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What type of tests did you have to confirm that it was Celiac?
Did it take a long time to get the correct diagnosis?
Thanks!
My father had celiac disease way back in the 70's when they didn't even have this technical name "celiac". It wasn't until the 90's when he started feeling really sick that it was diagnosed by blood tests. If anyone has this disease, PLEASE listen to your doctor and stay on this diet. DO NOT CHEAT, even if you don't feel sick from something you shouldn't have eaten. My dad was told back in the 70's just lay off the wheat flour and when you feel better, you can go back to your normal eating habits which of course was the worse thing he ever did. Back then they didn't know that you need to stay on this diet because doctors just didn't know much about this disease. Apparently more and more people are being diagnosed with this disease and doctors are much more knowledgeable about it today. I have done a lot of research on this disease to try to help my day and what I have learned is for people with celiac, your body reacts to wheat and gluten as if it were a poison to your body. I am not trying to scare anyone here, just informing and stressing if you have celiac, you need to stay on this "no wheat no gluten diet" FOREVER because if you don't, it can turn into something very serious.
UKlady, have you been healed of celiac of do you just maintain it?
nope its just maintianed through the gluten free jazz >>> but if i do accidentally eat some gluten by mistake > it kills me, and im ill for like days afterwards !!!! but u do find u become a very resourceful when cooking and i have tried out so many more recepies than i would have done before, plus coeliac uk produce this book which is a gluten bible, and it basically tells you all the products in the major supermarkets and fast food restaurants which are gluten free
Many people with gluten intolerance, or eggs, or lactose intolerance, or a cluster of low-grade food allergies have celiac.
Especially susceptible are folks of English/Scottish descent, since this is a genetic disease.
I finally convinced my wife to go onto an elimination diet, and then re-introduce one food group at a time, in small quantities. After being gluten free for three weeks, a small slice of bread almost sent her into anaphylactic shock. It was rather obvious at that point that she had some serious internal issues which all the doctors had missed.
I think I am going to try this as I am so miserable and cannot wait for a Dr. to figure it out.
My wife has this. She was very, very sick for years. Always in pain, always miserable and sick. ER visits due to unexplained stomach cramps with her literally crying out in pain. It was interfering with her ability to work. Doctor after doctor accomplished nothing but make us poorer and the doctors richer.
Well of all things, during a gyno visit, it was brought up and it was suggested she see a gastroenterologist. Blood tests came back positive. Next up was the biopsy. A very definite positive. This doc was great. She showed us several pictures take during the endoscopy. A normal GI tract has lots of villi and little folds in it. Hers was smooth as silk - nearly all villi were damaged! Her case was severe. She was also suffering from malnutrition as a result of her system not having he ability to absorb properly due to the extensive villi damage. Stuff was passing right through her and not supplying nutrients. During this time she had weight fluctuations, hair loss, constant nausea, severe muscle cramps after walking just a few feet (potassium deficiency), and on and on. Suddenly, with this diagnosis it made sense.
It has been a complete 'lifestyle' change to have to be on a gluten free diet. It took about 6 months for her to recover once going on the diet. The first year was extremely difficult for her, as nearly all her favorite foods contain gluten. Lots of tears of frustration were shed in those times. It was horrible seeing her go through this: having to give one of lifes pleasures, her favorite foods for the remainder of her life. I never would have thought how devastating it could be to make that change.
To make things easier, our whole family tends to followthe diet when we eat together, ie when I cook dinner, we all get the gluten free meal if she's home from work. We'll occasionally fend for ourselves, but our family as a whole tend to follow her diet to make it easier on her. And it's not easy! We have to cook a lot of things from scratch. Gluten free products are starting to become more widely available, but it's still sporadic and expensive! We have become expert ingredient/label readers. We've learned all the sneaky and misleading words that could pose a gluten risk, ie the all to common 'modified food starch'.
Eating out is a serious pain. We ask for gluten free items, and 99% of the time get blank stares. So from there we have to ask if their is any wheat based ingredients - most of the time it's a guess on their part, which is too risky. So we very, very rarely eat out. There are few places with gluten free items or menus, however. If she eats something 'contaminated', she'll know it. She will get very ill within an hour, and will remain so for a few days. The first year was filled with lots of these episodes as we figured out what was ok and not ok.
Now it's been about 5 years, and she is doing great. But it's still a challenge, and not a day goes by she wants to give it up and give in to the normal food. But she knows she'll regret it. I do my best to support her and make sure to watch for problem foods. I'm always looking up new recipes to try, and I focus on making sure we still eat the same meals together at home to keep her from feeling left out.
But I'm so glad she got diagnosed, she's back to her normal and energetic self. That doctor was a godsend!
I'm waiting now for confirmation of my celiac disease tests. Willing to bet I have it, especially since a ND told me several years ago I'm gluten intolerant. Understanding the importantance of not ingesting *anything* with a speck of gluten in it is a super challenge. Even toothpastes, lipsticks, and lip balms can contain gluten! You mentioned you know the MISLEADING INGREDIENTS ON FOOD LABELS which indicate gluten. I just discovered a HUGE list of ingredients on Celiac. com. It also states that even some of the food colorings and flavoring can contain gluten! Avoiding all gluten is a daunting task.
[quote=11thHour;5173918]My wife has this. She was very, very sick for years. Always in pain, always miserable and sick. ER visits due to unexplained stomach cramps with her literally crying out in pain. It was interfering with her ability to work. Doctor after doctor accomplished nothing but make us poorer and the doctors richer.(TEXT DELETED) nsive! We have become expert ingredient/label readers. We've learned all the sneaky and misleading words that could pose a gluten risk, ie the all to common 'modified food starch'.
Last edited by Bestemor; 09-12-2009 at 10:54 AM..
Reason: Discovered additional info online to share
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