gillian502

Hi everyone, I've had POTS and neurocardiac syncope for 3 years now, and my diagnosis was confirmed by the people at Johns Hopkins as well as the Mayo Clinic. I have had not one but TWO tilt table tests to confirm and re-confirm my diagnosis. It's 3 years later and I'm not functioning enough to hold a job, but I can get around well enough with a beta blocker helping me as long as I limit my day to 2 to 3 hours and not too much exertion. I have recently switched my beta blocker from Atenolol to Toprol XL, and this week has been miserable for me because of it. The Toprol 25mgs isn't nearly enough medicene, and my tachycardia is back in full force (about 130 upon standing.) I phoned my cardiologist, whom I've been seeing for about a year, to ask if it was ok to increase my dose, which I obviously need to do and fast. He told the secretary to inform me that he would make no dosage adjustments for me until I came in and did the third tilt he had suggested at our last appointment--a suggestion I balked at then and refuse to do now. I informed the secretary that I have done some reading on this and feel it is not at all necessary to have a third TTT, and in fact it would muddy the waters of an already established diagosis. She said the dr will be calling me back later today. I'm so upset I'm in tears. My heart rate is high, my symptoms are at their peak since it's that special time of the month when things always feel worse (!) and this guy is basically withholding meds that I am desperate for just because he is so unfamiliar with POTS that he thinks this test needs to be repeated every couple years. I am not doing another TTT, and I am afraid he will refuse me my beta blockers based on my refusal. Can he really do that? Has anyone else ever been pressured into another TTT? Do you all have your TTTs repeated every couple years? I have never heard of this! Thanks for letting me get it all out. Gillian

I took pindolol for nearly 2 years, and it worked for me during that time with very few side effects. I was taking 5 mg during the majority of my time on it. It's a fairly gentle beta blocker; you should be fine.

The terms "Celiac Disease" and "gluten intolerance" are slightly different, only because with Celiac Disease, there has been an official diagnosis through blood work and biopsy; whereas when someone calls themselves "gluten intolerant" they may simply be saying they are intolerant the same way one could be intolerant to dairy, let's say, and they get unpleasant symptoms but are not actually in danger of developing stomach cancer, lymphoma, or a secondary auto-immune disorder if they continue to ingest gluten. That being said, of course all Celiacs can't have any gluten anyway, so i suppose it doesn't matter how one describes it! I was diagnosed with CD at the Mayo Clinic through blood tests, which showed extremely elevated antibodies (Ttg, IgA, Igg) and then through an endoscopy of my small intestine, where several biopsies taken showed my villi were wiped out by the damage of the disease. I had lost about 30lbs and was very very ill at that time, and this may have caused the POTS to develop a few months later. Anyone who has gastro problems and suspects it may be more than simple "IBS" ( which is really just the doctor's way of saying they don't know what's wrong) should request a thorough antibodies blood test for Celiac. Make sure your dr is knowledgable, though. Many don't know about CD and don't know which tests to even order.

Hi everyone, I'm new here. I have Celiac Disease, which is an auto-immune disease triggered by ingesting wheat, rye, barley, oats, and anything that may be cross-contaminated with them. Some people refer to this as a "gluten allergy" but it is in fact not an allergy at all; it is an auto-immune disease. I struggled to get the CD under control for over 2 years, and now finally my blood tests are clean, so that's one problem down, several to go! I've had POTS and neurocardiac syncope since 03', but because I've spent so much of the past few years concentrating on the Celiac plus other issues, I haven't learned as much about POTS and its treatments as I would have liked. Finally I found this message board, and I'm hoping to learn as much as I can (I know the basics of course, but I'm not well enough yet to even work part-time or do my own errands, so apparently I've gone wrong somewhere, or my doctors have!) I have always read that Celiac and POTS kind of go hand in hand, though, so just thought I'd mention that.