Improvement! Probably 50% Better!

[sue1234]

I’ve been wanting to write this for a few weeks, but I almost feel like I’ll be jinxed if I do!

Like my title explains, I am probably 50% better lately than I have been since my POTS began suddenly 7 years ago. I am not exactly sure what did it, or if it is a combination of things, but this is what I did:

1. I went seriously gluten-free. I had been tested a few years back, but the biopsies were negative. I had all the usual labs done, but only one was 4x the upper limit(deaminated gliadin IgA). The “usual” diagnostic labs were negative. So, they told me I did not have celiac, so I wasn’t serious in my diet. Last summer I read where the lab I was high in DOES indicate celiac, so I decided to eat gluten-free. I can definitely say my stomach bloating is 99% gone! I had one bad bloat in December and one a couple of days ago, but of course I try and figure out what new thing did I eat.

1. Last fall I read up a lot on vitamin D disorders, as I have a genetic issue where my bones grew crooked(a couple toes, a finger, scoliosis, hip deformity at birth but braces corrected that). I am almost the opposite of EDS, as in NO flexibility, yet on the same scale of collagen diseases. Anyway, I saw a bone specialist and we agreed to seriously get my vitamin D levels up. I have a history of occasionally having low blood calcium here and there, even before POTS. Nothing life-threatening, just low on labs. I’m sure, looking back, it might have been what caused random things like out-of-the-blue pins/needles in my hands or numbness around my mouth. I have read soooo many medical articles linking low vitamin D to autoimmune illnesses, that I decided this was a priority to get my levels up, no matter how slow I had to go. I don’t tolerate the whole 50,000 IUs, nor do I tolerate the over-the-counter D3 supplements. I have settled on squeezing roughly 10-15,000 IUs out of the capsule onto a fatty bite of food.

1. I have been taking magnesium, roughly 500-1000 mg/day. I have tried this over the last 15 years, but when I did, it would cause esophageal contractions. I would quit it just a few days after starting. The only thing I can think as to why now I can tolerate them is getting my vitamin D up is also bringing my calcium up to a more stable level, and we know magnesium works together with calcium. This is my assumption.

I am not sure why I am better. I’m sure it is related to the things I have listed, but I don’t know which. I’ve been doing all of them since last September. I still could not tolerate exercise, but I started doing plain daily chores. I began baking my own gluten-free breads, rolls, etc., which forced me to stand in the kitchen for 10 minutes here and 10 minutes there. As a month passed, I noticed I was standing for 15-20 minutes here and there.

At the same time, I began helping my husband with our business. The things I was doing was not labor intense, but repetitive. It required mostly sitting, but I used my arms to fill bags and move them after weighing them. I had to do standing jobs for maybe 10 minutes at a time. But, the first time I worked, after an hour of sitting and using my upper body, I was through. I felt my usual POTsy bad. By a couple of months, I was able to work 2 hours a day and just beginning to feel worn down. Now, 7 months into it, I usually work everyday for about 2 hours and feel fine. I am working at a better speed/pace and getting a lot accomplished.

Also, my son got married in March. I don’t know if y’all remember me asking months ago how in the world am I going to do the wedding/shower stuff? Well, I did both showers and ENJOYED the social interaction! I did bring my big reclining lawn chair and stayed sitting the whole time, but it was great. Also, I WALKED DOWN THE AISLE FOR THE WEDDING…AND DIDN’T FAINT FROM POTS PANIC!!! I was sooooo thrilled! I mingled at the reception, stood up for all the pictures, helped host the rehearsal dinner the night before(totally catered, so no work on my part!). Last summer when my son announced that they were getting married, besides being thrilled for them, I was beginning to plot the easiest excuse to not make it. It turned out just like I wished it should be.

The ONE thing I CANNOT get rid of is the heat intolerance. I learned that the colder it is in my environment, the better I must vasoconstrict and it helps me stand a lot longer. With spring here and with having a few “warm” days with humidity, I am having my flushes and pooling, which don’t help me be upright. I wish that would really be fixed, as I get tremendous itching once I get hot----like serious, being stung by 1000 ants feeling, itching on my upper body.

So, I hope I haven’t jinxed myself reporting this! This is my thought, and it is just my thought on all this. Whether I am full-blown celiac or not, my body was fighting that gliadin protein. I would think this might classify as an autoimmune reaction. I feel that even with celiac, they don’t know all the far-reaching effects on the body. Gluten, in susceptible people, causes a mimicry-type attack(maybe not the right term) on some parts of the body, and removing the offense helps heal the place that was being inadvertently being attacked. There are places throughout the body that have similar ???(can't think of what it's called) that are extremely similar to the gliadin proteins, so when the body attacks the gliadin, it also attacks those places. I know some are in the brain, but some are in the collagen matrix.

Back to the wedding thing. In the last few years I have been so “anti-social” due to my high anxiety. I was able to tolerate the whole wedding stuff with just a ¼ dose of my usual Xanax nightly sleeping dose. I feel better psychologically now, without all that social anxiety. I KNEW it was not a primary issue with me, as I had not had that before POTS. This was proof that it was not permanent.

So, I don’t know if it was diet, vitamin D or magnesium that did it. Or, all together. I am thankful for this progress, but I will not stop looking for the root cause or contributor. I honestly don’t think celiac would cause a sudden-onset like in my case, but maybe the inability to digest nutrients aggravated the root cause. I feel like getting the celiac under some control might have put the body in a less ‘attack” mode. Lessening inflammation and autoimmune issues has GOT to help at some point.

I have to say that my cognitive abilities have not really improved. I still have a day here and there where I don’t have as much energy. But, overall, I can stand up longer. That is the main improvement. In the last few years, I would walk into maybe two stores per year, and little stores like drugstores. Last week I walked into 3 medium size stores, and walked around for about 10-15 minutes each. After days like that my lower back is killing me, but it gets better by the next day. I am sure I am slowly building up muscles that haven’t been used in 7 years.

So, exercise did not work for me. But, slowly, slowly incorporating more daily activities has helped. The biggest improvement is less lightheadedness. Energy levels are somewhat improved. Cognition did not improve. I am definitely thrilled with a 50% improvement. The last thing is figure out why I don't sweat, thus the heat intolerance. I'm sure that is connected to my root cause.

[Mydoggielovesme2]

Wow! How wonderful for you. It is sooooo nice to hear about someone improving. I was just diagnosed with celiac, and have only been eating glutton free for 5 days. Still trying to figure out all the hidden stuff, but am on my way. I hope and pray that I will see improvement also. I'm sure there is going to have to be some. Thank you for sharing your story. Best wishes for continued improvement.

[issie]

Yayyyyyy SUE! So happy that you are better!

Issie

[Joann]

Awesome. Good to hear someone is getting better!

[HopeSprings]

Sue, this is wonderful news! 50% improvement is a lot and I hope it only gets better from here. I am also so happy to hear that you made it both showers, the rehearsal dinner and the wedding! That took courage and I'm so glad these ended up being positive experiences for you. Let's hope you're on the road to recovery!

[Kellysavedbygrace]

That is wonderful news!

Can you explain what and why you squeeze the Vit D into food? I supplement with Vit D and have not noticed any improvement. It has been off and on low in my blood work.

[Rachel Cox]

That is such positive and wonderful news, thank you so much for sharing! Long may it continue :-)

[Enid]

Don't worry about jinxes - the good karma by sharing this positive news has to outweigh any jinx factor!

[sue1234]

Thank you ALL for the well wishes!

Kelly, I have the prescription vitamin D 50,000 IU of D2. I cannot tolerate all 50,000 at once, so I prick a hole in one end and squeeze out roughly 1/3 of the capsule onto food. I make sure it is with something that has fat in it, as it is a fat-soluble vitamin. I'm assuming that would help the absorption. When I say fat, I mean like a bite of my peanut butter sandwich or cereal with full-fat milk.

[yogini]

So happy for you! Hope you continue to improve!

[Katybug]

Really wonderful news! I'm so glad you were able to truly enjoy the wedding.

[Chaos]

Super news! Congrats on making it thru the wedding and all the associated activities. That right there was a HUGE accomplishment and a big improvement!

How have your blood sugars been behaving with the changes you've been making?

[Dizzysillyak]

Great news. From what I've seen your reaction is typical for gluten intolerance. Celiac dot com or any of the other gf sites can confirm this. But I hear you on not knowing what exactly helped.

Fwiw dr hadjivassilou tells his patients to expect it to take one year to recover from their

gluten ataxia. I'm assuming he's saying it can take at least that long for the nerves to heal. People in

my celiac support group told me to give it two years.

My recovery (partial) has been a roller coaster of emotions. Mostly good. I'm disappointed that certain problems, pots and hypoglycemia, are still with me. But grateful to have most of my cognitive capabilities back, digestion is much better, etc.

Have you had nutritional testing yet ? A lab near me runs these without a doctor's prescription.

Celiacs are prone to nutritional deficiencies but oddly aren't typically tested.

My heat intolerance vanished after 2 + years. I don't know if it's because I switched to a paleo

and low oxalate diet at that point.

Tc ... D

[Kellysavedbygrace]

Dizzy, what nutritional deficiencies did you have? And are there any common ones associated with gluten ataxia? Forgive me if you've answered this before.

[puppylove]

That's great! So happy you're feeling better!!

[corina]

That's really great Sue, I'm happy for you!!!

[Dizzysillyak]

I wasn't tested for nutritional deficiencies until 3 years post gf diet and 2 years post gluten ataxia. My regular traditional gps didn't pursue this only my integrative doctor did. Duh ! At that point I was low on b12, chromium, e, d and

whatever healthy fats have (sorry I can't remember right now).

Recent cdsa shows I'm still low on good bacteria, elastace and healthy fats. I'm taking creon now

to see if that helps.

I'd look at dr hadjivassilou's info to see if he knows what nutrients are involved. Fwiw, I loaded up on brain

foods 6 months to a year after I started my healing process in 2005. I was too sick the first 9 months with what I was told was full

blown celiac disease. I was sensitive to most food and it all hurt going down.

Fwiw, my body over produces antibodies to gluten. Small amounts of cross contamination result in a

high antibody level in the stool test. My serum test didn't show antibodies when my stool test did.

These tests aren't looking for the exact same antibodies tho.

I get a little ataxia back with cc. I just walk like I'm a little drunk now when before I was all over the place. I also get insomnia and myoclonus. A combo of Klonopin, 5htp and melatonin completely reverse my sleep disorder symptoms within 30 minutes now.. Yay ! Kow. My dr used to tell me

not to worry about not sleeping at night for days on end. Eventually I'd sleep. Lol. Go google !

Tc ... D

[looneymom]

Glad you are doing better. Keep sharing your tips.

[sue1234]

Chaos, unfortunately my hypoglycemia is still there. Ugh! I'd love to go half a day without thinking about eating!

Dizzy, I have had nutrients tested here and there over the years. So far the only low one was the vitamin D and occasionally the calcium. I do take B12 injections and have for about 12 years. My B vitamins are always good(sometimes over-range) and NOT taking any supplements.

[Monstrosity]

Good for you glad to see this!

[Dizzysillyak]

Sue,

Did you get extensive nutrient testing ? As in e, chromium, etc etc. Not the typical ones most doctors

order.

Have you looked at neuroglycopenia ? Low blood glucose in the brain. I've been using dex 4 glucose tablets for about a month

now and they're helping me tremendously. I only take one or two at a time but take them freely.

I'm hoping that within time the additional glucose in my brain will help my oi. It's an obvious

problem for me. I've been treating this with oj, raisins or tiny bit of coffee with a ton of sugar and not knowing what it was for 6 years now.

I started at thread on phoenix rising about this. Just search on neuroglycopenia. There is info in that thread about isf (interstitial fluid) that I want to research further. Isf contains glucose, amino acids,

sodium, etc.

Tc .. D

[sue1234]

I am familiar with the term neuroglycopenia after all my reading on hypoglycemia over the years. I believe I have this when I actually do get below around 55. My thinking abilities really narrow down to grabbing glucose tablets at that point. Right before that point I find I get very quiet and focused. However, I try to prevent getting low as best I can.

I actually only take glucose tablets when I have reached that low. I cannot do sugar freely, as it causes a huge insulin release for me, which once again sends me spiraling down. I have to do a delicate balance between having enough sugar/carbs for energy(physical and mental) and not too much to cause an insulin surge. Plus, if I consume an "average" amount of sugar like a normal person would, I gain weight very quickly.

[heissovereign]

I an glad you are doing better, I started my gluten free diet tonight. I was serious on it before and i felt great but due to all the stress i have endured i gave up eating healthy. Well i am trying again

[Dizzysillyak]

I think my neuroglycopenia is constant regardless of my serum blood glucose level that shows up when tested. The dr in the first article I quoted on that pr thread said that measuring glucose via blood isn't sufficient to tell what our glucose levels are in all parts of the body at a given time. He said that glucose needs change in certain parts of the body based on need. I'm sure he explained it better than I just did ... lol ...

I think my brain isn't getting all it needs while the rest of my body is ok. The brain uses a lot of glucose.

I have hyperinsulinemia too but found out that eating a little more sugar regularly for several months stopped me from reacting so harsh. My body ajusted to it. I couldn't eat a whole orange at one time when I started but was up to a whole one easily with a couple of months.

I've put on weight in the last 4 months since I stopped the paleo diet and started eating grains and legumes. And waay too many sweets. These tablets only have 4 calories per tablet. The reason they work is because it's absorbed quickly. I only take 1 or 2 at a time. I'm not sure why they work so well on my brain. Other than the obvious reason that they dissolve in the mouth.

tc ... d

[Dizzysillyak]

Here's that thread on neuroglycopenia .. d

http://forums.phoenixrising.me/index.php?threads/neuroglycopenia-low-blood-glucose-in-the-brain.22793/

Unfortunately, hypoglycaemia is an ambiguous concept. There is no single compartment in the body at which all glucose is at the same concentration [3].

Because the uptake of glucose is from the interstitial fluid (ISF) surrounding the target cells and the supply is into the bloodstream, the concentrations will be unequal under dynamic conditions.

When the uptake of glucose is larger than the supply, its concentration will decrease earlier in the ISF than in the blood [4].

On the other hand, when the supply of glucose is larger than the uptake, its concentration will increase earlier in the blood than in the ISF.

Therefore, when measurements are made in the blood, the glucose deficiency will not be optimally detected.