tiredofdoctors

Thanks, Vincent -- I was going to get the Gluten Guard. I didn't realize that they just checked the lists. I talked with Clan Thompson people, too. They were very open to researching foods in our area, too, to include them on their quarterly updates. I was really impressed with their customer service and their quick response. Given what you said about the Gluten Guard, I think I'll stick with the Clan Thompson. Thanks for the input. . . . Lynne

BTW: Tymber's new picture is GREAT!

I think U of M would be great! I have family (in-laws -- they're great) in Baltimore. I would be game -- if nothing else, Dave could drive me up, drop me off, then come back to get me! Either that, or my son would take me up -- he's really interested in getting us all together. Also, I could take him crabbing -- we found this great place across from the Naval Academy (?). At any rate, it's on a pier that used to be the bridge across. They made a new bridge, and left this one for "crabbers"! Now I know why they sell all those chicken wings in the grocery!

At any rate, count me in! Wherever it is. ESPECIALLY if it's near Beverly -- we could have Maine Lobsters. WoHOO! I still threaten her that I'm coming up there for Lobster!

Let's start making this thing gel. I'm good at begging for free stuff -- now that I'm in the chair, I look even more pitiful (I can't believe I just said that)!!!

LET'S GET TOGETHER, FOLKS!!!!!!!!!

Thanks guys . . . I think I'm starting to get over the disappointment. My parents sure aren't. My dad wants me to go to South Carolina and have the surgery. My husband (God bless him) had a long talk with him tonight. Hopefully, my Dad got the gist of the conversation, and won't push for the surgery. My mom is sure that we're going to swim EVERY DAY, and that is going to make me better. Period. If it were my daughter, I would believe the same thing!

Thank you for all your support . . . I appreciate it so much. Give me a couple of days, and I'll be back to my silly, laughing jokester. Right now, I think I still need to absorb that I'm going to be in this stupid chair for -- well, forever. I'm pretty bitter about that right now.

My doctors are all calling this "Celiac Disease" now because of Peter Green's book. I told Karen that I want to tell them "this is NOT Celiac disease. I can tell you what celiac disease is: I have a friend who is up all night, almost every night, with diarrhea that won't quit. She has damage which may be permanent to her small intestine and she has other ramifications which may be pretty serious. Walking like a drunk, falling all the time and slurring your speech is NOT Celiac Disease."

I guess I am starting into the "acceptance" phase -- I bought some car polish for my wheelchair! I was told that I should wax it every six months. Didn't do it the last six months, because I thought I would be chucking it into the closet until someone needed it. WRONG. So, if I have to have a wheelchair, at least I want a nice one. It is kind of pretty. It's candy-painted Teal. I just bought some flashing stars that kids put on their bike spokes so that at least, if I have to have it, it can have some "flash"

Okay, I'm getting into the really bad jokes now -- will have to go. Seriously, thank you all again -- so much. You have turned out to be not only great support, but great friends. I appreciate each and every one of you. . . . . Love, Lynne

I am SOOOOOOOO happy with my little bulb-garden! I have the most beautiful tulips blooming right now, and the muscari (grape hyacinths) look so CUTE! The daffodils, crocus and snow-bells are finished blooming, and the hyacinths are starting to dwindle, but even a neighbor across the street and a few doors down came by to talk and told me how beautiful our front looked! That is really exciting. I feel kind of bad, though -- my SIL and I went in together on the bulbs to get a better deal. She divided the bulbs, so it's NOT MY FAULT! We were talking about the hyacinths -- she got only white ones. I have two white, one yellow, one pink, one lavender, and one deep blue/purple. It appears that I got all the colored ones!

I'm now going to plant my summer bulbs -- Asiatic lilies, Sumatra lilies, calla lilies, a yellow peony, plumeria and freesia. Wish me a green thumb! Lynne

No good news, guys. I do have a Chiari Malformation. I have a 5-7mm descent of the left cerebellar tonsil through the foramen magnum. The neurosurgeon, though, said that he doesn't think that it has to do with my ataxia. He thinks that it's solely due to the gluten damage.

He said that, because I have cerebrospinal fluid circulating throughout the cerebellum, there is no compaction of the brain -- that is when you are a surgical candidate. He also said that articles tend to portray the surgery as easy -- and compared to removing a malignant tumor, it is. He said that it is no surgery to be taken lightly. He said that I could doctor shop and I would find someone who would operate. He also said that the risk of surgery doesn't outweigh the benefit. He said that, in one situation, the woman ended up with ataxia like I have -- due to an unusual amount post-surgical swelling and complications. He said that if I had surgical complications, he hates to think what would happen to me. I know and respect this surgeon. I don't even feel the need to get a second opinion.

I am pretty bummed about this. What it means is that there is no way my condition is going to change. I had looked to this man as my "knight in shining armor" who was going to wisk me off to the operating table and make me the person I was two years ago. Not going to happen.

I need to work now on resigning myself to living with the abilities I have. I think I'm going to call my counselor for a few more sessions -- need someone objective to help me figure things out. Not doing very well right now, but it's the same day that I got the news. I know tomorrow will be a better day . . . . and the next, and the next and the next . . . .

Thanks for your prayers and good thoughts . . . Now, if you don't mind, I need prayers for the "serenity to accept the things I cannot change" . . . . and for G-d to show me my path. I feel as though the bread crumbs I left have been eaten . . . and I just don't know how to get back -- but I'm not supposed to go back, I'm supposed to go forward, with different abilities. I just don't know the path . . . .

Sorry for the long post. Thanks for listening (or reading). Love, Lynne

Hi Moongirl -- I'm so sorry that you're going through this. I have been gluten-free for 8 months now. I still have difficulty with the struggles. Birthdays are AWFUL for me. Our family is huge on the celebrations, and there is nothing made for me with regard to the cake and ice cream (dinner is definitely made gluten-free for me). Still, though, it's very difficult not participating in the cake & ice cream thing. I feel like odd-man out. I had a particularly low period just a few weeks ago . . . and the support and love that came from the people on this forum was nothing less that amazing.

What I can tell you is that this is the place to vent, and to get all those feelings out. The friendships that I have developed through this forum are priceless. These are the finest people you will find, and the most supportive available.

I was always a "no forums, no support groups . . . . " type of person. I thought, because of my experience administrating an arthritis support group, that it was a "whiner" option. The one that I administrated may have been that, but nothing is farther from that than this forum. Yes, it is the place that you can vent all the emotions that you won't tell your spouse, family, etc., and to get emotional support. But also it is the place to get very valuable information about this disease, coping mechanisms, alternative diet choices, and an unbelievable amount of information regarding diet, weight, restaurants, cooking -- you name it. The people on this forum are the most pro-active that I've met. They are determined to take control of their health, and are more than willing to share their victories and defeats with their trials.

Please know that you are not alone. I think that all of us have gone through the place where you are now. I do believe that it is part of the grieving process, and part of accepting that, for whatever reason, this stupid disease is here to stay with us. I am sending you {{{{{hugs}}}}} and prayers. Take care of you . . . . Lynne

I had an elevated IgA, too. I had "outrageously high" IgG antigliadin antibodies (per my neuro doc) for quite some time; since being gluten free, my IgG's have gone down to 12 (only 1 over normal range), and My IgA is within normal limits now. I've been tested for RA, Lupus, everything -- don't know if there's a special test for Sarcoidosis that they've missed, but my Sed rate is consistently low, so I don't think that it's an issue. The doc said that he's REALLY HAPPY with my levels, and that it is a testament to how strict I've been on the diet because of the prior values -- made me happy.

I haven't been able to get a clear answer about IgG vs IgA -- but if I find anything, I'll let you know. The bad storms we're suposed to get tonight are starting up -- better disconnect my computer..... Talk to you guys soon . . . . Lynne

Thank you so much. With all these prayers, surely the doctor will have such POWER! Love, Lynne

Thanks, guys! I'm afraid that if this isn't the answer, though, the poor doctor is going to have to deal with a bawling, disappointed patient! He's a really great guy, though -- I've worked with him -- and he is my sister's hero since her surgery. I'm going to tell him first thing that if he can fix this, he'll be an even BIGGER hero to me!

I'm going to see a neurosurgeon on Friday. There is a chance that I have an Arnold-Chiari Malformation. In absence of gluten ataxia, this would be a diagnosis that I wouldn't want. However, if I have this, which is a congenital deformity, IT IS FIX-ABLE!!!!! It's a pretty easy surgery, as far as brain surgery goes. My neurologist, whom I respect SOOOO much (he was my mentor in PT school), is having Seder meal with the neurosurgeon I'm going to see as I write this! His wife is taking my medical records to his house!

I think it would be so great if this is fix-able! I might be able to walk again without ANYTHING!!!!!!! Please keep your fingers crossed, and if you're spiritual, maybe say a little prayer for me?? I would appreciate it. I'm trying NOT to put my eggs in one basket, but I am really looking for this to be the answer -- I hope that I'm right! Will let you know . . . . . . Lynne

Beverly -- my husband just did the same thing! He has been gluten-free with me (pretty much exclusively), has a little gluten now & then. He went to Buckheads for lunch today -- don't know what he ate, because he came in clammy & sweaty, with body aches. He said that, about an hour after lunch, he started with the big D that didn't stop. He's NOT celiac. I think it's pretty interesting that gluten can do that to him . .. . .

Sorry about the bagels, radman. We have a small deli that makes the BEST bagels! I don't even go NEAR that shopping center anymore! The news about M&M's for breakfast: My sister-in-law, who does research at the VA hospital here, decided to find out the value of eating almonds to lower cholesterol. So, instead of her usual morning breakfast of M&M's and a Coke, she changed to Almond M&M's and a Coke. Lowered her cholesterol 22 points in 1 month! She changed absolutely nothing else!!

My husband found gluten-free summer sausage at our Liquor Barn -- it's a chain, so I'm hoping that they have it in your area. Just to be on the safe side, I don't eat ANYTHING that isn't labeled Gluten-Free, and I also look for the "warning for cross-contamination in the factory" thing. If so, I typically don't buy that, either. Hope it helps . . . . Lynne

I'm sorry you're having trouble staying on the diet. I can't offer you any pearls of wisdom -- I've only been gluten-free for 8 1/2 months now. I'm not the expert. Also, mine is a little different. I was told that I have no choice, as the gluten is destroying the cerebellum of my brain, and my retinas. I can continue eating gluten until my brain has difficulty regulating my ability to breathe, swallow and see -- it's my choice. Given that, I choose to be gluten free!

I'm with you on this one. My neuro doc drew an ataxia panel -- we got a letter FedEx'd to us by Athena Labs that stated they didn't know what the insurance was going to cover, but if we wanted to lock in a 20% co-pay, we could pay $1,299 by Visa, Mastercard, Discover or check by phone. If the insurance covered more than the 80%, they would refund the difference. Sure, let's go ahead and do that check by phone! I called today to cancel the testing. I don't know if I need to know that badly what type of genetic garbage caused gluten to screw up my brain.

Sending lots of prayers and hopes for information that let's the docs get you out of pain. I hope you feel better very soon. . . . .Lynne

I'm popped in! I live in Kentucky -- and evidently sound like it, as well (so I've been told ) I told that to my son -- he was howling laughing and reminded me of what hick I sounded like when I was little!!! At least I've TRIED to northern it up, but it's futile. I live in Louisville -- we wear shoes, have indoor plumbing, go to the dentist regularly, etc. And we do have our share of rednecks -- in some parts of the outskirts of our city, bright blue eye shadow is a staple.

That being said, we do have a great convention board, lots of good hotels, and some pretty cool things around here. However, I may be just too far away -- maybe we do need to be more centrally located. B-man would still love to be in on it -- he is like Super Gluten-Free Man! He has become such an advocate. His support and determination to help have been unbelievable.

I'm using my hubby's work laptop tonight -- he went to bed with a sinus headache and I said, "Oh, I hope you feel better -- can you connect me to the internet first?" He thought my sympathy was feigned, at best!

At any rate, I'M IN -- WHEREVER IT IS. If I have to wheel my fat butt there myself, I'll be wherever it is!!

Okay, I'm back for a night -- have my husband's work computer. PM'd radman with my gory details. Have a few things to add to this post:

1. Who is that Alan guy?

2. I think that gluten intolerant people should all take life with a grain of salt -- and a slice of lime and a shot of tequila.

3. Yes. Radman has earned the right to find out about the altoids -- but for God's sake, would whoever tells him about it PLEASE pm him so that we don't get into the trouble that we did previously? And Karen, DON'T tell him during a full moon!!!!!!!

4. What do the replies that are only what appear to be random letters mean? I'm not internet savvy, and therefore don't know all the abbreviations. Maybe I don't want to, given some of the responses I've seen over the past 11 months!!!!!

5. Kati -- WELCOME BACK!!!!!!!!!!!!! We have all missed you a LOT!

6. Some of the gluten-free food tastes like crap. We all know that. BUT, if you listen to the forum members enough, you don't have to learn that by experience!! It makes living gluten-free much more palatable.

7. On a personal note, you guys are the greatest . . . . . . . . . . . Lynne

Okay, this is WAY too weird. My son asked me today if it would offend me if he organized a convention here for all my gluten-friends on the forum. He said it would be a get-together with nothing but STRICT gluten-free food (he is an EXCELLENT cook), and he wanted to get as many people as he could to get together. He wanted ideas for getting something started. I'll ask him if it's okay to publish his e-mail address, and if you want to start giving him ideas, he'll get the ball rolling. He was so jazzed about the idea. Weird that it happened the day that I get to use the computer and see this, huh? (Actually, it kind of freaked me out when I read the title -- it was that "goosebumps" moment -- think "Twilight Zone" music in your head!)

Welcome Kessea and Stardust Valerie! I know you will be so happy that you found this forum. I have not had my computer for awhile, and I didn't realize how much I relied on this group for support, information, lots of laughs, you name it! This is a group of truly amazing people. Just wait, you'll see . . . . . ! Lynne

Thank you ALL for the kind words, prayers, thoughts . . . I'm O.K., I think, I'm just really weary. As I write this, my DH is in the kitchen, doing dishes and cleaning -- and never complaining. I just want this to go away. I begged my doctor the last time I saw him to make it go away -- while sobbing. I'm just too young. It's so hard to keep to keep a happy face on for everyone else. They all want to know that I'm okay with this -- and they want the old me. I have always been the person in our family (even in our extended family) who is the happy face person -- I am the comic, the clown, the one with the self-deprecating humor that settles hot tempers down and brings up poor spirits. This has been my role & function in the family since I was tiny. (well, I was NEVER tiny, but since I was very young!)

I bought this set of Revlon hair extension things after Christmas. One was a pony tail (my sister and I call it a "phoney-tail" ) I pulled my hair back and wore that to my parents' house. My dad said, "You look great. That looks great on you -- you ought to wear that all the time!" I told my husband, it's because it's what I USED to look like when I was healthy. He wants to see that. I can hardly stand it when my dad cries when he sees me walk. Or when my mom has to say, "Now, you know she's going to be O.K.", trying to convince him, when she doesn't believe it herself and she's crying. I won't go to my parents' house when I'm walking really badly. They don't know exactly how bad it is. My mom saw me walk one time the way I usually walk, and she had this frantic cry -- it was in front of my aunt who had to hold her. She just kept saying "they have to help you! they have to help you!" And my mom isn't like that . . . she's the Rock in our family -- she's the one who says -- "I KNOW you're going to be okay -- we're all going to see to that."

I REALLY hate it that my sister thinks that I have "conversion disorder" -- when a traumatic event causes you to have physical symptoms. I don't think that "traumatic events" can cause you to have anti-gliadin and anti-perkinje cell antibodies, nor sjogren's syndrome. If that was the case, I would have had these a VERY LONG time ago. She wants me to go to a Neuropsychiatrist. I asked her was it not enough that I go to a shrink for my ADHD meds, and SHE says's it's not conversion disorder, that I was evaluated at the Mayo Clinic by THEIR psychiatrist, and HE said it's not conversion disorder, that I saw a counselor for 6 months when I was first disabled to help me with the transition in my life, and SHE says it's not conversion disorder.

I think my sister just wants it to be something that will "go away".

I think that I'm really just weary right now -- I have battled this staunchly for four years now -- the last two with the neurological symptoms -- and I'm tired. I'm not going to do anything severe, nor permanent. I've been that low before because of my thyroid (see, again because of a doctor with cranio-rectal inversion), and I'm nowhere near that low. I'm just battle-weary.

I think that you guys are the greatest. I am so blessed to have friends like you -- friends that when they say, "I understand", they do. And, friends who don't dismiss that I DO sometimes have really awful feelings about this stupid disease, and who don't "gloss over" those feelings. This forum, and it's allowing me to meet all of you, has been such a Godsend. I don't think you know how much I rely upon you -- for information, for a "sounding board" for ideas, for giving me a sense of worth -- that I might be able to contribute to something, and for being able to laugh -- sometimes quite a lot (think: Altoids) -- and even laugh at this dumb disease. Again, I think you are the greatest.

I'm going to have to drop my computer off at the IT place that Toshiba uses for its extended warranty repair -- and the "gentleman"(?) with whom I spoke told me to expect "at least two weeks -- probably three -- I'm backed up" (him and me both just a little humor for those who know), so I will be absent from my connection to the outside world for awhile -- not gone, just repairing. (I don't know why, but I got this picture of the Wizard of Oz characters when they were finally at the Wizard's palace -- I feel like the scarecrow getting new stuffing -- although my favorite is the Cowardly Lion). So, in about three weeks, I can click my heels, and come back "home". I'll talk to you guys then. Until then, take care, and if there is any talk that could possibly cause trouble, get someone kicked off, etc., save it for me so that I won't be out of the loop! I love you all . . . . (((((((((((((((((((hugs)))))))))))))))))))) Lynne

I hate that everytime I go to the doctor, I get another autoimmune diagnosis.

I hate that the last doctor I went to said that this disease was going to kill me, regardless of whether I was gluten-free or not.

I hate that I HAVE this disease.

I hate that the doctors won't do the genetic tests so that I can tell my kids whether they need to be tested.

I hate that I can't walk a straight line.

I hate having to explain all the new bruises to my husband, and the look on his face when I tell him about the falls that I had.

I hate it that I can't work.

I hate it that people stare at me if I don't use my wheelchair and just use my walker.

I hate it that I don't have the energy to go to the grocery with my husband.

I hate it that my husband, who works 10 and 12 hour days, has to come home and do the laundry, dishes, and everything else because I am basically worthless.

I hate it that my daughter resents me for having this awful disease.

I hate not wanting to go anywhere, do anything, or see anyone.

I hate having to figure out which medicine I've taken when, and which medicine I'm supposed to take next.

I hate it that my left eye already needs cataract surgery because of all the prednisone I've had to take.

I hate it that I can't get out of the bathtub by myself, and if I try, I fall, bringing down the curtain rod and everything else in the room.

I hate it that I am isolated in the house 99% of the time.

I hate it that I play "catch as catch can" to get my doctors to coordinate my treatment.

I hate it that I can't find anything positive to say about me anymore.

I hate it that I don't even know whether anything is worth it anymore.

celiac disease survivor: where in Mexico do you get your vanilla (and if you're in the states, like KY, HOW do you get it??? ) and how do you make your vanilla syrup -- just the beans, water, sugar -- like all syrups??? Thanks for your help! . . . . Lynne

I had asthma as a kid -- it went away around age 19. I had a fire in my bedroom (a candle overturned while I was sleeping -- awoke to a fiery bookcase and wall -- I stood over the fire, extinguishing it with a blanket, opened my bedroom window, but continued to sleep in the room that night. Ended up with thermal burns in my lungs from standing over the fire, and chemical burns from the cyanide gas that developed when my cordless phone burned. (The MD checked with the fire dept. about the type of plastic which was burned) Was REALLY sick for several weeks -- the blisters inside my lungs kept popping and filling my lungs with fluid -- the pulmonologist said that that was "the first hurdle" -- to get that under control. The second "hurdle" was to hope that the asthma didn't return -- that it was very common for that to happen. Boy, did it, and with a vengance. It's worse than when I was a kid.

Instead of going to a nutritionist, perhaps you could try going to a registered dietician. I found one in our community, and she was highly knowledgeable. In fact, she just sent more follow-up information to me yesterday. She spent 2+ hours with my husband and me, and gave me a lot of valuable information, free samples of things that she had picked up at a forum, and I'm now doing a daily dietary intake information sheet for one month so that we can have a follow-up. She is coordinating now with my endocrinologist to receive the information she needs to modify my diet according to results of new testing, and to boot, she only charges $75.

I was very happy with the results, and would recommend that you look under dieticians vs nutritionists -- then interview them with regard to their experience with celiac. It really worked for us.