Stormy

Thanks, I'm looking into that now.. hoping I find something to help!

I've tried all of them, sariesue. I've had multiple psych's look at me and say they don't know what to do with me! (This was before my Celiac diagnosis). Skylark, I'll check out your story tomorrow when I have time to really read it and think about it (I have to work soon). Thanks, for taking the time to post your story and realize that I'm probably in the same boat as you are! Fun times, having docs not know what's going on...

I've been on every med you can come up with for the moods. This is actually the second time they're trying me on Depakote. When I came up positive(ish) for Celiac, it was one of my doctor's hopes that it would help my moods. And it has, a lot! I'm still not really normal though, hence the retry with Depakote... And the resulting chaos with lactose. Eeesh.. I'm hoping that maybe down the line I'll get to be in your shoes and won't be on any meds either, but right now I need something (peace of mind! lol).

I know, I made that mistake last year when I didn't have the money for it- I stopped cold turkey it was... very unpleasant. The problem is, I'm already on the generic version. Supposedly most medications have a minute amount of lactose in it as a binder, and only super-sensitive people react to it. Well.. I've gone right back to having diarrhea, cramping some and having MORE mood problems than before the Depakote. I think I fall into the super-sensitive category here. Also, the manufacturer called and left a message on my phone, apparently there are other "unknown" milk proteins used in the manufacturing of the drug, and therefore there might be Casein in it, too. I don't know if I'm sensitive to Casein, but I avoid it anyway. There is some good news, at least. The extended release version doesn't have any lactose in it, so I can hopefully get switched to that this week. I'm a little tired of the backslide...

Ok, thanks, I'll try them.

So I called the company that makes the Depakote I'm on, and while there's no gluten in it, there's 132.1 mg of lactose. *insert your favorite expletive here* So.. in a 500mg tablet or Depakote, does anyone know if 132.1 mg of lactose is a lot? A little? Not enough to matter or call the doc and throw the pills out the window? UGH.

I wish I had a really good answer for you, I've just learned how to deal, and I eat at home before I go anywhere.. the person that tries to get me to eat something I don't want to, tends to get either an in-depth lesson on Celiac Disease, or a graphic description of what happens when I eat something I shouldn't. Usually gets the pressure off quickly. As for your probiotic.. it may be helping one way but hurting another, if it's got dairy and your body can't tolerate any dairy. At least thats my GUESS, anyway. At this point, I'd call your doctor and discuss it with them, too. Just be clear you don't want any drugs for anxiety, but are looking for maybe a dairy free probiotic, assuming they exist, or an alternative to a probiotic. One thing I did discover when I get really bad anxiety is that exercise tends to help. Anything from a walk around the block at home to a yoga class at the gym or a workout video in your own living room... something to move and give the anxiety a way to be released. Anyway, I hope this helps!! Good luck, this disease is NOT a pleasant thing to be stuck with, but it is something we can live with, it just takes time.

So I'm still having problems with not being quite regular. I went from constant diarrhea and cramps to having mostly normal bowel movements with occasional diarrhea and cramps, occasional completely normal bowel movements after cutting out gluten and dairy. I was wondering about taking a probiotic, but REALLY don't want to eat yogurt (the one time I accidentally had a small amount of parmesan cheese in a salad, the effect was extremely unpleasant!! ugh.) I found these probiotic "pearls", basically a probiotic pill to take that has trace amounts of milk, according to the package. I took one, and had diarrhea and mood swings that day all day. However, saying that, the day I took them turned out to be a couple days before (guys may want to skip this part of the sentence) my period began, which can cause the exact same symptoms. I have no idea if I should be taking it or not! Any suggestions, or does anyone know of a gluten-free probiotic that won't eat a hole in my wallet? lol

That makes a little more sense... wharf.. I tried so hard to make it a food but google really insisted it was just a boat landing. Maybe she does have some odd allergy to something in rice itself. As for probiotics, I may just look for it in pill form from one of the natural stores. I'm really afraid to eat anything that might make stuff worse. I got diagnosed mid or late June, had issues for about a month prior to that and still haven't had two normal bowel movements in a row!! Though something is going right; I stopped losing weight, and have had to start upping the exercise again- I regained 5 of the 10lbs I lost before I hit the gluten free diet. (Would have preferred they stayed lost... lol)

Mommida, I'm not sure what she's thinking. It just seemed really odd but since she's intolerant of gluten I thought maybe she knew something I didn't. Maybe she's just intolerant of rice too, and doesn't realize it. jststric, I'm not sure what kareng is talking about either. Maybe she could clarify what wharf is? I couldn't google anything with it, food-wise.

That's what I thought, thanks! She gave me a huge scare about that last night though; I'm still having a lot of GI problems and have eliminated dairy out of the equation now too, but I still spend WAY too much time in the bathroom...

So I'm at a friend's house during a meeting, and Celiac disease is brought up when a couple people noticed I was only eating the fruit salad. One of my friends is sensitive to gluten too, so she helped describe why I could only eat certain things, but then she made an odd statement. I mentioned one thing I eat a lot of is brown rice, and she looked at me funny and said I must not be sensitive to wheat if I'm eating brown rice. I'm really confused by this, because as far as I know rice doesn't have anything to do with wheat and is gluten-free? PLEASE correct me if I'm wrong!!

So I was going through old medical records and came across some blood work from about 18 months ago. Apparently one of the things they tested me for then was Celiac Disease. According to the blood work everything was within the normal ranges, and I was negative for celiac disease. I was tested around a month or so ago by a different doctor, and while one test came back negative, she said another came back mildly positive (I don't have a copy of this more current blood work to compare with). At the time, I wasn't aware I HAD been tested before, so neither of us were aware of prior negative results. She went ahead and diagnosed me with Celiac Disease, since one test was mildly positive (I can't get a colonoscopy done right now for further testing) and we've been going with that ever since. Has anyone heard of test results like this changing? Is this better evidence that I really do have Celiac disease? I'm not sure what to make of the two different test results. At the moment, I'm still having GI problems (normal stool is rare for me) though the cramps are mostly gone. I stopped eating dairy products a couple of days ago, to see if maybe there's some lactose issues going on now too, but so far there hasn't been any change. Not sure what to do, if anything right now.

I saw in another post someone had mentioned that a fair amount of blood tests come back falsely negative. If going gluten free is helping, I'd say stick with it. The more research I do, the more I find that Celiac Disease can be doing to your body without realizing it. It's kinda scary.

There should definitely be an intro explaining Celiac Disease. I'm not sure if we should put a number on how many words the person has to write, but maybe put a cap on how many they CAN write, just so one story doesn't become a book. Maybe have a section in there on different ways to get the point across without embarrassing yourself or others? Different ways to say that we can't eat gluten or have something with gluten touch our food.

This idea is fantastic! Has anyone started it yet?

Ok, cool. Thanks for the information! Now to go poke around some more.. I was out with friends yesterday (and one of them is gluten sensitive, so they understand ) and actually found out a place we like to eat has a gluten free menu!! That was awesome.

Also, I have glass cutting boards. I assume those are okay still, or should I get rid of them too?

Wow, thanks guys. Definitely have a lot of work ahead of me. Guess I get to throw away the cheese I just bought, too. How long is it before I would notice a difference with myself? When should I start eliminating other food from my diet to see if I'm allergic to them? (This is so strange to me. 2 months ago my nickname was human garbage disposal! I was famous for eating anything with no problems at all! Talk about a change...)

Hi-

I just got diagnosed about a week ago, and am getting really overwhelmed. Technically, I'm not really diagnosed, the doctor just wanted me to go on a Celiac food trial (easier said than done!) because I've been wavering between having semi-normal bowel movements to blow out diarrhea for the past 5 weeks. One blood test came back mildly positive and another came back negative, but I can't get biopsies done yet; I had to quit my job and get another one (too stressful) and I don't have insurance at the moment. On top of the diarrhea, I get these really bad cramps within half an hour or so after I eat (though I'm getting those lately after I eat dairy too, I think. Really hoping I'm not having dairy issues on top of this!), as well as a myriad of random symptoms no one can really find an answer to (brain fogginess, headaches, irritability and depression, anxiety, possible thyroid problems but nothing definite, things like that). One doctor discovered I had had a Vitamin D deficiency, but that was fairly easily corrected with a supplement (I actually had to cut back on the amount at one point, I was taking too much). I've tried to go shopping a couple of times, but each time I go and read the ingredient list, I get so frustrated because I don't know what actually contains gluten and what doesn't, and I've called one company that told me one of their products wasn't made with gluten, but was made on the same counter that products with gluten are made. Does this mean I can eat it, or should I not? Is there some key to shopping, or should I try to just stick to veggies, rice, meat and whatever is in the gluten free aisle? Are sodas/coffee/tea ok? Should I start avoiding dairy as well as gluten? I'm really overwhelmed right now and could really use some help! Thanks.