Scared - Biopsy Next Week

[jenngolightly]

I'm 37.

I was diagnosed with Osteoporosis 2 months ago - have low bone mass and many fractures over the last several years. My (wonderful) new family practitioner consulted with an endocrinologist because my doc isn't an expert in premenopausal osteo. They did a blood workup including a celiac test (she said it was standard for people my age with osteo). The endocrinologist suggested an obscene amount of vitamin D (50,000 iu's per DAY for 4 weeks) because my D was so low, and then to start Boniva after the vitamin D course. My celiac test came back negative, but I have ongoing anemia and many of my other vitamins and minerals were low. I cheated and took the vit d every other day because it made me sick. the iron is making me sick, too.

Well I went back to my doc to recheck the vit D, iron, and other levels. Vitamin D okay (who wouldn't be after that much d?), but others were still low. I threw a hissy-fit about the Boniva because of its notoriety of giving stomach problems. I've had severe gerd for years and can't eat much without going into gastric-hell.

I'm lactose intolerant as well.

My doc perked up and said, "You must really feel bad!" I've been on several GERD meds, with little relief. So she referred me to a GI doc for dyspepsia.

I saw the GI doc on Monday, hoping he'd find an ulcer and fix me up. Instead, he took my history and listened to all my complaints and illnesses over the last 20 years, and looked in the computer - he checked my records going back to 1998! He said, "Looks like celiac. Come back next week and we'll do a biopsy. I should be able to tell you something right away."

Now I'm freaked out.

I'm teetering between relief that there may be an answer to all my health problems, and petrified because celiac is such a huge lifestyle change and I'm a really picky eater.

How do I stay off the internet, worrying about the diagnosis, and calm down?

Thanks in advance for your support.

Jenn

[par18]

Hi,

It would be hard for anyone not to worry. If your condition does turn out to be Celiac you can look foward to feeling better once you go on the diet. I'm sure most people were picky at some time or another in their life so you are not alone. The important thing is that awareness is increasing every day and also your choices as far as gluten-free products and dining out options. I cannot imagine how difficult it must have been for people 5,10,15 years or more ago who found out about this condition and had no one to communicate with. Basically this website is a 24/7 support group and any question or concern can be addressed and hopefully answered in a timely manner. I certainly cannot tell you not to worry but try as best you can to consider what your options are one way or the other with the results of the biopsy. I was told by my family doctor that of all the things I could have had wrong with me before my Dx this was one of the best things because it is treatable with the diet and almost everyone recovers. People can adjust to almost anything if they try and I don't see someone like you being any different. Good luck and I hope this helps.

Tom

[WW340]

Don't get too worried. While it is a huge lifestyle change, there are so many benefits that you will find it is totally worth it. It is really more of an inconvenience than a tragedy.

I have been gluten free since the end of January. It is very difficult in the beginning because there is such a learning curve. However, after the first few months my husband and I have really enjoyed our food. He eats gluten free with me and only has his own cereal, crackers and sometimes bread. My husband and son both have no problem with the gluten free things I make now (not so much the first month or 2 lol).

We have had a lot of fun experimenting with cookies, cakes, pies, pizza dough and gluten free breads. Granted it was frustrating in the beginning, but no more.

My husband says we have the best dinners we have ever had, and it is all gluten free. He thinks I am a much better cook now, when the truth is it is much easier to cook the way I do now.

We miss eating out to some extent, but our credit card bills are much less (we used to eat out more than we ate at home), and we eat much healthier now. I pack my food with me and can go and do what ever I want to do. I do know a few good safe places where I can eat and stick with those.

I also think this is a great diet for picky eaters. You have a perfect excuse for eating only what you like to eat. You will find things you enjoy eating and you will feel so much better.

[jenngolightly]

Tom - thank you for your response. It's helpful to know that there is a variety of food available, and that eating out is still an option. - Jenn

[jenngolightly]

WW340 - Like you used to, we eat out a lot. I hate to cook. But it sounds like you are handling it well and I'm sure I'd be fine after a while. I went cold turkey on caffeine, alcohol, red meat, and dairy (at different times and because they all made me feel ill), so I suppose I could handle this, too.

Thank you for your reply. I'm trying not to fret because I may or may not have Celiac, but I tend to get obsessive about this kind of thing. - Jenn

[sickchick]

Good luck Jenn, you are in the right place

[jenngolightly]

My endoscopy is tomorrow and I'm terribly anxious.

Although I've tried, I've failed to be nonchalant about it all. I've obsessed about my symptoms and the possibilities of feeling so much better if I have celiac and go on the gluten-free diet. I've gone to a ton of websites and read lots of postings on this site. I feel like I know this disorder inside-and-out. I'll be (maybe) disappointed if I DON'T have celiac!

Fretting has probably aggravated my symptoms, but I've been cramming a more than usual amount of gluten down my throat just to make sure my test is as legitimate as possible.

I'm most nervous about not being able to drink anything past midnight. I've got no saliva because of the side-effect of a med I take, and my cotton-mouth and dry throat will be terribly uncomfortable. Not sure what I'll do about that.

Anxious... scared... nervous tummy...

Jenn

[~alex~]

When my mouth was really dry before my scopes I swished ice cold water in my mouth a bunch of times and then spit it out. It takes a lot of will power to not swallow the water but it's a lifesaver when your mouth is so dry.

Watching a bunch of your favourite movies tonight and tomorrow morning before the scope might help distract you from how hungry/thirsty/anxious you are. It usually works pretty well for me!

[jenngolightly]

Alex,

Ice water's a good idea...I'll have to bend over the sink so I'm less tempted to swallow. :-) I also thought I'd try chewing gum. Sometimes that helps activate the saliva glands.

I've been thinking that I should binge on all my favorite glutenous food tonight just in case I'm put on the gluten-free diet tomorrow. :-)

Thanks for the suggestion.

Jenn

[jenngolightly]

Biopsy done!

I'm such a baby. :-) I had my husband drop me off at the hospital and go home (he was making me MORE nervous). I sat in the lobby and cried for 10 minutes before heading to the clinic. I thught I had pulled myself together, but as soon as I checked in, I started bawling again. I know... I know... lots of people have this done every day, but I was so scared.

I would have vomitted, except I haven't eaten in 18 hours. :-)

Pretty uneventful except they tried giving me benedryll via the IV and my arm was on fire! There were ligiture marks up and down my arm and I was in pain so they had to flush that and give me extra pain meds before the procedure just to get me back in shape to do the endoscopy. No more IV benedryll for me.

I was alert for the endoscopy, I think the benedryll issue kept me from going completely under. But they covered my eyes so "stuff" wouldn't get in them.

Overall, I'm healthy! no cancer. no ulcers... I'm thrilled.

Dr. said I have some flattened villi. He took biopsies and said I'd get the results in 2 weeks.

I'm not sure what that means yet. Have to go look that up now.

Thanks for your support. It wasn't aweful, but I don't want to do it again.

Jenn