healinginprogress

It can take some time to heal gluten free but if you have had positive blood tests and are continuing on gluten that may be the reason for your continued distress rather than other intolerances.

Oh, I've been gluten-free for 20days now! I'm definitely concerned about having to go back on gluten...I just don't know what to do!!! The endo is to confirm diagnosis but also to make sure there's nothing else going on...history of colon cancer in the family. Maybe I'll call the surgeon's office and see what they say??!!

sigh, now I'm even more confused

I'm glad that I'll get some results, just nervous about how sick I might get, because unfortunately I have some things to do after I'll be tired already (7am testing..yuk), just hope I don't get too sick to add to the mix. And 2hrs at the doctor's office...ugh.

Okay, I'll stop whining LOL Anything I should know?

Yes, it's a Coldplay lyric, but it always goes through my head when I'm lying here NOT sleeping. I had maybe four hours of sleep last night, had to do a few things this morning, but then had a couple hours off where a nap would have been wonderful and beneficial, I'm sure.

My body needs rest to heal, and I'm very tired, but I just can't seem to fall asleep. Usually at night I take prescribed meds, but they didn't do much last night.

I guess I'm still resting by lying on the couch, but it's really not the same. I just started an elimination diet, so I don't see my energy levels really going up much in the next little bit...I NEED SLEEP~~~

Oh and no, I don't have an allergist...I think it's a super long waiting list for them. I had a positive (verrry positive) blood test and got a referral to a colorectal surgeon (for apr 17, I think), and a dietitian, but I have to attend a Celiac Group on mar 16 first. The doc told me to go gluten-free, and if the surgeon needs me to be on gluten for the testing, then to go back on it then, because it can take some time to get appointments and whatnot. But I've still been getting sick, hence the elimination diet...if I'm going to be cutting out foods, then I don't want to still be sick, it's just not worth it!

I totally understand,, it is soooooo overwhelming, doing a strict elimination diet is tough,very tough, but so very worth it when you start to heal ,feel free to ask questions or just vent if you need to ,,hang in there

Thank you so much, it's enough to drive a person crazy...I go from fine to completely depressed and wanting to give up, to angry, to...exhausted! Right now I'm struggling with being unable to nap. Or sleep in general. So tired, but I've had terrible insomnia forever. Hoping it will be another symptom that will go away with healing.

ugh, so we can add nausea and vomiting to that last meal

Ok, sorry, everyone...this is all just so overwhelming....

I just did a tiny search on elimination diet and realized what I was doing wasn't even close. So I guess now what I'm really asking is for some help/advice on the elimination diet. From what I read, I'm thinking I need to cut out all the potential allergens/sensitivities until I show improved symptoms, and then reintroduce each one individually??

(sorry, I don't know how to delete the topic, otherwise I would have)

Well, after my little meltdown a couple of days ago, I have begun an elimination diet of sorts. I cut out dairy, soy, and am trying to eat more simply and keeping a food diary to see what is still making me sick.

So far, I've gotten gassy and bloated 1. after I had a baked yam, a few pieces of broccoli, and eggs, and 2. after having gluten-free tacos...basically just extra lean ground sirloin, homemade guacamole (avocado, garlic, cilantro, lime, tomato, and jalapeno with seeds removed...it wasn't spicy at all), onions and mushrooms sauteed with a bit of vegan margarine, and gluten-free corn tortillas.

I bought a new pot, pan, cutting board, and cooking utensils that are dedicated gluten-free.

I know that eggs and corn are also common food intolerances or allergens...I'm just having a hard time believing that I could be intolerant to all these things!

The only way for me to really find out is to eat them on their own and see if I react. It's just so crazy to me! Plus, I don't like getting sick, so I'm a little reluctant to try them on their own, ya know?

I guess I'm just wondering if I could really be sensitive to gluten, dairy, corn, and eggs...haven't even TRIED soy, yet...or is painful bloating, burping, and gas just part of healing? Maybe I'm not willing to accept it And if I AM sensitive to all these things...could some of them go away with a strict gluten-free diet? I've heard that dairy can usually be reintroduced after some healing, just wondering if the others are similar.

Sigh....

I was very reluctant to give up dairy, as well. But after two weeks gluten-free (after a positive blood-test) and still getting sick, I have gotten really strict, and cut out almost everything! I've also startede preparing things really simply, and keeping a food diary, so that I can more easily detect what is making me sick. For example, I had eggs, some broccoli, and a baked yam, with nothing but some simple spices, and I ended up gassy and bloated. Now I know it could be eggs, or it could just be that broccoli can give people gas. So I can try either food on their own and see which it is. Much easier than trying to tease out all the ingredients in a gluten-free pizza!

It is really tough, but hang in there, I'm trying to keep the faith Good luck!

Woke up with a headache and feeling nauseous, though...not a pleasant start.

Off the subject but in another topic you mentioned you had several prescription medications that had gluten in them. Did you ever replace them with gluten free ones?

I went to my pharmacy yesterday and they were pretty useless, but then I went to a more celiac-aware pharmacy and he investigated all my meds. He said none of them have gluten YAYYYYYY! But three of them do have lactose. I have my hydrogen breath test on wednesday, and I'm starting dairy free (aside from the meds) today, so we'll see whether I need to change them or if the lactose won't be a problem.

LOL thank you, you're right, I probably needed it! And thank you for trying to save me from buying a new toaster oven...I've had this one for ages and cook so many things in it. My SO hasn't gone gluten-free, so I guess that's where my concern was. I cleaned it out, but could probably do a better job, and I was rinsing the rack every time before I used it, in case he'd used it in between.

So crumbs that happen to fall on the bottom of the oven (not the rack) won't gluten me??

And I have non-stick pans, nothing fancy/expensive, so pretty much all of them are scratched. I just read that they can harbor gluten if they're scratched...and so can wooden spoons and plastic cookware. yayyyyyyyyyyy (sarcasm LOL)

I'm really hoping I don't have many secondary intolerances...and if dairy is one of them, I hope it is temporary! Soy and corn would be sucky ones, too.

BUT best to find out. Feeling better will be soooooooooooo nice, I can hardly even imagine it, to be honest. Thank you so much for the advice, and for the encouragement

Well, I've been gluten-free for just over two weeks with very little sign of improvement, if any. In fact, at times things have been worse, though I know some of that can be chalked up to withdrawal.

My most recent bout of bloated, crampy, gassy gluten-ness, however, has really upset me. I've been resisting certain changes...like getting a new toaster oven and pots and pans, and going dairy-free as well. But I am SOOOO sick of feeling like this, and need to figure out what is causing it!!! I like to cook sort of fancy and I've also been enjoying some of the gluten-free treats from the bakery, so regardless of keeping a food diary, it's been pretty much impossible to pinpoint the glutening culprit.

But tonight, all of a sudden, I went hyper-celiac. I started feeling like everything I touch has gluten in it!! That part has calmed down a bit, but my "paranoia" is definitely in high gear...but this is probably a GOOD thing! I packed up all my gluten-free breads and put them in the freezer, to be enjoyed only when I can afford to get a new toaster oven. I cleaned out the microwave. I vowed to give up dairy (at least for now) and to eat simple things so that I can more easily tell what is making me sick. I also vowed to be more careful about kissing my boyfriend, and handling the dog food and dog licking. Until I can buy new pots and pans, I will only eat what I can cook in the microwave or in the oven with some tin foil on a baking sheet/pan.

**QUESTION, THOUGH: Do I have to get NEW pots and pans, or can I clean one or two of the ones I already have really well and dedicate them to gluten-free only???

Problem is, I'm sort of feeling like a freak....like a germ-phobe almost, you know? Okay, not that germ-phobes are freaks, that's not what I mean...I've dealt with mental health my whole life, I think I'm just too worried about other people perceiving me as a paranoid freak. But I guess I should stop worrying about what other people MIGHT think, and just worry about getting well.

It really is just a whole new world...and not my favorite, to say the least Wish me luck...elimination diet it is.

I've seen buckwheat pillows, but buckwheat is not related to wheat.

Yeah, I know buckwheat is ok for us. But sadly it is not buckwheat Magic Bags are made from buckwheat, I guess, says my SO...but this generic bag almost definitely had wheat in it (google image to the rescue)...sigh!

It's the patience that is the hard part I had to take Benadryl again last night because the itching is ridiculous. I'm not sure if the Benadryl helps because it stops the itching or because it knocks me out

It is weird to develop an allergy when I've never had any, but I've heard that can happen after diagnosis because the body is on hyperalert. I haven't cut out dairy yet either. I know I need to because I'm still having some gas, but I haven't been able to make myself give it up I know that I need to get over it, but it eliminates so many foods. Ok, I'll stop whining and just suck it up. It is so hard to know if something is related to celiac or something separate since celiac is so systemic. I've got a lot to learn. Thanks for the advice, you are all very helpful.

I'm with you on the dairy thing...but after days of feeling TERRIBLE, I think it's time to REALLY bare bones my diet...and then slowly add stuff back in. It's just so hard, because I love making fancy, healthy meals, but I guess I might just have to go bland for a while until things start healing up. And whine away...you've earned it, LOL!!! My fiance is sick of hearing it, we should at least have SOMEWHERE we can come and whine...because it sucks

I am also what I call an "agitated" celiac --I WISH I could sleep and nap. Whenever anyone on here talks about sleeping for 10 hours, I am astonished. I'm lucky if I get 4 or 5 hours.

I'm the same, I always say I suck at napping, because I just can't do it. And I've had insomnia for pretty much as long as I remember. I'm just over two weeks gluten-free, and today I started itching I feel as if everything I touch is poison or something! I am really hoping the itching, insomnia, bloating....oh I could go on and on...will go away in time!

So I'm lying here glutened, frustrated, and in pain, with a nice warm heating bag on my bloated gluten-belly...when I adjust the bag, and suddenly, upon feeling the little kernels inside the bag, I'm like...OMG...there's WHEAT IN THIS!!!! Am I seriously glutening myself with my heating bags, too??!!! I just picked a piece of the insides out to see, and sure looks like wheat to me...I think I'm gonna hop in the shower to decontaminate. I'm SOOOOO sad :( This is so hard!

Apparently this list started four years ago and I just found it tonight. It's fabulous. Thanks to everyone for validating my choices. It really, really helps to know I'm not alone. May God bless.

This is definitely a good thread to go through...I'm glutened right now and very very frustrated because I don't know what is glutening me But this list itself lifted my spirits a bit. I'm bookmarking it and going to spoon with my honey.

Thanks, Jestgar, that's awesome! I think my SO wants us to be prepared for when the zombies attack LOL I'll show him the list, he'll be thrilled!

Yeah, I think it's a great idea to have some stuff to take wherever I go...I didn't expect to be walking today, and ended up pretty darn hungry...not to mention at work the other day, someone had thrown out my food, so my man had to bring me some eats. I'm still new, so I only discovered today that ReBars and Lara Bars are gluten-free...so happy about this!

Just something that my SO brought up the other day...he wants to make an earthquake kit or something like that in case something happens and he wanted to know what we could put in it that didn't have gluten so if we get stuck in some sort of disaster that we could survive and I wouldn't have to get sick!!! Totally sweet of him to think of that, not really something that would have crossed my mind, I don't think. I know there's probably a bunch of stuff (canned veg, fruit, beans, etc.), but definitely made me stop and think

@loves2eat, I've never had a Krispi Kreme donut, either...I live in Canada, and RANDOMLY they had them at work a few days after I went gluten-free..seriously, people! LOL I did not give in to temptation...I tend to prefer savory anyhow.

As everyone else, I definitely miss convenience. What I was just thinking to myself as I was eating my apple and thinking I would love some raisins....Is that I miss the BULK SECTION!!! It's so much cheaper and...good LOL

I miss being NOT A PICKY EATER! I always made a point of not being picky.

But as for specific foods...I definitely miss sandwiches.

Thanks for the recipe. Do you think this would work with coconut milk or almond milk? also it is probably bitter becaus eof the arrowroot. I wonder if tapioca flour would work just as well wihtout the bitter taste.

mmmm I love almond milk...especially chocolate almond milk, I think it would work just fine! I'm pretty new to gluten-free baking, so I'm not sure about the bitterness...the arrowroot is just for thickening, really, so if tapioca flour does the same job, then that should work, too...Guess I'll be experimenting

Yeah, I know. I now have a new bf who's worried about my NOT eating! I'm like, "NOooooo! You don't understand! I WANT to eat!!!" Thanks for all the suggestions. Just knowing I'm not alone is worth millions. I don't want this drama! It's not me!

I think I may write up a "stages of mourning" for the newly gluten-free. Stage one: Bursting into tears in a bakery. Stage two: Feeling a desire to starve rather than eat. Stage three: ?...

Stage three: Not wanting to share gluten-free food.

LOL

Yeah, my fiance was with me through the worst, I ended up in the hospital twice, needing rehydration...I've lost weight from the disease, and I was so frail and weak that he told me he was going to fatten me up so that it would create a "fat buffer" so it's not so dangerous the next time I get sick LOL I'm still not asymptomatic (just two weeks in) but my appetite has returned for the most part, and he was very happy to see that!

Yes, your post is encouraging as I lie here awake since 5am lol But I hope you found out what was glutening you!

In a different thread someone said that carbs can be hard to digest while healing? Is this true? I'm going to my pharmacist today to see what we can do about my meds

I'm only two weeks in and I feel the same way, I've said a few times "maybe I'll just stop eating". But I'm a person who really likes food, as well, my bf's in the past have always liked that I actually EAT!

Anyways, I didn't know that carbs could be difficult to digest when healing?