casnco

How do people cope with being gluten-free when a patient in Hospital ? Can you trust the catering ? What do you eat/ take along with you ?

NO, NO, NO!!! I work in a hospital and I know for a fact the dietary department has absolutly no clue what gluten free means. I have been taking care of a Celiac patient for a MONTH!!! She just cant seem to get better. Yesterday, after I was off for 5 days I gave her her nourishment for the day. The dietician had sent up grahm crackers, yogert, and a beverage supplement. Of course I took the grahm crackers off of the tray and checked the yogert. Yep, the yogert did in deed have wheat! The staff reported she has been given this daily for the past three days!!!!! It has been the ONLY thing she was eating!!!! They were giving it to her because she has diareah!!! (I am an awful speller, sorry) Needless to say I did call down to the dietician, and wrote an incident report after I sent her back to the ICU once again.

NEVER, NEVER, NEVER TRUST YOUR HEALTH OR YOUR CHILDS HEALTH TO ANYONE!!!! You are safer in a resturant than in the hospital when it comes to Celiac!

I am the Central Ohio contact for the Celiac Disease Foundation. Whole Foods has asked me to host a fun and interactive (very casual) event once per month in Columbus, Ohio. Is anyone interested in participating?

Hey JayT, just wondering if anything ever came of the Whole Foods activity? I have been watching when they send me the email of events. Hope I havent missed it.

Debbie

Has anyone had any problems with breathing that is associated with the Celiac disease? I am just curious. Someone asked me that recently and I told them not yet

I had to bring Alex (my fiance) into the ER last night because her fever skyrocketed and she started having some blood in her phlegm and was just generally stuggling quite a bit to breathe. She was admitted and is on an O2 mask and getting IV fluids and antibiotics. They said her chest X-ray looked like bronchiopneumonia (sp?) and her asthma is also complicating matters.

I told practically everyone invloved in her care that she has Celiac, which means no gluten. But this morning she was brought toast as part of her breakfast! She wasn't up to eating anything anyway but I don't even want gluten in the same room as her, especially when she is already sick. I told the person bringing the meal that she absolutely cannot have anything with gluten and she said she would write that down. I then told Alex's nurse about it and she would take care of it but it might her meals might not be okay for the rest of the day. So I said not to give her any meals for the rest of the day and I just brough her some soup from home for lunch.

I'm really worried that she'll get a gluten meal anyway or that there is no way to avoid cross contamination. She's in no condition to protect herself from gluten right now and I can't be with her at certain times to make sure. Visting hours start again at 5:00 but then I have to leave her again at 9:00. I don't know what to do. I'm hoping her hospital stay won't be too long. Her GP should be in to see her tomorrow morning and she has been a great advocate for Alex this whole time so I'm hoping she can help us with this.

I'm so frustrated and worried!

Ryan

Ryan, Alex is lucky to have you watching out for her. I believe this is normal in the hospital. I work at a large metropolitan hospital in Ohio. Recently a patient was transfered to our floor and her history and physical mentioned she had Celiac disease. No big red sign, no mention on her wrist band. So when her tray came that morning I made sure I took it to her. When I inspected it I found Rice Crispies, which contain Malt! When I called the dietary office to inquire why she was given them I was told they always give gluten free patients Rice Crispies!!!!! I informed them that this cereal was not gluten free and was not appropriate for a gluten free diet. I was then transfered to a dietition. Oh, her answer was LOVELY!!!! I thought my head would pop off my shoulders! She said, and I quote, "Well, there isn't that much gluten in Rice Crispies and some people with Celiac disease can handle eating them." I asked her if she would send a diabetic a little bit of glucose because some people could handle it, or if she would use peanut oil for someone who had a peanut allergy? And she asked me, " Well what will I give her to eat if she can't have Rice Crispies!?" And yes, she was frustrated with me. I gave her a list of food that was safe and suggested she contact Childrens Hospital here in town for further information. I reported her to my supervisor. Unfortunately I don't think it did any good. Now every day I look at her tray. Unfortunately, I only work 3 days a week. FORTUNATELY, my coworkers are great and have been learning about my disease and are becoming very knowledgeable about gluten. Frequently they call me at home to make sure our patient is being feed safe food.

Good luck with Alex. Take nothing for granted. Any information you bring to the staff on the floor concerning Celiac disease will help protect her. And of course, hopefully she is healthy enough to identify a contaminated tray.

Debbie

Everytime I call about yogurt I get the same answer. Only the natural, no flavor is guarenteed to be gluten freel

I have heard the above to be true about Dannon but not yoplait. If you do a search on this site there are alot of threads saying what I have said. Yoplait is made by Kraft, Kraft is a company that discloses gluten on the label. You do not need to call the company, you need to read the label. This is one of the companies that celiacs can trust.

Hez

Thanks for the update Hez, I'll check it out today.

Wondering if anyone can help me out. My daughter (3) has been gluten-free since July 06. She was tested around 11-12 mnths old- negative. Had 2 biopsies also. First one -negative, second one- positive. Blood tests in July 06 were high, Then retested in Oct 06- titers=80, TTG=86.4, retested again March 07, titers= 20, TTG = 67. The docter says she is still getting gluten. I'm not sure where to start to try and figure it out. We have all separate jars of foods for her, sep. toaster oven. I haven't been giving her things that could be cross contaminated, that we know of anyway. Also what ingredient am I looking for in hair products, bath stuff, lotions other than something clearly stating the obvious- wheat, oats, rye, barley....This is so frustrating.

Here's a few things that I am now questioning again-

Healthy Choice lunch meat- In the containers- Ultra thin honey ham

Deli American Cheese- Land of Lakes

Betty Crocker Fruit Snacks-tried calling -get different answers

Kelloggs fruit snacks- same with this one -different answers

Yoplait yogurts

Juicy Juice

Welch's Jelly

Hellmans Mayo

Ice cream- any brands as long as plain like choc,vanilla,coffee

Do I have to worry about the laundry detergent and fabric softeners that I use? Anything anyone can think of would be great.

Everytime I call about yogurt I get the same answer. Only the natural, no flavor is guarenteed to be gluten freel

I don't know why corned beef wouldn't be safe. The ingredients are usually beef and salt. Both of those are completely gluten-free. If the beef is smoked it is still gluten free if the smoke is from wood, which it has been in every case that I have seen. Bon apetit! Cabbage is also gluten-free.

The times I have read the package label I have always found my favorite term "natural flavoring" I always get stumped on that terminology. I just dont want to get sick. I am just getting over my Christmas accidental glutening. Don't want to start all over.

If you want a really nice corned beef and cabbage meal, this is one of my specialties. You'll need a big pan- we tend to use a pressure cooker without the lid, or a wok.

Make up some mashed potato. Make it really, really runny. Add one can of corned beef per two people, one can of baked beans and one of diced tomatoes per two people, and as much cabbage, carrot and onion as you think you'll need. Then add more onion.

Add enough water to make it soupy, some mixed herbs, stir it up well and then add about a tablespoon [heaped] of gravy poweder. [i really hope you can get that gluten-free where you are]

Keep stirring. This is really important, because when it burns, it really burns. It should thicken up to the consistency of wet cement, and go a darkish browny-red. When you can stand the spoon up on its own, its boiling thoroughly and all the lumps of corned beef have broken down into a smooth paste, its done.

Don't try and put it on a plate.

This stuff tends to last us a few days at a time.

Now that is an interesting receipe. Do you serve it like soup? Also, I am not sure I have ever seen corned beef in a can in Ohio. I usually buy it as a roast style piece of meat. I love new dishes to make so I am going to look for canned corn beef on my next shopping trip. Thanks again.

Does anyone know if corned beef is safe? It is time for some Irish food and I love Corned beef and cabbage.

Thanks, Debbie

Just wanted to tell you a story that might help you one day. I had some major foot surgery in October. About a week after my surgery, welts and blisters started appearing all over my body. I went back to the surgeon and he cut the cast off. All of my incisions were weeping and blistering, and my whole leg was one giant blistery hive. I was sent to MANY MANY MANY doctors, and no one could figure out what was wrong. I was given cream after medicine after treatment. Now on an unrelated (or what I thought was unrelated) problem, I saw a gastro doctor and was diagnosed with Celiac's. Now at this point I was still dealing with the blistering rash. It had spread to my entire body including my eyes. At this point I went to a dermatologist. He again prescribed another cream. While leaving his office I meantioned that this had been a rough few weeks for me, that I had also been diagnosed with celiac disease. Well the light bulb went off in his head and he told me the rash was DH. For my surgery, they had basically soaked my body in iodine and then wrapped me up in it and sent me home. Since I had to be in the cast for three months, the iodine was never washed off!!! That was in October, and I recently had to go back to the operating room to have my scars cut out and re-sewn bc they had healed so badly from having the DH. During that time I contracted a serious staph infection. The doctor told me that I probably was made more suseptible bc my immune system was overloaded from the Celiac's and DH. My white cell count and red cell count were way way off because of the infection too.

So all this brings me to a point. It may be helpful for some of you to get a med ID bracelet that has an iodine allergy on it. If you are ever (God forbid) in a serious accident and taken into surgery before your family is contacted, it would probably be most helpful for the surgeon to not cover you in iodine first.

OMG!!! I didn't know iodine was a problem! Sorry you had such a bad reaction. My skin itches for you! Thanks for the heads up. You have probably saved me months of missery and lots of money! I agree with you about the medical bracelet. Just wish they were more stylish. I know style shouldn't matter when it comes to such an important issue, but I am vain.

It is listed as an ingredient in a birthday cake recepie. Anybody know what it is and what can be substituted for it?

I made this cake for christmas and my sons birthday. What a hit. Everyone asked for the recipie. I use 7up or a generic. I also like the sugar free version to cut calories. I also don't like things super sweet. I ust Pamela's pancake mix for the gluten-free flour. Good luck! We love this cake.

If you really like your hair color, maybe you can use it if someone can wash it out in a sink like they find at hair salons. That way you don't get the wheat on your hands or in your mouth when you wash it out. Then have your friend wash your hair to get rid of the wheat.

Carla: Interesting suggestion. Anyone else have a comment on having someone else rinse your hair? Do you think that the gluten remains on the hair shaft even after rinsing? I have been experienceing trouble with CC and was afraid it was my hair color. So I stopped getting my hair colored at the salon and started using Natural Insticts. It is gluten free. I still have CC issues. I would LOVE to let someone else deal with the mess of coloring my hair. I have even thought about asking my stylist to do it if I bought the product. I wil be interested to hear what others think about gluten remaining on the hair shaft even after a good rinse.

I am the Central Ohio contact for the Celiac Disease Foundation. Whole Foods has asked me to host a fun and interactive (very casual) event once per month in Columbus, Ohio. Is anyone interested in participating?

JayT, I am definitely interested. Can you give some details? Are looking for help planning or just participants? I have been to wine tastings at Whole Foods which were nice, but all of the appetizers were loaded with gluten. I would love to participate in a cooking class but have never ventured to do so because of the gluten issue. So let me know what is happening and when and I will be there. I will probably drag along some friends and family.

HATE Arrowhead! Gross! just not light and fluffy. Sorry my only recommendation is Pamela's. I LOVE them. They are light and fluffy. My sister in law and her grandchildren went out and bought the mix after I served them for Christmas Brunch.

Sorry your DH is such a dog! I don't allow any gluten in my house with one exception. I let them have gluten containing cereal. But I told them if they dont rinse their own dish, clean the sink and put the dish in the dishwasher they will be eating cornmeal mush and nutty rice with me!

Thanks everyone for your input. I have made gravies with corn starch. Pretty basic. Although I have always liked my gravies with flour.

I used to make potatoe soup with a flour roux and I just wasnt sure about corn starch with that. I am also trying to avoid substituting so much corn products in my diet.

I guess I wasn't aware that bean flour had an unusual taste. I use a garbonzo/fava bean mixture for a bread and we all like that. I just havent used it in anything else.

What is arrowroot and where do you buy it? Do you use it with anything else?

This is kind of fun learning different uses for my flours and creating good foods. This isn't so bad once you start experimenting, is it?

I have thought all these years that is was my genital herpes. I have had increasing blisters in the past few months along with increased digestive problems that characteristically match Celiac. Sometimes in the past I do remember a cluster of little blisters/pimples on my rear as well. Just always thought it was GH.

Oh yes! I don't have GH so I was rather concerned when this started! Found an unusual topical cream. Calmoseptic. Your pharmasist must order it. Very weird, it has menthol in it. I was skeptical at first. This isnt an area I want menthol! But it helps stop the itch. Give it a try.

By the way, do have a good remedy for the itch. I know to stay away from gluten. But this is my first sign when I have been CC'd. Bummer! (pun intended)

Does anyone have a good substitute for making a Roux?

Okay, here are my favorites. I have been gluten-free for 3 yrs. I never started baking until this Christmas so this is what I have found so far.

#1 Buy a mix or make it yourself for 90% of these things.

*Best Bread = Pamelas Bread and Pizza mix

*Best Pasta = Tinkyinada

*Best Pizza = Mine made with Pamala's Mix for the crust

*Best Rolls = Pamelas Bread and Pizza mix, Just spoon them into a muffin pan. Yummy!!!

*Best Crackers = Nut Thins Almond Smokehouse Crackers

*Best Cereal = Perky's Nutty Flax or Nutty Rice

*Best Waffles = Pamelas Bread and Pizza mix

*Best Donuts = Kinikkiniks Maple iced cake donuts

*Best Muffins = I dont eat these

*Best Cupcakes = don't eat it

*Best Cake = I make it myself with yet again "Pamelas Bread and Pizza mix"

*Best Cookies = Pamela's store bought cookies or I make PB cookies to die for

*Best Chocolate = Can there be a best chocolate? Maybe Dove

*Best Candy = See Chocolate

*Best Gum = Eclipse

*Best Ice Cream = Hagen Daz Rum Rasian

*Best Sprinkles = don't eat it

*Best Sorbet = don't eat

*Best Chips = Aldi's regular chips!

*Best Pretzels = Glutino

*Best Drink = Plain old H2O

*Best Soup = Mine again, Buttenut Squash

*Best Frozen Meals = ?

*Best Nutrition Bars = Don't eat.

Man, mine varies depending on what I have been contaminated with. Most of my glutenings these days are cross contamination. But I can tell you that recently I have been waking in the middle of the night. That is new and my family doctor says that is a normal celiac responce and how most people end up getting diagnosed. I never had that happen before. As for consistancy I must say, "yes" all of those things. And it lasts for quite a long time. Weeks to be more exact. Hope my responce helps.

I love PF Changs! One of the things I do is when my food is served I ask, "this is the gluten free meal, right?" The server is almost never the person who took my order. They always go back and double check. There have been several incidents where this tactic has helped. With the Chicken Wraps, Gluten Free one's are lighter in color than their gluten wraps.

Good Luck. Just clarify your order when it is served. I also really liked BroncoBucs suggestion to make it a special order by having the rice noodles on the side. Good idea I plan on employing in other situations also.

Tiffany:

I would like to talk to the chef/cook when my server is to flipant or looks at me with the deer in the head light look.

Also, I would like to be taken seriously. If the server doesn't "get it" I would like that person to get the manager.

I would like to be treated like my money was as important as anyone elses. That my need for sustanance was also important. I already give up over half of what is on any menu, I am sick of plain meat. I don't go to a resturant that is experiencing a "rush" . We make dinner reservations early in the evening to stack the odd's in our favor for a safe meal.

As I write this I think that is something I would like the server to have a feeling for, all of the sacrafices I made before I walked into their establishment.

And finally, if the server works with me, let them know I will probably tip better than 20% and definately better than most of my peers.

Debbie

Kara,

Without question, I would go see Dr. Edison or Dr. Salt at Mt. Carmel. I have personal experience with both and they are the ones who diagnosed me over 10 years ago. Please let me know if you need any help finding them.

Thanks,

Jay Thurston

Jay,

Do you see Dr. Edison or Dr. Salt for routine check ups? I was just curious if it was necessary after diagnosis to continue seeing a GI doctor?

Debbie, what is your story if I may ask and did Dr. Stiff want to do a Colonoscopy? What tests had you already gone through if you want to share. Thanks.

PeaceAngel22

My story, It isn't quite finished I'm sure. As with most of us I am sure.

What happened to me was I broke out in a skin rash on my elbows. It was miserable. I thought it was my laundry detergent, the material my blouse and shirts were made of, or possibly stress. I tried everything. My doctor had no idea. One day at work I received an invitation to a seminar on Celiac Disease. It had nothing to do with my career and I had no idea why I was sent this invitation. I still don't know of an earthly reason. Anyway I didn't know what Celiac Disease was and I am naturally curious, so I looked it up on the internet. When I started reading the symptoms I was stunned! I had most of the symptoms and the skin rash was what sent me to a dermatologist. During my appointment I mentioned the above mentioned invitation and the idea I could have Celiac. My dermatologist Poo Poo'd me but reluctantly did the necessary biopsey. He told me if I didn't hear anything back from him it was negative. In the meantime he gave me a steroid cream and said to come back in a month. About a week later he called personally to appologise because I was right. He recommended an endoscopy and a meeting with a dietician. That is how I ended up on Dr. Stiff's door. I knew him from my days of working at St. Ann's and knew he was really good. I trusted him. Yes, he did want to do an endoscopy. Although my endoscopy tests were negative I did have the blood work drawn and the blood work was positive. So I would feel real comfortable with Dr. Stiff. He is worth the wait.

Good Luck.

Debbie

Hey all,

had a crummy night last night and just wanted to share it with people who know the drill, thanks for listening.

After my fourth or fifth trip home to my parent's house since being gluten-free, I have realized that basically I can't go there without getting sick. There are just too many variables: non-safe cookware, unclean surfaces, well-intentioned mom who just doesn't get how to cook safely, pressure to eat out. Each time I arrive feeling fine and leave being a little off and knowing that in a day or two I'm gonna be fully sick. Well of course that happened again over christmas, which wouldn't have been a huge deal except my roomate and I host a big new year's party at our apartment every year. I almost called it off this year because of being sick, but had been doing well when we sent out the invites and thought it wouldn't be a problem. I'm usually ok with parties because I don't drink, bring my own snacks, and just leave if I'm not feeling tip top. But, because this was at my house, I didn't really have that option. And sure enough, the mysterious glutening that I got when I was with my parents kicked in full force on Decemeber 30th. So I knew I was pretty much screwed. I tried to make the best of it, but having 50 people in your house when you're shot-gunning pepto and immodium just to keep yourself out of the bathroom really sucks. I think combining the sickness with the anxiety of the party really pushed me over. Once the Immodium kicked in I was ok, but that was after about 6 pepto chewables, which is about 3 times what I usually need to be righted. And for the first time I really felt left out from things I enjoy: liquor (I know I technically can drink, but I'm playing it extra safe), cookies, pita bread, pigs n blankets. To top it all off, a girl I am newly dating was there and I just wasn't in good enough form to fully enjoy the time with her. I've been sick since March, but this was the first night in a long time where I really felt like the illness was screwing up my life - and it pissed me off. I just hate not being able to say "well, I'll be better tomorrow" like most people who come down with something at a bad time. I might feel a little better, but I'll never really truly BE better again. I haven't let that get to me much, but last night it really kicked me in the balls. Among other places.

Anyway, I'm sure we've all had times like this, so thanks for listening to mine. Hope everyone else had a more succesful evening...

Sorry to hear your holiday was messed up. This is the worst hoiday for getting glutened with all of the cakes, cookies and treats!

This year everyone was accomodateing. Unseasoned meat and potatoes and vegtable for the dinner. I made dessert in my home and took it to parents. I thought I was safe. However, it happened. Glutened. Maybe the surfaces of the cookware. Sister in Law was a gem about wipeing surfaces down with Clorox towels. I think maybe just kissing and loving on my niece and nephews. I am not going to stop doing that so I am going to try to be as healthy as I can before I see them and know I will be on a liquid diet for a while after I see them. I will be more careful with them but an Aunt needs kisses and hugs from the kids.