mellajane

After being gluten free I was still sometimes having symptoms mostly in the mornings; a nurse was telling me thatyou have to check your cosmetics such as perfumes.. she mentioned Clinique products. I have used clinique for years as well as biolage. When I went home that afternoon I proceeded to have given away all 5 bottles of Clinique perfume( yes I miss my Happy). I also checked my biolage guess what wheat germ oil. My symptoms needless to say went away. The whole shampoo thing seems a little controversal, I dont use anything with wheat or gluten.

I get symptoms of being glutened when I go in a health food store...from the whey protein? I swear there is gluten in perfume, too, that gives me a reaction. I know my father-in-law knew someone who was so allergic to poison ivy that he'd swell up if he smelled it burning even. Do any of you react to the smell of wheat, too? Let me know:-)

Any help would be awesome... I have emailed several places concerning their products, how do I post those emails for others to look at?

Eating out ..... it used to be a luxury now not so much I have been gluten free for almost two years. I am very careful at first I ate nothing but salads with vinegar and oil.I didnt want to be one of those customers who are really anal retannint. (that did not last long) I agree with the majority when you have a wheat or gluten allergy you have to go 100%. I am very sensitive as well. My boyfriend has bee awesome through all this. He has been my hero. Keeps me very grounded. I love food and espespecially sweets! I used to be a caterer. All this yapping is because it gets better.... Restaraunts I am always looking for. Outback is really good,P.F. Changs, Chilis, you really just have to research your area. Vegetarian places always are really good as well. When eating out remember you are the one who will get sick!! Go with your intuision if looks unsafe skip it!

I just want to know if there are any other celiac's in this world who don't eat out ANYWHERE no matter what? I have such extreme reactions that I literally believe that I am going to die everytime it happens so I will NEVER EVER AGAIN eat anywhere other than my home and a home of a close friend who is probably more careful than me when it comes to preparing food. I have read posts of some celiac's telling others, they should "take chances" and "live a little". Even if I didn't have such severe reactions, I would NEVER eat out knowing that the restaurant business offers the lowest wages of almost any job available. I would never leave my health in the hands of a bunch of minimum wage earning 19 year olds. Do you really think that in a busy restaurant on a Friday night where the staff is having trouble getting a steak cooked properly, that your order will not somehow be contaminated between the 4 or 5 staff that have handled it. Do you really think you are eating "gluten free"???? I like to call it "no gluten intentionally added". How many of you who don't have noticable reactions have unknowingly, time after time, ingested gluten while eating out? Lots I bet. Aren't any of you scared of cancer at least? I will not risk my life for the sake of eating out.

By the way, my husband was a general manager of a restaurant for many years before becoming a sales manager for the largest food wholesale supplier in the world (next to McDonald's that is) and he has seen it all. He is not a celiac and says that given what he has seen and experienced throughout his many years in this industry, he says he would NEVER recommend that any celiac anywhere go out to eat at any restaurant if they were in least bit concerned about ingesting gluten. The exception being of course, gluten free dedicated cafe's or restaurants or those restaurants where you know the owner, management and staff personally.

I just want to know if I'm the only one who feels this way?

I have got it..... This has turned out to be the best pizza out there. Foods By George does personal cheese pizzas. They of course are pricey, I buy them by the case once a month from my local health food store.Seriously the first time I had it of course you know I was like great here comes dissapointment. Not! it was delicious. I eat pizza probably 2to3 times a week for lunch. I now put fresh tomatoes on them with garlic. They are filling..... I love my pizza!

So that whole making pizza dough thing didn't work out for me.

I just want some pizza. Is that so much to ask?

I also want people to turn their headlights on when it is raining. Common sense, I thought.

So the good news is that I got the dough to stick to itself enough so that when I was scraping it off my hands, it clogged the sink. Silver lining, right?

And this is why we always have an Amy's frozen pizza in the freezer for backup. Backup for failed new gluten-free dinner ideas!

Any suggestions for (literally) fool proof pizza dough mixes? I tried the Namaste one last week and I did something wrong because it was really, really, really, really hard. (After a day in the fridge it was fine, though.)

Thanks!

I also have all negative test results but have been gluten free for two years almost. This has been the only thing that has worked. When is enough a enough? I recently gave my Dr.s opinion the benefit of the doubt. They stating we should go through all the testing again.....I did it. The gastro dr. who did my colonoscopy read my history and asked why are you here for a colonoscopy if the diet has worked this long...HMMMM I am wondering the same thing. He gave me a 95% chance of negative results before the testing. Came back negative and was advised to stick to the diet. This disease is to new to the medical field and very hard to diagnose. If you have not gone on a gluten challenge yet try for a month. You will notice a difference the first week.In my research I have realized that gluten allergy causes more bowel symptoms. I am opposite I get very sick like throwing up for days....this is a wheat allergy. I do avoid both at all cost. Good Luck. Mella Q.

After reviewing my bloodwork, stool tests, and biopsy, the GI doc just told me there's no chance I could have celiac or gluten intolerence.

PLUS, he said all the auto-immune diseases my primary doc is checking me for won't cause the diarrhea! But he did say it could be ulcerative colitis, which is also an auto-immune disease.

He's recommending that I come in for a colonoscopy.

Dont get frustrated I am 30 years old and have been sick since I was 7. Do you know how many jokes and comments I have received. I weigh 110. That is great. It has taken me almost two years of being on this diet to gain weight. It will come. I have always been small but us small people know what its like to be skinny.Your appetite wont seem like it is changing you will just see yourself keep on some weight. It will come! This disease has thrown our bodies off no telling how long for. Good Luck. Mella

For the last few months my family has been bugging me that I need to gain back the weight I lost when I first got sick...and I have been trying so hard. I ate literally four or five jars of peanut butter in the last four days...I've been eating all the time for weeks and I still look like a skeleton. The only thing it has done is make me feel sick constantly. My husband says I should gain weight first then get my stomach back to feeling good but he doesn't understand how bad it feels sometimes. I am at the point where I don't even care how I look...I just want to feel better. I hate the looks that I get a lot of times, but feeling bad just isn't worth it. Is it really that bad to be really skinny?

Thanks for listening (or reading ) ...sometimes it's hard when no one really can understand how you feel. Most people take food for granted without worrying so much about reading every label so it's nice that all of you get it.

I am very careful as to what butter and margerines I eat. Recently when I went out of town I made my usual pot roast but not being at home had to use the butter available.. It was parkay... needless to say I was very sick for the next 4 days. So use your own discrestion but I do not eat the popcorn from movie theaters as well.

So i went to see a movie last night and i really wanted popcorn.....it made my stomach hurt and ive had diarreha all day......i read the ingredients on thier massive tub of margarine and it seemed ok.....but it had canola oil.....i dont really know what that is......was i glutened?

I have to agree with the majority Pamela's bread products have been the best so far. I also bake my own with lots of trial and error. Practice makes perfect? Kinninnki does awesome tapioca hot dog and hamburger buns.

What do you believe is the best gluten-free bread? - either a mix or from scratch. I've tried several myself, but wouldn't consider any of them to be all that. I've given up on buying whatever I can get my hands on and then having to throw it out once it's baked. Let me know what you suggest and I'll try it

I absolutely love Nutella and bake with it frequently. I also put it on everything.... So good with fruit. From everything I have found it is Gluten free....So eat up!

Does anyone know if Nutella (The Hazelnut Chocolate Spread) is gluten-free? It looks like it is, but I just wanted to know if anyone could tell me before I call the company.

Thanks!

Thanx.... this is an awesome site. Im obsessed with all the research and info. out there I learn new stuff everyday! Good looking Out! Mella C

Check this out: Open Original Shared Link

Hello, I am 30 years old and have been mis- diagnosed since the age of 7. My dad was in the military so naturaly we also went to a military hospital. I get very sick and dehydrated we never had seen any sickness like this. In 2005 a Dr. suggested I stop eating wheat and gluten for a week to a month I would notice a difference immedietly. I noticed! When I was about 15 the symptoms subsided some, but around 21 they came back. I have been tested repeatdly and have completly negative results. Guess what this diet is the only thing that has worked since I have been sick. Im sticking to the diet two years later and have a completly different life. No more sick. This disease has effected my whole life and the people that love me most. Please express to your dad this disease is killing him. My brother who is 4 years younger has had IBS now for five years. I suggested to do some research on celiac disease and just try to stop for a week... he felt better instantly. Guess what his test came back negative. My advice, if it works stick to it. This disease is new to the medical field and DRs. are almost our worst enemy! Chances are we have other family members that this disease is extended from. If it makes your dad feel better let him know Im Italian and love food. This disease is challenging but it will make you feel normal and healthy again if you follow the diet. Good luck my heart goes out to you and your family. Good luck... Daddys can be so hard headed!

Sincerly Carmela Q.

Backstory:

I'm positive that my father is a celiac also. He has a lot of symptoms, I have it, and his first cousin has it. I convinced him to go get tested. So he made an appt with a GI, which he had to wait ~6 weeks for. During that 6 weeks, he went almost completely gluten-free (I know he wasn't totally gluten-free, because when I went to his house he was doing nothing to prevent cc and tried to feed me "wheat free" cereal that was NOT gluten-free). The entire time he said that he couldn't possibly have it because he didn't feel better (well duh, he wasn't totally gluten-free and he's in his 50's so 6 weeks might not be enough healing time anyway). Then he went and had his tests done, the were "borderline" according to his doctor and the doctor doesn't consider borderline tests to be an indicator of celiac. That was the answer that my dad wanted, so now he is 100% convinced that he does not have it.

Of course, he still has not gotten to the bottom of why he feels terrible all the time. He is coming to visit me in a couple of weeks and I would really like to have some compelling evidence that false negatives are relatively common. He is a very, very stubborn man. He is also a very educated man (college prof) so he is sometimes, erm, hard to reach about certain things. But I have to try, because I *know* in my heart that he has celiac disease and that he is harming himself by not following the diet.

Can anyone help me?

Thats Crazy the exact same thing happened to me..... Biologe has been my favorite for years. I need help still what shampoo and conditioner are you currently using.... Anyone with some feed back would be cool!

Mella

So I have always bought Biolage because it works the best for my naturally curly, course hair...just bought a new bottle of shampoo and conditioner. Today I was taking my time in the shower and thought about reading the label.........."wheat germ oil"!!!!!!! are you kidding me?? $30 down the drain!!!!! any suggestions on some good shampoo/conditioner I can get at a decent price???

Thanks!!

Lindsey

Hello, I am Italian and was raised on it... Yes a bit of a challenge. So the key Garlic.....Cheese... I really tend to like the angel hair pasta the best. I have been gluten free since January of 2005. Pasta bakes are always really good sauce, cheese, garlic and cook the pasta half the amount of time and then bake with foil ontop for a few minutes taste great... Rissoto which is rice with pasta sauce and cheese is ease and deliscious too.. Good Luck! MANGA!!!!!!! (means eat in Italian)

I love Italian food, anyone have any comfort, easy, delicious Italian favorite classics, thanks!

Well hopefully then you are like every other celiac you wan toto do more for the cause.... Before I knew I hab celiac I was a Caterer, challenging yes.... so now I am trying to make my desserts gluten free and sell them.. This disease is so new getting involved now is going to be a very very great thing. Do what you can use your skills and your heart to help. I wish you the Best of Luck.. Good for You!

OK- so I NEED something to get me going again after everything that's gone on the last 3 months (quick version: had gall bladder out, took PhD exam, 36 year old husband had stroke, and now I have C Diff). I need something to look forward to, to strive for..... no, finishing my PhD is all well and good, but something more than that. That's like my career.

So, I was thinking I wanted to do something to raise Celiac awareness and money for Celiac research and be the first person with Celiac's to..... and that's where I get stuck. I want it to be something challenging, that I have to train for, but not too extreme. Don't want to be the first person with Celiac's to climb Mt Everest (too easy ). Something that I can raise money for and traon for between now and June 2007 because I could do it over next summer.

So, of course I've come up with silly ideas like:

1. First Celiac to try every gluten free beer in the world (OOH YEAH!!!!!!)

2. First Celiac to swim her way cross country (not literally- but drive from state to state and swim in at least one river/ocean/lake in every state (check out www.swimmingholes.org)

3. First Celiac to eat a pizza without keeling over (not worth it)

But I'm having trouble thinking of ideas that aren't too outrageous (like surfing on every continent which I would KILL to do but I have a hard time believing anyone would give me money to do this. Too fun!)

Marathon running is out (no back).

Someone biked across the US last summer to raise Celiac awareness so that's already been done.

Lets see- I like to swim, surf, ski, photograph, travel, walk, hike,

Looking for inspiration

Funny and outrageous ideas totally welcome!!!!

Hello, I have been sick since I was 7. In January of 2005 I stopped eating wheat and gluten. I noticed the difference immedietly. In the begining I to sometimes would not get a reaction for at least 24 hours. Now its an immediete reaction. His tloerence is higher now than it will be. He will notice the difference. He has to stick with it. This disease is deadly if not taken care of. I am 30 years old and now know i will be able to have children one day. This disease was killing me slowly and unoticed. Its very challenging but it will all come together. Good Luck

My DH is not feeling well tonight...crampy, gassy, uncomfortable.

We've been gluten-free for just over a week, and we were seeing some improvement in him. Monday we went to my parents' house for a cookout. It was the first time in over a year that he's felt well enough to eat anywhere else but our house. My parents cooked hamburgers/hotdogs, and while I suggested he just have a hamburger patty w/ no bun, DH was stubborn and insisted that one bun wouldn't hurt him.

He's an adult, so what could I do? Could he be sick now because of something he ate 2 days ago? I know that around here, we've been totally gluten-free since going to my parents' house, so it's nothing he ate here.

If so, I hope this will be a lesson for him!! He has not been tested yet, but I'm certain now that he has a gluten-tolerance issue.

Hello, yes those symptoms are from the wheat or gluten I am very allergic to the wheat but avoid gluten as well. I get very sick hot and cold sweats nausea and chronic vomitting this usally lasts 2 to 5 days. Recently I found out I have a Hyateal Hernia.... I have been sick since I was 7. Now when I have an allergic reaction this hernia reacts which is all stomach acids coming up, very much likean acid reflux reaction. Whatch out for this as well. Tell her to comepletly stop eating it. Its a very challenging diet but not being sick is so worth it. I started this diet in January 2005. It has literally changed my life. Food will get better, its so frustrating. I used to be a Caterer. I am now looking into selling my gluten free desserts. It will all get better. Good Luck!

Hola,

First time logged on here. In anyone else's experience has there been a direct correlation (connection) between extreme fatigue, nausea, stomach pain, and flu (or cold like) symptoms without a fever? Or sleeping a full 10-11 hours and still not feeling rested or refreshed? My girlfriend is celiac and I'm still learning about it all to make to it easier for her. We can't tell if all of those symptoms are just part of having Celiac's or if she keeps getting into gluten some where or if it could residual effects of a gluten-binge from over a week ago? Any advice, information, etc. would be much appreciated! Thanks in advance!!

MMMMM.... Snickers bars are a daily treat for me. Love them to go on sale. They are Gluten free I found this from the Clan Thompson website. Dove Im not sure but that would be awesome. Blue bunny not sure either.

I was wondering, if anyone eats snickers Ice cream bars there was a cupon in todays paper for them and they look great and I havent had them in forever are they gluten-free? And are the dove ice Cream bars gLuten free?

One more question is the blue bunny ice cream gluten-free, I am cravin some ice cream!

Hi I am 29 years old and have been sick since I was 7. Talk about misdiagnosed... I went through the whole anger side of this disease where I now am convinced some Drs. just dont listen. Bitter yes, its like you realize Drs. have actually been poisining us for years no wonder we have never gotten better.My mom still is coping with this herself she feels guilty...Its not her fault she is the only person who knows me best when sick. I self diagnosed myself in January of 2005. Traveling, work, times with my family and friends has never been better. Nobody is worried if when Im going to get sick. I am still struggling with being diagnosed on paper or with biopsys. I am convinced this is what has been wrong my whole life. Its been challenging but worth it. I used to get deathly sick until I stopped eating wheat and gluten. A big misconception is the difference in symptoms from gluten vs wheat. With me it was always nausea and lots of vomitting. (Wheat Allergy)People who tend to have bowl problems (Gluten) there is a differnce. I avoid both... My best advice; research it if this is working for you Stick to it. I am so happy that I finally have a solution to this.Everything makes sense. Letting people know your story and your knowledge of this disease is better than any Dr. will ever do or Accomplish.

Has anyone ever considered or actually written to an old doctor that misdiagnosed you? After eight months gluten-free, I'm starting to realize how sick I was. It came on gradually so I never noticed that I wasn't feeling right. My life has dramatically changed for the better in the last year.

But then I think about all the times in the past that I should have been diagnosed but wasn't. Someone should have figured this out at least six years ago. The one doctor's visit that sticks out in my mind the most is one to a GI. I was throwing up blood so he knocked me out and did a stomach scope looking for ulcers. Didn't find one and told me that it was probably nothing. Why the heck didn't he think to go a little further and look at my probably non-existent villi??? That is his job.

So, the other day I was thinking maybe I should write a letter to all my old doctors who misdiagnosed me. Or shall I say, didn't diagnose me, because most of them said "yeah, we don't really know what's wrong so here's some drugs and come back in six months if you're not better." All of a sudden I'm feeling really sad about all the years I lost to celiac disease, and maybe me writting a letter would give someone else several years of their life back. At the very least, it might be somewhat cathartic for me to write.

It's very strange - I've always been so upbeat and positive about my diagnosis. This is the first time I've felt any anger or denial or regret or any negative feeling relating to celiac.