Body Mass Index Poll (bmi)

[sue1234]

Dana, I am sooo with you on the "experts" not doing enough looking into the "why" of POTS. I know we don't all have the same underlying element, but I can gather that there might be 3 or 4 elements at the basis of most of us.

Mack's Mom--sorry if I asked this before, but has Mack gone on a gluten-free trial for many months? When you mentioned small intestine nerve damage, I know that is THE spot for gluten damage.

[juliegee]

Mack's Mom--sorry if I asked this before, but has Mack gone on a gluten-free trial for many months? When you mentioned small intestine nerve damage, I know that is THE spot for gluten damage.

Hi Sue-

No, but great minds think alike , he's been tested for celiac many times. Through a careful history,Dr. Rowe at Hopkins discovered the milk protein hypersensitivity despite the fact that all testing & even biopsies show no true allergy. Could be the same with gluten???? I must say bread I'd be surprised if there was a problem as bread is Mack's "go-to" safe food. Even when he was very sick, a piece of baguette was sometimes all he would eat. Still wouldn't hurt to try a trial period without. Thanks for the thought.

Julie

[jesse1919]

Hi. I couldn't vote. It said I need to answer every question. I don't have any of the issues listed in the second question. There needs to be a "none of the above" option.

[ramakentesh]

I could have been a champion boxer and wrestler at high school. I was the same size as all the other seniors even build wise but weighed as much as the year 10s...So i was taking on kids up to my shoulders. That and the fact i have 'veins like a person whose been in the desert too long' im thinking I fit the hypovolumia catagory pretty nicely.

A person with chronic hypovolumia would have a low BMI

[Dizzysillyak]

Mack's Mom--sorry if I asked this before, but has Mack gone on a gluten-free trial for many months? When you mentioned small intestine nerve damage, I know that is THE spot for gluten damage.

Hi Sue-

No, but great minds think alike , he's been tested for celiac many times. Through a careful history,Dr. Rowe at Hopkins discovered the milk protein hypersensitivity despite the fact that all testing & even biopsies show no true allergy. Could be the same with gluten???? I must say bread I'd be surprised if there was a problem as bread is Mack's "go-to" safe food. Even when he was very sick, a piece of baguette was sometimes all he would eat. Still wouldn't hurt to try a trial period without. Thanks for the thought.

Julie

Great info. I didn't realize they had correlated this gut damage to dysautonomia. I wonder if this explains mine.

On the gluten as a go to food, that was my go to food too until I developed full blown celiac disease and

it started causing diarhea and gut pain every time I ate it. I was 50 when that happened. My biopsy

17 months post gf still showed significant damage. I really think they need to find a better way of diagnosing

gluten intolerance so they can catch it sooner. Meanwhile tho, imho, strict avoidance is the only way to tell.

Tc .. D

[Dizzysillyak]

Sorry but I should've included this on my last post. Imho, tho this info coud use a sticky.

Thanks mack's mom ..

Btw. I was finally diagnosed as a celiac in 2007, 17 years after becoming disabled and 17 months post gf. And despite being gf, I still have

to lay down after I eat for my food to digest. I get horrible brain fog if I wait too long to lay down after eating. And I need to be totally supine.

I can hear and feel all kinds of gurgling when I first lay down after eating. If I don't lay down after eating, it feels like I have rocks in my gut. I just discovered that the less meat

I eat at one meal the better I feel tho.

My bmi has always been low. I'm currently 5'5" and 120. I work at keeping my weight up by eating

avocados, seeds and nuts.

Miss Patient 20-

You say that you believe your GI woes are connected to your dysautonomia. I'm sure they are. Do your doctors doubt that? The medical literature is pretty conclusive. Your symptoms of delayed GI functioning and constipation are pretty classic for nerve damage in the GI tract. GI symptoms were huge for my son when he first became ill. It was very scary. He was 5'8" at the time and a mere 100lbs. The doctors at Johns Hopkins actually performed an antroduodenal manometry test while he was on the tilt table. Sure enough, at the point he fainted, he also vomited. The testing was able to prove, not only delayed movement in the Gi tract, but retrograde movement associated with autonomic irregularities.

Are you treating your slow GI tract? There are some effective GI prokinetics out there that can make a world of difference. My son is still unable to eat without them. Many also need to take something for GERD and constipation. If the food dams up anywhere in the GI tract, severe symptoms will follow.

As far as weight affecting POTS.....Yes, in my experience, it seems to be MUCH worse when underweight and/or struggling to put weight on. My son's GI issues came before his dysautonomia symptoms. I'm convinced that he probably had mild dysautonomia his whole life, but when his weight became precarious THAT set-off the severe dysautonomia symptoms. Calming down the dysautomia symptoms was a big part of allowing him to eat better. BOTH sets of symptoms need to be treated.

We learned at Hopkins that my son had a severe hypersensitivity to milk protein. AVOIDING that has helped both his GI issues & dysautonomia issues. Identifying allergies and/or hypersensitivities & avoiding that trigger is crucial. You say you have infections? What kind of infections? how do you know? Share so that we can try to help.

Now for my meanderings about weight... I've had mild unDXed dyautonomia much of my life and fairly severe GI issues. Most of my life, I was underweight- 120lbs at 5'9". I was in and out of the hospital often with GI issues. I was even counseled for anorexia during one hospitalization. Grrrrrrr. I was there because of the acute pain I experienced when I ate. I WANTED to eat. When I had my gallbladder out a few years ago, I had a strange reaction to the trauma of the surgery and was unable to eat much at all for 6 months and my dysautonomia was out-of-control. I understand what you are dealing with. It's frightening as you feel so weak, fragile, and have no reserves to draw upon. When I'm very thin, I am completely exercise intolerant and can barely function. Even taking a shower and getting dressed is hard.

When I finally got on an effective med regimen. I was able to gain weight and feel stronger. Alas, many of my meds are antihistamines which are notorious for increasing appetite. The treatment for my illness caused me to put on more weight than I ever had . At my heaviest, I was up to 150lbs- huge for me. I was more stable (symptom-wise) than when I was stick thin, but that weight brings it's own set of issues. Fat, itself, changes metabolic make-up and caused my hypoglycemia and dyautonomia symptoms to flare again. Through old-fashioned cleaning up my diet and moving more, a lot more- I am at a very healthy 130lbs now. My dysautonomia is stable and I am blessed to be able to exercise which improves all of my symptoms.

Weight is tricky for those of us with dysautonomia. Many, like you, struggle to put enough on enough weight to be able to function effectively. Others, who are blessed to have figured out a treatment plan, may inadvertently gain weight. Once heavy, some simply can't exercise due to extreme symptoms. Many are too afraid to try. I've been at both extremes and back again It's not easy.

My heart breaks for you, Maxine. Seeing those you love being disrespected, neglected, and mistreated by doctors charged to care for them....beacuse they were stereotyped as obese??? I agree that doctors need to look at the whole person and listen to our stories as all too often, the illness itself, and sometimes even the treatment they prescribe, can cause the weight gain or loss in the first place.

[ramakentesh]

My personal belief is that low BMI might suggest hypovolumia.

[RichGotsPots]

before pots flare 185lbs BMI 24 after flare 150lbs around 21 BMI, will be worried if bellow 140lbs but still look too skinny right now..

[Sif]

I've always been a tiny, skinny thing but I lost quite a bit of weight when POTS hit me and I got down to about 84 pounds. I think it was mostly because my stomach wasn't working properly and I had no appetite for quite a few months.

My appetite came back x2 when I was put on Florinef though, haha. I'm at about 96 pounds and my BMI sits at 16.6 now which is about what it was when I was well.

[Allene]

Well, lessee. When my symptoms were at their worst (I was confined to a wheelchair, constantly pale as a ghost, and generally feeling even more ill than I did when I was recovering from open heart surgery) my BMI was 28.

I don't even want to know what my BMI is now that I've gained so much weight, but incidentally my symptoms are almost completely gone. The more I gained, the better I felt.

[ramakentesh]

The problem with this poll is that you have to answer a question negatively as if the premise is that low BMI in POTS has to be associated with stomach problems. My answer would be none of the above.

http://www.ncbi.nlm.nih.gov/pubmed/17624938

Reduced body mass index in POTS is associated with elevated angiotensin II

[potsyturvy]

I'm so excited! This is the first time my bmi has been in the "normal" range! I've always been underweight, but a lot of my gastro issues are doing better and I quit taking birth control which really helped me gain some weight finally!

[fiona-jane]

i naturally have a lot of muscle, and i've been training in parabadminton over the last 6 months and my muscle mass has clearly gone up as you can see it (i also build muscle quite easy, which is fab considering i have EDS and need all the muscular strength i can get to hold my joints together). i see a dietician cos i have gastroparesis and struggle to eat solids and now all patients on special foods need to see a dietician every 4 months.... i always dread my appointments cos they always weigh me and i'm always considered rather overweight (even when i looked like a little walking skeleton covered in skin) as they go by BMI scores. and i've not had a single dietician thats taken into account my muscle mass, and the fact i have a large frame size..... they just go by the number.

i'll never hit my 'scientifically determined weight' as its easily 20kg lighter than i can get without dying. again, this is not taken into account by them. and as i'm extra chubby at the moment i have to fight to get the ensure drinks i need cos the dietician says they're only for those who are loosing weight.... ignoring the fact that if i stop the ensures my weight plummets (last time i had to stop i lost almost 2 stone in just over a week cos i had practiclaly no calorie intake) and that i'm already malnourished so i get super sick when my weight drops off like that, and she thought i was making up the research that shows that many gastroparesis patients only need about 60% of their predicted calorie intake, which means many are overweight cos its hard to get all your nutirents in that few calories (for me thats only 800 calories a day). i've been technically starving since i was born but body had put itself into starvation mode quite quickly and as i've been there for 30years theres no chance of me getting out of it by eating more (last dietician didnt believe this and made me promise to eat 1000 calories a day. hence why i'm fat now.). i have a copy of that research paper on my computer- if anyone wants it i can email it, just send me a pm

arrrggghhh! why do so many medical type people have zero common sense?

oh and i've recently had my parents whinging that i've put on weight and look awful, totally disgusting, which i know i dont look. i look fine. and they didnt notice that i'm the healthiest i've been in years. they want me back to that skinny malnourished girl that i was in 2007. when my bmi was around 24.5 (even then i was borderline fat- you could count my ribs i was so thin). i never want to feel that sick again so i'd rather be fat!

ooh, essay..... sorry!

fi

[CC101]

I dont mean to take over this thread, but would somebody please be able to explain to my why (if it does at all), does weight loss affect POTS? A couple of times when someone has posted about their symptoms getting worse, one of the questions that comes up is "have you lost weight recently?".

I don't know about anyone else.... but when I first got sick I dropped 25 lbs without trying and I just had a baby. One week after my daughter was born I was in my regular clothes and eating cheese cake. I remember my husband telling me that I looked like an "Ethopian"- sorry if that is not pc this was 11 years ago and as children of the 80's we are imprinted with the memory of first learning about people starving in Africa.

Anyway- I have hyperadergenic pots. When I have a flare or am not on meds I can't keep weight on. This must be true for everyone with this kind of pots b/c when your body is working so hard you burn a ton of calories. Also Hyper pots people tend to have bathroom issues because of those stress hormones.

Treating my pots has made my weight "normal" although I "feel fat" from being thin so long. I hope this makes sense. I know if I went off my meds ( And didn't die HAHA) I would lose weight really fast. "Regular" POTS people may be different.

Kayjay, your case is like mine to a TEE! I work a very active job at Caterpillar in the warehouse, on my feet 8 hours of the day doing strenuous work. I lost weight when I was LAID OFF and was doing nothing close to what I was at work. You figure it would have been the opposite. I Too lost around 25 pounds and everywhere I went people who have always known me always commented on it. I Hated it. I have always had a little curve to me and did not like my rail thin appearance. I also experienced Palor (paleness) .. mostly in the face. I have gained 20pounds back after being on my beta blockers and I know that if I were to go off of them the weight would fall back off. As I was 25 pounds lighter for about 2 years, I too am feeling the "fatter" effect but tell myself I am much happier like this than I was before my beta blockers. I feel that at least my body looks normal again. As for the pailness, I have gained some color back in my face but still not all. I have also been diagnosed with IBS. It is crazy that POTS can affect so many things.

[dpeeps]

I lost about 15 lbs during the first major flare, but now that my symptoms have stabilized, my weight is right in the middle of the normal range.