Newbie Here

[Flochick]

I just found this board tonight (though I've known about celiac.com for some weeks now), and I am so glad to have found you all! This journey is a relatively new one for me, but I'd like to share it with you, and any input/advice you can give will be greatly appreciated.

I don't know for sure if I have celiac disease, but after going almost entirely gluten-free now for about three weeks (except for the few times I suspect some gluten was lurking in things I didn't have control over making myself), it seems more and more likely. But it would be good to run my situation by you all and see what you think....

Now that I've researched celiac disease, I realize that some symptoms I've had all my life and have chalked up to bad genes or other factors may well be related to this disease. However, the truly disruptive symptoms did not appear until a year ago (I'm 37). They were primarily all intestinal troubles, mainly this strange kind of diarrhea that I don't remember having before (like with no warning and when it happened it felt like my insides were coming out). This was particularly traumatic since I am a musician and have to sit in one place, on a stage, for up to 2 1/2 hours at a time with no way of getting out without causing a major disruption. There were some concerts I literally sweated through, wondering if I would make it. I was afraid to eat anything at that point except for what I used to eat when I had stomach troubles - the BRAT diet. I went to a doctor who did a series of fecal tests but found absolutely nothing wrong with me. Over time, the diarrhea was less frequent but never really went completely away and I ended up losing 20 pounds in about 3 months time because I was afraid to eat anything. But I did slowly resume trying to eat "regularly" over the summer, and although my BMs were never "normal" it was a bit better. But by this last October, wham! It all came back full force. My sister (who has been diagnosed with IBS for YEARS) thought maybe IBS was my problem and recommended Metamucil. At about the same time, a colleague of mine said my symptoms sounded like it might be celiac disease (she's a celiac) and to try going gluten-free for a few weeks. I tried the Metamucil and going gluten-free at the same time, and after about a week things started to improve. But I made the error of attributing the success to the Metamucil (still thinking I was IBS and not quite understanding much about celiac disease yet). So I plugged along for another few months, and the diarrhea slowly crept back, this time with uncontrollable, offensive gas. I suspected that I had become lactose intolerant, as I had almost immediate reactions after eating dairy at this point. My BMs hadn't been normal in about a year, but now they were WEIRD. Pale, with white spots, sometimes floating. The Metamucil seemed like it had become completely ineffective - I was going WAY over the recommended dose at that point. And with a heavy rehearsal/performance schedule ahead, I was desperate. So that's when I got online and did some serious celiac disease research and made the concerted effort to go gluten-free and dairy-free for at least two weeks and see what happened. The diarrhea went away almost immediately. I was so encouraged by that, I've stayed with it (I'm going into my fourth week now). Just last week, I noticed something that I haven't seen in almost a year - normal BMs. It's so bizarre that something like THAT would become something I'd be happy about, but after a year of so much weirdness, that's exactly how I felt. There's still other foods I react to besides wheat and dairy, but I think those are more garden-variety reactions (like to onions, garlic, beans, etc.) and rarely eat those now. But I know I'm still learning to figure out where gluten is lurking, as I get reactions from something that I assumed was ok but when I looked at the ingredients, it wasn't entirely clear if it was completely gluten-free or not. And since this is all so new to me, it is quite possible I might be sensitive to other foods but haven't yet figured them out. I'm hoping to work with a naturopath a friend recently recommended to try to zoom in more on other foods I might possibly have insensitivity for. Going gluten-free and dairy free has really opened my eyes, and I'm learning more daily. I also have other problems that might be attributable to celiac disease - very bad knees, recurring, sometimes severe eczema (one year the skin on both of my palms peeled off!), and when I was a kid and lost my baby teeth, my adult teeth came in a pale yellow, baffling my mom completely. My dad has had bowel problems and severe psoriasis all his life, and as I said one of my sisters has IBS/spastic bowel/diverticulitis - the more I read about celiac disease, the more it seems like this might be in my family. I'm very reluctant to go off the gluten-free/dairy-free diet right now, especially because I am still very busy with my rehearsal/performance schedule and there's no way I want to go through again what I went through this past year. At any rate, please let me know what you think, or if you have any advice for me. Thanks in advance!!!

[nettiebeads]

You seem to have the classic diarrhea of celiac. That's what sent me to the dr--The pale, frothy, floating and oh so very stinky D!. Continue on with the diet and see if you don't notice improvements in other areas such as your energy levels and what is referred to as brain fog. After three months you might try adding back dairy. When the villi are damaged, the part of the villi that is damaged is the part that makes the enzymes that are needed to digest lactose. But what is so great about celiac is that if it is caught in time, (and it sounds like yours was) that the body immediately begins healing itself as soon as the offending gluten is eliminated.

Check your toiletries and meds for gluten. Be on the lookout for wheat starch, wheat protien,oats or sativa.

Beware of cross-contamination. For me it's washing my hands after I feed the dogs - lots of bad stuff in their food. Or I never use cutlery that has been put on the counter in our kitchen at work - someone is always making toast or a sandwich and hasn't wiped the area down afterwords. It's the little pesky things that will trip you up and drive you crazy at first, but then after awhile it will become second nature.

People and medical professionals will urge you to get the bloodwork and endoscopy. You don't have to, especially since it would require you going back to ingesting huge amounts of gluten for a long period of time. Gluten is poison to your body, and doing the diet challenge is a valid dx tool. That's how I was dx'd 9 years ago and have no desire to do any of the "official" tests. But I am interested in the gene testing just to see what's there.

Listen to your body - that's the best advice of all, I think. It's your health, and you will know the best how to optimize it by listening to your body.

Good luck, keep us posted, and remember, no question is too silly to ask!

Annete

[mouse]

Welcome to the forum. You will find many knowledable people on here that will give you sound advice. The next time your hands break out, you might try to see a dermatologist for a biopsy to check for DH (I can't spell the whole name). If you have DH then you are a Celiac. But being gluten-free helps to clear up the rash. For some it happens fast and for other it can take years. You should worry about cross contamination as just a little particle (ie bread) can take up to a month for your small intestine to heal. Do not use a toaster where regular bread is toasted. Do, not use butter which other people have used to butter their toast. Use a clean knife for whatever you do (assuming you have a roommate or spouse). There are many wonderful gluten-free products out there that even taste good. I feed the Takiyada pasta to my family and they all like it and I am the only one with Celiac. Many people on here are self diagnosed because the doctors had no clue. If your sister is still eating gluten, then she should go in for the Celiac or Gluten Intolerance testing as IBS can be a symptom of the disease. Ask questions on here about the testing as there should be a whole series of blood tests that would need to be done. You have to be eating gluten for several months before the test and some could not make themselves do it after being sick for so long and finally finding relief by going gluten-free. I wish you well and glad you are here.

[Mabiac]

Flochick

Yes, welcome to the site.

It's only my second day on here as well.

Armetta made some excellent points about watching for even minute amounts of gluten.

Another thing you should be careful of on your gluten-free diet is FRIED RICE.

The SoySauce has gluten in it.

I thought I was going gluten free all the while eating Chinese fried rice which aggravated some of my symptoms.

I've not been diagnosed with Celiac's disease or gluten intolerance.

Just like many people on the board I'm diagnosing myself and experimenting.

And watch out for candies like licorice and gummy candies that are also made with wheat!

[Canadian Karen]

Hi Flochick! Welcome to the board!

I sure sounds like celiac to me. There are numerous people on this board who do not have the "official" diagnosis, but have had very positive responses from the gluten free diet and did not want to go back on gluten for the testing.

Any questions you have, just fire away. Believe me, there is not much that we haven't talked about here (there are some great threads that discussed poops in great detail!)

Glad to have you aboard!

Karen

[Flochick]

Wow everyone, thanks for the help! This is all so new to me, any information I can get is so worthwhile. Yes, I think I learned the hard way about the toaster, lol. Now I've cleaned it up and since my husband is asian and isn't a big bread eater, hopefully I won't experience as many cross-contamination problems others have, at least at home. Fortunately, I did learn about the soy sauce from my colleague, and promptly went out and got a bottle of the gluten-free type. I'm having a harder time finding gluten-free oyster sauce which will be a particularly tough sticking point with my husband, as he loves to cook with it, but I'll keep searching!

I've tried to talk to my sister about celiac disease and perhaps the connection to her IBS symptoms. Since none of my family knows anything about celiac disease, I think it will take time for her to come around, and she'll continue to suffer needlessly. I sent her a bunch of websites almost 2 weeks ago, but I don't think she's even opened that email yet. But I guess we all have to go at this our own way and in our own time. Maybe if my health continues to improve so much, she'll come around.

I know I'll have lots more questions as time goes by, but for now I just wanted to say thanks for your help and also for the warm welcome!