple months ago and he decided on Rhubarb pie for the dessert. My bf's grandma apparently makes amazing pies (I unfortunately have never been able to try them...). So she makes the rhubarb pie, and it smells great! So we get done eating dinner and they bring the pie out for dessert. I go to the refrigerator and get my gluten free cookie I brough and some vanilla ice cream so I can still eat dessert with everyone. BF's mom says "Well, why can't you just eat the filling out of the pie? I understand the crust is breading, but can't we just spoon out the filling for you? You're going to make grandma feel bad that you didn't try any of her pie!" So...I had to explain that in addition to all the gluten that was in the pie crust, the filling was baked in the crust, touching the crust, etc... so even if the filling itself didn't have gluten in it, it was contaminated. A little while later I just started giggling thinking about them trying to spoon out the filling for me

That was the best one I could think of at the moment. I do have quite a few more so I'll post more as I think of them... Please feel free to add! I think it's important to remember that even though this Celiac thing is stressful at times, there are some lighthearted moments we can laugh about later!

Sally]]> Thu, 01 Oct 2009 08:54:32 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=62443 http://www.celiac.com/gluten-free/index.php?showtopic=62406 thanks! ]]> Wed, 30 Sep 2009 01:21:55 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=62406 http://www.celiac.com/gluten-free/index.php?showtopic=62162 I do the vast majority of the cooking in the house, and my husband obviously has certain things that he loves eating that I won't be able to. We also have 5 children between us that I need to cook for as well.

I know that going gluten free is probably going to make me feel loads better, but how on earth do I cook dinner for me, my husband and the kids without cooking 3 different meals? Our children range between 8 weeks - 9 years of age, so I pretty much have my hands full as it is! How strict do you really have to be? We can't afford new cookware etc just for me, plus it will double the dishes I have to do anyway.

I just don't want to be a big inconvenience for my family. My husband knows I have to be gluten free soon, but I really don't think he completely understands what that will involve. I don't even fully understand it yet!! At first I was so excited at the prospect of feeling better, now I'm thinking of the whole thing with a huge sense of trepidation. *sigh* How does everyone with families cope?]]> Sun, 20 Sep 2009 17:33:58 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=62162 http://www.celiac.com/gluten-free/index.php?showtopic=62101
My husband has been dealing with a blistery rash on his head for the past year. He's gone to 10 dermatologists, had lots of tests, and spent a lot of money in prescriptions. Finally, after a visit to the ER, we were recommended to an alternative specialist that suggested that perhaps he had celiac disease (among other suggestions). Since our visit there almost two weeks ago we have pretty much cut out gluten in his diet. My husband is having a difficult time with it and sometimes will get slack and not check labels. He said he was "starving" the other night and ate the one box of cereal that we still had in the house that wasn't gluten free (Shredded Wheat of all things) and promptly got sick in our bathroom.

Besides the rash/boils on his scalp, his other symptoms are chronic headaches/migraines, neck pain, constipation, bloating, depression, foggy brain/confusion, sleep problems, anxiety. He was also recently diagnosed with hypothyroidism. His levels were only a little bit off but they still haven't gotten that regulated. If this is all related to celiac, I can't even tell you how much money will save on prescriptions in a year! He is having the blood test today but has been about 80% gluten-free the past week or so. Will it still come back positive? Even if it doesn't come back positive, I am almost certain this has been his issue all along and am so beyond frustrated with the medical system that we have been dealing. His doctors made it a point to tell him that it was highly unlikely that his skin condition was related to diet.]]> Fri, 18 Sep 2009 07:02:49 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=62101 http://www.celiac.com/gluten-free/index.php?showtopic=62075
I am REALLY self conscious about telling my family and friends about this... not ashamed but I just dont want them to feel that I am going to be a burden for them when I come visit, etc. I am single and live alone so its pretty easy for me when on my own, but...!!! Have you found any way of approaching this that has been effective to you when dealing with family and friends? ]]> Thu, 17 Sep 2009 09:44:43 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=62075 http://www.celiac.com/gluten-free/index.php?showtopic=62064
Current Symptons
:Bloating
:Very Gassy, Become gassy almost every single time I eat
:Massive Stomach Cramps
:Irregular Periods, sometimes its so light almost non existant, sometimes its extremely heavy
:Massive Migraines
:Always tired but never able to sleep, more lazy and unmotivated
:Sometimes I have insomnia, followed by boughts where I can sleep like 12+ hrs
:Extreme mood swings, go from happy to sad to crying to laughing like nothing,i its very annoying, my boyfriend is almost to understanding, hes so supportive, I have no idea why he hasnt just up and bolted yet.

One thing I have to mention however is that Im actually over weight, about 5 ft 7 and 220 lbs, where Ive read that alot of celiacs are under weight, and Im not constipated, nor do I have diarhea that often. I do however have BMs probably 4+ times per day, which Im assuming is not normal. Sometimes when I eat noodles, I have a hard time to even climb the stairs to my room to lye down or even sit comfortably in a car. I have a very high pain tolerance so to me maybe a stomach ache is a lot more to someone else, Im really not sure. Im thinking of being tested for Celiac diesase but have read on this forum that there are PLENTY of times that people come up with false negatives. Any input is greatly appreciated. Thanks!! ]]> Wed, 16 Sep 2009 19:28:08 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=62064 http://www.celiac.com/gluten-free/index.php?showtopic=62032
I figured it would be easier for us to just get rid of everything with gluten in it from our house. Since we both do a lot of cooking, rarely eating out, we had several bags of stuff to remove. I had been seeing "gluten-free" popping up on products, but didn't really know why. Now, I do. Our neighbors were kind of surprised when I showed up with four of the cloth bags full of stuff we were giving away. They offered money, which we didn't take, but were kind enough to show up a couple of days later with a bunch of gluten free food. Quite nice.

Anyway, we removed everything except for the barbecue sauce and flour tortilla shells. She rarely eats the BBQ sauce, unless we make BBQ chicken, which we bought new sauce for when we do some grilling. I also eat a lot of turkey wraps when I get off of work at midnight, while she is asleep, and her tortilla shells are fairly expensive. If we make enchiladas, burritos, or quesadillas we'll use her tortillas. I also tend to make large pots of stew, spaghetti sauce, or taco meat, and then freeze them in ziplock bags. This makes it easy for us to grab a decent meal if we are in a hurry for work. Unfortunately, all of those things are made with my grandma's homemade tomato soup, which uses flour. We aren't going to toss those, I'll just put some red duct tape on them so she knows not to get into them. I'm going to get the recipe from my grandmother, and make our own tomato soup for the future.

We went to a few different stores, and some places are very organized with their products. Sprouts made it easy by having everything that is gluten free labeled with a green shelf marker. Their produce was cheaper, and in better shape, than most other places as well. I did buy some Sam's Club animal crackers, with wheat, because I like to have them with tea at work. She has her own crackers, so that won't be an issue. As far as crackers and whatnot, we didn't eat a whole lot of them anyway. We rarely had cookies, and the chips we like are already gluten free, so we are getting lucky there.

My family is ultra-supportive, and have been obtaining information and some staples for when we come visit. Her family, on the other hand, told her that they "didn't have time for this right now". They said they didn't have enough money to go out and by all new groceries. We kind of expected them to say that, so it didn't come as any surprise. I sent them, and my family, a rather long email telling them what the situation is, and how it won't be that difficult for them to cook something. Since we don't visit often, they won't even have to buy new groceries. We'll see what happens.

Now, I have a couple of questions:
1) Since she didn't have much in the way of symptoms, what do you think will be the reaction to any cross contamination in the future?
2) All this talk of separate utensils and everything; do dishwashers not do a sufficient job of cleaning?
3) I haven't given up beer. Will this send her into a reaction if I kiss her? (this is probably associated to the first question)

Good times. It doesn't bother me much, so we'll see what the future brings.]]> Tue, 15 Sep 2009 20:25:48 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=62032 http://www.celiac.com/gluten-free/index.php?showtopic=61942
THANK YOU]]> Sun, 13 Sep 2009 08:17:12 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=61942 http://www.celiac.com/gluten-free/index.php?showtopic=61913 I am looking for people to help me & him to live a better and happier life. He was diagnosed 3 years ago with it, and it is so hard to find what he is suppose to eat and what not to eat. The doctor he had which found he had it no longer lives here and we cannot fine a doctor that he is comfortable with, ( he is not a easy patient)
But he suffers so badly, we both are on social security now I have one cancer, and he with the celiac great pair huh ....So here I am reaching out to the net. We have a store here that sells gluten free foods but lordy are they so expensive....

Could someone either tell me the foods he can eat or point me in the right direction?
Because all the doctors say is gluten free, well we don't totally understand that, I have been told wheat or rye bread is ok but white is not & then I read wheat is not good, and he loves his bread majorly, I would even make homemade bread if I could find the right way to make it.

Also he gets so very constipated sometimes not going for a week or more, and he has taken everything prescription form and prune juice and phillips you name it and he still has a horrible time, we grow very large veggie garden's and he gets plenty of greens, and of course the doc tells him it is part of the celiac. Does anyone know anything to help him with this also, because when he does go he bleeds so badly and he doesn't always tell me when he does bleed because he does not want me to worry but after 20 yrs of marriage a wife just knows ......

And oh how big his stomach gets like a round basketball and so hard, he is on pain meds but they do not help as they should they take the ease off but still do not help. We go this coming 15 to the doc's so if there is any info or anything I can tell the doc to give him for the celiac or just anything please let me know, I love him and hate to see him suffering so much and dieing like this is horrible...

Thank You
Blessings To All & Everyone Who Is Going Through This Terrible Disease

Terry Eaglefeather[color="#800080"][/color]]]> Sat, 12 Sep 2009 14:55:09 -0700 http://www.celiac.com/gluten-free/index.php?showtopic=61913