Oh Ugg....

[Nantzie]

I have been off most of the supplements I had been taking. I figured out I might be celiac about a week ago and my first doctor appt is Oct 4th. I had been able to stay ahead of most of my symptoms with the supplements, but if I ever went off them, they'd start up again after just a couple days. Which is why I was always researching to try and figure out what was causing it, because I know just chasing symptoms isn't solving anything.

Anyway, I've been off most of it for a week, which is the longest time in the last like 7-8 years. And I am so miserable. I'm having a hard time thinking. I've got a low-level headache. I'm kind of just achy all over. My appetite is almost non-existant. Even the thought of food is just gross. I eat a couple times a day just because I know I have to. Try to get in some protein for energy, plus keeping up the gluten for the tests I need to have. And today was the worst. I'm starting to notice my hair coming out. Not a whole bunch, but way more than normal.

My hair coming out was one of the symptoms I had when I had a quick 25 pound weight loss 7 or 8 years ago. At the time I had a huge amount of stress (ended up escaping an abusive relationship and was working 16 hour days) and so the weight loss and the hair loss totally made sense as a stress reaction. So I never even thought about it being anything I needed to see the doctor for. I ended up just going the alternative medicine route and had a lot of symptom-treating success.

But anyway, I'm kind of freaked out. Even though I realized a week ago that this was probably what I had, the appetite going away along with the hair loss is just making it more real. And the fact that it happened so quickly is scary.

Nancy

[Guest DanceswithWolves]

You may have malabsorbtion issues.

You're body is not getting the nutirents and proteins it needs. I've been having the same problem. Hair falls out, or grows outward in crooked,wild strands. Also, my nails were real brittle and had white flakes.

I went to my Gastro doctor for the first time. He pulled up my test results on my blood work and told me that I don't have celiac disease, I have IBS. Whatever. I told him back that from what I've read and heard I have to be eating gluten foods for at least 3 months before a test. He then tells me to go ahead and eat whatever I want to get my weight back up and not to worry so much about what I'm eating.

He asked me quite a few phycological questions too, so I guess that's where this is all heading next. Great.

I can understand that your body does need some fat on it to defend itself. I've been having really bad chills in my hands and feet at times.

[Rachel--24]

If you did have Celiac and malabsorption the supplements could've been helping you with some of the symptoms. Why did you stop taking them...is it for testing purposes? I'm not taking any supplements right now except for enzymes....if I get alot of gluten in me my hair really starts to fall out and my skin gets dry....along with alot of other bad stuff.

[Nantzie]

Yea, I've got cold hands and feet too. And I'm always either too hot or too cold.

I was a medical transcriptionist for a few years (that was what I was doing working 16 hour days) and there was one doctor in one of the groups who, every time a patient came in with a written list of symptoms or problems, rather than just telling the doctor, he recommended that they be evaluated by a psychologist for Obsessive Compulsive Disorder. He was really trying to be helpful and meant well, but not everyone who comes in with a post-it note is OCD ya know?

That's one of the bad things about working as office staff in a medical office, AND now I'm seeing it's also one of the bad things about having a disease that isn't well-understood yet. You realize that doctors don't know everything and they're just people trying to do the best they know how to do. That realization is kind of like when you find out that Santa isn't real, or that you're parents don't have all the answers. It just kind of bursts your bubble.

I've typed up my entire medical history for my doctor's appt in Oct. It's like 5 pages. If she's anything like that doctor I worked with, she'll lock me up and throw away the key. But if I don't, I'll totally go "brain fog" and not remember to tell her about something. Even when I was typing it up, it wasn't until I had it almost finished that I realized that I had completely forgotten to mention that I had to have an appendectomy. You'd think a person would remember that about their own life... Plus, they never give you enough time or enough room on those forms they have you fill out.

Yep, I did stop taking the supplements for testing purposes. I knew that I was supressing a lot of the symptoms by taking the supplements, and I wanted to give her an accurate picture of my health without them. And if it ends up I don't have celiac specifically, but have some other kind of problem causing malabsorption, I want to make sure I'm not messing up any other test results that might show something. Right now, all I'm taking is digestive enzymes and St. John's Wort (for depression). I was thinking about even stopping the digestive enzymes a week or two before the appointment. But I'm not sure I'm brave enough to go into the doctor's office with all of those other people and have gas problems. I think I'd die of embarassment....

I'm just so glad I found this board. It's nice to be able to talk about all the awful stuff with people who understand.

Nancy