Celiac Disease, questions!

[MindieRose]

I just got my order mailed to me to start the process of testing for celiac disease. As crazy as it sounds, I want it to come back positive. I have been very sick since just before I got pregnant, and with all of the things it could be, this one is the least scary, even if it is inconvenient.
For those that have it, what made you think there was something wrong before you were diagnosed? What were your symptoms?
Also, how hard is it to live gluten free? Do a lot of you find that you have sensitivity to dairy as well?

I don't want to get into too much detail, but whatever is going on has made my life very unpleasent lately and has taken over much of my life. I just want to know whats wrong and work on fixing it.

[Ashley V]

A good friend of mine has it. She cannot eat anything that is man made... basically that leaves meat, vegetables, and fruits. She spent some time one summer working in her dad's pizza shop and she swears on her life she didn't even have one bite of pizza and ended up in the hospital from just working around all that stuff. She's been through some really scary stuff and has been admitted a few different times because of it. When she was diagnosed she said she would literally forget to eat because she was never hungry and lost a ton of weight. The doctors thought she was anorexic but that wasn't the case... she just was never hungry.

[jmdt]

My best friend since for 30 years has it. Yes it is true that you can be lactose intolerant as well. She has learned to live with it. Luckily we have a few health food stores around and she can get the foods she can eat. She eats rice pasta. I have seen her eat pizza that she gets from there. They have a little freezer case and she gets her cravings there. Other wise she has adjusted her diet to accomidate it. Believe me there has been alot more people diagnosed with this than you think. Even restarants have special menu items that are gluten free. Check your supermarket. I know here they have a special section with gluten free items. Do you have a choice...no... so think positive. It is all just an adjustment thing. Good luck and if you want pm me and I will give her your e-mail and she will be more than happy to advise you. Her mom has this and her sister has this too. She has some great gluten free recipes also. Good luck !!

[bella_mia_hairy]

Originally Posted by MindieRose

I just got my order mailed to me to start the process of testing for celiac disease. As crazy as it sounds, I want it to come back positive. I have been very sick since just before I got pregnant, and with all of the things it could be, this one is the least scary, even if it is inconvenient.
For those that have it, what made you think there was something wrong before you were diagnosed? What were your symptoms?
Also, how hard is it to live gluten free? Do a lot of you find that you have sensitivity to dairy as well?

I don't want to get into too much detail, but whatever is going on has made my life very unpleasent lately and has taken over much of my life. I just want to know whats wrong and work on fixing it.

I don't know if I have celiac but I do know I have a gluten intolerance. I have suffered for over 10 yrs of constant near misses having to run to a restroom I was to the point where if I knew I had somewhere to go. I would constantly have to take Imodium ( I should have just bought stock in the company) and needed to know where all the restrooms were located.
Told the dr. and always the same answer just plan out your day! How is that any way to live! He won't test me he said just to process of elimination and using a diary of what i would eat! so I finally pin point that any time i ate anything with wheat is when i would be really sick!

what did you order?

[MauiGirl]

Originally Posted by MindieRose

I just got my order mailed to me to start the process of testing for celiac disease. As crazy as it sounds, I want it to come back positive. I have been very sick since just before I got pregnant, and with all of the things it could be, this one is the least scary, even if it is inconvenient.
For those that have it, what made you think there was something wrong before you were diagnosed? What were your symptoms?
Also, how hard is it to live gluten free? Do a lot of you find that you have sensitivity to dairy as well?

I don't want to get into too much detail, but whatever is going on has made my life very unpleasent lately and has taken over much of my life. I just want to know whats wrong and work on fixing it.

I have a relative with IBD, who was told that the only way to definitively diagnose celiac disease is a biopsy, which can be done during a colonoscopy.

You might want to look into these books if you haven't already:
Amazon.com: Celiac Disease: A Hidden Epidemic...
Amazon.com: The First Year: Celiac Disease and...
Wishing you all the best.

[bella_mia_hairy]

I will not lie a Gluten free diet is hard to get used to. People don't realize all the stuff out there that has wheat or barley mixed into their favorite food products. If you like pasta noodles the closest I have found are at the asian markets their noodles are made from rice not wheat. If you like pizza if you have a Boston's pizzeria they make pretty good GF pizzas. You just have to learn the items you can eat versus the items you can't eat. Betty crocker just came out with a line of GF cakes, cookie and brownie box mixes. Places like Meijer grocery store has a listing of the GF products so does Trader Joe's..

In the end a GF diet comes out far better than the alternative of constantly being sick..

[MindieRose]

I am not looking forward to the inconvenience of the adjustment if that's what it is, but I would rather just feel better.
They ordered just blood tests for now, since I am pregnant they will not do a biopsy.
My moms entire family has almost every symptom of Celiac Disease. They have all been told its just IBS, but my aunt almost died recently because of the anemia caused by it. No one has been tested for Celiacs though Of my 6 kids, all but 1 have symptoms, 5 have terrible gastrointestinal issues and a couple have very bumpy excema like skin. This would just explain so much. I have dealt all my life with many gastrointestinal issues ranging from only "going" once every 1 or 2 weeks, to being horribly ill in the bathroom 10 times a day or more. The past 5 months or so I have spent much of my time in the bathroom and can barely leave the house. It seems very linked to my diet too. When I am mostly eating fruits, veggies, and meat with little to no gluten I feel much better. On top of the inconvenience of the constant bathroom trips, I get such horrible stomach pains with it, and get very dizzy off and on leading up to the next trip to the bathroom. I also have so many things that go with it, whether its caused from, linked to, or causes these issues seems to be controversial though. I have lupus, fibro, an off the charts rheumatiod factor, my teeth enamel has all but disappeared over the past few years despite great dental hygiene (I attributed it to having lots of babies though), my stomach always seems distended (once again, linked to having lots of babies ), the list just goes on.
I thought it was odd that all my babies, which I nursed till they were toddlers and had little to no solids until after a year old, did not have any gastrointestinal problems until they were weaned and eating "regular" food.

I am hoping for a diagnoses and that it will answer a lot of questions for me. This problem, what ever it is, has caused so many problems for years for me and my children, and for generations in my family.

[PiePiper]

My DH has Celiac Disease. He found out about 4 years ago when he had severe diarrhea with blood and alot of discomfort in his stomach with bloating and also vomiting. He was convinced he had cancer. Doctors did a colonoscopy and biopsies and found he had Celiac. At first it was an adjustment to completely change your eating habits. You no longer can eat bread, cereal, pasta, cookies, cake, gravy and there is so many other things that list wheat in their ingrediants in convient foods. You really have to start reading all ingrediants in anything you eat. I go to the health food store and they do have a gluten free section where you can buy your bread, cereal, pasta etc. It's just real expensive. A loaf of bread cost $8. When my DH avoids gluten he feels great but if he eats anything that has gluten it'll makes him really sick.

[jmdt]

Originally Posted by MindieRose

I am not looking forward to the inconvenience of the adjustment if that's what it is, but I would rather just feel better.
They ordered just blood tests for now, since I am pregnant they will not do a biopsy.
My moms entire family has almost every symptom of Celiac Disease. They have all been told its just IBS, but my aunt almost died recently because of the anemia caused by it. No one has been tested for Celiacs though Of my 6 kids, all but 1 have symptoms, 5 have terrible gastrointestinal issues and a couple have very bumpy excema like skin. This would just explain so much. I have dealt all my life with many gastrointestinal issues ranging from only "going" once every 1 or 2 weeks, to being horribly ill in the bathroom 10 times a day or more. The past 5 months or so I have spent much of my time in the bathroom and can barely leave the house. It seems very linked to my diet too. When I am mostly eating fruits, veggies, and meat with little to no gluten I feel much better. On top of the inconvenience of the constant bathroom trips, I get such horrible stomach pains with it, and get very dizzy off and on leading up to the next trip to the bathroom. I also have so many things that go with it, whether its caused from, linked to, or causes these issues seems to be controversial though. I have lupus, fibro, an off the charts rheumatiod factor, my teeth enamel has all but disappeared over the past few years despite great dental hygiene (I attributed it to having lots of babies though), my stomach always seems distended (once again, linked to having lots of babies ), the list just goes on.
I thought it was odd that all my babies, which I nursed till they were toddlers and had little to no solids until after a year old, did not have any gastrointestinal problems until they were weaned and eating "regular" food.

I am hoping for a diagnoses and that it will answer a lot of questions for me. This problem, what ever it is, has caused so many problems for years for me and my children, and for generations in my family.

Just also wanted to mention that my friend was having problems with her son when he was small. Tested for adhd and add. She took him off all gluten and he was better.

[MindieRose]

Originally Posted by jmdt

Just also wanted to mention that my friend was having problems with her son when he was small. Tested for adhd and add. She took him off all gluten and he was better.

I took my 8 year old son off of dairy because I heard that would help with "adhd" type symptoms, which he has some "symptoms" of it, and is lactose intolerant as well. I have suspected gluten issues with him for quite some time, but for some reason, didn't think of it for me...typical mom stuff, thinking of the kids and not myself.

[PiePiper]

Celiac is an hereditary disease so if you do find you have it there is a good chance your children could also have it. Two of my children were tested and even though they didn't have Celiac they were allergic to wheat and have IBS. Celiac might develop later in life so they also eat a gluten free diet.

[MindieRose]

Originally Posted by PiePiper

Celiac is an hereditary disease so if you do find you have it there is a good chance your children could also have it. Two of my children were tested and even though they didn't have Celiac they were allergic to wheat and have IBS. Celiac might develop later in life so they also eat a gluten free diet.

I figure if I test positive, the whole house is going gluten free. Too hard to make special meals for just one or 2 people when I am feeding 8. I know that even if they don't have celiacs, that at least a couple have a lot of food sensitivities so it would just be smarter anyway.