healinginprogress

Thanks, mushroom. I know I'll be okay, just a lot to process. I actually had a really great day today, had energy, felt positive, it was wonderful. I hope more days like this will follow.

And guess what? Today marks month 2 of gluten-free (though it feels SOOOO much longer, wow!)!!!! I'm on the right track.

Had my appointment with the colorectal surgeon today and she decided I should get a colonoscopy and a gastroscopy to make sure there's nothing else going on down there. I also have rectal prolapse (part of my colon comes out when I go to the bathroom), which I learned can be linked to malabsorption and malnutrition, as well as always straining and pushing, etc. And for that...I need surgery.

I'm glad that they're taking care of everything. But I'm not gonna lie...I'm a little scared. I'm especially scared for the amount of time I'll have to take off work.

I'm so overwhelmed with everything

Plus...I'm 29 for crying out loud! WTF?! It's so frustrating! I know I should be grateful that these things are being taken care of now, but it's just so crazy! I feel too young to be having bum surgery LOL I'm just so angry, depressed, sad, anxious, tired of it all!

I've had TMJ for years and years, would LOVE for that (along with all the other symptoms) to go away! I notice I've been clenching a lot lately, though...super-stressed. I try to catch myself, but I do it a LOT!

Hope you see improvement!

Yes, I'm going to have to look into this! My B12 was high on my bloodwork because I had recently had a B12 injection. Not sure about folate, though, wasn't tested for that, but symptoms definitely sound...."familiar"

When IrishHeart told me she found out she is folate-deficiency anemic, I thought I would take another look at my lab results and see if they even tested me for folate. I wasn't tested for folate, but just wondering what you guys thought about some of my results...thinking maybe I should be taking a cal/mag supplement?

Glucose Fasting 4.6, ref range 3.3-5.5

Calcium 2.21, ref range 2.10-2.55

Magnesium 0.79, ref range 0.70-1.05

TSH 1.1, ref range 0.38-5.5

Ferritin 39, ref range 15-180

*Note: these were pre-gluten-free, I've been gluten-free since getting these test results as my Tissue Transglutaminase Ab IgA was through the roof

Fair enough, Zus, and I'm not criticizing anyone for asking these questions, I was just curious, I guess. It would be awesome if we could "cheat" now and then without consequences.

I also just wanted to know so that I could make a stronger stand against anyone who questions how careful I'm being or tries to push me to have "just a little bit".

Ok, thanks, guys, I'll have to stock up on some of those items. I panicked, so I did induce vomiting, but I won't next time. My reaction wasn't that intense, although very very very bad headache the next day.

I understand that some people have much stronger physical/neurological symptoms than others...I seem to have some pretty strong reactions, myself. However, I know also that some people have celiac but have NO physical symptoms at all, however, if gluten is ingested, it is still damaging their intestines. So, I guess I'm just confused, because if you are celiac, and gluten damages your intestines...then won't ANY AMOUNT of gluten cause damage, regardless of whether you notice a reaction or not?

I guess I'm just confused about these "how vigilant do I need to be" questions, and I'm not trying to start any fights, negativity, or arguments, I just figure if we can't tolerate gluten, that our bodies won't tolerate even a little bit of gluten. Just because we can't tell our body is reacting to it doesn't mean it's not, as is evidenced by celiacs who don't react at all.

Thus, in MY mind, it seems like we should stay away from ALL gluten if you've been diagnosed, even if you find you don't react to small amounts, because it can still be tearing up your insides.......

Is this correct? Not so? Thoughts?

CRAP!!!! I can't believe I just did this!!! My bf brought me some beef jerky, and I didn't even THINK to look at the ingredients...why?? I DON'T KNOW!!! I've been so busy today, and was finally relaxing, watching tv, and grabbed the jerky. I ate the whole bag, then my mouth felt sorta funny, and I thought, wait a sec, I never checked the ingredients..........sure enough, contains soy AND WHEAT!!!

Do I induce vomiting? Would that help? 'cause I will!!! Seriously, I'm scared, I don't need this right now. I also gave blood today, so I'm already not 100%. I work at 1130 tomorrow morning, and I'm worried I'm going to be really ill! I almost lost my job the last time I took a Sunday off....why is it always Sundays? Strange. ANYWAYS.............

WHAT DO I DO???!!

I was diagnosed with hypoglycemia (low blood sugar) when I was younger, though it's less of a problem now. It is good that you are eating frequently, but you may have to watch the sugar content of your food choices. Even though it is from fruits and natural sources, LaraBars are quite high in sugar, which may be causing your blood sugar to spike and then drop rapidly.

The Glycemic Index indicates the effect of carbs on blood sugar...a low GI will have less of a drastic effect. That being said, GI values aren't available for a lot of foods, plus they change when combined with other foods. For instance, the GI of LaraBars might actually not be as high as it would seem since it is combined with nuts.

Apples, pears, and plums are considered low GI, as are most vegetables (excluding carrots, potatoes, and corn). Nuts are also low on the GI. So maybe try an apple, a handful of nuts, and a string cheese for your snack and see if this helps!

Also, adding cinnamon to your breakfast (or any meal/snack) will help lessen the effect of carbs as it regulates blood sugar, reducing the rise in blood sugar after eating.

I hope this helps!

Oy...felt like I got glutened yesterday evening...not sure from what, possibly from work. It got really busy, I was the only server, bringing out food, clearing tables, spilled beer, etc. Probably pretty likely. Still feeling the effects this morning, the muscular pain in my pelvic area is pretty intense. Had a Vega shake but now feel nauseous. Very tired and just "down", especially because I have to go train people at the gym...VERY hard to do when I'm feeling like this...I'm very careful when I'm getting the weights and putting them back for my clients, but it's inevitable that I'm going to be using my core/pelvic muscles. I think I might be a bit constipated today, too, which doesn't usually happen, but is not helping with the ouch factor.

I'll get through it, I always do, just wanted to complain/vent a bit, I guess.

Also, went to buy gluten-free dog food yesterday, got it home and realized it was WHEAT free, but not GLUTEN free...frustrating! So hopefully I can return it and find something else.

And one last thing....I haven't had a day off in a couple weeks, and today was supposed to be my Friday...I've booked a 90min massage for tomorrow (YES!), but when I looked at the bar schedule yesterday, they put me on for a short shift at 430! It's not a long shift and I need the money, but I also need some time off Oh well. At least I still can go to the massage. It's not going to be relaxing, I am ridiculously tense, but it should help a great deal.

Okay...thanks for letting me ramble on LOL It's not so bad, it will get better, I am strong

are these all prescription or over the counter?

Coffee can be hard on the gut when you're trying to heal it, but probably isn't causing the headaches. I had really bad headaches, too...they're lessening now, so I believe they will get better for you, as well! Gluten withdrawal is the worst...but everyone tells me it gets better, and I am gradually seeing improvements. Good luck and keep at it!

Just wondering if there are things that help with digestion of meals? Despite my meals being gluten-free, I feel like I need a little help sometimes, especially since I'm still healing. I do my best to eat smaller meals, but sometimes I get hungry and eat a little more, and then I'm a little uncomfortable. And some gluten-free foods (even unprocessed whole foods) are just a little harder on the digestive system than others, I find.

Thought you guys might have some ideas? (over-the-counter, home remedies, or otherwise!)

Thank you for all the birthday wishes and suggestions!!! Unfortunately, Saturday was nothing like I had hoped for my birthday, but I survived. I bought myself a sweatshirt, which was the nice thing I did for myself. I went to see my very best girlfriend ever, who I don't get to see very often, because I needed a hug....and she told me she's moving to the Yukon in 8 weeks with her wife Then I worked, nobody announced my birthday, I was in so much pain that I barely told anybody but ended up making decent tips anyways. After that, I went off to meet up with a friend who is moving to California...well MOVED to California on Sunday So I had a little cry with him, then I went home, took a Percocet for my pain, ate an entire box of Enjoy Life chocolate chip soft-baked cookies LOL I hadn't tried them before, but they are free of the 10 common allergens, so they were still kind of keeping in line with my elimination diet And then I passed out.

Meh.

BUT!~ Today my man has the night off so when I got home from work we went out to my first gluten-free dinner and are going on a date! So far the meal is settling well!

You truly ARE a gem, IrishHeart!

Yes, my height is definitely inconsistent with celiac.

I can't write too much back now, because...SURPRISE...I have to be back at work in an hour It was only 5hrs on my feet yesterday and I was dying, today is 8hrs.....

I guess it's just hard for me to believe I have celiac and/or that celiac can cause ALL these symptoms I have, because it really sounds too good to be true, ya know?? I also have livedo reticularis (just didn't know it had a name until a few days ago, but I've had it forever and HATE it, always purple), frequent urination, eczema every now and then, and I would get peely red patches around my mouth that my doctor thought was eczema but could never find a treatment that would really make it go away....there's just so many things, it sounds like a "hoax" that they could all go away just by not eating gluten LOL But I can't WAIT!!!!

Yes, I suppose I HAVE been stressing my whole life, my childhood wasn't the greatest, filled with loss and fear and pressure. Things weren't talked about back then, wasn't supposed to cry, etc. But I won't get into THAT whole thing They also thought I had hypoglycemia when I was younger and I wasn't allowed to eat refined sugar for years, but am okay eating it now, for the most part, but still try to make sure I eat every couple of hours...I just was thinking about that diagnosis and wondering if it was in any way related to this?

I have been through a lot of therapy and am better at coping than I used to be, but it is definitely still a struggle...anxiety, depression, insomnia.

I will make an appointment with my massage therapist...I'm a bit broke, but it's been too long, and while I'm not in AGONY while sitting, it is hurting even when I'm sitting now.

I've always been pretty thin, so I can't afford to lose much weight, but I have. I'm nearly 5'11" and yesterday morning I weighed in at 127lbs. That's how much I weighed when I graduated high school, I think, which was ten years ago. I don't know how old everyone here is, I just turned 29 and do feel blessed that I have a diagnosis (well, positive blood test) now, as I know it didn't happen for many people until much much later. In fact, I'm pretty sure my 61yr old mom has it and has not been misdiagnosed for eons...I told her to request a blood test.

Anyways, what I was getting at, is I'm tiny right now. The last time I ended up in the hospital (right after christmas), I lost so much weight so fast that I could barely sit up. I ended up with bruises on the backs of my legs from the TOILET and on my hips from lying on my side....in fact, it always feels like my hip (where the femur fits into the socket) is bruised, as well as my legs feel bruised to the touch, mostly down the sides. I don't know if anyone experiences clumsiness as a symptom, or maybe it's a product of the brain fog, but I keep banging into things, too, which is leaving me black and blue.

But yes, while things kinda suck right now, I have noticed some positive changes...in particular, I'm not throwing up a third of my meals anymore! I think I've puked maybe three times since going gluten-free.

To be honest, I think I've lost any point I was trying to make LOL I think I just wanted to share some more of my story, so thanks for allowing me to do so.

And BRIGIT, forgive my ignorance, but I had to google Cape Town...WOW, you really DO live far away!!!

Thank you so much, ladies...it really means a lot to me. I'm feeling a little "lighter" right now thanks to you, despite the merely two hours of sleep I got IrishHeart, you even made me laugh And, yes, I am hoping one of the things I will be able to do today is nap...but I won't hold my breath!

The sun is out, which has been pretty rare lately, so that is lovely as well. I'm going to take my doggies for a nice walk, and then take care of some errands...the never ending trips to the grocery store, LOL, good thing I actually really enjoy grocery shopping (used to enjoy it more pre-gluten-free, of course, but still like it). And I plan on getting myself something...or some things...nice for myself while I'm at it. I can't spend too much money right now, things are a little tight, but I'll figure it out...I don't need expensive things to bring a smile to my face or bring me comfort (although a night's stay at a hotel room with a BATHTUB in it would be nice...miss baths! AND ALSO, everything BRIGIT said sounded AMAZING, and just the fact that you thought of all that stuff makes me feel good).

Okay...this CAN be a good day...this WILL be a good day. And I will also try to be happy and thankful that I know now how to get better and that I AM healing...things will get better.

Thanks again...I have left "THE DARK SIDE", at least for now

Well, it's my birthday in a couple hours. My first gluten-free birthday and still on the elimination/whole foods diet. And the first year I haven't planned anything, and don't really want to see anyone because I'm NOT feeling very fun at all and don't feel like I have much to offer at the moment in a social situation. I've been in some "dark places" lately, feeling completely discouraged, depressed, confused, and just...sick, in pain, tired, etc. along with it.

While it was really "my choice" to not plan anything...although I am going to blame GLUTEN!...I still think I'm going to end up getting upset. Usually I eat and drink and have fun on my birthday. I'd even be happy to just hang out with my man tomorrow, but he'll probably be sleeping most of the day, and then working all night. I'm even working, from 4-9pm...at a bar. At the very least, hopefully people will tip well. I feel like it would be easier to say I'm pregnant than to say I can't drink!

So I'm not sure what to do...I know my guy thinks I should abandon the "diet" because it's my birthday, but I don't think he really GETS IT that it could potentially leave me sick for days (even if it's still gluten-free). But I don't think I'll get to see him much, anyways.

I apologize if it sounds like I'm feeling sorry for myself, I'm just wondering if anyone has any tips for how to get through it without turning into a blubbering depressed mess...which is entirely possible Considering it's already happened at least twice this week

I guess I should at least get some rest. It's a good start, I'm sure.

Awwwwwwww, sweetie! You DID just give someone this pep talk...ME I wish I had more of a pep talk for you, but I think I'm still all gluten-y LOL But these people have displayed some amazing support and encouragement that hopefully has helped you a bit...it helped me a bit, too. I wish the relief was more immediate, but I guess it's true that the damage has accumulated over years and years, so it makes sense that it will take time to undo, I suppose.

And it IS tough, thankful as I am to finally have some sort of an answer, it is tough to know what is wrong and to do everything you are supposed to do to resolve it, and STILL feel like CRAP! I keep trying to believe that it will get better. All these people wouldn't be lying to us, right?

Hang in there, IRISHHEART, you are amazingly strong to not only go through this, but to be able to support others and maintain a sense of humor while you're at it.

Brigit, you are so sweet, I feel for you, too...going through this together! Yes, unfortunately it usually is cleaning the house that gets put on the bottom of the list, but there are MUCH more important things than that, as much as I like a clean house. And as for friends...I feel INCREDIBLY anti-social during all of this, do you? I don't feel like I have much to offer, I guess. I prioritized to have coffee (well, "water" LOL) with a friend/ex because he's moving away, and gluten/celiac is really all I could talk about. My head is so foggy and it really is my life right now, so I didn't really have much else to share. He didn't mind, but I felt silly.

Tomorrow is my birthday, and I don't even care. It is the first year I have nothing planned and don't want to do anything or see anyone, really. Not because I'm having a "pity party", I just don't feel like much fun right now, ya know?

IrishHeart, thank you, as well. It really IS hard to not worry, but I will try to relax....

I finally slept last night for a good solid time, although I did take a sleeping pill to sort of "guarantee" it, but I really needed the rest.

We have some of the similar pain areas, although I realize your pain is much more intense and extreme! When I was younger I was told I have TMJ (termandibular joint disorder), my jaw and the muscles surrounding hurt quite a bit...worse when I'm tense/stressed, as I know I tend to clench (have found myself doing that more lately during the day, usually it's more when I'm sleeping). I've even had a massage therapist massage inside my mouth (with gloves on) to get to the muscles...so weird! And my trapezius muscles (neck/shoulder area) are SO tense and hard right now it's ridiculous. When you mentioned pelvic floor pain, I was curious, but that's not the pain I'm having...it's my iliacus and psoas muscles, as well as my lower back, which is likely from standing so much and abdominal pain/inflammation. They're usually held up when you're standing, but when they're sore I just want to let them go and let my stomach hang out and hunch over because they're so tired and sore. I think you gave me some great advice, and I will try to keep it in mind, I definitely don't want this pain to continue or escalate

BREATHE....RELAX.....REST................

Okay, I'm just on my way out the door, but wanted to thank everyone for the replies so far...I think part of me just needed to hear that I'm healing and need more rest! I really hope I'm not getting sick

I didn't know Advil (ibuprofen) was bad for the gut...it's usually what I take for headaches and body aches. The only other thing I have right now is pure codeine (no caffeine in it)? Not sure if that would be any better?

I've been trying NOT to take the sleep meds, I don't take them every night, and especially if it's 3am unless I don't have to get up for a while...I did not take one last night. And I felt awful BEFORE I took the benadryl.

Yes, I am definitely stressed...I feel like it shouldn't be so hard, but it's definitely wearing on my psyche...worrying about every morsel of food I put in my mouth, and such. I've already missed some work because of illness, so I'm broke and can't really take any more time off at risk of getting fired I was stoked to get a second job, just really bad timing!

I will get home around 3ish again tonight/tomorrow morning, but don't have to work again til 5pm or something tomorrow night, and it's a shorter shift....so I will do my best to sleep in tomorrow!

Thanks for the support. I know other people are going through the same things, I'm not THAT special, but sometimes it just feels like "this can't be right, what's wrong with me?". I just have to accept and believe that I AM celiac, that there's probably nothing else going on inside me (sometimes I worry it's something else), that I just need to heal and it will get better.

Wish me luck tonight, and happy st.patrick's day (minus the green beer )

I guess I'm more easily fatigued because I'm healing?? And/or lack of sleep intensifies the symptoms?

I'm working two jobs...yesterday I slept in a bit because I felt ill from the day before, but then worked on my feet from 430pm to 230am, got home at 3am, tried to sleep, and then had to be at my other job at 9am. Only for an hour, but seriously, I feel AWFUL! I almost feel like I have a terrible hangover, but I didn't TOUCH a drink (well, I mean, I served them, but no drinking).

I've been resting since I got home because I have to go back to the second job at 5pm til 730pm and then back to waitressing, from 9pm til...possibly 2am, if it's busy (and it IS St.Pattis!).

I've taken advil, benadryl, vitamins, drinking lots of water, etc.

I don't often get a lot of sleep, but the effects aren't usually like THIS! It's terrible, and I don't know how I'm gonna make it all night I just want to feel better!!!!

My doctor suggested it and I declined. I told him I was afraid I'd know more than she does...he probably figures I'm a smart ass. If she isn't familiar with celiac, I thought I'd probably be the recipient of ancient info, which was not up-to-date and besides, any questions I've had, I can get answers to right here or by picking up a book or googling a product, which is how I ended up joining this forum.

Ok, good, that's what I thought, too!!! So glad I got some extra rest When I went on the Celiac Tour of Planet Organic (health food store) the lady giving it was a member of the celiac association and she was impressed with how much I knew and that was just a week in. I think this forum and googling are pretty fantastic resources :)