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Hi all, I've been trying to eat gluten free for about three weeks now. I'm not sure if I feel any better or not, so I'm wondering about other peoples experiences. I'm also wondering if any of you were actually tested for gluten sensitivity? I'm debating whether to go to the doc and ask for a test. I hate to think I can never have birthday cake or a piece of pizza again. My family (hubby and teenage son) thinks it's just a 'fad' thing right now and I've been watching too much of the Dr. Oz show-haha!! Thanks

Well, blood sugar will drop about an hour after you eat and then go back up to normal. (That's a lot of carbs to be eating at once, btw ) I just looked up what a 3.6 mmol is equivalent to in US terms and it's a 65, which is considered the low end of normal. If you have the little glucose machine (which I'm assuming you do) take a reading first thing in the morning (fasting) and then one two hours after after you eat, and see what you get. Definitely bring it up to your doctor though

I'm under the impression that blood pools in the lower leg so I don't understand Mayo's rec of bike shorts???

I was kind of wondering about heavy metal poisoning. Also a virus. What other tests did they do for your liver? There's some reason your enzymes are elevated. Are they going to recheck them? Maybe a supplement you've been taking has your liver working overtime???? I don't know, just throwing stuff out there as possibilities. You've got enough to worry about already without me adding more!!!

I only have worn full foot knee highs so far. The ones I wear to work are 20-30 Truform brand. I got them at WalMart, but they are on Amazon also. They can get a little tight at the front of my ankle by the end of the night. I also have the lesser strength ones that are < 20 that I wear on days that I don't work, but I don't think that they do much. They are Medipeds brand.

On seeing an EP--ask your neuro to refer you to one. I was referred to a 'regular' cardiologist when I had my first episode. He did several expensive tests and left me with "everything's fine, you just need to exercise more". A few months later, when I had another episode, I call his office to see him again but he had left the practice. I explained my episode to the receptionist and she said "oh, you need to see Dr. W". He is the EP with that practice. He knew within a few minutes of looking at my previous Holter monitor records that I had dysautonomia. So, really I think seeing an EP is the way to go.

I have one of those finger oximeters also. Its gives me a little peace of mind that my O2 is ok, so I can kind of ignore my shortness of breath

Have you ever been evaluated by an electrophysiologist? I saw 10 different doctors when I first got sick and the EP cardiologist was the only one that had a clue as to what was going on with me.

My blood pressure is on the lowish side also (100s/60s), and after three different beta blockers, I found one that didn't lower it even more. Maybe you could try a beta (or several different ones) if you could get your doc to agree? I had 4 of these 'anxiety attacks' before I went on a beta blocker and have not had one since (knock on wood). I hesitate to call them anxiety attacks because I wasn't doing anything at the time that I felt anxious about. I do think it's an adrenaline flood or something. (FWIW, I tried an SSRI (Lexapro) and it made me feel worse--visible hand shaking, increased urination, increased startle. )

I often feel a tightness in my chest, from the bottom of my sternum up to my throat, and I have to breathe through my mouth to get more air. I don't describe it as an elephant, but more like a 20 lb cat sitting on my chest -lol (I've had pulmonary tests and supposedly they were normal. The first one said air trapping and possible neuromuscular disease, the second one was normal, so the doc went with normal).

I have read that beta blockers can cause a positive ANA. I'm not sure why or how that happens though.

Link?

Maybe they have a certain 'set' of tests that they do and they want to get all that info to review before they see her??? Sounds like a good thing to me that they're willing to do the testing.

Will they let you see someone else since she's leaving? I would at least ask. Sorry it's been such a disappointment

I have little 'blips' that I describe as the feeling when you're on a roller coaster and you're at the top of a drop and right when the coaster goes down, you get that weightless feeling but it's in your head. Or when you're in your car on a country road and you go over a little hill too fast and you get that little lightheaded feeling for just a second. I'm not sure if it's a missed heart beat or a drop in blood pressure???

I guess you don't necessarily have to go to a neurologist, but the brain is their specialty. My MRI report did not specifically say "no chiari", but when my neuro reviewed it in his office (when I was there), he said "no chiari" out loud to me. I guess it depends on the radiologist that looks at the MRI. If you specifically say they are looking for chiari (or get your doctor to write it on the order), then maybe they will make mention in the report.

I would see a neurologist and get an MRI to be sure. That's really the only way to know. They can also tell you for sure if the curve in your neck has straightened out. I'm extremely skeptical of chiros and have read that they will manipulate xrays (even show you an xray that's not even yours) to make you think that you have this problem. I have degenerative discs and was considering a chiro when I found out but after reading about the chance of stroke after neck manipulation, I decided against it. Good luck to you!!

How low is it? If it's only a couple of decimal points, I wouldn't worry about it.

I had the feeling also that my lower abdominal pain was an aneurysm. I had my GP order an abdominal CT and it said that my aorta was fine, so that helped me to not worry about it as much. For me, I came to the realization that all my testing was normal, so I try to act as 'normal' as I possibly can. I also quit googling symptoms. There's so much info out there that I too was worrying about a lot of different diseases. It's hard to not look for an answer, but maybe there isn't an answer??? I don't know. I've pretty much given up looking

Yeah, I have that app also and the rhythm graph is all over the place, so I don't think it's accurate either. For a monitor, Polar seems to be the best around (I base that on my years of belonging to exercise forums and reading other people's opinions-haha) but they're more pricey. The Polar I have (F6) has a chest strap which is more accurate and you get a continuous reading. They may have one that shows rhythm, but mine does not. It was around $80 a few years ago. There are monitors without a chest strap but you have to put your fingers on little metal pads, so you only get a reading when you do that--not a continuous reading.

I felt more dizzy on atenolol. It dropped my blood pressure into the 90s/50s. Have you checked your BP? My doc switched me to another beta blocker and I've not had the dizziness as much. Good luck!

Here's the most recent Vandy thread: http://forums.dinet.org/index.php?/topic/24819-my-vanderbilt-medical-center-research-trip-5-days-for-pots/?hl=vanderbilt

Awesome news!! Maybe you can go up the night before and spend the night or drive a couple of hours anyway to get closer and not have such a long drive on the day of the appt.

My first thought was hormones. I have night sweats the week leading up to my period. Don't know if you're near menopause/peri-menopause age--but maybe a possibility.

Everyone's different so take my experience for what it's worth--I had bone grafts on my three back teeth last fall, upper and lower, and had a lot of novacaine (or whatever they use) and it didn't bother me at all. I wore my heart rate monitor and kept a check on my hr. It got up into the 90's and I was reclined. I felt a little weird when I left there, but I drove myself home. On another note, several years ago, pre-dysautonomia, I had an old cracked filling drilled out and replaced and I did it without anaesthesia (sp). So I don't know if you might be up for that. Probably depends on how deep the cavity is.