Celiac Disease And Neurological Disorders

[lapetit8]

Hi Everyone,

I was reading through some past messages on this board and noticed that a lot of people seemed to have Ehlers-Danlos syndrome (hypermobility).

Ehlers-Danlos syndrome (EDS) is commonly associated with other neurological disorders such as Chiari malformations, Syringomyelia, Spinal Stenosis, Cranio-Cervical Instability, Spinal Cord Tethering. In fact, all of these neurological diseases can be related.

I have a Chiari type 1 malformation (formerly known as an Arnold Chiari Malformation - type 1) and my doctor who is very prominent in the study of Chiari 1 malformations and related disorders has noticed that a large percentage of his patients have Celiac Disease. A majority of his other patients seem to have IBS or other GI problems. So, my doctor is currently doing a study about the relationship between these disorders.

I was curious how many people on this message board have one or more of the above mentioned disorders? When I asked how many people have Celiac Disease on a Chiari messageboard I got an overwhelmingly positive response.

[DonnaD]

I had never heard of any of the conditions so I did a quick google and was surprised to find that it could be linked to fibromyalgia and a dowagers hump (I'v got both)

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I had an MRI of my shoulder only when they were trying to find out if I needed surgery for the impingement.(I didn't) and I'v also had radiofrequency treatment under x-ray to burn off the nerves in my cervical spine (neck) and mid thorasic region (bra strap level!). That wasn't much help either. The trouble with fibro is the symptoms are the same as many other illnesses.

Finding yet another condition linked to gluten would not surprise me at all!

I will watch this subject with interest.

[ravenwoodglass]

Hi Everyone,

I was reading through some past messages on this board and noticed that a lot of people seemed to have Ehlers-Danlos syndrome (hypermobility).

Ehlers-Danlos syndrome (EDS) is commonly associated with other neurological disorders such as Chiari malformations, Syringomyelia, Spinal Stenosis, Cranio-Cervical Instability, Spinal Cord Tethering. In fact, all of these neurological diseases can be related.

I have a Chiari type 1 malformation (formerly known as an Arnold Chiari Malformation - type 1) and my doctor who is very prominent in the study of Chiari 1 malformations and related disorders has noticed that a large percentage of his patients have Celiac Disease. A majority of his other patients seem to have IBS or other GI problems. So, my doctor is currently doing a study about the relationship between these disorders.

I was curious how many people on this message board have one or more of the above mentioned disorders? When I asked how many people have Celiac Disease on a Chiari messageboard I got an overwhelmingly positive response.

I am an Ehlers Danlos person and also wondered if there might be a connection because it seems in my family that the ones who are the most mobile are also the ones most severely effected by gluten. The family members with only 'mild' presentations of the hypermobility also seem to be gluten intolerant rather than full blown celiac and wondered if there was a connection. I will be interested in what his research shows, keep us posted if you can.

[Canadian Karen]

Wow! This really threw me for a loop!

I have always had a bad back that "gives" out, and in my early 20's after an MRI, was diagnosed with spinal stenosis. I used to get steriod injections in my spine every six months before they stopped doing it up here (apparently, the doctors were frying their hands as you have to be on an x-ray table while they are putting the injection into the spine......)

Anyway, the doctor back then told me that if someone my age had spinal stenosis, it usually is due to a birth defect. I found that interesting as my grandmother also has spinal stenosis, my mom and sister both have bad backs and also my mom's firstborn was born with spina bifida and died at nine months of age.

I never thought is was linked in any way to the celiac disease though.....

Karen

[debmidge]

so spinal stenosis and spina bifida could be related to celiac? Am I understanding this correctly?

[Canadian Karen]

Hi Everyone,

I was reading through some past messages on this board and noticed that a lot of people seemed to have Ehlers-Danlos syndrome (hypermobility).

Ehlers-Danlos syndrome (EDS) is commonly associated with other neurological disorders such as Chiari malformations, Syringomyelia, Spinal Stenosis, Cranio-Cervical Instability, Spinal Cord Tethering. In fact, all of these neurological diseases can be related.

I have a Chiari type 1 malformation (formerly known as an Arnold Chiari Malformation - type 1) and my doctor who is very prominent in the study of Chiari 1 malformations and related disorders has noticed that a large percentage of his patients have Celiac Disease. A majority of his other patients seem to have IBS or other GI problems. So, my doctor is currently doing a study about the relationship between these disorders.

I was curious how many people on this message board have one or more of the above mentioned disorders? When I asked how many people have Celiac Disease on a Chiari messageboard I got an overwhelmingly positive response.

Her doctor I think was the one mentioning he noticed a link between those malformations and celiac disease. Although, I was the one who mentioned spina bifida in my post (my mom's firstborn died from it). But I do find it interesting that these "birth defects" happen to run in my mom's side of the family - and it is this side of the family that I am certain that the celiac disease comes from. Both of my mom's sisters suffered serious intestinal problems (they were both down to 90 lbs. most of their lives), both had osteoporisis (one of them was so bad that she was bedridden for the last 5 years of her life.....). Yep, I am certain that this is where in my family tree that I got it from.....

BTW, Debmidge, how's hubby?

Hugs.

Karen

[nettiebeads]

Hmm, another link in my chain of "coincidences" that make me think my mother is where I got my celiac. She has spinal stenosis and a very pronounced dowagers hump - she used to be 5'10" but now has to look up to me - she's practically bent over in half and is in a wheelchair. How she's lived to 84 I don't know - except for being a plain ole' stubborn Swede, I can't think of any other reason.

Annette

[sillymomx3]

I have Ehlers-Danlos and Celiac disease. I have three children, my oldest has celiac, my youngest has EDS.

My maternal grandfather (had), mother, sister, niece have Ehlers- Danlos. My father had celiac disease. My mother, sister, niece were all negative for celiac.

Ehlers-Danlos, although it has neurological effects is a connective tissue disorder, a collagen abnormality.

Usually the skin is involved in Hypermobility EDS (type 3), there is easy bruising, a velvety or doughy feel, joint dislocations, and chronic pain. Alot of families (mine included) have symptoms that overlap into other types of EDS.

I suspect that several of my dad's siblibgs had celiac as well. They were all very small and had terrible stomach/colon issues.