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Sophia - Thank you kindly for that link! I think one positive thing (and this I've heard from a couple others)...you can't just graze and snack as freely before so it's somewhat helpful if you need to lose (and I do). I'm often 'bloated' too. I can feel the bloat and it's yucky. Delphic - After the three month GF diet, if I feel much better I can either continue or go BACK on Gluten and have the biopsy. I would find that so harsh, but we'll see. I have noticed something in the last few days. My pain is MUCH WORSE after eating a high-wheat plate of food. Mrs. Burschman - Seriously? They noticed a major improvement? I've been trying to read up on it and came across a few stories of people who are convinced there body was too busy fighting Gluten and causing damage. Hmmm. I'm hoping I'll get better! MelissaReid - You'd think SF would have more GF! Maybe I need to go to Rainbow Grocery? The Safeway doesn't have a GF aisle here. I hear some Targets do but have no idea which one to go to. I agree that it's good I have something to try with a 'blood test' to back it up. I'll get a definitive diagnosis after the few month GF test and, possibly, endoscopy. This is one drawn out test, I tell you. I've been rearranging my cabinets. My husband now has a 'wheat/gluten' shelf and some paper bowls. :/ I think I'll look for that T-something pasta at Whole Foods and try to get away with cooking that.

For some reason I'm not having the easiest time finding Gluten-Free produts here...and they are costly to ship. So I'll have to go to Whole Foods (although it's not my favorite place, alas, no choice). But...I'll try to find this thread to post an update after a few weeks Gluten-Free. I'm just wondering how much cross-contamination I'll run into the first couple of months as I hear it's hard to completely avoid and takes patience and time.

Yeah! I'm feeling better - and I've researched on the Gluten-Free board about my favorite Starbucks drink. It's OK. Somehow, that's a major relief. Since I need to wean off this week, I'm trying to have a couple of my 'favorite' things (my last Lasagna!) LOL. But, if it's what I have to do to be successful, it's what I have to do! I'm checking out all your resources! sue1234 - I'll be 'gluten-free' starting next week so I'll have to keep weekly notes about any improvement. I'm sure I'll make a mistake or two (I keep reading on the boards that this happens, the first few months are hard, and don't beat yourself up). Marcia - Fabulous resources. Thank you so very, very much. It sounds like you are improving, so that's wonderful. Even if it is slowly, it's going the RIGHT way! My doctor said it could be a year before I see major improvement. I'll keep you updated on any POTS improvement I get...at the least I hope it helps get rid of the awful aches/pains I get randomly. It'll make it worth it!

Everyone thank you so very much. I'm starting to feel better 'planning' my diet. Tomorrow I'll research recipes (thanks for your tips above so very much) and start to get an action plan. Once I told myself I deserve a week to research, find recipes, see exactly what I have to do, etc. I calmed down. For some reason I thought at first I'd have to just jump in and go gluten-free but it's much easier with my weaning off plan. Sophia - I'm sorry trying it didn't help you, but appreciate you were able to share so much information with me. Mack's Mom - I didn't think about my allergy issues...I'll have to see if those get better! I was told it'll be a good three months to see if I'm improving without gluten. I'm really concerned about cross-contamination as I'll still be around gluten. But, I guess it's a learning curve. I'll get there. At least bread comes packaged and can live in its own cupboard! And a little less pasta for the family can't be a bad thing (simple carbs and all). I just wish I knew it'd help POTS! I guess no matter it has to help something if it's true how Celiac Disease can really mess with your body. Thanks again for cheering me. I guess I wasn't' in the mood for another diagnosis this week. LOL (Who ever is?)

My Tissue Transglutaminase AB came back 'high' so there's a strong probability I have Celiac Disease. I have to start a 3-month trial of no Gluten and go from there. This is what I read about the test that confirmed it: "The best initial laboratory test for diagnosis of celiac disease is anti-tissue transglutaminase antibody (anti-tTG), IgA. If this test is positive, it is likely that the patient has celiac disease." I'm frustrated. I'm thankful my Rheumatologist thought to test for this and I know...I'm upset, though, because it's something else to deal with, to make me abnormal and makes going out to eat almost impossible. I eat a lot of bread, pasta, items with wheat and am a good baker. I love cake, pies, cookies. This is really unfair. Since Celiac Disease is an 'autoimmune disorder' technically, it can't be taken lightly. COULD it be affecting my body and making my POTS worse? I would like to know. I would like one good to come out of this (I start feeling better). I'm on the verge of tears because it's going to mean making 'two dinners' now for the family and I only have so much energy. I can't ask my spouse to give up the foods he likes. I can't tell people not to have holiday meals with all the breads. The family is very carb-heavy! I don't eat meat, but am now eating chicken/turkey as I have to eat something! I'll be starting this diet later this week once I get some more information on what to eat, cook, etc. I feel bad eating gluten now, but need a few days to adjust. I can't do it cold turkey. I figure by next week (November 9th) I'll be gluten-free to the best of my ability. Please share any help/advice/and thanks for letting me vent.

The only thing I have figured out is my G2 bottle contains 50% of my daily Vitamin B6 and I average 2-3 bottles a day (so 100-150%). Could this be enough, on top of wherever else B6 is found in foods, to push mine that high? To be safe, should I look for another drink with less B6? I have too much B6 circulating, rather than not enough, and didn't know estrogen loss could deplete it. I don't think my estrogen is elevated, though.

My B6 Levels are very high - they are double of the highest allowed for normal range. The doctor wanted to know if I took supplements (no) or ate a lot of cereal (no). I asked what it could be and she didn't know at this oint. I'm concerned as what I found online said high levels of B6 could cause neurological damage. This is the only vitamin that's 'off the charts' for me, so to speak. In the last 6-months everything else is in range. But B6 is over the top. I'm really worried about kidney function now, but I'm trying to not freak out yet.

I'll ask my doctor about 6 weeks today...I guess if I'm seeing ANY improvement she wants me to stay on it. It can take longer, from what I understand, to really start to heal. I wonder if I even have this, but I guess it's a possibility. Thanks about the brownie mix/corn tortilla comment. I love tortillas!

I'm in the process of this with my Rheumatologist. She says the tests aren't 100% - a 6 week gluten-free diet is in my near future. If it is causing some of my symptoms, and I can feel better without it, it's worth doing this. From what I hear, it can be pretty damaging on your system if you continue eating it and are intolerant. Also, it can show up 'anytime' - so my whole childhood eating cake and bread maybe wasn't an issue, but this intolerance could be recent. I also read online that it's more common in people of European Ancestry (andyone hear that before). WebMD: (This makes me wonder - COULD it affect some of us?) # Peripheral neuropathy (nerve damage): Vitamin deficiencies of B12 and thiamine may contribute to nerve damage with symptoms of poor balance, muscle weakness, and numbness and tingling in the arms and legs. Mayo: # Celiac disease symptoms can also mimic those of other conditions, such as irritable bowel syndrome, gastric ulcers, Crohn's disease, parasite infections, anemia, skin disorders or a nervous condition. While I love pastries, crackers, etc. I guess I'm going to have to do this. If it's really adding to my illness and can make me better, it's important I try it. I want to feel better. Hoping I'll drop some pounds, too, and I can still have rice and potatoes.

Interesting on the Celiac Disease. I think my Rheum. is forcing me to go on a gluten-free diet in to see if it makes me better, overall, for about 6-weeks. If it gets rid of acne/weird skin things? Yeah! Otherwise, I'm going to starve so I may lose some weight.

I have aches and pains that are random (not all Fibro points, but I'm not imagining the pain, I promise!). Also - my fatigue can be daunting. Some days it's more tolerable than others. Now? I'm forcing myself to stay up because I have things to get done. It's not easy. I'm still confused how you can have symptoms of CFS/POTS/Fibro - which I think many of us do - but are diagnosed with 'just' POTS (or insert other thing here). So what is all this, anyway? I'm working with a Rheumatologist to see if I do have CFS. But I'm still confused.

My PCP mentioned the possibilities of trying anti-virals to treat it, if I do have it...and looking for a clinical study testing the drugs. I believe word is still out on which meds can treat it, but there are studies being done. What I don't know is if it CURES it or just REPRESSES it. I guess I can ask my PCP the theory on that next visit. I know HIV can't be cured at this time. And Viruses are still evil little beasts we have to deal with...I don't know if there's something that will kick it into remission enough to 'cure' someone if they have it? Here's what I found online about the anti-virals: "Unlike antibiotics, antiviral drugs do not destroy their target pathogen; instead they inhibit their development." Here's an anti-viral study when tested with XMRV/Prostate cancer: http://www.pnas.org/content/104/5/1655.abstract (And HaHaHa - Merry Christmas, you have XMRV! ... I might steal that for my holiday cards).

I called and ordered my kit - http://www.vipdx.com/. It's about a month wait for it to be shipped out this is so popular. I feel as if I need to know. I have CFS symptoms and POTS. They are not affiliated with insurance companies, though, so I know my insurance will pay little if anything. PCR Test: $400 (Live Virus) Latent Virus Test: $500 or Both Tests: $650 I'm going to discuss with my PCP if we want one or both. Since it's so expensive and will likely be out of pocket, I don't want to spend more than I must. Would ours most likely be latent? Latent would not show the active virus, correct? I'm so torn. It's very $$$ but what if this is actually something that really helps? Also, please discuss the pros and cons of this test. I was hoping it'd be a test you could just get done at a local lab, but it's more involved than that. I've never dealt with something like this before. (Maybe I should ask for the test for Christmas. HAHAHA).

I cannot wait! to have the XMRV test. I want to KNOW one way or another. My PCP's office treats a lot of AIDS/HIV patients (full of literature on the wall) and we discussed this report. I'd do what I could to get in an anti-viral drug trial if I had the XMRV virus. Is the test going to be standard that many labs can do? Is it just a blood test (I read it's about 6-months off). And I would assume we could have a mutation that makes us more susceptible to this virus, thus POTS. It wouldn't be out of the realm of possibility.

I have less fatigue/body aches with my 30mg/twice a day right now. I wonder when I should switch it up to 60/mg twice a day or 30/mg three times a day...I can take up to 120/mg, if needed. When I went off of it after taking a 180mg timed-release (very yucky side effects as it was just too much!), I felt 20% worse. So this medicine does help me (mostly with the aches and fatigue and a bit with blood pressure). I just can't take too much. But neither can people with MG even. It's a sensitive drug, from what I understand.

My Rheumatogist is getting a specific blood test for me for Hashimoto's - I think it's a Thyroid ANA. She said the regular Thyroid Function I had done wasn't enough. The main reasons, I think, are my body aches and I've weirdly lost hair in my outer eyebrow. I now have to really fix my eyebrows everyday. :/ It bothers me. So you may want to see if you can either see a Rheum or get one of these tests. At least it's a start!

Yup. Especially if it's a big meal or high in carbs. So going off wheat/gluten carbs probably isn't a bad idea for me for a while.

My Rheumatologist visit went well today - she wasn't familiar with POTS but is now actively looking into it as it could overlap with CFS patients. I'm getting a few blood tests and going back to see her next week (including the test for Hashimoto's - the special thyroid test). We'll review that and go from there. She thinks she wants to put me on a 6-week Gluten Free diet (yikes!) but it's worth a try which we'll also discuss. This is to see if any of my muscle/body pain gets help from that as Celiac tests aren't always 100% accurate. I tried and didn't last before (a couple days!). But I guess I have to put in the effort this time. We discussed the possible 'hidden' virus causes of POTS/CFS. Especially when someone mentions they were 'sicker then they'd ever been' with a flu or something then get something like POTS/CFS/etc. I'll find out more next week and will update this thread. Feel free to share any experiences you've had with the above. I'm trying to digest it all in my head right now. I'm glad I've found a good doctor willing to work with me!

Lisabeth - Hope you can reach the goal you want. I totally understand your frustrations! It's interesting you started a Beta Blocker, too. My weight gain (and I was eating LESS after starting it with my move and all) came after it. Maybe we'll start regulating it better? Here's hope! Maxine - I thought my PCP was quick to jump to the 'don't blame medicines!' speech. I know what I've been doing. It seems absurd it happened quickly and with less eating. :/ I'll talk to the POTS specialist I am seeing next month.

Like I've been out on a bender the night before, which, unfortunately, I've not. My heart rate and blood pressure are crazy - sometimes the heart wants to thump out of the chest. I know it's a bit worse now that I'm on a Beta Blocker as I have to get my AM meds in me. The Beta Blocker seems to help the most at this stage in my POTS. Sadly, the longer I sleep in the worse body aches/other little issues I seem to have I notice. I guess my ANS prefers to wake up earlier and try to function. And then there's the extended dehydration... And just feeling crappy until I try to get some food and drink in me, later some caffeine. I'm bad on the food sometimes. My food-system seems to take a while to kick in. I'm working on it.

Maxine - My current PCP doesn't believe Beta Blockers cause weight gain and that I 'can't blame weight gain on my medicine.' My weight gain happened within a couple months of going on beta Blockers and changing my Birth Control Pill. I asked a family member and he was pretty sure he'd gained 5-10 pounds on Beta Blockers (usually had a very stable weight). Do you, or anyone, know how true this is? Is it able to 'lose' that weight, too?

I'm trying to lose weight, too. I honestly don't know if we can do much about our HR. I'm on a Beta Blocker so the doctor said I'd never get it up to targeted range, but I still have to eat better and exercise. So I'm trying, bit it's frustrating! I do NOT like being overweight. I am very tall and large boned and I accept that - but not this extra chubby. Good luck to you and please share if you find anything helpful!

I was on a few over the years. The last one I was on was my favorite - Seasonique. I had to pay for it (barely covered on my insurance at the time), but it worked well and didn't seem to upset my POTS. If I had to go back to BCP from Mirena, I'd start with that. I didn't even get migraines any longer!

I'm seeing a Rheumotologist this week about Autoimmune issues. I'll post on how that goes. I've seen an Endo who put me on Midodrine, but I didn't get a full benefit from it until I also took a Beta Blocker. Who's the primary person treating your POTS to start with? Can they suggest who to see next? I think my Midodrine was helpful a little bit on its own after some adjustment (a few weeks of getting the right dosage). Good luck!

Hello and welcome! I have positive ANA tests on and off, and no one knows why. I'm seeing another Rheumotologist next week, but we'll see if they can pinpoint anything. I have POTS and Midodrine does help. I am also on a Beta Blocker with Midodrine which helps even more in combination! It's called Propranonol and I'm doing a lot better on the combo. You can search it - a lot of people use it here. Mestinon helps me, too, in low doses. High doses cause other issues. It's another one worth reading about. I used to have ocular migraines but they went away. The first one freaked me out (the zig zags). They were very rare. I had normal migraines more. But now (hopefully) they are extremely rare, too. I've not had a migraine in a while (one or two year) and no ocular ones. I do get an occasional floater. My former Rheumotologist before I moved said I do not have Fibro. I have muscle/joint pains (maybe POTS?) but it's not Fibro. I am going to see what the new Rheumotologist thinks, if anything, about my aches and pains. They were concerned about Lupus as some of the symptoms are similar with it, but I have not been diagnosed. I was told to watch for additional symptoms. I'm sorry you are dealing with this. It is not pleasant, but hopefully you'll find some help, answers, and be able to at least vent on the boards!