thleensd

Pikakegirl - good luck with your cardiologist appointment. It's really amazing that we have to push so hard to get answers, but I hope you can find some more!

SVT isn't uncommon for people with POTS...they can certainly co-exist, but that often makes diagnosis challenging. Please make sure that you ask them to take your pulse and BP lying down and standing. I'm not sure how much you've looked into POTS, but in case it helps, the diagnostic criteria is a heart rate increase of 30 BPM when going from supine to standing (in absence of a large drop in BP). If BP drops, it might be orthostatic hypotension instead.

Also, the nerve pain and joint problems - have you looked in to Ehlers-Danlos Syndrome? Obviously there are many, many things that it could be, but EDS does tend to cluster with POTS (and often falls in to the "I was diagnosed with chronic fatigue which ALL of my symptoms are now attributed to" category). I was also diagnosed with that at the same time (hypermobile type)

I do appreciate your clarification, although I will say that if your POTS can be fixed by a tablespoon of soy sauce, it was not true POTS in the first place. Dysautonomia is a big deal. 

Sodium can help some with low blood volume or low blood pressure in some people, but let's not recklessly throw around advice. It's like saying a mild case of celiac can be cured by cutting back on gluten. 

Not asking for advice. I've done thousands of hours of research on health in general - hundreds and hundreds in dysautonomia and POTS, I have a leading doctor, and am taking in 10 grams of salt per day (as recommended), and am not yet well enough to take care of myself, so I'll be starting medication soon.

It is frankly insultingly naive to suggest that a tablespoon of soy sauce could make me feel better.

Looks like I haven't been on here for about 4 years...hoping the next chapter in my story will help someone along the way. 

I was diagnosed with celiac disease by biopsy in 2009 after a number of years of trouble. I carefully nixed gluten, then went paleo, then went on the Wahls Protocol - each with some improvement, but never enough to return to "normal". I was diagnosed with Chronic Fatigue Syndrome/ME and stopped looking for answers (other than continued reading, refinement and dietary adjustments). I was starting to do pretty well - traveled internationally, was starting to hike regularly when I became increasingly fatigued, dizzy, light-headed again...but mostly only in the morning. Symptoms crept later and later in the day until finally over the summer I really crashed. I felt like I was going to faint every time I stood up for more than a few minutes - it was scary, but familiar to pre-Celiac-diagnosis.

Interestingly enough, early on, most of my symptoms were neurological: ataxia, brain fog, memory problems, nerve pain, etc as well as debilitating fatigue. I had a few near-fainting experiences here and there, but it was attributed to malnourishment, low blood pressure, CFS, and yes..."anxiety". 

I found a new functional medicine doctor who led me down another research path...thyroid...no...adrenal fatigue... maybe, but no clinical markers. Then I found it - thanks to the internet (which I also attribute to finding celiac disease).

In addition to Celiac Disease, I have POTS. Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia. In essence, for some reason (autoimmunity? low blood volume? general dysautonomia?) not enough blood pumps to our vital organs, so our hearts race to try to compensate when we stand up (sometimes when we sit up). Those are the main features, but, much like Celiac Disease, there are lists and lists of additional signs and symptoms. I found an expert (such as there are, there is no cure, only treatments - and it was only a named syndrome starting in 1993, so it's a young syndrome) and finally got an appointment last week. Now to start the long road of pharmaceuticals (ugh), lifestyle interventions, and anything else we can find so I can feel better. 

Here are the most troubling symptoms I went through that my doctors dismissed as "just CFS" or "Celiac complications":

Dizziness, lightheadedness, light and sound sensitivity, fatigue, cognitive dysfunction (brain fog) digestive disturbances, too much adrenaline (and not at appropriate times), and of course, an inappropriately high heart rate upon standing. I also had related issues (which are explained by the related diagnoses of Ehlers-Danlos Syndrome (hypermobile) and MCAD/MCAS (mast cell activation disorder/syndrome). Those included: joint and nerve pain, loose joints, chemical sensitivity, a history of chronic idiopathic urticaria (hives) and angioedema (swelling). Turns out that POTS has it's own little constellation cluster of illnesses that like to coexist with it: celiac disease, lupus, MS, sjogrens, EDS, Lyme Disease are some of the most common)

It turns out that Celiac Disease can trigger POTS! If you're having unexplained orthostatic intolerance in spite of not much change in blood pressure upon standing, check your heart rate. None of my doctors ever thought to check my standing heart rate, and the only irregularities were attributed to anxiety. 

Dysautonomia isn't fun. But, having a diagnosis can hopefully lead to some treatment options. 

Here's a great short video about POTS. 

This made me SO irritated!! The doctor asked her how often she poops (1/day), how much it hurts (3/10) and palated her belly. Then he said celiac disease is currently a fad and told her she was fine.

Seriously?!?! Wtf?! No blood test, no referral... Not even "try it and see..."

I hope they get flooded with complaints.

So, I stopped all of the supplements and remedies after having severe numbness in the right side of my body for days. It took about 5 days off of everything for it to go away. I will continue to see her for body adjustments since I've had FANTASTIC results from that. I'll need to do some more personal research to decide which supplements I'd like to try again.

Meanwhile, I'm looking into expanding my nutrient rich diet. (I just posted about the Wahls Protocol - check it out!)

Are any of you familiar with and/or trying the Wahls protocol? 

Dr. Wahls is an MD with MS that is treating herself through diet. Her story is incredible, and I think has great implications for Celiac Disease and other autoimmune disorders. Her TED talk is here: 

After limited recovery going gluten free, I went Paleo and started improving. I started the GAPS diet, and got even better, but not yet 100% Maybe 60% (fatigue, pain, brain fog). I started seeing a great D.O. and have added in limited potatoes and raw milk. I'm doing better... but I noticed when I don't eat enough greens, I don't feel as well. My DO has also greatly limited my daily sugars (no sweeteners, and only some fruits - mostly berries)

Enter Wahls protocol: Grain free (she's also dairy-free), mostly legume free (very similar to gaps), but her focus is on getting nutrients through diet. Each day, she advocates three cups of leafy greens, three cups of sulfur-rich vegetables, three cups of bright colored foods. In addition to that, grass fed meats, wild fish and healthy fats. She also advocates eating organ meats once per week and seaweed once per week. Of course, probiotics and ferments as well. She's on-board with many of the GAPS/Weston Price ideas. 

I'm experimenting with tweaking my diet to bring it to this level. I'm doing pretty well with the veggies and greens (although my low energy days are made worse when I don't have energy to make more!). When I eat this way for a few days in a row, I feel great. 

One thing I'm having trouble with is the organ meats. Grass-fed, organic is pricey and hard to find. Considering mail-order. I'm admittedly a bit scared by organ meats. Simply fear of the unknown, I know. I need to work that out. Also, I have trouble finding good fish that isn't $$$$. Fish in the store is notoriously mislabeled. Not going down that conversational road right now!

One thing she doesn't talk about is nuts. I'm currently cooking with (soaked, dehydrated) nuts... and some raw ones too - almonds and walnuts only, as well as sunflower and pumpkin. She also doesn't talk about eggs, but my DO wants me eating plenty of those, which I'm happy to do. 

I'll return and report as I can... meanwhile, have any of you tried this? Anyone interested in trying this?

For those of you that are super food science nerds like me (like I've become because of Celiac!), here is an expanded lecture by Dr. Wahls (complied on a paleo blog - scroll down) : Open Original Shared Link

Why did your doc say to go gluten free?

"doctor, it hurts when I do this!"

"don't do that."

I don't trust anything at an event like that. Eat before you go. Being food. Ask if you can have a clean plate and eat your own food.

People may ask, but give them a quick explanation and move on!

It's pretty common for your hormones to get messed up. How old are you?

I've enjoyed reading all of your thoughts. Some really weird shifts happening in my body now... Some good, some not so good. Cutting doses in half. People have been telling me I look really good, so that's a nice change.

The numbness/neuropathy I've been dealing with lately has been the most disconcerting. MD's just want to run another MRI. The body is a pretty crazy "machine". I do enjoy learning how it all works. Too bad I'm not getting paid for that. ;-)

Hey Irish! Nice to hear from you.

Glad to hear you're doing a bit better.

Yeah, I've read all of that about the live blood tests, etc.

It's frustrating, because I really like the other stuff this lady is doing (body work, supplements, nutrition, appropriate exercise program). I told her up front I didn't believe in the stuff. Ha. I wonder if she'll work with me on my terms... Like let me pick and choose the part of treatment I want. It's just hard to know which parts to trust when she's done such a good job with half of the treatment, but lives in looney land part of the time.

I still think she's more sane than at least 90% of the MDs I've seen. o.O

There are some AMAZING controversies in the chronic fatigue community. But, so many people have been through similar journeys (Many doctors, "it's all in your head").

By the way, while I'm obviously far from better, I am now working 2-3 hrs most days and prepping 80% of my own food, driving, AND from time to time am able to put in full long day of activity (as long as I can prepare/recover). Trying to have balance and not over-do (too often!).

SO sorry to hear this. He has NO IDEA how horrible he is being. 

...look into separate kitchens (whatever that means to you) if he won't get gluten out of the house......

Some hairsprays DO contain gluten. As do other styling products. I've been going to the same stylist for years...and he knows to not use any unapproved products around me! Bring your own if you have to!

Pressure urticaria is a real thing! But.... as your body heals, it may lessen as well. Inappropriate histamine responses = hives. This may be a long shot, but you may want to look up histamine intolerance - cutting back (not necessarily eliminating) certain foods may help.

Or your immune system is still just freaking out a bit. Hang in there, and keep the heavy bags off of your wrists. Take the offer of "need some help to your car?"... the bagger kid could probably use a walk anyway.

I haven't been on for a while, but I wanted to throw a topic out and hear your thoughts.

I am, in general, a rationalist. I believe in science and evidence - but I also know there are things we don't understand yet and I'm open to that. For example, I feel better after acupuncture. I don't know that it's for the same reasons my acupuncturist says it is... but it seems to work, so I go sometimes. I don't want to bring religion or politics in to the discussion, but lets just say I require supporting evidence. 

I have come to distrust most MDs. I've had terrible experience upon terrible experience with doctors who know less about my conditions (Celiac, complex migraine, others) than I do. I have been in the driver's seat with my doc, doing the research myself and asking for tests. It's been working, but I've hit a health plateau. 

After a year on the GAPS diet, I'm much better... but still no where near 100%. My condition has now been dubbed Chronic Fatigue Syndrome. I have debilitating fatigue, and neuro symptoms have increased. It does not appear to be MS or Lupus or Fibro (but lots of overlapping symptoms at this point). I've had MRIs, blood work, thyroid...all the tests that are recommended. Only abnormalities: low iron/ferratin (old problem) and *slightly* low on one of the white blood cell types. Vit D is "normal", but low for where I want it. 

One of my friends had an amazing experience healing with a Doctor of Osteopathy about an hour away. I got on the waiting list, and have now seen her 3 times. 

The good things: 

-She has re-aligned by body and cured 85% of the physical issues (pain, mobility) that I've been working with physical therapists and chiropractors for years

-She seems to really "get" the gut thing and has me on a slightly modified version of GAPS. Still grain-free, big on probiotics. I trust her nutrition and diet advice. It is aligned with what I've read and experienced. Although I get to eat a potato once in a while now. YAY.

-She has me on some natural supplements that have increased my energy slightly. 

-She seems very optimistic that I can recover 100%

The sketchy things that really make my eyes cross (and the reason for my post):

-She did live blood testing - which I found truly fascinating. I loved being able to see my cells and other *stuff* in my blood. However - quack watch and other sites say it's BS. She pointed to some groupings of cells that did NOT look like the lovely red blood cells or goofy white cells you see in pictures and told me I have "mycoplasma". I've spent some time researching that and have mixed feelings. 

-She used this other crazy machine (even she admitted it was crazy sounding)  - EAV testing. Also huge red flags/quackery on quack watch. BUT - the machine flipped out in two specific places and I don't have an answer for that. She let me play with it a little and answered the questions I hurled at her.

-She uses homeopathic remedies - I just started taking them. I DON'T BELIEVE they will work. But I'm taking them anyway (!!!) because: 1)  my friend got better under the care of this doc 2) no negative side effects that I know of (unlike most pharmaceuticals - I've had awful experiences) 3) I have no idea what the #*!! else to try. At this point, I'm ready to hike a volcano, burn effigies, witchcraft, voodoo, medicine man, pray to every god created...because I don't know what else to do! I've spent THOUSANDS of hours researching and trying to get healthy. I will not give up.

A note about these specific homeopathic remedies. They are low (?) dilutions - some have been diluted to only 1:100 or 1:1000 .... so it's not like the grain of salt in a swimming pool that some are.

Mixed:

-She also said she thinks I have Coxsackie virus (that is chronic/never cleared). When I first got sick pre-diagnosis, I had a nasty illness that hit me hard. I missed a month of work. It wouldn't surprise me if there was SOMETHING like that wrong with me (the way Lyme Disease or Epstein-Barr hits some). No one has been able to figure it out.

Thoughts? Anyone have any GOOD experiences with alternative/complementary medicine/doctors? I'm sure some of you will want to wave your BS flag - and that's fine, too... but I would love to hear if anyone has positive stories. 

Thanks for reading this far! =)

*Eh. I put this in the wrong place. Guess I forgot how to use the board. Should probably be in the "coping" section.*

I haven't been on the board for a long time...maybe a year. Looking for some support, I guess.

It's been four years since I was diagnosed, and I'm still not doing all that well. I've pretty much given up on my mainstream doctors...it's just frustrating every time I go. I've been on the GAPS diet for one year. It has helped, I've been able to do more, but I can still only work a few hours each day, and my body is still doing some whacky things. Mostly, it's the fatigue that gets me down. That, and I have some chronic pains that haven't gone away yet. Lots of other typical things you read about from us non-standard symptoms people. 

Anyway, I've made an appointment to see a D.O. ...out of pocket - she doesn't take insurance, and she's not cheap. They booked me SIX MONTHS ago. She really helped out a friend of mine, so I'm hoping for a similar experience. She's an hour away - not terrible, but will definitely take a chunk out of my day and energy to get there.

...I'm trying not to put all of my eggs in one basket, but in all honesty, I'm going to be distraught if she doesn't have any new ideas for me. 

I'm nervous, excited and my usual insomnia is even worse. I've had a support system here to help me, but circumstances have changed, and I'm feeling quite alone. There are people around... but you know how it is - you can only talk about your health so much. I am already the first to leave at social events, and I don't want to be Debbie Downer or be getting *that* kind of attention.

So, yeah. Wish me luck. Trying to keep my chin up no matter what.

I know this is a few months old, but I'm looking through to see other people's histamine comments.

Years ago I was diagnosed with "chronic idiopathic urticaria and angioedema" (hives and swelling - unknown reason). I also had dermagraphia... The swelling was actually a delayed pressure reaction. Look up pressure urticaria. It is well-known.

From what I can tell, if your body is in a place where histamine is overactive, this is one of the possible reactions. Not in your head at all! =)

I'm trying to find info on healthy gut bacteria and histamine... that's the research road I'm going down. It seems a healthy, balanced gut will fix so many things! Now...... how to get there!?!

Cheers.

What a great conversation. It's nice to have people to relate to! So many "atypical" issues here that are simply "just" Celiac. I feel like I'm always looking for more answers to fix my fatigue, aches, brain fog... I will continue to do so, but more than likely what I need is time-time to eat good, nutrious food. Time to rest. Time to understand my body and know that "more exercise to get in shape" isn't always the right answer! Some days I can only walk a few minutes at a time. Others more than an hour!

Last night I was teaching/directing my Tuesday night music group (adults)... There was a point in time (happens periodically!) when I just couldn't make my mouth say what my brain wanted it to! Fortunately, they've seen it before and we can generally just laugh about it. It's like oral ataxia...my tongue and lips just can't quite get their balance. (yes, I just made that up!) It's funny because most of them are at least twice my age, yet we have many of the same body-is-betraying-me type of experiences. In my case, however, I'm VERY hopeful that it is a temporary condition. What a painstakingly slow process recovery is for some of us!

And on that thought... Never ask the universe for patience. It just may give you the "opportunity" to develop it.

Cheers.

In short, two questions: what tests should I ask my doctor to run to test for Hashi's? Is it possible to have "normal" TSH, T3, T4 and still have it?

Longer version if you have time to read: In 2005 I was diagnosed with chronic idiopathic urticaria (hives) and angioedema (swelling). I spent a hellish year on heavy antihistamines (don't remember much from that year!) I was able to taper off and the hives didn't come back except for a two or three strays. A couple times I'd get a hive on my eyelid, but only in the next couple of years.

Fast forward to Celiac Diagnosis 2009. Three years later I'm still very fatigued (a bit better, but not well enough to fuction independently). My body temp is often low, I'm underweight although I eat a lot. Most of the heavy anxiety I experienced just before dx has gone away with gluten-free, but I still have stray anxiety when I'm in need of food or during PMS. Tonight I had eaten and it's not that time hormonally when my eyelid started to itch pretty badly. It made me anxious (adrenaline) and I got up to look. I had a hive! Just one-like in years past (chronic urticaria tends to strike eyelids and lips most, and it's not an allergic reaction, but an autoimmune one). So, I'm a little freaked out because I don't want to go back to that issue.

I spent a lot of time researching chronic idiopathic urticaria in '05, but seven years is a long time in the current autoimmune world, so I thought I'd look it up again. Tonight when I looked, two of the first three hits said that many people with chronic urticaria have autoimmune thyroid issues. By many I mean 30-40%. That's pretty huge.

I'm currently on GAPS diet (grain free, etc), and have tested for food allergies (98-skin prick) and have none (although there seem to be a few foods I can't handle for other reasons. I'm fairly certain my eye hive wasn't a food or environmental allergy. If you've dealt with chronic hives you'll know what I mean. I've also started reading about histamine intolerance. Fascinating.

Thoughts? At least I hope to get my questions on Hashi's answered.

I'll definitely have my folate checked next time I go in for blood work. Last time it was >20 and "normal" is listed as > 5.35 ...which doesn't really make much sense. What's with the >? The way I read that is mine was greater than 20, which is high (standard reference range I found online went to 17, so it's not absurdly high). I'm not taking that vitamin anymore anyway - may have been over-supplementing at the time. That was many months ago, though.

My doc did say she'd keep testing things if we can think of things to test, so ...anything else I may have missed?

Of course, I'm going to have to (attempt to) qualify for new insurance soon...so I may wait until then.

Yeah, I've looked into other foods. I found that I do better with no grains. I'm on the GAPS diet, which among other things is grain-free and soy-free. I've tested against nightshades, fructose, dairy and a bunch of other things. I eat only whole, unprocessed foods, organic when possible. I can't afford to eat all organic meat - I'm on a high calorie diet - but chicken and broth is all organic.

Thanks for all of your thoughts. It's definitely not low B12 (mine is over 900) and it isn't hemochromatosis (have checked iron labs carefully) unless there is something about it I don't know. My saturation has generally been on the low side.

>>>As for what you can do with your time? Well, if you have any hobbies that can keep your hands busy that you can handle they can be a good option.>>>

I do have a couple of good hobbies which give me some good positive things to focus on as well as some social life. I guess my biggest trouble is knowing how hard to push and when vs. when to back off and relax. I know I'm making progress, there was a time I couldn't raise my arms to wash my hair and now I can go for 20 minute walks many days.... It is difficult for my friends to understand why I just can't exercise more to have more stamina like they can! Not to mention that I'm underweight and have to choose where to expend my energy!

Anyway...I'll keep looking for answers... Patience has never been my strong suit.

My B12 is above normal and stomach acid seems to be fine now (I was having heartburn/ulcer type of issues, went on the GAPS diet and that resolved. Supplementing at that time was painful). Is there a stomach acid test?

Thanks for the sympathies. I'm still hoping there will be a way to crawl out of this hole.

Isn't chronic fatigue syndrome considered a diagnosis based on excluding everything else they can come up with to test? Please correct me if I'm wrong. There seems to also be a variety of theories on the best treatment for it.