Hypermobile Joints - Ehlers Danlos

[DelphicDragon]

Christi- One line in your post really struck me.

My MGF died of spontaneous organ rupture at 49.

If a person has died of spontaneous organ rupture, you NEED to be tested to Vascular EDS (Type 4). This is the most deadly type of EDS and one only needs a skin biopsy to determine if they have it or not.

I have Ehlers-Danlos, presumably type 3, however because my aunt suffered a uterine rupture, I need to have the skin biopsy done. There were originally 12 types of EDS, it's now been reduced to 8, but there is a large amount of overlap among the symptoms and different people in the family exhibit different symptoms. PLEASE, PLEASE get yourself and your family tested for Vascular EDS. The peace of mind is worth it.

This is a really good website. www.ednf.org

Sara

[paw]

Open Original Shared Link This is a good site for Ehlers Danlos, it is free, they have a message board and it is located in England. The site in USA is a pay site only. I think medical information should be available to us for free. (Also people on the site I posted say they don't know what they are paying for, there is less information available at the US site than the one listed above.)

[givingthanx]

It is called "hypotonia." Do an Internet search on it. It is accompanied by late developmental markers, meaning that if you have it, you walk late. Usually people talk late too and are socially awkward, at least when they're younger.

There is a link. Do an Internet search on celiac + hypotonia, and you will see the link. People with celiac sometimes have hypotonia. I believe the celiac causes the hypotonia, and you are born with it.

Having hypotonia usually signals that you have some other condition - possibly celiac, possibly cerebral palsy, SAD, or Ehlers-Danlos. There are any number of conditions you can have if you have hypotonia. Some people never figure out the underlying condition.

If you do a search on "hypotonia," you might find many explanations for weird things, for certain quirks you had when you were a kid and maybe still have. I sure did.

I have "mild hypotonia." Those with moderate hypotonia usually require some physical aid, such as a walker or leg braces. People with severe hypotonia can't walk or may require help with breathing.

You can have hypotonia in your whole body, or you can have trunk-based hypotonia, which would mean you may have an easier time with your neck and face. Babies with hypotonia in the face have trouble nursing, and they have real trouble learning to talk because their mouths physically have trouble forming the words.

I've been in several car accidents and was never hurt. I had no tension afterward - even the time I bounced up and cracked the windshield and then bounced up and broke the rear view mirror off with my head. This looseness was from the hypotonia. I believe the dislocations are common also with hypotonia.

[munnky]

This is sincerely freaky to me. I have EDS type III (hypermobile type) as does my mom. I just today started reading up on gluten intolerance as a possible trigger for my flare-ups of fibromyalgia (I tested neg blood test for celiac disease a few years back, but now I'm wondering).

Today was my first day of gluten free eating... I don't know what to do next. Any suggestions?

Thanks,

Tori

[givingthanx]

This is sincerely freaky to me. I have EDS type III (hypermobile type) as does my mom. I just today started reading up on gluten intolerance as a possible trigger for my flare-ups of fibromyalgia (I tested neg blood test for celiac disease a few years back, but now I'm wondering).

Today was my first day of gluten free eating... I don't know what to do next. Any suggestions?

Thanks,

Tori

I suggest you go to www.enterolab.com and read about their tests. A lot of people with celiac disease are really happy with them because apparently their tests are more sensitive and can diagnose people who may not show positive on traditional tests. Good luck!

[ravenwoodglass]

This is sincerely freaky to me. I have EDS type III (hypermobile type) as does my mom. I just today started reading up on gluten intolerance as a possible trigger for my flare-ups of fibromyalgia (I tested neg blood test for celiac disease a few years back, but now I'm wondering).

Today was my first day of gluten free eating... I don't know what to do next. Any suggestions?

Thanks,

Tori

Hi Tori,

I would suggest sticking with the diet strictly for at least a couple of months. Learn all you can about what to look in not just food but everything in your world. I suffered greatly because I kept coming up negative on the blood tests. No doctor ever told me to try eliminating gluten for a while, they just said I should be happy it was negative because I wouldn't be able to eat anything. Idiots came very close to killing me.

For some the recovery is such that after a couple months gluten free the difference is obvious. For myself I never had another migraine, my fibro was totally gone and depression also within a couple of months. My D was gone in 2 weeks. Unless I get glutened.

I got a good dose a couple weeks ago and am still having to strap my ankles and feet to keep from dislocating in my sleep. For me gluten definately does something either with the ligaments or tendons or just fluid retention making things more lax.

The diet is hard at first and it is best to stick with as much whole naturally gluten free unprocessed food as you possibly can. After you have been gluten-free for a bit and are feeling better then add more processed stuff in carefully, one thing at a time.

You have come to a great site for information and for support.