Posted 13 September 2005 - 08:09 PM
I'm a sahm now, and I've been eating from snack craving to snack craving for years now. I started taking supplements to combat the GI symptoms I always had, which worked, but I never connected them with the appetite or the hair loss or anything else. But in the last couple weeks since I stopped taking the supplements so that I can be sure they don't interfere with any tests, it's like my appetite just packed its bags and left in the middle of the night. It's just gone. I try to eat, and I do eat a little bit, but given the choice, I'd just rather not. It's not really nausea like I feel like I'm going to vomit. It just kind of feels gross to chew and eat, and it feels gross to have food in my stomach. Now I'm really starting to see what people mean by wondering if some anorexics are undiagnosed celiac. Because I really see what they say about eating feeling gross now. And it's getting worse as the days go by. Today for breakfast I heated up a couple of these frozen food things that are kind of like a poptart, but it's got egg and cheese in it. I cut up half of one for my 20 month old son, and was going to eat the other half of his, plus the other one. I could barely eat the half. My son ate his half, and then was still hungry so I gave him something else too. So today my 20 month old ate more than me for breakfast. And like I said, I'm a snacker, so I'd usually have that much food for breakfast, then an hour or two later eat something else, then an hour or two something else, etc. I didn't eat again today until late afternoon, and it was a small frozen dinner that I only ate about a third of.
So now that I have all day to sit and obsess about it, rather than being too busy to even think about it, it's really freaking me out. My husband even asked me if I ate when he came home yesterday. I'm actually mildly overweight, so I could stand to lose 25 pounds and still not be totally skinny. But it's just the thought of the weight dropping without me trying to do it that is upsetting. It's like I have no control over my own body. And I've been dealing enough with not having control when it comes to the D and the gas. So I'm not happy with my body doing this without my permission, if that makes sense.
I'm also starting to get symptoms like itchy ears and scalp and just general itchiness.
I even tried to eat something sweet, because it *sounded* like it would be good, but once I got it out of the package and could smell it, yuck, but I just made myself eat it and once I took a bite and started chewing, it was so gross.
I'm even wondering if I can even make myself wait to go see the doctor and get a definite diagnosis before I start gluten-free. I feel like I just want to do it because it's driving me up the wall. But then I know there are benefits to having a diagnosis because it's taken more seriously than a self-diagnosis.
I was considering just going gluten-free and then having the genetic testing, but I did a search on it here and I'm seeing some reports of conflicting results. Like someone testing positive on the bloodwork but they don't have either of the genes. Which doesn't make sense at all.
Well, I guess I just needed to get this off my chest.
Posted 13 September 2005 - 09:20 PM
I personally felt it very important to get a diagnosis. Even after the blood test, even after positive response to the gluten-free diet, even knowing my GI was a twerp, there was a little part of me holding out emotionally with "maybe its something else they make a pill for". Having him confirm it and "prescribe" me to be gluten-free for the rest of my life settled that naggling little doubter in my head.
Also lack of appetite can be a serious side effect of other things ( they put me through the testing ringer as a kid, just not for celiac disease), so I think it would be important to eliminate things one at a time.
It takes an enormous amount of patience to wait for doctors or for tests. Especially when you feel like crap. I can't really help there, except for I know it sucks.
You can test positive for gluten intolerance and not have the gene. So you can be gluten intolerant but not celiac disease. Others can explain that better than I can.
Have them do the blood panel, do the biopsy maybe, mine made my doctor fell better, but didn't confirm my diagnosis any more than the blood panel did, though it did find my ulcers, so I suppose it did some good.
I look at my family and know I have the gene. Having the gene doesn't mean you have it, it just means you have the potential for it. So testing for the gene doesn't really rule in a diagnosis, it just rules in a possibility.
I hope some of that helps, I'm starting to ge tired.
Inconclusive Biopsy 7/20/05
gluten-free since 7/23/05
Never felt better.
"So here's us, on the raggedy edge, come a day when there won't be room for naughty men like us to slip about at all. - Malcolm Reynolds"
Posted 14 September 2005 - 08:04 AM
Posted 14 September 2005 - 08:36 AM
-amenorhea (all my life)
-high prolactin levels
-major bloating ("Are you pregnant?")
-possible DH: had the rash on my elbows and scalp (gone now)
-all dairy allergy
-fat in stool sample (no connection was made at the time...I was being tested for something else...When the doctor told me of the fat I replied by saying: "I eat alot of olive oil". DUH!!!!)
-mother is allergic to wheat
-ravenous appetite: I eat for 5 people
-light coloured stool
-pass stool 7 times a day sometimes
-get the hiccups alot (not sure if this is related)
I'm sure there are more that I don't recall at the moment. SIGH.
Posted 14 September 2005 - 03:35 PM
And Skarlet... That's EXACTLY what happened to me, except I had another bout with the no appetite and hair falling out in my late 20s. I met my husband when I was very thin at the end of that last bout. I've gained 60 pounds since then and it's been stuck like concrete except for when I was doing the 6 Week Body Makeover (yep the infomercial) and I lost 30 pounds really easily. And it was mostly 3 or 4 pounds a week, so it was a slow loss, which is always easier to keep off. But then I had a really bad year with my dad dying of cancer and I started not really caring about my weight and gained it all back. So here I am back where I started. I've been meaning to go back on that diet because it worked so well, but I just haven't felt up to it. Interestingly enough though, it's basically - no sugar, no salt, no WHEAT, no dairy and no oil. There are some other things to it, but those are the main things. That's exactly what they talk about on that diet too. That you can get your metabolism so screwed up by going on starvation diets (or unintentional anorexia, it seems) that your body goes into a survival mode because it thinks there's a famine. Then it just holds on to everything it can in the form of fat in order to protect you from the "famine" it thinks you might go through again. If you're interested in looking into that diet more, there's a message board (they call it a Chat Forum) at www.provida.com that is HUGE-MONGOUS where you can ask questions. There are literally hundreds of thousands of posts. It's a free board and anyone can post whether they've bought the program or not. They won't let people post anything like a menu or the exact combinations and portions of food that they recommend for your body type, but you can get a pretty darn good idea what it requires.
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