My Celiac Story

[cchotiner333]

Hello all,

I wanted to write about how amazing my journey into Celiac Disease has been so far. I was diagnosed in the beginning of January of this year. I was a touch saddened by the news because I knew at that moment that I will never be able to enjoy that wonderful wheat filled bread again in my life.

I knew for seven years that something was majorly wrong with my body, which began during my pregnancy with my daughter in 2004. I would mention things to my doctor and they would say it's just from the pregnancy. Later, after the birth of my daughter, I still was afflicted by extreme pain in my stomach, and we are not talking period pain levels, we are talking full blown, something is trying to rip my insides apart, pain. When I ate, I had to have a toilet in my reach fifteen minutes after I started eating or it was coming anyway, toilet or not. I have had a few very embarrassing episodes where that has happened to me. Once, when I was a taxi driver on my way home, right after I left the destination that is four hours from home, it happened! I felt so ashamed. I also had zero energy and I was very depressed.

I continued trying to find out what this was that was killing me, because that is what it felt like, I felt like I was being deprived of nutrients and come to find out, I was. Amazing! I would go to emergency rooms because of the severe pain and they said that there is nothing there. I always got pains in my abdomen right under my rib cage. I felt so dumb because it could not be something serious. In October of last year, I went to the emergency room again and they tried to find out what was wrong. They took an x-ray of my abdomen and the doctor came back and said quite literally, "I was full of crap". My intestines were really full. They put me on stool softeners and told me to make an appointment with a gastroenterologist. Well I followed their advice and did go and see the GI doctor. I explained to her every thing that had been going on and she promised me that she would get to the bottom of this. She really wanted to find a solution to my issues. She ran many tests, starting with serology or blood tests. With that, she found that I had elevated enzyme levels in my thyroid, elevated enzyme levels in my liver and high cholesterol. She did not find anything else though with the blood tests. This puzzles me even today. Why doesn't the disease show up in my blood work? The next step was to get a CT scan of my abdomen. She never said anything about that, so I assume everything looked well. Finally in December I got set up to do a colonoscopy and an endoscopy. It took a month to finally get the results, but I was actually quite pleased that something finally came back and I found out then that I was going to begin a gluten free journey. I am so grateful to that doctor and her not giving up. I will be indebted to her forever.

I do not suffer those pains anymore. I forgot to mention this before, when I first got on the scale in November, I weighed 299 pounds! I know, it is horrifying! I want to scream seeing that number on the screen myself. I have dropped 55 pounds since January! I now weigh in at a still scary but highly motivating 244 pounds. As far as the BMI charts go, I am still obese but not morbidly so any longer. I have been dropping two to three pounds a week, thanks to the bread that is not at all pleasing and all of those other treats that I have enjoyed all my life. I do miss the stuff some times but I think of the misery I was in, I think of the energy that I have now, the bright outlook I have, and I see that is all well worth it.

I hope that I have sparked a good conversation. I look forward to getting to know others stories and making some friends that I can actually relate to. No one around me really gets it. My husband has been trying to starve me this week because I have had a pretty bad chest cold and I haven't had much energy to actually cook something for myself. He goes and buys the kids beef ravioli. I would love to give him a swift kick when he brings gluten into my house. He did not get anything for me, so I ended up eating some potato salad for dinner. How sad can it get?

Something else I forgot to include in my story. My mother in law's mother had Celiac disease, although, when she was diagnosed, it was called Sprue. When I told her about my diagnosis, she said, "It will be okay, you can cheat sometimes, my mother did." I did not argue with her but by the time I told her, I knew that I could never cheat. I have accidentally gotten "poisoned" a few times by not being careful when I eat out, which seems quite impossible to do anymore. I have issues anywhere I seem to go.

All right, I will go. I look forward to hearing from you all!

Cassie

[Di2011]

What an interesting and inspiring rendition of the celiac story.

You are truly very lucky that your GI doc was so thorough. I think you would have died without her persistance and stamina.

I too have lost a lot of weight with gluten free diet. I don't know how bad I was at my worst but probably about 110-115 kilograms ( 240-250 pounds). Today I am about 145 pounds (about 65-70 kilograms) - a very healthy weight for me. I actually struggle to stop losing it now. I now use butter and cream in loads of my cooking - after an almost 40 year lifetime of being overweight I find it hard to get my head around me being a normal weight and "needing" extra calories. I still see me as 'fat' but sometimes get a reflection in a glass window that doesn't look like me.

I still have a long, long time until my DH (dermatitis herpetiformis) is anywhere like manageable ( I've had it head to toe for some time) but I am finally getting my head around the new cooking/eating regime - enjoying lots of garlic and new meats etc.

Family and gluten free is tough. My son also has what I suspect to be DH and I have finally gotten rid of all glutens (just this weekend!). My mum (grandma) needs a lot of convincing that Liam needs to go gluten free and she is a major carer of him around our work/school hours. I think she is VERY slowly coming around to the idea but it has been tough for her.

Have LOTS of frozen stuff in your gluten free freezer so that you can eat regardless of your circumstances. Soup, stew, fried rice and gluten-free pasta with sauce etc so you can eat when you need to, regardless of your condition.

You have given us an amazing reflection of your experience. Can't thank you enough.

[Di2011]

You should also keep an eye on your childrens condition. Do they show any signs of celiac?

[Bubba's Mom]

Hello all,

I wanted to write about how amazing my journey into Celiac Disease has been so far. I was diagnosed in the beginning of January of this year. I was a touch saddened by the news because I knew at that moment that I will never be able to enjoy that wonderful wheat filled bread again in my life.

I knew for seven years that something was majorly wrong with my body, which began during my pregnancy with my daughter in 2004. I would mention things to my doctor and they would say it's just from the pregnancy. Later, after the birth of my daughter, I still was afflicted by extreme pain in my stomach, and we are not talking period pain levels, we are talking full blown, something is trying to rip my insides apart, pain. When I ate, I had to have a toilet in my reach fifteen minutes after I started eating or it was coming anyway, toilet or not. I have had a few very embarrassing episodes where that has happened to me. Once, when I was a taxi driver on my way home, right after I left the destination that is four hours from home, it happened! I felt so ashamed. I also had zero energy and I was very depressed.

I continued trying to find out what this was that was killing me, because that is what it felt like, I felt like I was being deprived of nutrients and come to find out, I was. Amazing! I would go to emergency rooms because of the severe pain and they said that there is nothing there. I always got pains in my abdomen right under my rib cage. I felt so dumb because it could not be something serious. In October of last year, I went to the emergency room again and they tried to find out what was wrong. They took an x-ray of my abdomen and the doctor came back and said quite literally, "I was full of crap". My intestines were really full. They put me on stool softeners and told me to make an appointment with a gastroenterologist. Well I followed their advice and did go and see the GI doctor. I explained to her every thing that had been going on and she promised me that she would get to the bottom of this. She really wanted to find a solution to my issues. She ran many tests, starting with serology or blood tests. With that, she found that I had elevated enzyme levels in my thyroid, elevated enzyme levels in my liver and high cholesterol. She did not find anything else though with the blood tests. This puzzles me even today. Why doesn't the disease show up in my blood work? The next step was to get a CT scan of my abdomen. She never said anything about that, so I assume everything looked well. Finally in December I got set up to do a colonoscopy and an endoscopy. It took a month to finally get the results, but I was actually quite pleased that something finally came back and I found out then that I was going to begin a gluten free journey. I am so grateful to that doctor and her not giving up. I will be indebted to her forever.

I do not suffer those pains anymore. I forgot to mention this before, when I first got on the scale in November, I weighed 299 pounds! I know, it is horrifying! I want to scream seeing that number on the screen myself. I have dropped 55 pounds since January! I now weigh in at a still scary but highly motivating 244 pounds. As far as the BMI charts go, I am still obese but not morbidly so any longer. I have been dropping two to three pounds a week, thanks to the bread that is not at all pleasing and all of those other treats that I have enjoyed all my life. I do miss the stuff some times but I think of the misery I was in, I think of the energy that I have now, the bright outlook I have, and I see that is all well worth it.

I hope that I have sparked a good conversation. I look forward to getting to know others stories and making some friends that I can actually relate to. No one around me really gets it. My husband has been trying to starve me this week because I have had a pretty bad chest cold and I haven't had much energy to actually cook something for myself. He goes and buys the kids beef ravioli. I would love to give him a swift kick when he brings gluten into my house. He did not get anything for me, so I ended up eating some potato salad for dinner. How sad can it get?

Something else I forgot to include in my story. My mother in law's mother had Celiac disease, although, when she was diagnosed, it was called Sprue. When I told her about my diagnosis, she said, "It will be okay, you can cheat sometimes, my mother did." I did not argue with her but by the time I told her, I knew that I could never cheat. I have accidentally gotten "poisoned" a few times by not being careful when I eat out, which seems quite impossible to do anymore. I have issues anywhere I seem to go.

All right, I will go. I look forward to hearing from you all!

Cassie

Thank goodness you finally found a Dr. that would do what was necessary to find out what was going on?

Don't ever cheat! Your MIL is wrong to think that's ok. Has your hubby been tested?

Now, instead of stopping at fast food places when you're out..grocery stores will be your answer. I've stopped in just buy some fruit, mini carrots, or nuts, to nibble when out running errands.

[LuckyAtlas84]

Wow CChotliner333,

You truly has came thru lot of things and I am glad that you finally know what is wrong with your body be off the track.

Yeah, I can understand that it will take some time to convincing entire family to be more willful to try find something for you to eat when you are sick when you are not able to cook for entire family. things will get better within the time.

Glad to hear that you are on the journey to feel better!