SURVIVING CELIAC

Thursday, January 22, 2009

Friday, November 14, 2008

AARON'S HEALTH

Aaron will be going to the allergist on Monday and to the GI on Tuesday. I hope that we can find some good answers. What is you opinion on allergy skin testing versus allergy blood testing? My allergist said blood was more accurate but his says that skin test is. Thanks for any input.

Sunday, October 19, 2008

NOT HAPPY HERE

This gluten free lifestyle is still very hard for me. And now my 16 year old son is having to eat the same way. It is really hard for him to come up with items that he can take to school for lunch. Me- I eat popcorn every day for lunch and sometimes a chicken breast. I however, have access to a kitchen at work and can heat and cook items and store things in the fridge. Aaron can not do these things at school. I worry that if I sent him anything with meat that it will be spoiled by lunch time. He does NOT like any of the gluten free breads for sandwiches. He did take pizza a few times. My sister who works at a Domino's made us some gf crust and put in the big pizza ovens. It was pretty good. He has just resolved to skittles and dr. pepper for lunch everyday and I know this is very bad for him. He is going to a GI doctor soon for more testing. He stays in the bathroom to much and I am afraid he is taking to much imodium. I don't think this is good for him, but it is hard for him to make it thru the day. Any suggestions for kids dealing with Celiac in school would be very helpful. Thanks all!

Friday, June 27, 2008

BEEN AWAY

Sorry, I have been away from this blog for awhile. I plan to get back on track with this soon and be in touch with all my gluten free friends!

Friday, May 23, 2008

WOW! IMPROVEMENT!

I was very shocked to find out how much improvement I have had after my endoscopy. First, the colonoscopy went fine. I had one polyp that was removed but nothing else bad was found. The endoscopy showed NO signs of eosinophil in my esophagus and NO signs of the muscle ring in my esophagus. It is hard to believe that I have had such a drastic change already. I will be going back to gather all the info later next week.
You know, it amazes me how so many auto immune disorders can be a result of the food that we put in our bodies. I watch every episode of mystery diagnosis, diagnosis x and other types of programs. So many medical issues are a result of ones body not able to deal with certain foods. I am so happy that I can find a path to good health just by what I eat. I would hate to have to rely on medications every day.

Monday, May 5, 2008

Fun Stuff- yeah, right

So this is my entire diet for tomorrow. Look familiar to anyone?

Yep, I am going in for an endoscopy and a colonoscopy. The new GI doc wants to have a look and I am still having some unresolved issues. He is very knowledgeable about Celiac and is anxious for any of his patients to give him any new information that they might come across. How great is that! The doctor wants me to teach him something. Well, he said that because I have been gluten free for a while that he might not see severe damage. He said he would really like to see something- you know-for his own desire to learn more. I asked him if he wanted me to eat a bunch of pizza and cereal this week! I was hoping to get a free ticket to eat. He kind of hesitated and then said no. He would not want me to be sick and have to start my healing process all over again. AAWW shucks- no luck for me.

Thursday, May 1, 2008

NEW DOCTOR

I had my first appointment with a new GI doctor today and I have to say it went very well. The office staff were so friendly. The nurse was so attentive and listened to everything I had to say. The doctor was wonderful! They are very knowledgeable on Celiac. I am so pleased! Bad news is I have to have a colonoscopy and endoscopy next week. Oh, well it won't be that bad.

MY JOURNEY TO A CELIAC DIAGNOSIS

As a child I would say that I was healthy. I do know that I was anemic from the time I was small. I had a few nose bleeds and mom says that I would pass out a lot. Other than that I was in excellent health as a child. However, we ate very healthy! We had a garden and grew our own vegetables. We ate fish and duck. We never ate fast food or processed junk. My favorite treat was to go to my grandma's and she had a cookie jar full of oreos. I guess this is where my love of cookies started. I was married and pregnant at a young age. I had no symptoms or health issues during my first two pregnancies except being anemic and low blood pressure. My diet still consisted of only a few choice foods. After my second pregnancy I took a job in a bakery where I made fresh donuts all morning and this was the start of my first stomach issues....My first job was in a fast food restaurant and being as I was not accustomed to fast food, I never ate anything there. Then when I took the bakery job I made dozens of hot donuts each morning. I would eat them like there was no tomorrow. Then I began having the 'attacks'. I would wake up from sleep in a cold sweat. I would feel like I was going to vomit. I felt like something had to go up or down but I could never get any relief. I kept telling myself that I would not eat any more donuts but that did not always work. In 1990 after the stillbirth of my twins, I was diagnosed with asthma. I was very puzzled as to why I would develop this all of a sudden but did my best to try to control it. In 1998 my stomach 'attacks' came back with a vengeance. I would feel like I was going to die. I finally sought out a doctor that said my gallbladder was bad and I had it removed. Of course, I still had problems after that. Also around the same time I had a hysterectomy hoping this would help my anemia. At this time I also became involved in a culinary career. I began cooking for large catering events and my minimalistic taste in food greatly changed. I learned how to love food, how to savor the flavors, how to be brave and taste the unknown. I believe this is when the downfall of my health really began. I believe that my Celiac was starting to rear its ugly head..... During the years when I had expanded my culinary career I had numerous health issues. They all seemed unrelated. I had numerous kidney stones. I had surgery and was told that my blood did not clot.I had immense joint pain and my fingers would swell so bad a night that I could not even make a fist. I had these awful times where I would have diarrhea with very thin stools that would keep me in the bathroom for hours. I was nauseated nearly every day and took way to much Dramamine . I also would do anything I could to get my hands on phenergan. I felt like a druggie sometimes offering to buy it from someone who had just gotten over a stomach virus. I had intense heartburn and would sleep sitting up. One night I went to the emergency room begging for help. I told them that everything I ate made me sick. They treated me like a nut case! On one visit to the doctor I told the nurse the same thing. She was very snooty and told me if all food made me sick why wasn't I losing weight? I would lay in the bathroom floor so sick and just cry and say, I don't want to work in a kitchen any more. Something inside me knew that all this had to do with food. Upon asking my doctor for food allergy testing I was told that they were inaccurate and the best way to know was just to eliminate stuff from my diet and see how I felt. I just gave up and tried to continue my life. I did not even want to see doctors anymore. I just learned to live with all this. And then one and a half years ago new strange symptoms started to appear and there was no avoiding doctors...... About a year and a half ago I had just started a new job. About a month into it I began to feel very tired.My hands were swelling and hurting so bad. In fact all of my joints ached. I felt like I could not even get thru a day. My niece had just gotten over mono so I went to the doctor to make sure I did not have it. She ran some blood work and said my white count was a little high and that my vitamin D was low. She gave me some antibiotics. Over the next few weeks I went to her three times and each time I was given a different antibiotic. I was so tired and weak. She suggested that maybe I had fibromyalgia and checked some things in my blood work. All seemed fine.I had also developed some white spots on my throat but step test was negative. I finally went to the dentist and he said I had a mild abscess and I demanded he pull the tooth. I began to feel a little better. Then a few months later I developed this awful burning itchy rash in the palms of my hands. Back to the doctor. She asked what I had touched or been into. I kept insisting-nothing! She said it was hives and gave me some antihistamines. The hives continued in my hands for 3 months.Then they started to develop on my feet and eventually covered my whole body. My Dr. finally told me to go to a dermatologist. He felt like it was something I was eating. He kept insisting! And I kept insisting that I had not changed anything in my diet. One day the hives changed and they looked like they were in my blood stream (you can see in picture below). I went straight to an urgent care center. They referred me to an allergist. Thank God. I thought the allergist would do some tests, tell me what was causing them and that was it. HA! No way. She felt like I had an autoimmune disorder. She sent me back to the derm. dr. to have a biopsy. The biopsy showed vasculitis and the dermatologist just kept apologizing to me. After all he was the one that said it was a food allergy. Now HE thought it was autoimmune. In the mean time I was having issues with my food sticking when I ate. I would have to throw up a lot to dislodge the food. So I went for an endoscopy and was diagnosed with Eosinophilic Esophagitis. This doctor said that was caused by a food allergy! Dang-I felt like I was going in circles. Back to the allergist who FINALLY did some food testing. Found I was allergic to wheat,barley, eggs, pork, garlic, cinnamon. She said I was not allergic to oats but I insisted I was because oats caused me HUGE stomach discomfort. I think this should have tipped her off but she just said avoid these foods but that I would still have the hives. She said I would probably always have them. So I took it upon myself to see a rheumatoligist. After all I was still having much joint pain and swelling. I just thought that I would bark up a different tree. I have read that untreated RA can cause the hives. Thank God for Dr. Lipsey! She took her time with me, reviewed my entire medical history, ran extensive blood work- even hiv. Within 3 DAYS she called me with an answer. I have CELIAC! She also did a DNA test to confirm. What a journey to this diagnosis! I knew all along food was my enemy! CELIAC-Now What???