Ehlers Danlos Syndrome Question...Please Help!

[Sambina_88]

Hey guys, on april third of this year, I was just diagnosed with ehlers danlos syndrome. My docotr asked me if I could touch my thumb to my wrist, checked how strtchy my skin is, if I could shake hand with my self behind my back, if I have any stretch marks, etc...Well, I had a 3 page list of symptoms and she actually believed me, actually read the list, and did a clinical diagnosis.

Anyway, one of my symptoms was the fact that my clothes keep getting looser. Now, on the scale, it says I weigh the same, but my clothes are visibly looser, not a dramatic amount, but loose enough where I can see that something is going on. I told her about my rotten egg burps and the fact that my celiac levels and WBC count was slightly elevated, and the fact that my blood pressure keeps getting lower. Last time I went it was 98 over something. Anyway, she thinks I could also have gastroparesis and that I should get a gastric emptying scan done as well as an endoscopy. I've seen a gastroenterologist and he thinks I should get one too to rule out celiac. Sh also wants me to get an x-ray of my cervical, lumbar, and thoracic spine because she suspects degenerative disc disease.

Well, I was reading about EDS and I read about a connective tissue called adipose tissue which is body fat? Well, in EDS, isn't that where your connective tissues are destroyed or damaged? And if that's the case, couldn't the EDS be causing damage to my adipose tissue, making my body fat lesser? And if this is happeneing, what can I do to to treat it or fix it? I know there's nothing you can really do for EDS except maybe exercising or something, but I really want my clothes to fit normally again. My doctor said that I have the classical type. I was having eye problems, gastrointestinal problems (that many people mistook for IBS), Hot flashes, muscle aches, joint pain, nausea, etc...Various things.

Thank you for any help you can give me. I'm also a 20 year old female if that helps you any.

[Rachelinpain]

can't help you because i have ALOT of body fat, but i do have EDS.  i think you should definately follow up with a GI because with EDS you can get lots of GI problems some that can be life threatening.  EDS does not eat away at adipose tissue (i wish it did).  although adipose is a type of connective tissue it is not the kind that EDS effects.  i would say the weight loss seems to be related to celiac, especially if you have tested positive for the disease.  i would try eliminating all the gluten from your diet (basically any thing with weat protein) and see if it improves your symptoms.also I would have a genetic test done to determine if you indeed have classical EDS.  some variants can be lethal if they are not followed properly and will effect whether or not you decide to have children since you may pass it on.  you should definately be seeing a cardiologist and GI doctor at the least.  good luck

[Sambina_88]

Thank you for responding. I really appreciate your advice. Hope all is well with you as well =)