Newbie - My Story And Questions

[Dizzysillyak]

I'm new here, but not new to OI. My primary diagnosis is CFS/FM and I've been diagnosed with that since 1990 - 2. BUT, I found out in 2005, that I'm actually an undiagnosed celiac with nuerological + other auto immune problems. And CFS/FM maybe ? ? ? I'm not sure how my CFS/FM symptoms fit in just yet.

I was diagnosed with OI along with a multitude of other symptoms back in 1990 - 2 but since I was sooo sick all the time this wasn't addressed specifically. (Hmm, I wonder if each of my symptoms had been addressed seperately instead of under that CFS/FM diagnosis if I'd still be disability ... )

Needless to say, my digestive issues are considerably improved since giving up gluten and other foods that I was intolerant to.

I had gluten ataxia but that went away after 1 year on the GF diet. I was using a motorized cart everytime I went grocery shopping because my legs felt too wobbly to carry me and I lost my balance a lot. I mention this because if I hadn't recovered from gluten ataxia, I would've thought it was from OI. The difference is that now I'm not having any balance issues while walking and my legs never feel like they are going out on me. Prior to this, after only a few minutes, I would start bumping into whoever was walking next to me or into racks of clothes, etc. And if I forced myself to walk any distance, I was actually having to think about which leg to move.

I used to hang onto the shopping cart if they didn't have any motorized carts available and by the time I made it to the cash register I was a real mess. My legs were wiped out ... But since gluten ataxia involves the eye muslces too, I couldn't focus on the cashier, prices, or anything. BTW, Dr. Hadjivassilou states that gluten ataxia is related to weakness in the arms too ... My eyes still refuse to focus at times but never as bad and I can wash my hair now without giving my arms a break.

For the most part, I'm feeling much better. No more gluten ataxia or brain zaps ... and I only get myoclonus (jerking), facial twitches, insomnia and or narcolepsy, if I've been glutenned. I have less brain fog and more energy.

The last time I had severe myoclonus was after getting my hair washed and cut at JCPenneys. My hairdresser used a shampoo with wheat protein and I didn't think about it until it was too late .... That brought on the worst jerking I'd had in 2 years. This was my first exposure to wheat protein in shampoo since I'm careful about my shampoo, etc. at home ...

At this piont, I'm left with orthostatic intolerance, some fatigue, cognitive problems and post exertional malaise. Sounds bad after typing it but it's an improvement to me ...

I'm not up all the different types of orthostatic intolerance .. all I know is my BP dropped 20 pts 2 minutes after standing up the last time my GP checked this. That was May 2008. And this was checked because I insisted. My BP was 70 something over 50 something that day when I arrived. And when I asked the nurse about it she said "Well it was almost that low the last time so apparently you're BP just runs low. " I was curious so I laid down while waiting for my doc and by the time he took it my BP was 120 something over 90 something. Quite a difference .... My GP then had me stand up for 2 minutes and tested it again. It went down to 90 something over 70 something. I wonder how long it would've taken for it to get back down to 7?/5? again ...

I'm looking at OI/dysautomia now because now when I walk, my body feels heavy and I struggle with thinking and deep breathing. Going upstairs will bring all this on immediately but my cardiologist says my heart looks good other than my LBBB. Not that I think he' a genius ... but I'm not a surgery candidate.

I googled OI and found a great article on how to deal with OI by John Hopkins. I started salt loading according to their treatments steps in May 2008. Only I didn't use their food guide ... lol ... I'm using a variety of salts including Himalayan, Celtic and Redmond Real Salt. Immediately when I added salt to my diet, my BP went up and I could vacuum for 15 minutes. Prior to this, I was only able to vacuum for 5 minutes and rest for up to an hour before continuing. Obviously I need some sodium ... .. I chose healthy salts so I get the minerals. Oh and this works better for me if I drink salt water ...

In October 2008, I started PT for OI. I had to take a break when company arrived, but overall was in PT for OI for 10 weeks. I can't see how the PT helped my OI, but it has made my legs stronger. I plan on continuing it anyways. Has anyone tried this ?

Does anyone have to lay down flat for 20 - 60 minutes off and on during the day to recover ? And does anyone know why this works ? I was told to look into vestibular excercises for this ...

So here I am ... Brain dead from typing this and looking for help ...

Thanks ... Marcia

BTW. At this point, after discovering that I'm extremely sensitive to gluten, have chronic hypoglycemia, candida and kidney stones, I've settled on the Paleo/low carb/low oxalate diet.

[Ernie]

Hi Marcia,

Welcome aboard.

I found your post very interesting to read.

I have very similar symptoms to yours and I am presently under GI investigation. I have that sensation where I can't feel my legs or they weight like a ton. I also bump into people when I walk besides them. I keep excusing myself for bumping them but there is nothing I can do other then staying farther away when possible.

I find it interesting that in your case some of your symptoms were caused by the celiac. I know some of mine are caused by electrolytes imbalance.

The PT helps because you have more leg muscle tone which helps pump your blood up your legs.

I have to lie down regularly during the day. I cannot sit on a straight chair for more than 10 minutes (without fainting). I am reclining or lying down most of the day. I was bedridden and homebound for 7 years, so being able to walk again is new for me.

[Dizzysillyak]

Hi Marcia,

Welcome aboard.

I found your post very interesting to read.

I have very similar symptoms to yours and I am presently under GI investigation. I have that sensation where I can't feel my legs or they weight like a ton. I also bump into people when I walk besides them. I keep excusing myself for bumping them but there is nothing I can do other then staying farther away when possible.

I find it interesting that in your case some of your symptoms were caused by the celiac. I know some of mine are caused by electrolytes imbalance.

The PT helps because you have more leg muscle tone which helps pump your blood up your legs.

I have to lie down regularly during the day. I cannot sit on a straight chair for more than 10 minutes (without fainting). I am reclining or lying down most of the day. I was bedridden and homebound for 7 years, so being able to walk again is new for me.

Ernie,

Thanks for replying ... It sounds like you could be a celiac too. Please, keep in mind that you don't have to be a celiac to have problems with gluten though. Dr. Hadjivassilou proved in 2002 that gluten antibodies can damage the brain without affecting the digestive tract. If you google gluten ataxia you'll see his research. I wouldn't want you to miss out on this if your GI isn't up on this ...

FWIW. I'm not convinced at this point that celiac disease doesn't come and go on it's own despite eating gluten. I was very sick in 1990 and at one point all I could digest was Ensure. I was losing weight quickly, my skin was grey and my family was very worried. Then for some reason, this stopped and I could eat anything I wanted again. Looking back, I would guess that my digestive tract healed .. IMHO, it's not such a leap to think that our bodies can heal themselves despite repeated assaults. Our bodies are amazing that way.

My legs never feel like they weigh a ton anymore nor do I bump into anyone. Embarrassing, huh ? And for some reason, I never felt like I was going to bump into them until I'd almost knocked them down .. I distinctly remember my name being yelled out. That was gluten ataxia. My legs aren't as strong as they could be but that too heavy to lift feeling is gone. BTW, it went away majically one day after being GF for one year. No warning, no signs whatsoever ...

I have a good friend who was bedridden for years too. She started taking supplements (based on the research she found on CFS / mitochondria / etc. ) last year and is able to sit up too. Not for long though. She and I were discussing this recently and she is going to look at the idea that she may be deconditioned. The way she is reclining while sitting isn't optimal for back muscles. I'm thinking deconditioning may be why I can't go up the stairs too ... I'm disappointed that the excercises didn't do more for me.

Edited to add ... Here is what I consider to be the biggest and most comprehensive group of gluten intolerance articles on the web.

http://jccglutenfree.googlepages.com/

[Ernie]

Hi Marcia,

Thanks for the information and the link. I just finished reading the information and I think I am going to give it a try on the gluten diet to see what improvement I can get. It's the first time I speak with someone who has similar problems to mine and has celiac.

I had one blood test for the celiac disorder which tuned out negative. I had a colonoscopy 3 weeks ago. The doc told me that I don't have Chron's but I did not get the result of the biopsy yet. I will see my GI doc in March to get the result. I also have anemia and many vitamin and electrolytes deficiencies.

I believe that my legs feel heavy when the blood pools a lot because I get that feeling when I stand for some time (2-3 minutes) or when I walk. I never have it when I am supine unless I have just fainted. Then it's my whole body that weights a ton.

I strongly believe that our body has the capacity to heal. I have seen many miracle stories of people who were suppose to be incurable get better.

You are probably deconditioned because it has been so many years that you have been limited in your physical activity. One way to find out is by starting to do some light cardio like walking for a few minutes and then increasing as you can. Going upstairs for POTS and/or NCS is most of the time a challenge or at minimum it triggers symptoms. I remember when I was 19 years old and swimming 2 miles every single day I could barely walk one flight without passing out. People were telling me I was out of shape!

Exercise is very important for us but you have to respect your limits and not push yourself because you can fall in a POTS hole. It's a careful dosing. Then when you see that you can increase your walking distance (and slope if you use a treadmill) you will be able to conclude that your problem is caused partly by being deconditioned.

[Dizzysillyak]

Hi Marcia,

Thanks for the information and the link. I just finished reading the information and I think I am going to give it a try on the gluten diet to see what improvement I can get. It's the first time I speak with someone who has similar problems to mine and has celiac.

I had one blood test for the celiac disorder which tuned out negative. I had a colonoscopy 3 weeks ago. The doc told me that I don't have Chron's but I did not get the result of the biopsy yet. I will see my GI doc in March to get the result. I also have anemia and many vitamin and electrolytes deficiencies.

I believe that my legs feel heavy when the blood pools a lot because I get that feeling when I stand for some time (2-3 minutes) or when I walk. I never have it when I am supine unless I have just fainted. Then it's my whole body that weights a ton.

I strongly believe that our body has the capacity to heal. I have seen many miracle stories of people who were suppose to be incurable get better.

You are probably deconditioned because it has been so many years that you have been limited in your physical activity. One way to find out is by starting to do some light cardio like walking for a few minutes and then increasing as you can. Going upstairs for POTS and/or NCS is most of the time a challenge or at minimum it triggers symptoms. I remember when I was 19 years old and swimming 2 miles every single day I could barely walk one flight without passing out. People were telling me I was out of shape!

Exercise is very important for us but you have to respect your limits and not push yourself because you can fall in a POTS hole. It's a careful dosing. Then when you see that you can increase your walking distance (and slope if you use a treadmill) you will be able to conclude that your problem is caused partly by being deconditioned.

Unfortunately, the testing for celiac disease or gluten intolerance isn't quite what is should be at this point. Some say that the best way to see if gluten is a problem for you is to take it out of your diet for 1 year. According to Dr. Hadjivassilou it can take that long to get those antibodies out of your system. It took me that long to get over my gluten ataxia.

But others are using stool testing for this and I'm leaning towards that now. The blood test for celiac is specifically for celiac disease and won't detect gluten intolerance. I had stool testing done by Diagnos-Techs and it showed gluten antibodies. Plus a few other things like candida and egg allergy ... I would never have known about the egg allergy if the test hadn't shown it. Sure they give me gas, but who doesn't get gas from eggs ...

The fact that you have so many deficiencies is a BIG clue though. Celiacs are known for this. I was B12 and iron deficient in 2005 when I appear to have gotten "full blown" celiac disease (meaning everything I ate hurt and I had to go on the elimination diet). My GP neglected to have me tested for celiac disease though, so I can only assume that's what was happening. I was scoped 17 months post GF and still had damage though ...

I'm learning about all this as I heal. I finally got my nutrient and minerals tested by Spectracell and found out I was ok in most but deficient in chromium. I thought since I've been on a total health kick since 2005 that all my nutrients would be good by now. Obviously some nutrients aren't as easy to absorb as others ...

You talked me into excercising more often ... My PT has me doing minimal cardio ... I do it until I start to get fuzzy headed or winded then stop. Oh and I figured out, with his help of course, that I can last longer on the recumbent bike if I go real slow .... Interesting concept and I'm not sure why it works but it's something to do with allowing the blood to go back into those muscles to bring nourishment ...

Good luck with the GF diet ... beware of foods labelled GF that really aren't. We're having problems with cross contamination so stick to companies that are gluten free like Kinnikkinnick, Pamelas, Glutino, etc .... better yet, go Paleo ...

Marcia

[ajw4790]

Welcome!

Your posts are all very interesting. I will have to look into this more later... I still am not sure the absolute best and conclusive way to test for gluten intolerance??? I guess you discussed having to go gluten free for a year, other than that what is the gold standard? I think I have had blood tests and checked when I had an endoscopy. I get confused because it seems everything disagrees with another source etc...

[Dizzysillyak]

Welcome!

Your posts are all very interesting. I will have to look into this more later... I still am not sure the absolute best and conclusive way to test for gluten intolerance??? I guess you discussed having to go gluten free for a year, other than that what is the gold standard? I think I have had blood tests and checked when I had an endoscopy. I get confused because it seems everything disagrees with another source etc...

Thanks ...

I agree, it's very confusing ... Someday, soon I hope, everyone in the medical community will be up to speed on how gluten can cause problems other than celiac disease. The number of doctors who get this is growing ...

Here's a good link that might help you understand this ...

http://jccglutenfree.googlepages.com/glute...vsceliacdisease

I always recommend trying the GF diet for one year because that's how long it took for my ataxia to go away ... and Dr. Hadjivassilou recommends this to his ataxia patients ... I've seen others say that their ataxia went away quicker though.

The "trick" is to completely avoid all gluten though which means you have to stay away from those GF processed foods that are manufactured in a facility that handles gluten. I see celiacs taking chances with these foods, but I can't ... I'll get my myoclonus back ... which means I could get my ataxia back if I wasn't careful.

I figured since I'd been sick so long that getting nutrients from my foods was a good idea too so I've mostly eaten organic meats, fruits and veggies. Healthy fats are a good idea too ..

[shadesofgrey49]

I also bump into people when I walk besides them.

Oh wow I've done this for years. I always joke that I can't walk straight and if a cop ever made me walk the line, he'd think I was drunk.

Re: the gluten sensitivity stuff...I've been trying to tell various doctors that you can be gluten intolerant without having Celiac, but nobody really knows how to test for it.

Has anyone heard of serum IgG levels for foods? My allergist discovered my levels are high for eggs, wheat, soy and cow's milk, and so we're eliminating each thing for six weeks at a time because there can be false positives.

[Dizzysillyak]

I mentioned the gluten ataxia because I thought some of you might have this and think it was OI. Honestly, I would never have known the difference if it hadn't gone away ... I've been able to spin in circles and get up quickly from a laying down position since this was gone too ...

I never realized that I was going to bump into anyone until I about knocked them over and they yelled at me ... It wasn't so much the yelling but the actual sensation of bumping that awoke me to where my body was ...

FWIW ... From what I've witnessed since I started healing from CFS, I wouldn't waste a lot of time on getting doctors to understand this. I happily told all my doctors about discovering my gluten sensitivity, and walking normally, etc ... and none of them were surprised or necessarily impressed. I even ran into some hostility from some of those in the medical profession while researching my illness ... I have a great intergrative doctor now who supports my journey though ..

Isn't the test you mentioned blood work ? I'm terrible at remembering those allergy test names ... I still have significant memory issues ...

But, my doc used the stool test for gluten, etc on me the last time. She said it's more sensitive than the blood test. And since I'm supposedly gf (but obviously getting cross contaminated somewhere), she didn't think the blood test would show my antibodies anymore. We used Diagnos-techs, but there is also Genova, or others ...

Back to the blood test for allergies ... my DD has an intermittent severe allergy to peanuts and her blood work was negative for peanuts. Her doctor said that she should never eat these because she could die of anaphylaxis, but being a teenager she just had to try it ... She almost gave me a heart attack everytime I'd hear her struggling to get her breath. Luckily she only needed the Epi pen a few times ... Mostly Bendryl and her inhaler took care of the problem. TEENAGERS !! On the upside, she figured out the hard way that she can handle peanuts some days and not others ...

All this leaves me wondering just how gluten or other food allergies really work ...