tiredofdoctors

OMG!!!!! Tiffany -- you get it!!!!! And so do your teachers!!!!! I could only hope that you would move to Louisville, KY and start teaching here!

You are going to be an OUTSTANDING teacher. You are so right on every point that you made. As a PT, I am SO EXCITED to FINALLY hear that from someone who is going to be a teacher.

Keep getting the message out -- YOU ROCK ! Lynne

This happens all the time. I juggle between my PCP, a Rheumatologist, a GI doc, and two Neurologists. Sometimes it's a nightmare just getting the meds you need. Luckily, one of my neurologists knows what it's like, so he'll actually prescribe the drug after talking to one of the others -- even if it's a stomach medication. I wish you the BEST of luck. And truthfully, I don't know if it's going to change if you switch to a new PCP. Today's healthcare market is CYA -- and 99.9% of them are so scare of a lawsuit, that they err way too much on the side of caution. But then, all it takes is one lawsuit to have their malpractice carrier dump them, not be able to get insurance again, and they're screwed. No doc wants to practice without insurance. I'm not saying that what you're going through isn't WRONG -- it is. I'm just saying that the docs are so afraid of litigation that they freak out when there's the potential for trouble. Just keep plugging . . . . Hope this helps a little, anyway . . .

Go, Beverly, YOU ROCK!!!!!

The up-side to your story, though, Claire, is that you are a reasonable, educated person, and you know your body VERY WELL. So, regardless of what "label" they are going to paste onto your chart, in your heart, you know that you're gluten intolerant, given the symptoms that you have. I have so much admiration for you -- for your knowledge, for your perserverance, and for your ability to continue to remain objective about a VERY emotional issue. You are remarkable. And that's really all you need to remember . . .

Years and years ago, my doctor recommended Gaviscon, too. I do know this -- according to some publication, Nexium contains gluten -- so check it out prior to taking it. (I took this for three months while they were in the process of diagnosing my gluten ataxia) -- hey, Shirley, that could account for the increase, too! Didn't even think of that . . .

The thing with yoga is this: I herniated two discs in a place where you normally don't get herniations (first two lumbar) because of doing "the plow" in my 30's. I'm NOT the best person to ask about yoga, for that reason.

As a practitioner, I think that any consistent, SANE, easy stretching program is a MUST for people with hypermobility syndrome. The reason is this (and I had a patient who was research on this very thing): my theory is that people with hypermobility syndrome have too much elastin in their ligaments -- the things that connect bone to bone. But that doesn't necessarily mean that their TENDONS -- the things that connect muscle to bone -- are the same. In fact, I asked this girl if people with hypermobile joints could have too much COLLAGEN in their muscles, making them much less elastic. THAT was her research project. (She was a PhD in biomedical research) She said, at that point, everything led to "yes". I asked her if it was genetic -- she said that they could only say that it was "familial" because they did see it running in families, but couldn't isolate an allele on a gene to say genetic.

All that said, the point is this: If you have hypermobile joints, and your MUSCLES are too tight, the joints have to continue to stretch to compensate for the decreased amount of length in the muscles. Also, every time you work a muscle, you increase the diameter of the muscle fibers -- which INCREASES its size, but DECREASES its length. That's why you should ALWAYS stretch after exercising.

Okay, I'm off my soapbox. Hope this helps, but sorry for the rant . . . .

Sorry, had to add more: NEVER -- NEVER stretch past what feels like "Oh yeah, this feels really good." That stretch until you can't push any further and it's hurting -- all you're doing is causing micro-tears in the muscle. They then heal, with a little scarring, which makes them SHORTER than when you started -- so you've actually set yourself BACK. Okay, NOW I'm finished.

The only problem with Margaritas is that you have to watch which mix is used -- some companies "thicken" it for restaurants so that they can add a LOT of ice and it will go further -- don't know if they're gluten-free. My philosophy -- just take life with a grain of salt, a slice of lime and a shot of tequila.

I have hypermobile joints, too ... never been diagnosed with Ehrlers-Danlos. I do have the cigarette-paper skin, though. You can actually see all the tendons in my wrist (palm side, too) and it goes all the way up into my arm -- you can see where the muscle begins. There is a ligamentous laxity scale that is scored 1-9. The scoring goes as follows:

Can you put your thumb down to your wrist? (1 point for each side that you can)

Can you pull your pinky finger back so that the bottom joint is less than 90 degrees? (1 point for each side)

When you straighten out your arms, with them at your sides, palms facing forward, are they completely straight from the elbows down? (1 point for each side)

Can you lock your knees back so that they look backward vs. forward? (1 point for each side)

Can you interlock your hands, and bend down, with your feet together, not bending your knees, and put your palms on the floor (1 point)

I THINK the scoring goes like this: (my office stuff is still in boxes after having to close)

1-3 points: No risk for ligamentous laxity

4-5 points: Moderate laxity -- use caution when performing vigorous activities, sports

6-9 points: Severe laxity -- at risk for multiple injuries, sprains, strains, and for females, at risk for bladder & uterine prolapse

Don't quote me on the scoring table, but I know the testing things are absolutely right. I tested all my patients that came in.

Maybe there is a link . . . . That's a really good question.

I agree with Rachel. I'm gluten intolerant, but because I produce other antibodies against perkinje cells, it is affecting the my brain, eyes and the nerves in my hands & feet. I'm celiac negative, but it just affects me in a different way, so I'm WAY gluten-free.

David, Thank you so much for writing an excellent article. I think that the others have said it perfectly -- thank you for getting a definitive answer. I think our biggest upset was that we were given so many different answers about the same product. Karen is right -- you rock!!

As for a fractured vertebrae, it won't heal unless you are immobilized. Typically patients are put in "clamshell" type braces that go from right under your neck down to the tops of your hips -- and they are rigid. You typically wear them for about 12 weeks. If it still hasn't healed, they need to put a bone stimulator on it -- or somehow go in and stabilize it . At 19, you can certainly have herniated discs, particularly if you were a vigorous athlete -- but they usually dont' heal, they just become less symptomatic. Discs are like car tires -- they herniate from the rings of layers tearing from the inside out and a herniation is like the little "bubble" you see on a bad tire. You need to keep up with that -- you're too young to stop everything -- and that fracture has me a little concerned . . . (can you tell I'm a mom???) (but I'm also a PT, too, and I've treated kids with the exact stuff you have -- it's no small matter)

Thanks for the heads up on that . . . I didn't know that! I love Balsamic vinegar, too -- you've made me really happy! . . . Lynne

WooHooooo Lynne

Thank you so much for posting that -- we have a Moe's here and I was wondering about it, but haven't gotten around to contacting them. I appreciate it a LOT . . . . . Lynne

GREAT news! I'm really happy for you . . . . Lynne

Don't know if it's related to gluten intolerance, but, out of 24 possible discs that are in your back, all but 7 of mine are either bulging or herniated. I also have "osteophytosis" on the front of my vertebrae -- a growth of calcium that usually comes about in your late 50's or early 60's. I'm 43. The docs just shrug their shoulders as to WHY my vertebral column is like that. I'm a PT -- and have been in a very physical job, but shouldn't have that much damage and degeneration. Don't know what to tell you, but I'm in the same boat. . . . Lynne

They make Gluten-Free Chicken Nuggets??????? Okay, I'm going . . . I'm geting tired of Puffins, smoothies and junior mints for junk food!

Vincent, I didn't even read that you were from Nashville -- we get down that way every once in awhile -- Dave has some friends there that we visit. Next visit, I'll have to PM you so that my husband and I can meet up with your family and I can see that cutie Tymber in person! We're in Louisville, KY

I had to laugh about the narrow aisles -- I hated that when my kids were little -- I'd get to the checkout, and I'd have all this stuff -- expensive cereals, gummies, fruit roll-ups -- in my cart. I'd just look at them, and then give the stuff to the cashier with a sheepish look on my face and say "we really didn't want these -- I'm sorry." When Brandon was REALLY little, he used to sit and reach back into the cart -- I can't tell you how many times he poked holes through the meat packages if I put them on the top. It was really FUNNY in retrospect!!

At any rate, I feel a long trip to Wild Oats coming on . . . .

Talk to you guys soon . . . . Lynne

Just a little humor to ease your nerves: I was having both an endoscopy and a colonoscopy on the same day. Prior to having it, I looked at the nurses and asked "If you're going to use the same tube, could we please do my upper part first?" Let me tell you, these people have no sense of humor They just stared at me, while I was giggling as they were putting the mouthguard in my mouth & they started putting the tube in! . . . Lynne

I have HORRIBLE insomnia. Especially since going gluten-free, too. I hadn't really thought about it until I read your thread. In the past, I've had low DHEA and high cortisol levels (they have a converse relationship) -- and had to have B12 injections -- didn't think about the cortisol issue. Think I will ask my endocrinologist about testing for those -- I'm having a bunch of bloodwork done next visit anyway, why not a little more???? Lynne

Have been to the Outback in Lexington, KY and in Louisville, KY and haven't had a problem eating off the gluten-free menu -- even their brownie dessert is gluten-free -- the waiter said that they are VERY careful when it comes to the gluten-free patrons. One caveat -- I don't have celiac, (gluten ataxia) so I don't know immediately if I've had trouble. I have to be EXTREMELY glutened to know (the next day) if it's gotten to me.

Vincent -- we have Wild Oats here -- haven't gone there because I'm afraid of the prices! Are they very expensive? I know that Kroger's organic section is pretty high -- but that's where we're buying from right now. I'm also afraid that if I go into Wild Oats that I'll spend a fortune! We also have (what I think is) the Whole Foods Market -- something like that. Just wanting to know how expensive it is compared to regular stuff. Kind of on a REALLY tight budget. . . Lynne

Before I have sympathy for you, Ken, how tall are you??? Just kidding -- regardless of your height, if you are struggling with weight issues, you have my complete sympathy. Don't know anything about the Southbeach Diet, but if I find any good information, I'll let you know. Good luck to you . . . Lynne

I only had to drink a small amount of liquid lidocaine -- maybe tasted a little weird, but that was all. . . Lynne

Amazing, Huh????? I'm so cynical, though, I keep thinking . . . "there's got to be a catch -- there has to be something that's going to go wrong . . . " Just need to stay positive -- it's going to be a GOOD visit! . . . Lynne

Lollie -- You go girl!! I hope your cakes turn out wonderfully! I'll let you know how the whole birthday thing goes when it happens -- my family is going to be shocked! . . . Lynne