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Weird. Something similar happened to me a few weeks ago. I started getting really weak and confused and could barely make it up the stairs to my apartment. Then I started shaking uncontrollably and was freezing cold even though it was in the 90s that day. I threw up and then pretty much passed out because I felt like I was going to die. The next day I stayed home from work because I felt like I was recovering from the flu. Not sure if this is the same thing. I couldn't trace it back to gluten and I never react to gluten like that so I have no idea.

Lifting weights can also help. Maybe you can join a local fitness center and get a session or two with a personal trainer. He or she can show you some good exercises to do and how to do them with proper form, etc.

Yes, it's possible to not feel sick after eating gluten. A few weeks ago I ate something with gluten and didn't get sick at all. And sometimes I get very sick. But it doesn't matter how sick you feel, gluten is still doing damage to your intestines if you do have celiac. I'd go get tested. It certainly can't hurt anything.

Welcome! I'm glad you've finally found the answer to all your health problems. One day of being gluten free won't affect testing. Are you getting a biopsy done?

Eating out at nicer restaurants is easiest I think because there's a chef who can make your food specially. Some places also have gluten-free menus like PF Changs and Outback. I've been going out to eat a lot this summer and I'm always surprised at the number of places that have gluten free menus. I usually look a restaurant up online before I go and call them so I know exactly what I'm going to get.

It's very common for celiacs to have an irregular cycle. I didn't get a period at all until my doctor put me on the pill when I was 19. I'm 24 now. I've only been gluten-free for 10 months and haven't been off the pill for long enough to know how my body's going to respond. I've tried probably six or seven different brands to find the one that was best for me, so keep looking.

Your daughter has been gluten-free for a year, though, so I wouldn't think celiac would affect her periods much anymore. I'd say it may have more to do with being so young.

What about Buger King french fries? I've been to several BKs and all of them have told me that they have a dedicated frier for their fries. The last time I got fries, though, I found an onion ring halfway through! Which really made me mad because I love fries and I could smell them all afternoon and couldn't eat them. So, are BK fries gluten-free? Was this a fluke incident or not?

I'm surprised your pharmacy didn't find this information for you. My pharmacy was great and called all the manufacturers of my meds for me.

Welcome! I'm 24 and have been gluten-free for 10 months. I had a lot more energy after a few weeks, but it took me probably eight months to feel like I was living my life 100% again. I had lost a lot of strength from being nearly bed-ridden for a year, so I think the eight months was a combination of recovering and getting my strength back. I was able to coach gymnastics after two months gluten-free. I think it was a gradual getting better and one day I woke up and realized I felt better than I had in years!

It's great to hear that you're being so aggressive with your recovery. It took me months to find all the hidden gluten in my house so keep looking. I even found some gluten shampoo at home a few weeks ago!

It's very common. You most likely have an addition to gluten. I used to binge on gluten foods all the time. They were the only foods I craved. Now I never crave any food. Give it time, wait it out, it will go away.

By tired do you mean emotional or physical fatigue? If it's physical, maybe you still have some underlying health conditions that you haven't discovered yet. If it's emotional, I'd recommend seeing a therapist.

Is your entire family gluten-free? I now live alone. My entire apartment contains no gluten so I don't have a daily struggle with the disease. When I go to visit my parents I constantly have to be thinking about it because there's gluten in the house. I don't think it's too much trouble for an entire family to have gluten-free personal care products and for food to be mostly gluten-free. Maybe have one shelf of gluten food for the other family members. I also wouldn't make gluten food for the rest of the family. If they want it, they can prepare it themselves.

Oh man, that stinks. Sorry you have to deal with this. I don't have any good advise for you, but I think insurance companies are being stupid with celiac disease. Honestly, I am so much healthier now that I have a diagnosis than before. Do they want people like me to go back to weekly doctors visits and several prescription drugs? They are saving so much money now that I'm diagnosed. But I don't think there's any good way to prove this to them.

I turn on my light. I think psycologically I know I'm not supposed to fall asleep with it on, and now that I'm not "allowed" to fall asleep I do. It's the pressure of having to fall asleep right now that makes me less able to sleep.

To take some of that anxiety away I tell myself that I don't have to sleep, but I do have to lie in bed and rest. Resting is better than nothing. And now that I've given myself permission to just lie there, I fall asleep easily.

I also suffer from extreme fatigue and joint pain when I eat gluten. It was so bad that I was diagnosed with fobromyalgia (which I now don't think I have). I couldn't even lift small things like a gallon of milk I was so tired.

Since your girlfriend is so new to this, she's probably still "addicted" to gluten. I've read that gluten can be similar to a morphine addiction to celiacs which can make it very hard to give it up. Pre-gluten-free I used to binge on gluten foods all the time, now I have no cravings for anything.

I'm 24 and initially celiac disease does make you feel a bit like an outcast. But eventually you start figuring out what's safe and what's not. When I go to restaurants I call ahead so I know exactly what I'm going to eat before I get there. When I go to friends' houses, I always bring my own food. And everyone is very accomodating. They always ask me what restaurant is ok for me to eat at, question me about what foods they can serve me, read ingredients for me to try to find safe food (nevermind that they frequently get it wrong, I love the fact that they're trying so hard and seem to really care about me). Everyone's very interested in celiac disease, and I use it as a way to educate people. Once she gets the diet down, she'll hopefully feel less self-concisous and some of that anxiety will diappear.

I also meant to ask about intolerances to legumes, nightshades, etc. Can these be tested for or do you have to figure it out on your own through a food diary or elimination diets?

Thank you! I hate doing food diaries so much. I'd rather do almost anything else than have to write everything down...

It looks like I should do both allergy testing and enterolab. I'll probably get the milk and the egg/yeast/soy panels.

Speaking of allergies vs. intolerances - can this occur with things other than food like dust, too? I've been allergy tested for dust and it came up negative, but I KNOW I have problems with it. When I start to feel sick in the mornings and my eyes itch I do a good bedroom cleaning and I'm all better. Is it possible that I have an intolerance to dust rather than a straight-up allergy?

I know we just had a million threads about Enterolab, but I can't seem to find any of them. I'm thinking of getting the testing done, but I don't know which ones I need. I can do the gluten sensitivity/gene panel, but I'm already convinced I have celiac so it seems like a waste of money to do the test. Is there any info I'd get from the gluten panel that would be useful to me if I'm going to stay on a gluten-free diet regardless of the results?

I was also looking at the milk test and the egg/yeast/soy test. The question I have about these two is - can I go to my doctor and request an allergy test for these food products instead and get the same info? Does Enterolab test for allergies to these foods or more of a celiac-type auto-immune reaction? It would be way cheaper to get testing done through my doctor. Plus if I do have food allergies, she could test for things like corn, too. Can doctors test for legumes?

I've hit a wall here at 10 months gluten-free. I feel like I'm 90% of the way there, but there's still something that's not quite right. Thanks for the info, everyone!

Sounds normal. I've been gluten-free for seven months and just got glutened last Friday. My brain-fog let up enough today to do some filing and balance the checkbook, but my energy certainly isn't where it could be.

Be sure to read balsamic vinegar's label. I believe that some of it might have flavorings if it's not real balsamic ... someone correct me if I'm wrong. Also, balsmaic vinagraitte dressing often has soy sauce in it (I read several recipes for it on the internet and discovered this).

Don't get discouraged. It will happen less often as you go on.

Shoot - I get balsamic vinagarette all the time. Maybe this is why I've been feeling yucky recently... Thanks for posting.

I also heard somewhere that some charcoals are made from partical-board type woods, which contain glue, which in turn can contain gluten... I always use foil when BBQing. My mum says that some charcoals will say on the package if it's made from "pure" wood or not, but I haven't actually checked this out myself.

I don't have any problems with touching gluten. I even like to smell my friend's gluten treats. I have no desire to eat them, but they do smell good

I always assumed that touching gluten would only affect people with DH, but you've just proved me wrong.

Thanks for the feedback, everyone. I do want to use this as more of an educational thing. I don't really blame my doctors for not figuring it out (although there are two who I think should have figured it out). I never had any of the "classic" symptoms, or at least I never went to the doctor with them. I also went to the doctor with isolated symptoms - I'd go in for my knee pain one visit, fatigue another. I moved around a lot, too, so I never saw the same doctor. I'm not surprised no one made the connection between all of my symptoms and celiac disease. I didn't even make the connection between all my symptoms until going gluten-free.

It's too late for me - I just want to spare other people from the same thing. It's really bothering me to think that there are people out there who can't live their life to the fullest because of something that's so easy to change.

Ok, maybe I'll do it. I have so many doctors that I'd have to write to: that GI doc, all the doctors that told me I had chronic mono, the ones who diagnosed me with chronic fatigue and fibromyalgia, my gynocologist who never could come up with a reason for me never getting a period. And several shrinks who never figured out the connection between depression, eating issues, and celiac. Oh, and the many orthopedic surgeons who would tell me that there's nothing wrong with my knee so they have no idea why it hurts too badly to even walk. Hmmmm. This could take me a while.

Maybe I'll put something together and post it so if anyone else wants to send it to their former doctors they can.

Has anyone ever considered or actually written to an old doctor that misdiagnosed you? After eight months gluten-free, I'm starting to realize how sick I was. It came on gradually so I never noticed that I wasn't feeling right. My life has dramatically changed for the better in the last year.

But then I think about all the times in the past that I should have been diagnosed but wasn't. Someone should have figured this out at least six years ago. The one doctor's visit that sticks out in my mind the most is one to a GI. I was throwing up blood so he knocked me out and did a stomach scope looking for ulcers. Didn't find one and told me that it was probably nothing. Why the heck didn't he think to go a little further and look at my probably non-existent villi??? That is his job.

So, the other day I was thinking maybe I should write a letter to all my old doctors who misdiagnosed me. Or shall I say, didn't diagnose me, because most of them said "yeah, we don't really know what's wrong so here's some drugs and come back in six months if you're not better." All of a sudden I'm feeling really sad about all the years I lost to celiac disease, and maybe me writting a letter would give someone else several years of their life back. At the very least, it might be somewhat cathartic for me to write.

It's very strange - I've always been so upbeat and positive about my diagnosis. This is the first time I've felt any anger or denial or regret or any negative feeling relating to celiac.

I first noticed that my depression and fatigue were gone about eight months after going gluten-free. I suppose it was gradually getting better that whole time. One day I woke up and realized that my life was so much better!

I'm wondering if it has anything to do with Estrogen or Progesterone increase. When you're initially pregnant, you get a huge rush of progesterone . . . in order to sustain the embryo. That, combined with an increase in estrogen, causes the breast enlargement and tenderness. Noticed that myself, and I was using Estrogen cream. After going gluten-free, the estrogen cream gave me morning sickness! After stopping it completely, the morning sickness subsided. Still had breast enlargement and tenderness, though. Have to have my levels drawn within the next few weeks, then see my endocrinologist. I'll put that on my list of questions for her . . . she's fantastic, and loves quirky, challenging questions. (Thank goodness,because I feel that I provide her with WAY too many ) Will let you know what she says . . .

It could be because your body is absorbing more of the drug. I know with a lot of oral drugs you can take a smaller dosage once going gluten-free because you absorb all of it. When your intestines are damaged you only partially absorb food and drugs. Not sure if it's the same with topical creams.

Hmmmm... maybe what I need is a bra fitting! This never occurred to me before, but now that I think of it, when I take off my bra at the end of the day it IS a relief... How bizarre! Did you gain weight? I've gained a couple of pounds, but not enough to have made a difference, I would have thought-- but maybe it's all going to my boobs! (My husband would like that-- if I weren't always saying "Ow, that hurts!)

Leah

I didn't gain or lose weight after going gluten-free which is why I found the whole situation so strange. I didn't make the connection to gluten until several months after. I was also one of those people who never got a period until I stopped eating gluten, so I think the hormones in my body finally evened out and I "finished" puberty.

I don't remember having any breast tenderness, but I did grow a full cup size within a month of going gluten-free. I'm 24 so that was something I was not anticipating!