katyd1d

Wow. I am waiting for blood test results (and have already gone gluten free for maybe 2 weeks, with some significant improvements in GI symptoms, but not cured yet-- waiting on immodium to kick in right now before going shopping), but since I've been "sick" (become quickly miserable for the last six months), my hair has been falling out too. I don't see any thin spots yet, but I'm shedding hair like crazy all night and day. I'm gotten very gentle when I brush it! I didn't realize this could be another symptom.

My shampoo doesn't say "wheat" but it does have many paragraphs of words I can't pronounce-- I think I'll go to the health food store and switch to a brand that actually calls itself gluten free.

clarkje20: I have developed a lot of fear since I've been feeling this way, and am really down on my appearance. Even though I've lost a bunch of weight I needed to lose, it's been in a scary way, and I can't enjoy the smaller sizes of clothes like I would if this was a result of healthy habits. I also feel like I LOOK sick, like my face looks drawn, dark circles under my eyes, my hair more brittle, and just gross all over. I am trying to do everything I can to find healthy sources of nutrition, extra sleep, exercise, etc., and this is HARD STUFF. I spend a lot of time on these boards, looking for the posts of people who have this, who have gotten control of it, and who seem to be doing better now, and that's what really helps me.

Those of you who feel better, please keep saying so! I've had a lot of frustration and fear, and it helps.

(Sorry to go a bit off topic!)

I live in Atlanta, and off Buford highway, there is an amazing smorgasboard of restaurants with delicious traditional Asian foods, but not a lot of English. They have picture menus for us monolinguals to point at, but I don't know where to start a conversation about gluten.

I'm going to print and take with me the language cards, but in addition to that, does anyone know which dishes tend to be safer, and which are more dangerous? I love spicy seafood and seaweed dishes, and don't mind aiming for rice and avoiding rice noodles.

Anyone know about Korean? There is a wonderful 24 hour Korean spa (family friendly place based on traditional Korean bathhouses) where I love to hang out for hours. I get hungry, though, between the saunas, but there is a heavy language barrier and I haven't been able to verify that anything is gluten free. I'll find and print a card to take with me, but anyone know the safer and more dangerous dishes?

Congratulations on such a fortuitous discovery! It's maybe a strange thing to celebrate, but valuable just the same.

I am constantly looking for silver linings (how nice it will be to have a diagnosis if I have Celiac, and how much healthier I will eat, if I turn out to really have it, which might get me into the healthier lifestyle I've been meaning to follow). But your silver lining (no diagnosis, but here, get rescued from the deadly threat you didn't know about) is super shiny!

I'm so sorry! Poor little guy. It sounds like you've got all the confirmation the doctor should want!

Thanks for the head's up on Quaker-- that is what I was eating. I got the Lundberg brand now, which is fine, but so crumbly (about a whole rice cake worth of crumbles left in the bag)! But I'm glad to know that seaweed flavor rice cakes exist. I may not get them again, but the universe is a fuller place for having them (yuck)!

They haven't mailed me the results, but I see the doctor in two weeks for the blood tests. I realize that the thing that matters most, whatever the blood test shows, is how I feel (since it's possible to be gluten intolerant without being celiac). If I find something to make me feel better, I will be extremely thankful-- I can't even begin to say! So far, my symptoms are reduced, but I don't know if that's because I'm really feeling better or because I just WANT to feel better. They're not gone.

I am glad to say I am only taking half of the stomach pills (hyoscyamine) that I was taking a few weeks ago! I take them when I feel cramps/pain, which is noticeably reduced. I also am having WAY less diarrhea!!!

As for the biopsy, I will ask when I see the doctor, but I believe they just took one (two samples from my large intestine, to make sure there was nothing wrong with it, and one from the entrance to the small intestine). At least I got the color photos of my colon! They were checking it for evidence of Crohn's disease, cancer, colitis, etc., and the goal of the colonoscopy wasn't to get the small intestine biopsy. However, I talked briefly to the doctor before the procedure started, and based on my symptoms, she said that Celiac was the next thing to start checking for (since the colon was fine). I guess she'll tell me if she thinks it would be worthwhile to go in from the other direction (top down instead of bottom up) and really check the small intestine out!

First caveat-- I am still waiting to see if I have Celiac (waiting on blood test, started gluten-free after the blood test and too soon to know if it helps). However, I did Atkins for two years, and can comment on that.

I lost a lot of weight, and felt really good. My cholesterol profile improved dramatically, even with all the red meat! Also, as I lost weight, working out was more fun, so I did that more, and am sure it helped.

The downside-- it is hard to eat enough salad and green veggies to get the fiber you need. When I got busy and couldn't keep up, I didn't feel so great. You have got to get the greens.

The bigger downside-- bad breath. I was fine with it for a while, but then after a big breakup and a decision to get out there and date again, I didn't want the nasty breath anymore. I was also stressed and really, really wanted some potatoes.

So, I gained it all back. Which I understand is common with any diet-- you go off, and you go nuts. That was several years ago.

I've lost the weight again since I've been having what I call my "tummy trouble" over the last several months, which may turn out to be celiac disease (really kind of hoping it is, so I know WHAT is giving me problems and how to address it).

So this comment may or may not give you info on a celiac on Atkins, but at least that's my experience with Atkins. I was on it about to years, didn't touch bread or cake for the whole time, and felt pretty good (except for the breath and the constipation when I forgot to eat the salad).

Thanks, ya'll!

I got the actual blood test done at the start of this past week (eating bread up to the day of testing, and cutting gluten out the next meal after the test). My doc may mail the results, but won't be able to sit down and talk to me until mid-July.

My rice cakes have "gluten free" on the label, so I'm hoping they mean what they say!

Mari, thanks for the toxin/spice info. It certainly won't hurt to try it! I'm open to ANYTHING to give me some relief.

Skylark, thanks for the info on the time it can take. I'll definitely give the gluten-free diet plenty of time to see how it does.

I did just get the biopsy result in the mail-- the biopsy from the end of the small intestine is normal. Does anyone know if that can be any different from the endoscopy biopsy that most people get when checking out the celiac possibility (from the start of the small intestine rather than the end)?

You do know that regular white bread is made from wheat flour, don't you?

Ha! Sorry I wasn't clear. I mean that in the last several months, I was living on pb&j (with bread) in an effort to get some relief from eating a light, bland diet. It only helped some. The celiac theory is new, and I only just cut out the gluten this week (and realized that the pb&j route may have been hurting more than helping).

For about 6 months, I've been having "tummy trouble," which is to say, regular daily diarrhea and painful cramping. It started slow, but when I caught a stomach bug that many of my friends had, I didn't really recover. The first suggestion by the doc was IBS, and I was given hyoscyamine, then hyomax, to get it under control. Hyomax helps, but had bad side effects (dizziness, nausea, abject misery). The hyoscyamine is the same stuff, but not control release, and it helps take the edge off the cramping, with minor but still present side effects. It also gives me some alternating days of constipation, so at least there's variety. Since they didn't provide a fix, I was sent for the butt-camera review.

I got a colonoscopy done which ruled out most of the scarier stuff, and some biopsies were taken of my small intestine. I'm waiting on those. The colonoscopy doc also had me go in for blood tests for celiac. Ah ha! I think. Other symptoms I've had: recent weight loss (25 pounds), lifelong anemia, lifelong canker sores. I did really well on Atkins several years ago, for about two years, until I went through some major life changes and wanted to stop having the Atkins bad breath.

I am actually hoping that celiac turns out to be the cause of my trouble, because it has a fix-- the gluten free diet. I've been on it for two days.

I know I should be patient, but when will I start to feel a difference if it's helping? I am being super careful-- reading labels, making my own food from scratch. I've also cut out dairy just to be sure. I'm also having a particularly bad episode of cramping and diarrhea at the moment, so my mood is not the best. I'm eating small meals, often rice cakes with sunflower butter, rice and chicken, baked potatoes, apple juice and watermelon.

I should mention that since I've been having trouble, I've been living on pb&j on white bread, thinking that bland food would help. Perhaps, it hasn't.

I don't see the doc again until mid-July, because of her schedule, so I won't have the test results until then. I know that false negatives are common, though, so I really want to see if the diet helps me.