tiredofdoctors

I've been denied housing because of it. No joke, and this happened a few days after I was diagnosed. I was paying for a room from the 1st of May and arriving on the 12th late at night and the jerk that ran the place wanted me to spend a night in a hostel and check in the next day. I called and sent her an email stating that with chronic fatigue and my gluten free diet (= many hours in multiple grocery stores finding food) there was no way I could move in on Saturday and get everything done by the time I started work on Monday, so I would like to have a friend pick up my key a week early and stay in the room (you don't want to be walking around honolulu after dark if you're obviously from out of town, safety precaution).

She then returned my deposit and said I was being too difficult. I'm still trying to decide if I should create hell for her with the fair housing office when I get there.

That is OUTRAGEOUS! I would create hell, I think. What a jerk!

mmaccartney: I have gluten ataxia. There are sites (mostly because of studies done in the UK) that can explain it better than me, but here goes: there are proteins on the Perkinje cells of the cerebellum of the brain and the retinas of the eye that are extremely similar to gliadin. They rely on gliosis for their maintenance. With gluten ataxia, the body mistakes these cells for the same cells that are in gluten. Therefore, when the antigliadin antibodies are elevated, the body just starts attacking everything, including the Perkinje cells and subsequently destroying them. Because of that, the cerebellum doesn't get a fluid stream of information in order to coordinate (basically every part of) the body. When you're drunk, the alcohol affects your cerebellum -- hence, you fail the drunk test. I can't even stand with my feet together now. They tried to have me close my eyes and put my hands out in front of me at the doctor, and they caught me right before I hit the floor. It's started affecting other things too (I just posted a topic about hating this disease that has a lot of what's happening to me). I fall ALL the time, can't drive now, am in a wheelchair, etc. etc. The really ironic thing? Before it happened, I was 6'1, 148 lbs., size 6 or 8, and 12% bodyfat. I was buff! My daughter has a picture of me and my husband prior to my getting sick. She showed it to my ex-husband -- he said, has your mother been lifting weights? She is BUFF! (trust me -- for him to say anything good, it has to be monumental!) Unfortunately, because it's brain tissue that's been targeted, it is gone. It won't heal, won't regenerate. The best that I can hope for is that MAYBE it can re-route and develop new pathways. It's highly unlikely, because I have yet ANOTHER condition that, under normal circumstances, would require brain surgery, but because I have this, they don't want to risk it. So . . . . I'm kind of stuck. (Sorry for the long explanation, but I don't know a shorter version)

Hoping that Social Security sees it that way, too . . . but you know how that goes . . . . probably not!

I am so angry, no furious, and sad about this stupid disease. I hate it. I REALLY hate it. I got a call tonight from a recruiter -- I was offered a position as a clinic director for a hushy-tushy PT clinic. It would have meant big money, plus great benefits. I don't know who gave them my name -- I think it's someone that I worked for before I was in PT school, and then who taught me when I was there. I had to tell the recruiter that I'm sick, and that I'm in a wheelchair, so I couldn't do manual therapy. I told him that I was sorry, but I knew that I couldn't take the job. He said he was sorry, but he thanked me for my time.

I HATE THIS DISEASE. I HATE WHAT IT HAS DONE TO ME PHYSICALLY. I HATE THAT I DON'T HAVE COORDINATION ANYMORE, AND THAT MY ARMS AND LEGS HAVE TREMORS. I HATE THAT I CAN'T TALK RIGHT WITHOUT MEDICINE. I HATE THAT IT'S STARTED AFFECTING MY BRAIN'S ABILITY TO COORDINATE MY BLOOD PRESSURE, AND IN 15 MINUTES TIME I GO FROM IT BEING HIGH ENOUGH TO BE STROKE LEVEL DOWN TO THE POINT THAT THEY CAN'T GET THE LOWER NUMBER BECAUSE IT'S SO LOW, AND THEY WANT ME TO GO TO THE HOSPITAL. BUT MOSTLY RIGHT NOW I HATE THAT I HAD TO TURN DOWN THAT JOB. WHEN I GRADUATED FROM PT SCHOOL, IT WAS THE EXACT PLACE I WANTED TO WORK. I WAS 31 WHEN I GOT TO GO TO COLLEGE -- I WORKED MY BUTT OFF FOR THIS. I GRADUATED WHEN I WAS 35. GIVEN THAT I HAD TO CLOSE MY OWN CLINIC, THIS WAS THE NEXT BEST THING, AND I CAN'T DO IT. AND I HATE THAT I HAD TO ADMIT THAT -- OUT LOUD.

If anybody else wants to vent about having this stupid disease, please feel free -- I especially don't want to know that I'm the only one who is so FRUSTRATED right now . . . .

I haven't actually given in to the cravings, but man oh man do I crave Krispy Kreme donuts and a really good croissant!

Judy -- for the same reason that I'm looking at them at 1 in the morning! Cute stuff, though! I make pine cone wreaths -- the type that you use the frame. You soak the pine cones in water, so that they close up -- then you pack those suckers as tight as you can into the frame -- larger ones on the outside, then get smaller as you go to the center. When they dry, the pine cones start opening up -- they look beautiful! The only problem is that it takes approximately 210-220 pine cones to make a medium-sized wreath! Basically, it's 1 1/2 of the extra large (black) trash bags full of the cones. It's also hell on your hands -- especially since I've gotten this arthritis thing. I'm still going to do it again this year, though!

Shirley -- I can't believe that you've already tried the golf-ball thing! That is bust-a-gut funny, though! I can't wait to tell my Dad -- he's an avid -- "Get rid of the critters" kind of guy. One year when he couldn't keep the squirrels out of the bird seed, (and God knows he tried everything), he would sit out back, keep a cigarette lit, and when the squirrels would get into the feeder, he'd put a bottle rocket into a tube, aim it at the squirrel, and light the fuse! He went through more cigarettes that he didn't smoke that summer! We couldn't believe that he was aiming the bottle rockets at the squirrels!

I have a pellet gun, and I (at least used to be ) a sharp-shooter. I'll nail those stupid deer in the butts -- their furry little white tails will be hauling arse! Either that, or hit them with paint balls -- have one of those, too! All the other deer would be afraid that they were targeted!!!!!!!

My DH is really serious about getting together. He wants me to get together with you guys -- after reading some threads to him, he thinks that you're the greatest bunch of people, and it would do me more good than any of the doctors are doing to get together with you!!! (He's usually a little judgemental, too -- you guys must rate!)

Little Destiny is lying on my chest sleeping -- I guess it's time for us to go to bed! Talk to you guys soon . . . Lynne

Jen -- I laughed out loud about what your husband said with regard to the table runner! That is so cute, though! Can't WAIT to see it -- I'll bet it's beautiful.

Shirley -- my husband says "Go. You need to meet with your Celiac friends. It will be good for you." He's either ready to get my butt out of the house, or tired of me moping around! At any rate, if it's going to happen, I'm seriously in!

Judy -- I KNOW you'd be in!

Lollie -- I'd love to see some of your pottery. I have wanted to do that, but it seems REALLY HARD! If you can post some of your pictures, I'd love to see your work.

Susie -- guess I can tell you what NOT to do with the worms. I agree with Jen . . . poor worms.

Shirley -- can't you hit the deer with golfballs? I mean, if you just HAPPENED to be practicing, and you just HAPPENED to crown one as it was destroying your tree, you couldn't be held responsible, could you????

Just a thought . . . .

Talk to you guys soon !

Quite frankly, I also think it depends upon your doctor's notes and perspective. I have applied for Social Security Disability because the gluten intolerance has affected my brain. My neurologist was the one who told me to apply. His notes are pretty strong, as well as the second neurologist I see, so I would hope that it would be considered a disability.

If you're talking about in your workplace, it's pretty easy to consider it a disability -- and your employer would have to make accommodations for that.

If you're talking about Social Security -- Ha! I expect to be rejected at least twice -- then have an attorney go before the hearing and then I'll get it. It's rediculous.

Call, complain and B**** like heck. Then write a letter stating that, should there be a significant problem that worsens because they won't cover the necessary testing your doctor requested, you will hold them responsible and will report it to all the news statios and your newpaper. That should do it. Trust me.

yea!!!!!! Welcome -- and glad you're starting the gardening again! I tried the worm farm -- but I didn't do the "official" farm with the red worms -- only earthworms, and I killed them all -- three times! If I do it again, I'm going to order the red worms that you're supposed to use, and go from there. I do have some really good compost, though!

It sounds like you're going to have a really good garden this year. I'm only planting Tomatoes, Raspberries and Blackberries as far as foods go. I have flat leaf parsley and curly leaf parsley that actually THRIVED this winter. Who knew???? I have mint, thyme and sage that survived, as well. I do want to get some Lemongrass, though. We use a lot of it in tea, and in some thai soups.

Happy to have you back -- and feeling better. Talk to you soon . . . . Lynne

Thanks guys --this sounds great! What store are you seeing them in? We have Whole Foods and Wild Oats. We have a few other smaller stores, maybe I'll check there, too.

LabCorp does it. They do HLADQ2 and DQ8. My doc asked for DQ1, but they weren't able to do it. You usually have to have a prescription by a doctor to have it done. Don't know yet how much it costs-- actually, don't know yet my results, either. I had the SpinoCerebellar Ataxia panel done -- it was done by Athena labs. They wanted to "ensure that my co-pay would be no more than 20%", so they told us that they would give us a break by allowing us to pay $1,290 in full up front. I told them to cancel the test. If that was the co-pay, can you imagine the full cost??????

Yes! I thought I was the only one who had that! I was so embarrassed, I wouldn't tell anybody! My rheumatologist actually diagnosed me with psoriatic arthritis based on my ears! He said that he could lift the skin -- it was silvery, and it bled underneath. They itch like crazy!!!!! The only thing that helped was when I was on either Methotrexate or Enbrel. It was heavenly that I didn't have this awful scratching / itching thing going on.

I just called the Vital Radiance (aka Old Lady) make-up line after an advertisement on TV. It's 1-800-radiant. They were fantastic! They have a gluten-free list, they're going to e-mail it to me within 24 hours. After that, I'll be able to pick which sample I want sent to me, and they'll send a coupon with it. They are also going to send a list of possible cross-contamination products. The girl with whom I spoke also said that she will look into how they clean the drums in between mixing gluten-containing products and gluten-free products. I thought that was pretty good. So . . . if you want samples, call the 800 number!

Check to see if your vitamins contain yeast. It's quite possible. My dietician gave me a packet of information about vitamins that are completely "junk-free" -- but I can't find it right now. Will get back to you with the name, phone, etc.

I agree -- Trends come and go. Celiac is forever. Hopefully the companies don't forecast that this is going to end in, say 2 years, and plan likewise. As I said earlier, having this disease doesn't make me trendy. It makes having to have gluten-free foods my lifestyle forever.

Thanks for clearing that up for us! If you can, please help their coordination of medical information out. It's pretty bad when people from different states (and these are consultants) get the same rotten information! I'm glad you were able to get to the "good stuff" and help us out! Thank you . . . . Lynne

That's really good. I have gotten to the point that I take information that I have printed from the internet (all valid research) and hand them to my doctors. They ask me if that's for them, and I say "yes". I highlight areas that I want them to read, and I point it out to them -- and have them read it while I'm there. At least, that way, for a small moment in time they're thinking about it! It's to the point that one of my neuro docs has gotten Peter Green's book! He has started testing for Celiac in his ataxia patients -- he has caught it early in two different ones, and they are much more functional than I am . . . one doesn't even have to walk with a walker! Thanks for the heads up . . . . Lynne

Woo hoo! I'm in the top ten!

I've never been on the cutting edge of fashion before. Will this get me girls?

Yes, Yes, Line up girls, There's plenty of me to go around, and all my kisses are gluten-free, and certified as such by the FDA and the State of Georgia.

Having been a "Geek-type" in high school, and adult in college, I have never been in the "in" crowd myself. Finding this a new and "terrifying" experience!!!! I've never been the "trendsetter" -- Oh, the presssure . . .

I say, if it works, keep with it. If you just have elevated antigliadin antibodies, you STILL have gluten intolerance. As Karen said, it is the tip of the iceberg. I had no idea that I had elevated antigliadin antibodies -- until I walked like I had MS and I kept falling. Had every test known to man and G-d performed on me until they realized that the gluten was destroying my cerebellum. I know that I'm a little "over the top" about gluten now, but I had no idea that it could do this to you. If being gluten free helps you -- stay with it. I agree, too that your levels could have gone down - if you don't expose your body to the poison, the levels are going to go down. Take care of yourself . . . . Lynne

The other thing that I thought about -- did they do a biopsy on the rash? If they didn't, even though it doesn't LOOK like the normal DH, how do they know it isn't?????

Write them back and ask, "given that you have approximately 6 different types of charcoal, can you please give the gluten-free status of the 5 that you failed to address?" . . . .Lynne

I heard back from my MK rep this morning before I could call her. I got back basically the same info we saw above. I called her back & let her know that I am now torn - I love their products, but if I can't be sure they are gluten free I cannot contine to buy them. I also let her know that there are a bunch of pissed-off celiacs out there who won't buy their products because of this. I thought she would want to know (so she can let the compnay know that they are excluding a bunch of potential consumers).

I will let you all know how this progresses...

Lil

Thank you for trying . . . it's pretty disgusting when you get an answer like that, isn't it? Maybe your rep will be able to nudge them into being a little more socially responsible when it comes to health-related issues. Either that, or we can bombard them with letters thanking them for letting us know that they have no interest in the health of their consumers, and that, we as a very large number of consumers, will initiate a boycott of their products.

Lynne

I just have to say it: A useful specialist? Isn't that an oxymoron????

When I was working (note the emphasis on that statement!), I was fatigued ALL THE TIME. I thought it was just because I had my own office and was working so much. I would lie down after I had seen my last patient (sometimes 8 or 9 p.m.), but I would wake up at about 2 or 3 in the morning. My husband would have been calling over and over, and I wouldn't hear the phones. I would miss days in a row. I still have that trouble now, and I'm at home! If I've had a few days where I've done "a lot" (for how I am now), I'll have an entire day where I can't move. Today was one of them. I couldn't move to get out of bed. I think it's the weirdest feeling I believe I've ever felt.

You know . . . . I hadn't thought much about it . . . but we've always laughed about my mother's D problem! We call it "the sweats" because you break out in a cold sweat when you're out somewhere looking for a bathroom! My dad has diverticulosis, and when he doesn't watch what he eats, diverticulitis, but don't know about anything else. My mom, though, she's had it -- well, my whole life.

Come to think about it -- even though I have the "brain" type -- even as a kid, I had diarrhea all the time. They blamed it on antibiotics, because I was always sick, but I was always taking "Lomotil" for the big D. In fact, one time, for THREE MONTHS -- I remember it because I was in the 5th grade, I was on a diet that I could only have rice, baked potato (both with no butter), then they added baked chicken breast that was pressed so that all the oil (and moisture) would come out, then applesauce. I finally stopped having the big D after the three months. Oh yeah, then they made drink buttermilk -- yuck!!! Then, they started incorporating foods really slowly into my diet over the next 5-6 months. As an adult, I was told that I had IBS, I was told that I had ulcerative colitis when I was pregnant with my son ( had to be hospitalized ), but they always said it was due to stress.

Funny, though, I don't have antitransglutaminase or antiendomysial antibodies, and my villi are perfect. Hmmmm . . . that's kind of strange . . .

"because I don't know what your age is (if you've posted it before, I'm forgetting), I'm covering my arse by saying "and you should check Open Original Shared Link and verify that the use of these items is legal for you in your state/country at this time."

That being said, "FemGlide" is the best lubricant on the market. I treated women's health, had to use it in my clinic, and sold it to my patients (who bought it by the case-full, in some instances!) It's also marketed as "Slippery Stuff" (less clinical I guess) -- but is the same stuff. If you want info, PM me and I'll send it to you!

Is there a way to remove the filter that turns the letters C D, when put together, into "celiac disease" every time????? Thanks! . . . Lynne