Ehlers-Danlose Syndrome

[LionessMom]

Type 3. anybody here have it? wanna talk?

my son and I were diagnosed last week. my younger children will be formally diagnosed when they turn 5. I plan on having them give my DSD a look too. but like the doctor said, you dont usually see yellow cars until you are looking for them.

we also have fructose intolerance. i know nobody else here would have both things.

[Panserbjorne]

dh and dd have EDS-hypermobility type.  they also have celiac disease. 

[LionessMom]

i have read that it is common for EDS people to have food intolerances and celiac disease bc of the poor tissues structure in their guts.

It's nice to meet you!!

does your DH and DD also have any dysautonomia? my DS had chest pains and is being sent for an echocardiogram...

[Panserbjorne]

Originally Posted by LionessMom 

i have read that it is common for EDS people to have food intolerances and celiac disease bc of the poor tissues structure in their guts.

this is true.

It's nice to meet you!!

you as well!

does your DH and DD also have any dysautonomia? my DS had chest pains and is being sent for an echocardiogram...

yup, and we also have the double whammy of chronic lyme.  But we've had quite a few scares wrt this.

have you looked at the thyroid connection yet?  The EDS was a blip to me because I was already focusing on the thyroid issues (total crapshoot too, as the test results were inconclusive.)  I think that's something that every person with EDS (not to mention celiac) needs to look at.

My dh's pain level improved significantly  with dessicated thyroid.  I had been working on connective tissue stuff for years.  It always helped quite a bit, but I could never back down and it didn't seem to make as much of a difference for either one of them as it should have.  Addressing the thyroid (which is potentially the keystone here) really did.  The EDS dx came later as I said (post lyme/celiac/thyroid/adrenal insufficiency) and by that point we already had everything in place.

[LionessMom]

we have done real well on a fructose/fructan free diet. we cut out all sugar except dextrose. we use cell salts every day. love them! we add dextrose as a sweetener. we are going to cut out wheat as well next week when I get paid (gotta buy new stuff).

now DS has ketosis. the doc said it would be expected bc he was fasting. i said no he wasnt, and now they are concerned. i am wondering if it could be glycogen storage disease or some other mitochodrial issue. his albumin was high too. but only 1 point high.

what kind of thyroid thing does you dh have going on? my mom thought she had thyroid issues at one time but it was soemthing else and now she has gastroparesis. i am going to research more on adrenals and what not.

none of us weigh much. DS and DD1 have very little body fat. DD1 just started gaining a butt after ebing on the diet for 4 weeks. She feels heftier and has more round parts. but DS and I are losing weight rapidly. i am down almost 40 lbs. DS gets chest pains a lot too. They think it is the connective tissue but sometimes his heart skips a beat.

the doctors get mad at me bc i dont believe them, i have to go home and research it myself. they tell me i am wrong then have to come tell me i am right after they do the tests. i tell them what tests i want them to do, they get all offended bc i didnt go to medical school. all i do is research on the internet. doesnt explain how i am connecting all the dots faster than they are. sigh.

[Panserbjorne]

start here for the thyroid stuff-if often doesn't show up on testing:

http://www.21centurymed.com/?page_id=12

It really seems to be something that ties autoimmune stuff together.  Dh's adrenals were awful, and tested borderline addison's.  If he didn't pull back he would have been hospitalized.  It got better, but the adrenal stuff didn't improve until the thyroid was addressed, which it wasn't because his thyroid tested perfectly.  Also, there's the gluten issue where the antibodies mimic thyroid antibodies....gluten can really mess with your thyroid.  I'd really suggest going off it sooner rather than later.

What is your ds's diet like?  People can move in and out of ketosis very quickly-was he tested more than once?  Are you using ketostix at home?

[LionessMom]

they just tested that one day. he had eaten a bowl of oatmeal with butter and dextrose for breakfast, then half his lunch of rice and turkey, cheese and pickles, then came home and ate a slice of bread with butter. then had the blood draw 2 hours later. i just got the test results by phone yesterday so hopefully they will set me up with ketone sticks. he lost 4 lbs on 2 weeks. he looks ill too, poale face and under eye swelling. we eat meat but not any more than usual and we have lots of carbs, potatoes, rice, corn noodles, potato chips, crackers, oatmeal, milk, yougurt, etc. and at night before bed they all drink a milkshake with cornstarch and yogurt in it. sometimes an egg.

i will check out that link :)

[Panserbjorne]

had he recently been ill?  Flu, strep throat, anything like that?

Hopefully you get some answers, but you're right...that does warrant attention.

[LionessMom]

he hadnt had a fever or anything recently but he has always had diarrhea. and the last week was no different. it is hard to tell if he got a stomach virus or not bc he always feels like that.