I WAS DIAGNOSED ON JUNE 25 2007 AND I ALSO HAVE A SISTER IN VA. THAT HAS HAD IT FOR 10 YRS. AND THAT HAS HELPED ME TO BE ABLE TO KNOW A LITTLE BIT ABOUT , BUT IT IS STILL A LEARNING EXPERIENCE. I WORK IN A SCHOOL CAFETERIA AND I HAVE CHALLENGES EVERYDAY, I HAVE JOINED THE GLUTEN INTOLERANCE GROUP AND I GET INFORMATION ON THE COMPUTER.

Celiac Disease really is a bummer! I was diagnosed ever since I was 5. I am now 13 and wishing I had never been diagnosed...I find myself wanting to cheat on my diet all the time..in school when we make food I can hardly ever eat or participate in cooking any of it. My assistant principal does not believe that I should have a 504 plan..although I bet others do. It really stinks. But my dad always says I am lucky. I think I am, but I am not. I guess it is better than not having strong enough legs to walk or any other handicapped disability. But I still think I am unlucky. Courtney

Warning regarding the 'gluten-free' menu in Outback-Steak Restaurants !!!! Dear All, I just had the most horrible experience a celiac could ever have.
I went to Outback-Steakhouse in Jacksonville/NC and ordered a salad from the gluten-free menu.
It came with small pieces of toasted bread (croûtons), of which I unfortunately ate one, before I noticed what it was....

If they cannot follow the easiest and most obvious rules, how can you trust the rest of the gluten-free meal ??? I will never ever go there - I won't.

Celiac disease is new to me, gluten-free meals are very new to me. This diagnoses is very new to me. Please email me any help you can.

My doctor told me that I might have celiac disease and I need all the help and support I can get. I feel very useless and worthless. I'm really upset over this, but I know God will send me help and support through people who have it and see how they deal with it. So thank God for this web site!

I have been blessed by this website it has helped me feel not so alone though, it is hard to realize the number of people it effects. I have been gluten free one and a half years. My daughter 32 and granddaughter 8 have been gluten-free since June 2007. The scar tissue makes it hard for me to eat normal meals. It is a challenge. Barbara

I read the vast majority of the blogs. I feel so sad because so many of you seem so down. I am 36 yrs. old, have three beautiful children, a wonderful husband, and a huge support system, both in fleshly family and spiritual family. However, this summer was the worst due to my health. I had been very anemic and had to receive iron infusions. In May, I thought I needed another one (just received one in January), but hemotologist said blood count was fine. I decided to keep track of my severe joint pain and fatigue. I decided to make an appointment for October to see my doctor. I knew that I either had CFS/Fibromyalgia or rheumatoid arthritis. I was in so much pain and couldn't keep up with my children, my house, or my job (I have my own successful house cleaning business...it's my passion). I went to see my doctor and she decided to run some tests and thought it could be celiac. The results came back positive. I love my doctor...she was on it! I immediately ran to the bookstore and obtained 'Living Gluten-Free for Dummies' (love it!! If you don't have it...BUY IT!) and came to this website (love it!! A visit a day keeps you focused!), started a gluten-free diet, and started doing LOTS of research. Why do I feel sad? I feel so bad that so many of you are so down. I was so happy to find out that there was a reason why I was feeling so miserable. I was so thankful after a week when I had ALL of my energy back (and then some), lost all of the intense pain I was feeling, and had back the desire to laugh and skip about. To know that all I have to do is EAT properly and I will be fine! I want to FEEL good. Don't get me wrong...I had a few days of 'OMG, are you KIDDING me?!' But, then I decided to pull up my bootstraps and deal with it. Courtney, you are 13, I cannot even imagine what you are going through, because my daughter is 13. Your age is such a difficult age and I am so sorry that you feel like you want to cheat. But, please remember that you will only harm yourself and the gift of life that you have been given. It's not easy to see the forest through the trees. But, remember, you will end up being so much more healthy than your classmates, who in a number of years will be very unhealthy due to their lack of proper nutrition (trust me on this one) and lack of proper choices. You CAN do it...stand firm with your resolve to be physically and mentally healthy. We all have choices to make in our lives. We can either pull out the 'I'm a victim' card or think about the awesome advantages we possess. It is so easy to feel low. But each of you have so much strength...it's obvious, because you took the time to write a bit about yourselves. I wish you all the very best in your endeavor to remain gluten-free.

I was diagnosed about two years ago with celiac disease. What a blessing to find out. I have been treated most of my life with IBS syndrome. The diarrhea and the gas is awful. I am a single person and its very hard for me to go out and enjoy myself because I never know how I am going to be from one minute to the next. I cannot tolerate too many medications to help this matter. My sister was diagnosed first but she doesn't seem to have it as bad as me.


I have a teenage daughter who probably has it also. Stomach problems run in my family. I have a pretty good outlook because what else can we do. I'm with Karen who says I want to be skinny. I am very thin except for my stomach. I have tried so many diets but now its very hard to find the correct food. I also am looking for a good bread that doesn't cost $6.00 and also a good diet that works. I am also looking for a single group with people who have the same conditions as myself.

LISTEN UP. I'm 34 yrs. old, been diagnosed with anemia then not, been laughed at for being at the emergency room twice, been a dead beat (extreme lethargy),look very skinny, (lowest 104, now 112) at 5'3', formerly age 30 soccer mom who played forward, but have been thinking I have chronic fatigue syndrome, allergies to everything known to man, aches, short stress levels, excema, gaunt pale face, rough skin, skin over muscle - no fat, profuse sweating (hyperhydrosis), jaw pain, stomach cramping every morning, dizziness and had my first seizure 2 wks. ago. I tried a gluten-free diet by fate just to feel better and suddenly started learning more about celiac disease through Dr. Oz and as all of this was happening, my body started having unbelievable energy, my husband started feeling FLESH on me!, my libido turned way on, everything got better except the dermatitis which I read is supposed to subside eventually. The only bad thing is: I have to go back and eat normally again so that all the tests in a week will be right. I already began this Thanksgiving - Boo Hoo. I'll take a diagnosis that is a cure any day. The moral of this story is: Be happy, it will get worse over time if you don't treat it.

Hey Karen,
You could be my friend and I know how you feel, my hubby was the same way--try the remedy I just posted. Hang in there it does get better :) I had those same blisters on one foot and hubby and sons' do too all the same foot lol was told it wasn't DH until my gastro doc confirmed it and now since being gluten free for 1 year ours are all gone. One son had them on his knees as well so it gets better just have hope :)

Good reference

I was diagnosed in 2005 and my sister has had celiac for about 20 yrs. She never understood what is really was until now and is very ill with other things due to this.


I am OK with the diet but find it hard to eat out. It gets boring to order the same old things. We went on a cruise and they had very little I could eat due to the rich sauces and all. I wish there were a local support group in my community so we could share experiences and help each other deal with this.

Several years ago I was extremely sick with diarrhea and stomach problems one test indicated was about 90% gluten sensitive. Because of everything that was wrong with my stomach with no answers I did not think too much about it, but I did cut out wheat bread. I now eat only potato bread and that does not bother me. I am also a vegan vegetarian but do cheese and soy milk. If I would be a little more careful I am sure I would feel better. The doctors never seemed that concern about it.

Thank you all for your input.
Elaine

Hi! My name is Amelia and I am 8 years old. I was diagnosed at 3 1/2 years old and have been Gluten Free ever since. I hate having Celiac Disease. I like to bake Gluten Free foods with my Mom. Whenever someone has something to eat that I cannot eat, it is very frustrating. Even if I have the same thing in Gluten Free I still feel a little weird. I am looking for other kids to talk to like me. Thanks, Amelia.

I am a 63 year old woman with self-diagnosed Celiac Disease which I call a body condition, rather than a disease. No doctor ever attempted to find out why a marshmallow made me deathly ill or why I developed flu symptoms when I drank Mug root beer. I found my symptoms by accident while searching the Merc Manual for something else. An elimination diet set me free from chronic illness early enough to prevent me from developing the end of life symptoms/diseases related to bones and nerves and muscles. I was in touch with Ron Hoggan when I developed Trigeminal Neuralgia after an accidental consumption of gluten and lost touch with him. After the small intestine healed, it was no longer necessary to take the anti-seizure medicine, just as I promised the Neurologist. It has been about 8 years since that episode and I only keep a sample of the medicine on hand in case of another accidental exposure. Experimentally, there is a direct relationship between the gluten and the nerve disorder. I am not at all deprived because there is one tree in my Garden of Eden that I can't eat from because, in the day I eat thereof, I will die. Thanks for reading, Yvonne

To # 31 eat sushi, all kidding aside, see a good nutritionist, who would never advise anyone to eat sushi. I've had celiac since 1996 and when I moved from NY to FL in 2000, I found a doctor there who told me I could introduce gluten back into my system after 7 years, so I did, no problems immediately, it took 3 years and me moving back to NY to find out how wrong that doctor was, ugh! Anyway, I am trying to get a new business off the ground, It's a cupcake small pasty shoppe that offers gluten free products as well as regular stuff. I look around at other people eating pizza and then I see people in wheelchairs breathing through a tube. I don't feel sorry for myself at all, I'm an adult, but I think if you have kids, you and you alone need to educate their school. Look, they took peanut butter out of most schools because of all of the kids with allergies to them--because they were educated. Stand up for your kids, spread the word so that when you say you have celiac people know what the heck you are talking about!!!

I am pretty convinced I have Celiac. I have had GI issues for as long as I can remember. I think I have been tested for everything out there! Nothing has turned up yet but I am still miserable. My pants don't fit. I have pains in my small intestine, I am in the bathroom every five minutes. My moods are completely erratic and I feel like I have the flu (achey). I am a second year nursing student with a previous degree in biology so I am pretty educated on many of the diseases that I have been tested for and I have a hard time swallowing what the doctor's tell me; 'Its IBS, Its stress, You don't handle your emotions well'. Can I really be a hypochondriac? Can my 'head' really make me feel this bad? I am seeing a gastroenterologist next week. I am nervous because when I bring Celiac up to my doctors, they scoff at me. How do I approach this doctor? It also scares me that so many have said that the tests can come back negative. I don't want to be misdiagnosed again. Thank you for your help

My son was diagnosed with celiac disease at age 6, after suffering for years from sporadic stomach pains and diarrhea. He is also diabetic, so mealtimes were a challenge at first. Now he is 19, and healthy as can be. It was hard for me to watch him go to university in another city, as I worried about his gluten-free diet. I remembered, though, that he could order food on-line if he got low on supplies. I just order him a care parcel to put my mind at ease.

I was diagnosed 3 weeks ago at age 46. I have not had many of the stomach or intestinal symptoms but 'fybromyalgia' symptoms and brain chemical issues.