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disneymom62

Member Since 23 Jan 2009
Offline Last Active Feb 25 2009 09:51 AM
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Topics I've Started

New Diagnosis - Frustrated, Angy, Sad... Will It Pass?

17 February 2009 - 07:23 PM

First, sorry but I'm whiny tonight. I'm going through a rough patch and trying to find out if my feelings are normal.

I found out about a month ago that I have Celiac disease. I went about it with a positive attitude, planning new menus for my family (husband, self and adult daughter in college); Been eating very carefully, and I've been feeling better - not bloated, using the bathroom every night, no more IBS symptoms; but all of a sudden I'm frustrated! It's tough to find something out to eat in restaurants, seems like I'm eating the same things, tired of having to look at every single label before I eat something. We can't make a dining out choice on the fly because of the thought it seems like I have to go through before i can say "let's go here...", I want a burger with a bun, a sandwich with bread that doesn't taste like particle board, a trip to Taco Bell...

I know it's only been a month - I'm EARLY into this. I know I'm whining. Does it get easier on the family? On me? Do the cravings for off-limits foods pass? Does the frustration and depression pass? Is it normal to feel like you're ruining your family's plans and desires for food? Sometimes I feel like they don't understand, like I'm being a 'party-pooper' so to speak. Like I have to explain every single time I say I can't go here, can't make a certain item, or can't eat this or that. It does get easier, right??

Help - My Symptoms, And Your Opinions/thoughts Please

25 January 2009 - 06:20 PM

I'm new here, and thought I'd ask all of you for your opinions.

Being the daughter of someone with colon cancer (dad had it when he was 46, same age as I am now) I get regular screenings. I have diverticulosis, and struggle with occasional bouts of diverticulitis. About 5 years ago I went to my GP about bouts of severe cramping followed by diarrhea. He chalked it up to a bacteriological infection, put me on antibiotics and sent me on my merry way. I have noticed over time that these became more frequent - from a couple times a year to several times, to once a month, and within the last 4 - 6 months, a good once a week. It became increasingly difficult to eat out with friends or on business, as I never knew when I would be doubled over 30 minutes later then running to the bathroom. My intestines are always in a constant state of gurgle, and I'm constantly fighting constipation then the cramps after some meals, I'm bloated, painful, mucousy and gassy. I fight with insomnia and just being 'tired'. I changed GPs this past fall, and out of frustration, saw her about my "issues". She ran blood for the normal panels for white counts, cholesterol and such, and set me up for an ultrasound on my gallbladder and a visit to my GI doc. The blood came back good except for Vitamin D deficiency and the gallbladder came back clean. In the process of the ultrasound they discovered some growths on my liver for which I've since had a CT scan, and they came back as benign cysts and hemangioma. I also take Synthroid for thyroid issues, post-total abdom hysterectomy a few years ago.

I saw my GI about a month ago at which time he took me off dairy and sent me off for blood testing and then stool sample testing for a couple of things. Getting information out of his office has been a little difficult. Two weeks ago I had my colonoscopy. At that time, he advised me that my blood work for the celiac screen had come back high, and the other tests were fine. He told me that he would have me come back in for an upper GI scope. 'scopy started, Versed didn't work so I actually (albeit very groggily) talked to him a little during the test - between the "ow, owww, OWWWWW"s. Polyp removed, biopsy taken, and he decides right then and there to do the EGD, instead of having me come back in. WHAAAAAAT??? Alllll righty then, I wasn't exactly in a position to say "no", so I go with the flow. After tests are finished, I'm told that three more biopsies taken, call his office that Friday for results, and continue to stay off the dairy.

So, I call his office that Friday, no results back yet. Call again the following Wednesday, leave message for the nurse who calls me Thursday afternoon. Doc is out for the rest of the week, and he hasn't 'signed off' on my test results yet, so she can't tell me what's going on. HUH?? I told her that he'd already told me that blood work came back "high", can she tell me anything? No, she says, but she will say that there is no cancer, (YAY!) that the lab results are 'complicated', and that she can't give me an "official" diagnosis since paperwork has been not signed off, but it appears that the results are indicative of celiac. They'll likely be sending me to a dietician. I (probably too hastily) posted a question here on Friday regarding popcorn and the movies, but I don't want to eat anything I shouldn't! So, I wait for the "official" word from his nurse, who has told me she would review my file with him tomorrow and call me tomorrow (Monday) afternoon.

Am I being to hasty? Do my symptoms sound like what you guys have gone through? I've read that they can vary greatly, but I wonder how I compare to those of you who have been diagnosed (either recently or not-so-recently). I'm not looking for a diagnosis here - but wonder how normal and typical what I've been experiencing is. Is it severe or just minor sounding? What kind of relief can I look for with a change in diet? What important questions should I be asking his office? What should I look for on the lab reports? I'm trying to learn all I can - and any information that you can give me would be greatly appreciated.

Movie Theatre Food? Popcorn? Safe?

23 January 2009 - 01:52 PM

OK, so I'm very new at this... VERY new. I have word from my GI doc after blood test and biopsies that I have Celiac disease. I'm learning what I can't eat, and what I can eat. I am going to the movies with a friend of mine tonight, and don't know if I can eat my customary popcorn, or if I need to pack some gluten-free snack. Will there be anything there I can eat? Help?