tiredofdoctors

I agree with Tiffany with regard to getting a good employer. When were you eligible for COBRA? It is a continuation of insurance coverage -- which the company is mandated to offer by the government. You can stay on that (you have to pay the premiums yourself, though) for 18 months, I believe. If you have no lapse of time in between insurance coverage, the NEW insurance company cannot deny pre-existing conditions, and cannot have a pre-existing illness clause to make you wait however many months before covering those conditions.

If you have not been able to do that, then I would certainly tell your husband to look into working for a larger company. Small companies simply don't have the buying power it takes to get coverage for persons with pre-existing illnesses. Larger companies do. You may have a waiting period before the conditions are covered, but they will usually be covered.

Good luck to you . . . . it will work out.

Lynne

Wow, your numbers HAVE gone down fast. That's fantastic. I agree with Ursula about getting tested for Milk & Casein antibodies. I was at the allergy/immunologist, and he tested for milk & casein ALLERGIES, but not antibodies. I told him that I would like to have the ANTIBODIES tested. Haven't gotten much response, but am going to keep plugging!

There's a difference between an ALLERGY and having ANTIBODIES. Be very clear which your doctor is testing. Skin tests are for allergies, and they tell you what to avoid in order to not have an allergic reaction. Antibody testing is usually done by blood test and will tell what your body will fight like the devil if you ingest it. With regard to genetic testing -- I have just had the greatest experience with that -- I would recommend seeing a geneticist at this point. They told me that the average person has seen 9 other doctors who told them that "it's all in your head" before they get to them. Bypass the other 7 and see a geneticist!!!

I am really happy for you that your numbers went down so quickly. That is amazing. Good luck to you with your continued medical "journey". You're doing the right thing. Good luck to you . . . keep in touch

((((hugs))))

Lynne

I would agree with EVERYTHING everyone is saying. Get the test. Go into the office and insist on it. Be firm. They won't like it, but I bet they'll do it.

I was treating a patient -- she was new -- and she had low back pain, sacroiliac dysfunction, etc. She wasn't able to come back for a week, because she and her family were camping. When she did come back, I asked her how she was feeling. She said that her back felt better, but she was SO TIRED and it just seemed like ALL her joints were sore. I was putting heat and electrical stimulation on her low, low back (!), and I saw a tick about 1" above her butt crack (sorry). I KNEW it was a tick, but I casually said, "Do you have a mole really low on your back?" -- I knew she didn't, because I had seen her the week before. She said that no, she didn't, and asked why. I said, "Well, I'm pretty sure that you have a tick on you and it's pretty large." She started screaming "Get it off! Get it off!" Since we're licensed to do scalpel debridement in our state, I figured I was O.K. with removing it. Prior to that, however, I had my secretary pull up Deer Tick, Lyme Disease, etc.

It was FOR SURE a deer tick, but it was engorged. The picture of one that had been on an animal for a week looked the SAME way on the internet. She also had a bullseye rash that was also a little "blistery" or "bumpy" looking in that area. I got the tick off (that sucker was VERY reluctant to come off), and then had to find a pcp for her. She didn't have one. I was fortunate that I was able to get her into a GOOD MD office, and even though they tested her for Lyme, they immediately started her on the antibiotics. They said they knew it was going to be positive, and there was no need to delay. They were right.

Go with your gut. If your PCP won't test you, find one who will. It's really important. You don't want that lingering around -- it is NOT good.

Good luck to you . . . . . Stay tough!!

Lynne

Lynne,

Hang in there. You know, beyond every dark cloud.........there is a rainbow!!!! Let's go find one.

Lisa

Hi Lisa -- It's GREAT to talk with you again! I'm up for finding it!

You couldn't have a rainbow if you didn't have the rain!!!! It's been kind of a bad week, (okay, it's been a LOUSY week, but still) I am so blessed. I know that things are going to be fine. There's a plan for me . . . just haven't found it yet. It's like a big treasure hunt!

Love,

Lynne

I had a constant sore throat (without the ear pain, though), and got hoarse a LOT. Ended up that I had Gastro-Laryngeal Reflux. Instead of just burning my esophagus, the reflux came all the way up to my larynx. I did 90 days of Nexium and a kind of limiting diet (the no chocolate thing was the worst part), but haven't had much problem since . . . .

Lynne, you still have to tell jokes .... but when you're not feeling well, it's your turn to let us cheer you up, it's not time to hide. We ALL get down sometimes! You don't have fair-weather friends here who only want your jokes!

Thanks, Carla. Don't worry, I'll still tell jokes -- it's part of my "being"!!! That, and having trouble simply follow me wherever I go. . .

But, from now on, if something bad is happening, I'll say so. Not a LOT, mind you -- can't do that -- but a little.

But if they knock this house down???? WOOOOOOOOOOOOHOOOOOOOOOOOO!!! Are we gonna celebrate or what?????!!!!!!!!!

I love it when there are those huge, beautiful snowflakes, and they're coming down especially in a parking lot, because the lights just highlight their shapes. Of course, where I live, the snow is usually gone the next day -- or replaced by ice. But hey, for one brief shining moment there was Camelot!!!!! (tried to Google if that's right, but got tired of looking!)

Yeah!!!!!!! He'll be home for the holidays!!!!!!!!! You know, it's kind of goofy, I guess, but every time I see a service-person whether in fatigues or uniform, I thank them. Some of my friends look at me like I'm nuts, but I kind of don't care. They deserve our thanks. And our prayers. I'm so glad your husband gets to be home this year. Tell him I said "thank you. VERY much." My cousin's son (he's still my "baby-boy"!) is in Iraq right now. Don't think he'll get to come home this year. Last year, he told them that he wanted leave at Thanksgiving so that he could go to my mother's for her huge dinner. It's so weird to hear such a young sounding request coming from this person who has grown into such a fine man. It was great.

Also, even though I don't HAVE one, I think Labs are fantastic dogs! They're smart, loyal, friendly, goofy and very, very snuggly! My sister had one, and my mom taught it as a puppy to give hugs! It was so funny.

Sending all kinds of good wishes your way for a fantastic holiday. I'm so happy for you.

Love & Hugs,

Lynne

Happy Birthday! Sounds like it's going to be a good one! CELEBRATE!!!!!!!!!

Love & Hugs,

Lynne

And, I'll DEFINATELY be there if you get a new house!!!!

We'll have a gluten-free margarita toast!!!!! Wouldn't that be GREAT??? I would love it if I could see all my friends from the board. How awesome would that be?

Lynne,

We are all here for each other. Thank you for sharing.

It's ok to not be the one who makes the jokes all the time.

Andrea,

Thank you. That is a gift. My role and function throughout my life has been to be the peace-maker -- to make everything alright. And I do it through jokes and diversion. Thank you for the gift of not having to do that always.

Love & Hugs,

Lynne

Oh my gosh. I don't know what to say. Thank you SO much, EVERYONE. I have read this thread, and just sat here crying.

I held back telling all the things this stupid disease has caused, because I didn't want to place my burdens on anyone, and I didn't want to scare any newbies that would read it. Also, everyone is struggling so hard with their own manifestations of this disease -- some are fighting SO hard -- that I thought I needed more to be supportive than disclosing. Somehow, I think maybe I need to apologize for that. I had my "Susie Sun Sparkles" mode on, and simply shut out the part of me that is struggling. That has been my "MO" for a lifetime. When you don't hear from me, you know things are bad. I have a friend who, if I haven't talked with her, will say, "What's wrong? What happened? I haven't heard from you in three weeks." I just go into my cave so that I won't burden anyone else with what's happening. I think it stems from my dad's family -- they all wanted EVERYONE to know EVERYTHING that was wrong with them. I really didn't like it. I decided early on that I wasn't going to be like that. I guess I went overboard, huh?

I can't thank you enough. I just don't have the words to say how grateful I am and how overwhelmed that you guys would do this. I often tell newbies that they will never find a better group of people anywhere -- boy, am I right.

You are all amazing. I can't fathom that, with all you are all struggling with, that you would take time out to do this for us. I am so blessed. I have had the best people sent to me. I used to believe in coincidences -- I've kind of ruled that concept out. I think that people are sent to us for a reason, sometimes to learn a valuable lesson, sometimes to be able to help them, but this? This is beyond what anyone could ever believe or expect, much less ASK for. Thank you from the bottom of my heart.

Dave and I are filling out the papers (rough drafts) today, in fact, have already started making our revisions. I can't imagine having a home that would be accessible! Wouldn't that be GREAT????!!!! I could cook again like I used to (I have so many gluten-free recipes I want to try). I could take a BATH whenever I wanted to. Although Karen sent me -- VERY early on -- a handrail that has been a lifesaver. Literally. I was getting ready to fall backward, grabbed the rail, and was able to not hit my head on the tub or wall. Isn't it AMAZING that she would sent that to me? She barely KNEW me and yet, she sent it from CANADA, no less. When I think of the possibilities that having an accessible house would have, I get shivers! I could SCRAPBOOK again! I have my Cricut machine that I haven't even gotten to USE! I could make the wreaths, door trees, centerpieces again that I used to donate for the Festival of Trees and Lights for Kosair Children's Hospital -- they would get BIG BUCKS on my stuff -- go figure! I would love to have a room that is handicapped accessible -- that is big enough that I could have people who are handicapped come in and we could all scrapbook. The stores around here just don't think about that kind of stuff. It would be so NEAT! I could make my jewelry again -- I used to donate that to charities, too. I still have the findings, the semi-precious stones --- would that be AWESOME or WHAT? I could have kids come in with their parents -- I have so many kid craft things. They could just come in and have FUN! There would be ROOM for them! The possibilities are endless. There would be so much I could do to help other people who are struggling -- if only for a couple of hours, make their lives a little more fun, a little more light. I HAVE all the stuff! Goodness knows I'm a hoarder.

Also, I could make Dave's life easier. He works so long and so hard at his job. They have had some real changes in the past two years -- a lot of them very good -- but he was promoted to a management position and there are some real up-sides; the down-sides, though, are that he has a LOT of pressure placed on him to make sure his staff is on-task and he is working much longer hours. Then, he has to come home, arrange for SOME kind of dinner, do the laundry (he gives me the baskets and I fold!), wash the dishes (we don't have a dishwasher), take care of the cars, my wheelchair, the maintenance of the house (I used to be the handywoman of the house) and the outside of the house as well. Then, we go through the mail . . . can't tell you how much medical we just wince at when it comes in. And yet, he does it all without complaining. He tells me that I contribute to this home simply by living here. Can you believe that? He is so amazing. I would love to be able to take all that off his hands. For him to be able to come home again to a meal that I've cooked -- especially his favorites -- Oh my Gosh! He would be SO happy! I would love for him to be able to do the things that he likes to do -- but doesn't have TIME to do now. I would love to make his life better. That would be the greatest gift of all.

I know that I rambled on (and on and on), but I am so EXCITED about the idea of this! Oh the possibilities . . .

You guys are simply the BEST. I can't thank you enough, ever. I am so grateful and so thankful. We'll send this in and see what happens, huh? Maybe they'll bring you guys in so that you can watch them knock down our house! If that was the case, I wouldn't want to go ANYWHERE -- I'd want to stay HERE to be with you!!!!!!! We could have gluten-free-Fest!! We already know that there is SO MUCH room on the build line that hasn't been used -- they could knock this sucker down and build a house that in that I wouldn't FALL all the time! I can't imagine -- a life without BRUISES? (I think the bruise count today is 182)

Thank you so much. You amaze me. And Armetta -- well we all know how amazing she is. I am just so blessed and so grateful that she chose to be my friend. I wish everyone could meet her. She is more unbelievable in person than she is on the forum. She is beautiful, funny, witty -- with a GREAT sarcastic sense of humor sometimes -- especially when she's trying to help drag me out of the shower -- and yet she is so compassionate, so giving and so genuine. What you see is what you get. And what a gift that is. Metta, didn't even know you had started this thread until you told me about it. What can I say to you? There are no words to express what I'm feeling. You are simply the best.

Love and Hugs,

Lynne

Just wanted to let you guys know . . . . Metta broke her arm earlier this week. Because Arizona is getting ready for the "snowbirds", doctors are taking vacations, etc., and she still hasn't been able to see an orthopedic surgeon (they want her to see one that specializes in elbows). IF she has to have surgery, they told her it would be "when they could squeeze her into the schedule". Her advice, don't f***ing retire to Arizona!!!

Therefore, she won't be able to post, answer PM's e-mails, etc... She's having a LOT of trouble with trying to type.

If you want her address, PM me and I'll send it to you . . . . .

In the meantime, though, she needs lots of hugs and prayers sent her way . . . .

Love & Hugs to all,

Lynne

ah, Nikki, I'm so sorry about Felix. I hope you and your family start feeling better soon. Love & Hugs, Lynne

Karen, Buddy isn't THAT stupid -- not quite, anyway!!

Leave it to my daughter to get me a grand-dog who isn't a good faker . . . hmmmmm . . both my kids were!!! Just kidding, Ash. Actually, Bella is a very sweet little dog. She is definitely a keeper! She's pretty funny. If I talk really softly to her and call her over, she comes over like this sweet little thing, and I'm petting her. My mother's dog -- who obviously has ADHD -- has to butt in and NOT subtly, comes running up, bumps into Bella, and all of the sudden Bella, who formerly was this quiet, soft baby, turns around and makes this "unusual" growling noise!! It is HYSTERICALLY funny!

My favorite part about her, though -- she's part Shih Tzu -- and she has this great underbite! It makes me giggle when I see her. Because of it, Ashley has to brush Bella's teeth -- and Bella LOVES it!!!!! I think that is so funny -- not that she has to brush the teeth, but Bella loves it!!!!!!!

Karen, your Nickie and Cinci story made me cry . . . that is so sweet. They really do take care of each other, don't they?

Congratulations and good luck, Carrie!! Hope your computer is up and running soon so we can hear about your adventures!

Have to watch myself -- my daughter is now on the forum But, her screen name is "the princess" -- giggles allowed, my friends -- but you can ask HER about what goes on at band camp!! She may be a little less forthcoming with info, as well, though . . . . . xxxooo Lynne, who now has her computer back

Hi Kathy Ann . . . . would like to give you some good news with regard to my neurological status, but unfortunately, I have not found any improvement in symptoms since going gluten free. Oddly, my laboratory said that they didn't have the capacity to perform DQ1 (why I don't know), so I don't know if I have those genes.

I did have "first high, then outrageously high" antigliadin antibodies according to my neurologists. The ataxia and other symptoms that I have is caused by destruction of the Perkinje cells in the cerebellum of the brain. The cerebellum is "command central" for all aspects of bodily functions. Everything routes through the cerebellum in order to coordinate activity.

The good news is, however, that I have had two check-ups (three months apart) in which I have had no progression of my disease! Yaaaaaaaaaa! So, the gluten-free diet is working.

My suggestion to you is that you continue to adhere STRICTLY to the gluten-free diet. If there is destruction of the brain, to the best of my knowledge that will not improve. Perhaps some of the peripheral nerves (the neuropathy) may heal . . . it is very slow, as they heal at a rate of 1 mm per week. This depends upon the amount of damage that has been done. Every study, article, etc. that I have read indicates that at this time the key to controlling the neurological aspects of this disease is a gluten-free diet only.

I wish the best of luck to you . . . just remember "Gluten-Free, Gluten-Free, Gluten-Free . . . ."

xxxooo

Lynne

I went to my neuro, and he said that my antigliadin antibodies were slightly elevated (only one over normal). This is also very frustrating, though, because I haven't cheated ONCE since going gluten-free well over a year and 1/2 ago. I realize that one over isn't NEARLY as much as it was, but it scares me that one over will still do more neurological damage -- however small.

The neuro doc said that his impression is that once you have these antibodies, regardless of how strictly you adhere to diet, you will still have some elevation -- for life.

Has anyone heard of this? I would think that, if you adhered to the diet without compromise, you should be able to get the antibody level down to within normal limits. Any help you can give would be GREATLY appreciated.

xxxooo

Lynne

I'm a little confused. Wasn't it Roy Rogers' horse that was named "Trigger"??????? Gene Autry's horse was named "Champion" (he called him "Champ). Full moon and all . . . . . . .

mamaw -- it's cold comfort to know that someone else has the same problem with regard to the 'no pooping' issue! Sorry about that . . . .

It's just so hard to eat -- it feels like there is absolutely NO ROOM. I think my breath smells puky all the time, but right now -- the taste in my mouth almost makes me want to throw up.

Dave brought me home some rice cakes, since I can't have saltines. I ate a few of them, and I feel LESS painful than I did -- a little. I just don't feel well.

As far as Columbus . . . . SEE YOU THERE, BABES!!!!

Isn't that the truth????? She has her endoscopy on Wednesday at 11:00. I'm gonna be there, because I want to hear it STRAIGHT FROM THE SURGEON if those villi are flattened!!!!!

It would make ABSOLUTE sense, though, as to why she is having so much difficulty. She is pale, she is RAIL thin, she swears she's eating, not purging, and her husband backs this up. When she is at my mom's she is always "grazing" . . . of course, on all things gluten-filled!

Should be interesting to see how this plays out. I SERIOIUSLY hope it's "only Celiac". Funny -- two years ago, I would have FREAKED OUT if I found out my daughter had Celiac!

Thanks, Ursula . . . . at least I'm not going crazy!! (much)

Thanks, Spunky . . . we're glad you're here. ANYBODY WANT TO ARGUE WITH THAT????????? Bring it on . . . . .

Lynne- I cannot wait for the full moon. I am going to howl, wail and scream like a banshee!!!!!!!!!!!!!!!!!!quote]

I'm with ya, Sister!!!!!!!

You can practice and get someone's notes on the lecture later.

ROFLMAO

That is hysterically funny!

And the LAPTOP??? Nooooooo . . . . .

Pedicure? Yes. Toenail Polish? No. Enough Said.

The look on your wife's face when you tell her that you can't go away on a romantic weekend with her because you'll miss the Celiac Forum's full moon extravaganza . . . . . . . . priceless.

OMG -- BEV -- just saw your Avatar --- You are AWESOME!!!!!!!!!!!!!!!!!!!!!

Welcome Julie! It IS overwhelming at first . . . and as someone else said, sometimes on a daily basis, as well!!!!

I got caught up in the whole supplement thing with my GP -- he was a big believer in naturopathic medicine, but he was really running a racket. We have since found out that he has opened yet ANOTHER clinic, in another town closeby, under a DIFFERENT name. This is the fourth one he has opened in as many years. Makes you kind of wonder, huh???

I was spending a LOT on supplements from him. I finally found a regular ol' GP, went to a dietician, and SHE told me, according to my lab values, what she recommended with regard to food choices, and sent me to FREEDA Vitamins. They're EVERYTHING free!!!!! I've been very happy with all the products which I have ordered.

Have you gotten a "Newbie" kit yet? Nini (Nisla) has put together a fantastic kit for people newly diagnosed . . . I don't know what link it is, but I KNOW the others who have posted here do!!! It will give you a really good beginning with regard to going gluten-free.

Good luck to you . . . . like pixiegirl said, this IS a great place for info and support . . . . sending ((((hugs)))),

Lynne