Not The Best Way To Meet People

[curlyfries]

Hi! I am recently gluten-free and new to this forum. Actually, in my desperate search for info on gluten intolerance and celiac I found this web site and have been addicted ever since. I have been reading hundreds of threads and anytime I had a question I did a search and someone inevitably had already asked and it had been answered. After weeks of reading, going to suggested sites, printing off info, menus, etc, I now have a binder full of information. And... I am not as intimidated by this diet as I once was. However, by not asking the questions myself, I haven't met anyone, yet. I only became a member this past week. I have commented on a couple of threads and started one of my own, but I haven't been acknowledged, yet. In my attempt to not ask the same questions that have been answered over and over[ but always answered with extreme patience ] I feel I made myself an outsider. So let me introduce myself. My name is Lisa. I am married [DH has been very supportive] and I have two grown children. [One still at home]. My biggest issue right now is that now that I am feeling better, I still have problems at times. [And symptoms are often worse than they were before gluten-free] So I am trying to play detective, figuring out if it's CC, accidental glutening, or should I start looking at dairy. I know I will figure it out eventually. Everyone here has been so helpful and such an inspiration to me [even though you didn't know it]. Keep up the good work everyone!!!

Lisa

[rinne]

Hi Lisa, welcome and yes it is a wonderful forum.

[Lisa]

Hi Lisa and Welcome!

There are many Lisa's here and I'm one of them. I have been hanging around here since 2005. My how time flies....

[lizard00]

Welcome Lisa!

It's amazing how this one stop on the internet has affected so many; and the information available is unreal!!

I understand the frustration, keep digging. You really will find the answer.

[curlyfries]

Thanks, all! It's like having my very own Welcome Wagon Does anyone remember them?

[Ursa Major]

Hi Lisa, good to have you! Have you thought of removing soy from your diet? And yes, you may end up having to take out dairy. See if it makes a positive difference (make sure you give it enough time to before giving up).

[curlyfries]

Well I'm hoping that won't be the case . We'll see. I'm still experimenting with the dairy. Thanks for the advice .BTW, I was born in Ontario---Sioux Lookout. But only because my dad was in the Air Force.

[Lisa16]

Hi Lisa!

Welcome from yet another Lisa. I am pretty new myself. This is month 4 for me.

How long have you been gluten-free? It took me about 6 days to begin to see solid evidence of recovery and I am still getting better this far out. The joint pain and nerve troubles took longer and I still get the skin problems-- especially if I get glutened. I have gotten it in some pretty tricky places-- once from cranberry juice, once from Tostitos corn chips and once from dry roasted nuts. None of these things had overt wheat derivatives. Maybe it is something like that.

Or maybe it just takes awhile. I saw one book say it can take 5 years! And maybe there is damage that never gets better. I don't think I will ever be able to eat lettuce, for example. I saw another person on here who said something similar.

Good luck with the dairy! I recently read that corn, soy, gluten and casein all coat the small intestine in the same way, so those are the logical culprits to test out. The people here really know their stuff!

Good luck!

[gfgypsyqueen]

Hi Lisa and Welcome!

Glad you found this site. It really helped me in the beginning and even now when I have a problem this site is a godsend!

[Judyin Philly]

Welcome Lisa

Congrats and doing the 'searchs' to try to find answers .........your on the right track for sure.

Sorry there weren't responces before but we'll try to be here for you when you post again.

good luck

judy

[Ivanna44]

Hi! I am recently gluten-free and new to this forum. Actually, in my desperate search for info on gluten intolerance and celiac I found this web site and have been addicted ever since. I have been reading hundreds of threads and anytime I had a question I did a search and someone inevitably had already asked and it had been answered. After weeks of reading, going to suggested sites, printing off info, menus, etc, I now have a binder full of information. And... I am not as intimidated by this diet as I once was. However, by not asking the questions myself, I haven't met anyone, yet. I only became a member this past week. I have commented on a couple of threads and started one of my own, but I haven't been acknowledged, yet. In my attempt to not ask the same questions that have been answered over and over[ but always answered with extreme patience ] I feel I made myself an outsider. So let me introduce myself. My name is Lisa. I am married [DH has been very supportive] and I have two grown children. [One still at home]. My biggest issue right now is that now that I am feeling better, I still have problems at times. [And symptoms are often worse than they were before gluten-free] So I am trying to play detective, figuring out if it's CC, accidental glutening, or should I start looking at dairy. I know I will figure it out eventually. Everyone here has been so helpful and such an inspiration to me [even though you didn't know it]. Keep up the good work everyone!!!

Lisa

Welcome Lisa (curlyfries)

You are in the right place, there seems to be quite a bit of support here. I know I searched for a while to find a support chat/forum [but at last most had pay only entrance]. So thank goodness this is here. :D [three cheers for the forum creators]

I recall from one posting that it takes as long as 3 weeks being totally gluten-free before one can start to feel the benefits. I've been 3 weeks gluten free (for most part, cheated a far bit the first week, withdrawls and all ). So hang in there!! I am also, new to this forum.

I'm glad you have support with your family. That really helps.

hugs

[ellen123]

Hi Lisa,

Welcome to the site! I'm also relatively new to this forum and to gluten-free eating, and like you, I've read a lot more on this forum than I've written so I'm just starting to get to know some people here. It sounds like we have some things (and questions) in common. I also have a supportive husband, 2 grown kids with one still at home (she'll be leaving soon though ). I feel a lot better now that I'm Gluten-free but still struggle with symptoms popping up now and then, and it does get kind of confusing. I can usually trace my recurring symptoms (headaches, neck pain, peripheral neuropathy and DH) to something I did that could have messed me up (like eating out, or buying a latte somewhere) -- but it's puzzling and unpredictable. At first, if I ate the wrong thing, the symptoms came back REALLY strong. Now, 2 months later, if I accidentally eat the wrong thing (or eat out and get cc'd), my symptoms come back much milder, but one at a time, and then it lasts longer! So I might get neck pain for 3 days, migraines for 2 days, one or 2 small itchy bumps, but then my feet will hurt for another week! I'm also at the stage where I'm wondering if I should try giving up dairy. I know I've been advised to try that by at least one other person on this forum.

Today I spent some time with my adult neice who has multiple food allergies, and she insists that I give up dairy. She says her neuropath thinks 50% of the population is casein intolerant, they just don't know it. She also says that the most effective way to figure out what might be triggering autoimmune disease symptoms is to get all the major potentially harmful things out of one's diet (gluten, dairy (specifically, casien) eggs, soy, etc), and then slowly introduce things back one at a time to see what, if anything changes. She thinks if symptoms improve after going gluten-free but then they come back periodically, it could be that the gut is healing from eliminating gluten, but not healing enough, because there may be other things irritating it. So far, I haven't had the courage to do that, but I'm getting closer to trying to eliminate dairy at least.

Anyway, nice to "meet" you!

Ellen

[rpf1007]

Hi Lisa,

I'm pretty new myself (gluten-free a little over 2 months). I have recently started keeping a food diary to try and figure out if I have any other intolerances. In general I feel way better than I did...but occasionally have small upsets. I think the food diary is great way to see a pattern you might not realize if you are trying to keep track in your head.

Rachel

[curlyfries]

I've been gluten-free about 2 months, but I was gluten lite for about a year.[ Once I figured out what it meant to be gluten free, it seemed so overwhelming to me that I did it in "steps", working my way up to total gluten-free] So I was seeing some improvement back then. I have fibromyalgia and for some time now have had a lot of pain in my upper back and neck causing horrible headaches. I'm beginning to wonder if it's actually gluten and not the fibro. Most of it occurs when I am at work. There is a lot of costruction going on in the building and I've heard that there can be gluten in drywall compound.

What happens when you eat lettuce? I used to have bleeding when I ate raw fruits and vegetables or popcorn. I think my intestines were so messed up they could't handle the roughage. That doesn't bother me anymore.

Thanks for talking!

Lisa

[curlyfries]

My "one still at home" is a daughter also, but don't know yet when she will be leaving. I'm in no hurry She's been thru a lot lately--- anxiety disorder, stomach problems, narcolepsy. It's been better on MY nerves to be able to keep an eye on her. I inadvertently commented on neck pain and headaches in my response to Lisa16. I was thinking of your message when I typed it

When my symptoms are milder than usual are the times I feel it can't be gluten [unless I'm getting CC'd] At this point I'm pretty sure there's a dairy issue.

Keep in touch, we can compare notes!

Lisa

[curlyfries]

Great to hear from so many, especially the newbies like me! I find myself wanting to respond to everyone, but I must resist I think I may have to start a food diary, like Rachel said. I also need to keep a when and where pain diary, because I think my job may be making me sick [see my response to Lisa16]

Thanks all!

Lisa

[Lisa16]

Hi Lisa!

I also had the neck pain and muscle spasms (you could see them!) in my back! They are mostly gone now. Maybe that is a "just be patient kind of thing." I went to chiropractors and physical therapy for it and nothing helped. It was the gluten in my case. This probably took the longest to go away and if I accidentally get glutened, it can come back. I still get a twinge now and then.

I had trouble with the nerves in the hands and legs (and TMJ! I see you put this in your symptoms too!)-- this is mostly gone at this point. I did have some come back the last time I got glutened by the cranberry juice. I also got DH blisters in a matter of hours. I hate those the most because of where I get them sometimes. Mine can take a week to go.

I still have malabsorbtion issues with certain things-- let's just say that things like blueberries (stuff with skins and seeds) and lettuce make a reappearance. Popcorn is terrible too. And I am pretty sure I can't do corn tortillas or corn chips ever again. Same kind of deal. I used to get the bleeding when things got really bad.

I am betting if you can manage to keep from getting glutened, you will see and improvement in a few more months. I wonder if you can ask to be moved at work or if there is something they can do to help you out there.

Lisa

[curlyfries]

I go to a chiropractor once a week, sometimes twice when it's really bad. My only relief is from something new they have called keseo (sp) tape. IT helps immensely! It looks like that stretchy tan medical tape. It's supposed to improve lymphatic flow in the muscles. My skin doesn't tolerate it as well as it used to [itchy and blistery] so I can only keep it on a couple of days. [used to keep it on a week.]

The nerves and TMJ are extremely mild right now. My "eczema" has not reappeared since I started out gluten lite, but I sometimes get really itchy "there"

Still have the bleeding , but very rarely. Now only when I've been glutened [but not always so] Lately I've been getting a litle bit of stomach upset from Frito's corn chips, but thought maybe there's CC at the factory.

Don't think I'll be able to avoid the construction. I work at a school and I travel all over the bldg. We are on break now so my neck isn't as bad. They were adding on to the bldg on two sides. After break they will be rebuilding interior rooms. So I have 3 choices: Wait it out. Change schools [not likely because I work w/ hearing impaired kids. I go where they go.] Or as I saw on another thread one time, wear some sort of barrier mask.[ That'll go over real big w/ middle school kids ] I still need to figure out if that's really what my problem is.

Lisa

[rpf1007]

I used to think it was my job making me sick! And then I got diagnosed with celiac disease. So much for thinking my choice of career was making me physically sick!

[Lisa16]

Hi Lisa!

How are you doing today?

What you say about the chiropractic tape is interesting. There is a thread somewhere here about people who react like that to the adhesive on bandaids-- I do too. I hope that your pain will eventually go away and you won't need the tape anymore. That would be great. I used to get the most horrible migraines every couple of days. Nothing could touch them-- the best I could do was take a couple of benadryl and knock myself out. Turns out that was gluten too. Those are gone. Sometimes I feel it is like a miracle or like somebody pushed a magic button. So there is hope. And my should just burned with pain-- felt like an elephant had stepped on it or something. That is gone.

As for itching down there.... I hear you! I used to get recurrent yeast infections and the little pink pills they give you would work for a bit and then... whammo! It would be back. They said I had a compromised immune system (but they didn't see that it was caused by celiac!) and tested my for diabetes (negative!). They sat around and scratched their heads, wondering what it could possibly be. Again, it was the gluten. Not a sinlge infection in four months! But sadly the DH can get you there too. No lie.

Okay-- so maybe you can't do much about the work situation. Can you find out when they will be closest to you or when the construction will be affecting you the most and take a vacation? Or maybe you can explain about the celiac and the dust and ask to be sent to another school or another building (and have the students come to you there)? I bet they would be understanding about it. Legally, I think they have to be! Maybe it depends on your state or your administrators. My mom was a librarian/ media person in an elementary school for many years. I heard stories about administrators!

Hang in there Lisa! The great thing about this website is that you find out you are not alone and that you are not the only one who ever had a certain experience and it just takes a lot of the pain/ frustration/ worry/fear and anger away.... at least it does for me. I will always be grateful to the folks who created it and participate in it. We are our own best support.

Lisa

[curlyfries]

Oops! I don't think I was very clear! My "down there" is my tush . And yes, legally the school would have to accomodate me. I don't get vacation time because we already get all the breaks [fall, Christmas, spring and summer]. while I attend to my hearing -impaired kids, I also oversee many learning-disabled and emotionally disabled that are in the sme classes as mine. So the school's reaction would most likely be to put me in another school without hearing impaired. One lady I know could no longer physically work in the library, so they put he with severely mentally disabled kids. She hated it. I love what I do and where I'm at. Anyway, the jury is still out on whether the construction is my problem. I HAVE noticed that I have had more energy this break than ever before.[ Was never totally gluten-free before]

So it's been nice to have all this free time to take care of myself. [ Although it's a struggle because I don't get paid during these breaks] I have realized that I do need to go DF. No doubt about it now. Trying to get as healthy as I can before going back to work, then we'll see what happens.

I used to get migraines too--- YEARS ago [and only occassionaly]. I realized that they were caused by caffeine. Haven't had one since. Oops I take that back. I think the headache I had last week might qualify. I had a gluten-free rice noodle dish at a restaurant and found a regular noodle in it after I had already eaten a lot of the dish. No gastro issues but when I got home---OMG what a headache !! Never had that kind of reaction to gluten before. I couldn't imagine getting them every couple of days. My sympathy goes out to you. How long did you deal with that before you figured it out?

Lisa

[Green12]

Welcome Lisa, I'm glad you posted.

[huck-888]

Great idea on the food diary, I think I will try that too. My name is Heather, I am pretty new to this as well. Was DX Celiac last September and have been gluten-free ever sense. I have been feeling better, but still have stomach problems off and on. Have been contimplating totally giving up dairy (uuugh) but am dreading it. However, if it will help me heal I should go for it I guess.

Also, my hubby and I are getting ready to take the 2 little (one probably Celiac) kiddos to Maui. Any suggesting for gluten free eating in Hawii with little monkeys?

[curlyfries]

Well I did end up giving up dairy but it wasn't as hard as I thought it would be. [ And I am a cheese freak---not to mention ice-cream!] I actually like "rice- cream" . And it is helping. I've never been to Hawaii, so can't help you much there. But I would imagine it would be a great opportunity to try out some new exotic fresh fruits and vegetables. I'm sure someone else on this forum will have some better advice for you. Oh, and I started my food diary last Friday. Good thing too, because my symptoms when I'm accidentally glutened are changing [mostly lasting longer and D, which didn't used to be much of an issue.] The excitement never ends!

Lisa

[pixiegirl]

Hi Lisa,

I just wanted to say welcome to the forum from Cape Cod!

Susan!